Archive for the ‘Adrenals’ Category

PCOS & Lyme: My Story

***For those of you who have read anything I’ve ever written, you understand that by Lyme, I actually mean MSIDS or multi systemic infectious disease syndrome – as research has shown most of us are infected with far more than just borrelia, the causative agent of Lyme Disease:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  Key Quote:  

“Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

Ticks are coinfected – logic would indicate we are too:  https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/

And this great article shows that in fact we are:  https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

Borrelia alone is a formidable, complex, pleomorphic bacteria(ish) that shape shifts to avoid medications and forms biofilm to evade our immune systems.  There are 300 strains and counting of borrelia worldwide, and 100 strains and counting in the U.S.  Current CDC Two-tiered testing tests for ONE strain.  So when I write about Lyme Disease, I mean the whole ball of wax.  Research, BTW is abysmal on all of this and dominated by what I call The Cabal.  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/,  and https://madisonarealymesupportgroup.com/2016/11/29/spider-attacks-cdc/,  https://madisonarealymesupportgroup.com/2017/01/19/cdc-denies-to-downplay-lyme-epidemic/

OK, now that we’ve cleared that up….

My story

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Around the same time our dog Bucky (Go Wisconsin Badgers!) tested positive for Lyme and we finally got to the bottom of my husband’s bizarre issues (he too had it), I suffered from severe pelvic pain. The pain appeared to originate in my ovaries but radiated everywhere leaving me hunched over like an old woman, holding my gut.  I was scheduled to undergo the knife for a small epigastric hernia but at the last minute the surgeon recommended an MRI which revealed two deflating cysts. No surgery needed, I continued to suffer in silence with pain that honestly felt like someone put a shot gun up my vagina and pulled the trigger.

In January one of my knees swelled up to twice its size, became red and hot to the touch, and I developed a fever. My old retired doctor told me I had “Washer Woman’s Knees”  from scrubbing the floor (You can’t make this stuff up), so I continued to suffer in silence. Six months later I saw flashing lights, had racing, erratic heart beats, insomnia, memory loss, migrating joint pain, colitis, severe occipital headaches, and a stiff and painful neck and spine, and frankly, stuff I’ve blocked out. I could no longer deny I had Lyme/MSIDS. The infamous quote by Dr. Jemsek,

“You either have 20 diseases or you have Lyme Disease,” certainly held true for me.

I diagnosed both of us by watching the documentary Under Our Skin, the best primer on Lyme Disease on the market.  http://underourskin.com

I had done my reading by this point with my husband in Lyme/MSIDS treatment, and I got to a LLMD (Lyme literate doctor trained by ILADS), and tested positive on the IgeneX Extended Western Blot for Lyme.  Please see this wonderful presentation by IgeneX at our Lyme Support Group to learn why their testing is far more sensitive than the current CDC two-tiered testing that most GP’s use and that misses over half of all cases:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

My LLMD told me to save my money on co-infection testing as he felt the testing was that poor and that his treatment would automatically treat co-infections. Of course, the rest is history, with over 4 years, and counting, of an intense, painful and expensive pulsed antibiotic regimen with IV blood ozone and UV light, herbs, IV vitamin C and other minerals, magnet therapy, chiropractic help, supplementation with numerous things including hormones (anabolic), LDN, and other modalities – to the tune of $10-$15 K out of pocket each year per person for over 4 years and counting.  But, I often wonder …

Would the story have turned out differently had I been aware of the very real probability that Lyme/MSIDS can be spread sexually?

Looking back, many symptoms were there that I intentionally blocked out as I was more concerned with my husband who appeared far worse than me at the time.  I also didn’t know what I know now. I find this tendency of one partner ignoring symptoms due to the seemingly more severe symptoms of the other partner to be a common thread in couples infected with Lyme/MSIDS.

I first became aware of the possibility of Lyme/MSIDS being sexually transmitted years ago when I started looking up PCOS (polycystic ovary syndrome) and Lyme. I discovered a hidden world of women who had severe pelvic pain, PCOS, and a Lyme diagnosis. And while I didn’t have a definitive PCOS diagnosis, the symptoms were quite similar.

I wasn’t alone!

Here’s just a few sites:

http://www.soulcysters.net/showthread.php/142199-Lyme-Disease (Soul Cysters – gotta love the name!)

http://www.healingwell.com/community/default.aspx?f=30&m=2588121

http://www.lymeblog.com/modules.php?name=News&file=article&sid=1234

http://thehealthyapple.com/pcos-polycystic-ovarian-syndrome/

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=043160;p=0

https://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.html   According to the U.S. Department of Health and Human Services, PCOS is a common health problem in the ovaries caused by imbalanced reproductive hormones. Essentially the egg may not develop or be released normally. It can cause irregular menstrual periods and lead to cysts and infertility.

http://www.pcosfoundation.org   Some other symptoms include hair where men usually have hair, acne, thinning of hair, weight gain, darkening of skin, skin tags, depression and anxiety, decreased sex drive, and an increase in stress levels. Experts feel genetics, and high levels of androgens and insulin play a role. And while there is no single test to diagnose it, doctors typically perform physical exams including a pelvic exam with an ultrasound as well as blood tests looking at male hormone levels, thyroid, cholesterol, and test for diabetes. Once other conditions are ruled out patients may be diagnosed with PCOS if they have at least two of the following:

*Irregular periods, including periods that come too often, not often enough, or not at all
*Signs of high androgen levels – extra hair growth on face and body, acne, thinning hair
*Higher than normal blood levels of androgens
*Multiple cysts on one or both ovaries

I want to point out that many of these symptoms overlap with Lyme/MSIDS.

Numerous coinfections cause skin tags, many patients gain weight, lose head hair, have bizarre menstrual issues, experience anxiety and depression as well as can’t tolerate stress, and could care less about having sex.

There’s a hidden world of women with a LD diagnosis who also have pelvic pain and PCOS-like symptoms.

https://www.womensinternational.com/newsletter/article_hormones_lymes.html  An article put out by my favorite compounding pharmacy discusses numerous issues with hormones and LD including adrenal depletion, low DHEA levels contributing to low testosterone levels, thyroid issues, and cortisol issues. Nearly every Lyme/MSIDS patient I know is severely low in magnesium which is needed in over 300 biochemical reactions in the body.

While many LD male patients have told me their testosterone levels are through the basement floor, I haven’t heard from women about their hormone levels. Could LD/MSIDS cause inflammation in the pelvic area caused by borrelia? Could it alter/deplete hormone levels?

In this informative video, Dr. Phillips takes sexual dysfunction caused by Lyme/MSIDS head on:  https://madisonarealymesupportgroup.com/2018/12/22/s-e-x-lyme-msids/  Findings are:

  • painful testicles with recurrent Bartonella
  • Prostatitis is common, where the prostate becomes swollen, tender, and inflamed
  • anal and/or vaginal fissures (little painful cracks)
  • libido issues
  • Vaginal dryness
  • Psychological aspects
  • Low Testosterone levels
  • Extreme fatigue
  • Sexually induced severe headaches
  • A Pavlovian response in that if sex causes pain, it trains you to no longer desire it
  • Pre-menstral flares
  • Balanitus, a painful swelling of the foreskin, or head of the penis. Dr. Phillips believes this to be the result of an undiagnosed infection.  He’s also seen it as a herxheimer reaction. It can take time to resolve.

Once you go down the rabbit hole of gynecological symptoms of Lyme/MSIDS, the question of sexual transmission begs to be asked.

According to the CDC, Lyme is not sexually transmitted, despite being a spirochete that can burrow through any tissue and organ and despite being a cousin to Syphilis (T. pallidum). They also claim that the sole perp is the dastardly black legged tick.

I believe both of these tenants to be myths and time will reveal a much broader and complex picture.

http://www.medicaldaily.com/lyme-disease-contagious-clues-hint-it-may-be-sexually-transmitted-disease-267964   Yet, Medical Daily reports a 2014 study in the Journal of Investigative Medicine that found Lyme (B. burgdorferi) in vaginal secretions of all women with Lyme and in the semen of half of the men with Lyme. One of the heterosexual couples with Lyme had the identical strain in their genital secretions.  http://www.prweb.com/releases/2014/01/prweb11506441.htm

https://f1000research.com/articles/3-309/v3  Here is the updated article and the fact that 2 referees approved and 2 did not approve of the rigor of the study.  In essence, it was a draw but everyone just proclaims it isn’t a STD.

Lead author Marianne Middleveen stated, “Our findings will change the way Lyme disease is viewed by doctors and patients.”

That was in 2014, and……well….crickets

But, recently (May, 2019) a case study hot off the press showed live spirochetes in a genital lesion that could be grown in special culture broth:  https://madisonarealymesupportgroup.com/2019/05/11/lyme-found-in-genital-lesion-sexual-transmission-studies-screaming-to-be-done/   Researcher Marianne Middelveen stated,

“The presence of live spirochetes in a genital lesion strongly suggests that sexual transmission of Lyme disease occurs,” said Middelveen. “We need to do more research to determine the risk of sexual transmission of this syphilis-like organism.”

This case study supports the 2014 pilot study and should be noticed by the world.

https://aspenn.com/blog/could-lyme-disease-be-sexually-transmitted/   Bizzarely, I found in this 2011 article a statement in quotations supposedly by the CDC which states,

“Conversely, we find no study supporting that sexual intra-human Borrelia burgdorferi transmission does not occur. Inferential data strongly suggest the possibility of human sexual transfer.”
“This data come from sound veterinary studies, the finding of Borrelia burgdorferi in human semen and breast milk, and by similarity to Treponema pallidum where sexual transfer is abundantly documented. Our clinical experience strongly suggests that predictable, possibly inevitable Borrelia burgdorferi transfer between sexually active couples occurs.

The article didn’t have a bibliography so I do not know where they found the CDC quotes.

Here’s what the current CDC website states as of 2019: https://www.cdc.gov/lyme/faq/

“There is no credible scientific evidence that Lyme disease is spread through sexual contact.Published studies in animals do not support sexual transmission (Moody 1991; Woodrum 1999), and the biology of the Lyme disease spirochete is not compatible this route of exposure (Porcella 2001). The ticks that transmit Lyme disease are very small and easily overlooked. Consequently, it is possible for sexual partners living in the same household to both become infected through tick bites, even if one or both partners doesn’t remember being bitten.”

Obviously the CDC changed their story at some point which is par for the course.

Regarding breast milk the CDC states as of 2019, 

“There are no reports of Lyme disease being spread to infants through breast milk. If you are diagnosed with Lyme disease and are also breastfeeding, make sure that your doctor knows this so that he or she can prescribe an antibiotic that’s safe for use when breastfeeding.”

Please notice the dates for all those studies (1991-2001).  They have inches of dust on them, yet the same rhetoric is given:  Lyme is not a STD, is not spread congenitally or via breastmilk despite vastly increasing numbers worldwide & some very credible science.

Many doctors and researchers disagree with the CDC.

Dr. Jones, a highly respected LLMD who has treated over 12,000 children from all over the world, believes in sexual, congenital, and breast milk transmission:  https://www.lymedisease.org/wp-content/uploads/2014/08/Image21-Gestational-Lyme-Studies.pdf  In this pdf there is a table of symptoms in children suspected of contracting Bb congenitally at or slightly after birth.

Dr. Jones spoke at the 2018 ILADS convention and his talk is summarized here:  https://madisonarealymesupportgroup.com/2018/11/11/gestational-lyme-other-tick-borne-diseases-dr-jones/

Here’s 33 years of documentation of congenital Lyme collected by a Canadian nurse:  https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/  Due to pressure and proof from ticked-off moms of sick kids, Canada now recognizes congenital Lyme: https://madisonarealymesupportgroup.com/2018/10/05/canada-acknowledges-maternal-fetal-transmission-of-lyme-disease/

The U.S. didn’t seem to get the memo

Here’s another Bibliography on Gestational Lyme & via lactation:  https://www.lymedisease.org/wp-content/uploads/2014/08/Image22-Gestational-Lyme-Bibliography.pdf

https://www.canlyme.com/wp-content/uploads/2017/03/CDC_17.pdf  From the CDC:  Untreated, Lyme disease can be dangerous to your unborn child.  Lyme disease that goes untreated can also cause you to have brain, nerve, spinal cord and heart problems.”  They also say there are NO reports of LD transmission from breast milk, which LLMD’s have found to be false (practitioners trained by ILADS – the International Lyme and Associated Diseases Society).

https://www.ncbi.nlm.nih.gov/pubmed/7648832?dopt=Abstract  Bb DNA found in urine and breast milk of Lyme patients.  

https://www.researchgate.net/publication/19966391_Borrelia_burgdorferi_infection_in_Wisconsin_horses_and_cows  Here we see borrelia found in colostrumblood, synovial fluid, and urine in cows and horses way back in 1988 from our very own Elizabeth Burgess, a UW researcher.  Go Wisconsin!  Burgess also found:

This woman, bless her heart, attempted to warn the world, but nobody was listening.

http://www.anapsid.org/lyme/bach.html  Gregory Bach, DO, International Scientific Conference on Lyme Disease, April 2001

“Lyme spirochetes/DNA have been recovered from stored animal semen. Recovery of spirochete DNA from nursing mother’s breast milk and umbilical cord blood by PCR (confirmed by culture/microscopy), have been found in samples provided to my office.

Surprisingly, initial laboratory testing of semen samples provided by male Lyme patients (positive by western blot/PCR in blood) and the male sexual partner of a Lyme infected female patient were positive approximately 40% of the time. PCR recovery of Lyme DNA nucleotide sequences with microscopic confirmation of semen samples yielded positive results in 14/32 Lyme patients (13 male semen samples and 1 vaginal pap).  ALL positive semen/vaginal samples in patients with known sexual partners resulted in positive Lyme titers/PCR in their sexual partners. 3/4 positive semen patients had no or unknown sexual partners to be tested.”

https://www.lymedisease.org/lyme-basics/lyme-disease/children/  Another link with helpful information mostly regarding infection in children but also has links on pregnancy and transmission.

https://www.scientificamerican.com/article/mothers-may-pass-lyme-disease-to-children-in-the-womb/  This informative 2014 article gives case studies of numerous medical practitioners showing interesting findings:

“I’ve seen women who were infected long before they were pregnant and I’ve checked their children – the first-born is in good shape, but the third-born is badly infected,” Kriz said. I’ve seen it in several families.”

And, a woman with symptoms all her life who was finally diagnosed with Lyme possibly contracted in utero stated,

“All of the sudden, all my little quirks – the things that made me, me – those were the disease,” she said. “It wasn’t typical Lyme symptoms, it was little things, like severe anxiety, irrational fears, a poor memory.  I was bad with directions. I had a foggy brain. I thought everyone deals with these things.”  And, “Certainly, having a foggy brain in middle school and high school does not do a lot for your self-confidence,” she said. “It’s hard to feel confident in yourself when you can’t rely on your brain to do what you want it to do. It’s hard to make the commitment to decide what kind of career you want, or anything else.”

https://madisonarealymesupportgroup.com/2018/02/26/transplacental-transmission-fetal-damage-with-lyme-disease/   CONCLUSION: BORRELIA BURGDORFERI, not only transmitted by the tick bite, is TRANSMITTED by sexual contact, fluids and can also colonize the fetus of pregnant women if there is no effective treatment able to eradicate it during the same. And it is not exclusive to the Northern Hemisphere. The BORRELIA is also in the Southern Hemisphere.

https://ticktalkireland.wordpress.com/lyme-links/transmission/  This link shows everything from Alan McDonald’s finding of borrelia in a chronically infected male’s testicle in an autopsy to survival of borrelia in blood products to an ancient 1986 study by none other than the NIH of:

uninfected mice becoming infected with Bb within 42 days after being put in a similar cage with infected mice.  

Please pause here.  Let your eyes fall back.  Mice infected just by close proximity with infected mice.

http://www.seranogroup.org/index.php/site/entry/why_no_ticks/  This link also states it is well established that Bb is found in urine and that Willy Burgdorfer, the discoverer of Bb, got Lyme from infected rabbit urine when it got into his eye.  

And somebody went to a boatload of work collecting animal transmission studies on Bb: http://www.lymerick.net/Transmission-Bb-contact.htm  I found this collection of studies years ago and am happier than a lark it’s still available.  Please read the variety of ways Bb is spread in animal studies.

And last but not least, I dug up this gem from 2005 of Lida Mattman PhD, who was an expert on spirochetes and who wrote the textbook on cell-wall deficient forms: https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/  Excerpt:

Mattman isolated living Borrelia spirochetes in mosquitoes, fleas, mites, semen, urine, blood, plasma and Cerebral Spinal Fluid.

“We get to the ways that burgdorferi is transmitted. I laugh at all this stuff about looking for the Woodtick. That’s so ridiculous because most of the people who get Lyme disease have never heard or seen a tick. We know now it’s in tears and people wipe their eyes and then you shake hands with them. Or we don’t laugh so hard about the physician we had in the hospital who wouldn’t touch the doorknobs in the hospital without taking his white coat and handling the doorknob through a coat. Maybe he wasn’t so insane after all.

So we think this is spread by what is called fomites (an inanimate objector substance that is capable of transmitting infectious organisms fromone individual to another) which is the pencil in the bag as you pick up a pen to write a check or anything you handle. So it’s in urine and in tears and it’s also spread by mosquitoes and who hasn’t had a mosquito bite?  We’ve tested the mosquitoes in Michigan and sure enough they can carry the Lyme spirochete.” 

Another woman trying to warn us again.  Crickets….

The real head-scratcher of course is why isn’t the CDC/IDSA/NIH taking all of this into account?

Let’s suffice it to say the polarization continues unabated in the world of Lyme/MSIDS.

But, you are duly warned.

Lastly, it is my firm opinion that the science will only be settled on these issues when the tsunami of the infected do the work.  A perfect example is when independent tick researcher John Scott and his wife Kit, both infected for decades, rang the bell on how climate change has nothing to do with tick movement and the increasing Lyme cases:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/

“The climate change range expansion model is what the authorities have been using to rationalize how they have done nothing for more than thirty years. It’s a huge cover-up scheme that goes back to the 1980’s. The grandiose scheme was a nefarious plot to let doctors off the hook from having to deal with this debilitating disease. I caught onto it very quickly. Most people have been victims of it ever since. This climate change ‘theory’ is all part of a well-planned scheme. Even the ticks are smarter than the people who’ve concocted this thing. Climate change has nothing to do with tick movement. Blacklegged ticks are ecoadaptive, and tolerate wide temperature fluctuations…..It’s all a red herring to divert your attention.” –  John Scott

 

LD Therapies – Dr. Rawl

  Approx. 1 Hour

Published on Dec 8, 2016

Last weekend, Dr. Rawls gave a presentation titled Exploring Lyme Disease Therapies in the 21st Century to the North Carolina Lyme Foundation.  What you’ll learn from this video lecture:

– 6 components necessary for recovery
– 3 holistic approaches to overcoming Lyme
– The importance of immune function on the body
– My approach to boosting the immune system and regaining lost health

For more information, please visit https://www.rawlsmd.com

Endocrine Talk

If you have always wanted to understand the Endocrine System (glands that produce hormones) and how it is affected by the environment, now’s your chance.  A free event is open to the public and seating first come, first served.  Q & A follows the talk.

Where:  AmericInn Lodge & Suites, 550 State Highway 13, Wisconsin Dells, WI  53965, phone:  608-254-1700

When:  Wed, Nov 30 at 6:30 p.m.

Health Talks On-Line

The Chronic Lyme Disease Summit is online and FREE from April 4-11, 2016!

http://chroniclymediseasesummit.com  You must register by going to this link.

Speakers:

Sally Schutz, MD: Mitochondrial Dysfunction

Kenneth Stoller, MD, FACHM:  Brain Conditions Have Infection with Them

Niki Gratrix, BA, Dip, ION, mBANT, CNHC:  The Role of Stress and Emotional Trauma with Lyme Disease

Trudy Scott, CN:  Tryptophan and GABA to Ease the Anxiety and Panic Attacks

Dean Martens, CH:  Energy Medicine

Fran Sussman:  A Unique Approach to Addressing Lyme Disease

Shiroko Sokitch, MD:  A Chinese Medicine Approach to Lyme Disease

Trina Hammack, FDN-P, CBT, CHC:  Energy Medicine and Its Role in Overcoming Lyme and Cancer

Trevor Cates, ND:  The Magic Mirror of the Skin

Laura Ricci, PT, DPT, WHNC:  Pelvic Floor Pain and Its Relation to Lyme Disease

Michael Acanfora, DC:  Lyme Disease and Trigeminal Neuralgia Connection

Scott Forsgren:  Recovering from the Many Layers of Lyme

Jason West, DC, NMD, FIAMA, DBDCN:  IV Vitamin C Treatment for Lyme Disease

Kevin Conners, DPSc, FICT, FAARFM:  3 Phases of Lyme and Rife Technology

Robby Besner, BS:  The Applied Science of Infrared Technology

Bradley Bush, ND:  A Lab Test That Actually Works for Detecting Lyme Disease

Connie Bennett:  Sugar and Lyme Disease

Raj Patel, MD:  Mold and Lyme Disease

B.J. Hardick, DC:  Nutrition Plan Steps Critical in a Bio-Detox

Jack Tips, PhD, CHom, CCN:  The Gut Microbiome and Lyme Disease

Shayne Morris, PhD, MBA, CNS:  Biofilm, Bugs and Phage (Bacteriophage)

Kate Hope, MS, CGP:  Using the GAPS™ Diet as Nutritional Therapy for Lyme Disease

Nikolas HedBerg, DC, DABCI, DACBN, BCNP:  A Ketogenic Diet’s Role with Lyme Disease

Jimmy Moore:  A Practical Approach to Nutritional Ketosis

Dietitian Cassie, RD, LD:  Food and Nutrition as They Relate to Lyme Disease

Peter Osborne, DC, DACBN, PScD:  Grainflammation (Grains = Inflammation)

Lee Cowden, MD:  A Comprehensive Look at Lyme Disease

Richard Horowitz, MD:  MSIDS Model and Its Role in Driving Inflammation

Connie Strasheim:  Lyme Disease and Cancer

Jay Davidson, DC, PScD:  Heavy Metal Detoxification and Lyme Disease

David Minkoff, MD:  Comprehensive Lyme Treatment Strategies

http://healthtalksonline.com/event-calendar/  Calendar of other free talks

 

 

 

 

Lyme Disease Treatment

Due to space constraints this article will ONLY cover the treatment of borrelia, the causative agent of Lyme Disease. To see treatments for the various co-infections, type Bartonella, Babesia, Mycoplasma, Parasites, Toxoplasmosis, or Powassan Virus treatment into the search bar for those articles. I hope to add to this list in the future.  Please know a tick’s gut is often filled with numerous pathogens with the potential to infect you with only one bite:  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  (The actual number is 18 and counting)  This is an important but overlooked issue as many of these pathogens will not respond to doxycycline – the drug of choice for most uneducated general practitioners following the CDC/IDSA treatment guidelines.

Current research indicates many are infected with more than Lyme:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  Key quote:

Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

https://microbewiki.kenyon.edu/index.php/Borrelia_burgdorferi_and_Lyme_Disease

Lyme Disease or borreliosis is caused by a Gram-negative bacterium belonging to the class of Spirochaetes, which have flagella allowing it to migrate through fluids and burrow through tissues, making it highly invasive. Borrelia burgdorferi is known for its outer surface proteins OspA and OspC which have a role in transmission into the host cell, whose metabolism is limited requiring Bb to rely on its host for energy precursors. Bb is slow growing, with a doubling time of 12-18 hours, unlike Strep or Staph which doubles every 20-30 minutes, which factors into the difficulty of diagnosis. This also necessitates longer treatment time for Bb as most antibiotics kill bacteria only when they divide. There are at least 37 known species, 12 of which are Lyme Disease related to date, and an unknown number of genomic strains; however, these numbers are constantly changing due to greater strain diversity than previously thought. Further complicating things, the strains differ in clinical symptoms and/or presentation as well as geographic distribution; however, again, to put Bb strain diversity into a geographical box is a huge mistake as the bird, reptile, fox, rodents, and humans are never confined to one location and migrate freely. Further complicating things, borrelia exists in four different forms. These are the spirochete, L-form (lives in cells), microscopic cyst form (non cell wall), as well as biofilm (a protective colony) The form can change shape whenever it feels threatened and can lie dormant until conditions are beneficial.

52_stealth316x316

This is another important point because effective treatment will address ALL of these forms as well as any coinfections.  Doxycycline, again, the drug of choice for most uneducated GP’s only addresses two forms of borrelia and won’t touch many of the coinfections at all.  Many practitioners feel biofilm needs to be addressed with biofilm busters.  (Things like garlic, NAC, xylitol, coffee, cranberry, enzymes, chelation, & more)  https://madisonarealymesupportgroup.com/2018/03/30/lyme-biofilm-efflux-pumps-dr-christine-green/

Another very real issue that few are acknowledging is the fact the non-cell wall form can lie dormant for an opportune time to emerge.  There is a link to this and dementia, Alzheimer’s, MS, and other autoimmune conditions:  https://madisonarealymesupportgroup.com/2018/03/25/a-brief-history-of-neuroborreliosis-research-dementia-an-inside-look-at-two-researchers/

https://madisonarealymesupportgroup.com/2019/04/09/the-diagnosis-is-alzheimers-but-thats-probably-not-the-only-problem/ Please read my comment after article.

http://norvect.no/230-peer-reviewed-studies-show-evidence-of-persistent-lyme-disease/  Despite the denial, here are 230 studies showing borrelia persistence. Here’s over 700 peer-reviewed studies:  Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy

Lyme Disease (LD) is the most common vector borne disease in the U.S with the CDC estimating that there are at least 300,000 new cases of LD diagnosed yearly, with actual infection rates much higher.

http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”

Testing, by the way, is abysmal for ALL Tick borne infections including Lyme:  https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/  Current testing doesn’t measure actual pathogens but antibody response to infection.  They also are blood tests which are problematic due to borrelia’s preference for tissues to evade the immune system.  The CDC’s current two-tiered testing (ELISA followed by the Western Blot) is highly insensitive. The fact that over 300,000 new cases a year are recorded bely the fact that these arbitrary and stringent tests miss over half of all cases. It’s a no-brainer that actual infection rates are much higher.

In fact, 1 million are to get Lyme in 2018 by this account:  https://madisonarealymesupportgroup.com/2018/02/24/one-million-predicted-to-get-lyme-in-2018-in-the-u-s/

This makes LD more prevalent than AIDS, breast cancer, West Nile Virus, H1N1, and Ebola.

http://www.thedailybeast.com/articles/2014/10/09/ebola-panic-is-worse-than-the-disease.html
http://www.naturalnews.com/031407_Lyme_Disease_epidemic.html
http://www.medicaldaily.com/lyme-disease-contagious-clues-hint-it-may-be-sexually-transmitted-disease-267964 .  There are over 300 strains of Bb worldwide and 100 strains in the U.S. to date.  Please note that the current two-tiered testing only uses ONE strain.  To get a positive would be akin to winning the Lotto.

https://microbewiki.kenyon.edu/index.php/Borrelia
It has since been determined that Lyme disease (named for the town in which it was first identified) can be caused by any number of different species in the genus Borrelia, such as: B. andersonii, B. japonica, B. valaisiana, B. lusitanie, B. turdae. B. tunakii, B. bissettii, and B. lonestari, and the most recent discovery of B. mayonii.
https://madisonarealymesupportgroup.wordpress.com/2016/02/07/new-species-of-lyme-found/

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Borrelia inhabits the lumen of a tick’s digestive tract. The disease is transmitted to humans from a tick bite when the bacteria migrates up to the ticks salivary glands, and through the opening created by the tick. Ticks increase salivation during gorging, prompting the migration of the saliva from the digestive tract. Because migration from the gut takes a few days, transmission of the disease usually does not happen until after the first 24 hours of attachment.  Please keep in mind; however, if spirochetes are in the tick’s salivary glands, theoretically, transmission could happen immediately despite the common CDC rhetoric that a tick must be attached for 36 to 48 hours or more. http://www.cdc.gov/lyme/transmission/

Great video on transmission time by Lyme Action Network:

In this article we learn of a little girl that within 4-6 hours of tick bite developed facial palsy and couldn’t walk or talk:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

For information on ticks, go to:
https://madisonarealymesupportgroup.wordpress.com/2015/03/21/meeting-reminder-and-ticks/
https://madisonarealymesupportgroup.wordpress.com/2010/05/20/ticks-carry-more-than-lyme-disease/
https://madisonarealymesupportgroup.wordpress.com/2016/01/20/polar-vorticks/

04_rash316x316Clinical diagnosis must consider any skin rash, regardless of its resemblance to the bull’s-eye. Many people never recall a rash or tick bite. “Researchers note that multiple textbooks and websites prominently feature the bull’s-eye image as a visual representation of Lyme disease.” They write, “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.”Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013 https://www.sciencedaily.com/releases/2013/04/130422132507.htm?

This article shows that the percentages seeing the rash range from 27-80%, hardly a sure thing: https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/ Read comment after article

An excellent primer on LD by Lyme Action Network (Approx. 5 min)  https://www.youtube.com/watch?v=tX70ivbRyJ4

The CDC also states there is NO EVIDENCE that Bb is sexually or congenitally transmitted or spread through transfusion if a person has been treated with antibiotics, http://www.cdc.gov/lyme/transmission/, despite the fact Bb is a cousin to Syphilis, is in the spirochete family, and has been found in semen and vaginal secretions. http://www.onlineprnews.com/news/454866-1390261507-lyme-disease-may-be-sexually-transmitted-study-suggests.html,

https://www.researchgate.net/publication/281146485_Sexual_transmission_of_Lyme_disease_Challenging_the_tickborne_disease_paradigm

http://archderm.jamanetwork.com/article.aspx?articleid=1899258,

https://madisonarealymesupportgroup.com/2018/02/06/lyme-in-the-southern-hemisphere-sexual-transmission/,

https://madisonarealymesupportgroup.com/2018/02/26/transplacental-transmission-fetal-damage-with-lyme-disease/, and the DNA of Bb has been found in breast milk.  http://www.lymediseaseassociation.org/index.php/about-lyme

They also emphatically state pets cannot spread the disease to their owners and that you can not become infected by air, food, water, or bites of other insects. Please glance at the following animal studies on Bb before you believe everything you are told: http://www.lymerick.net/Transmission-Bb-contact.htm  and http://www.ncbi.nlm.nih.gov/pubmed/20618647# (spirochetes found in mosquitos and black flies)

Listen to this brief 3 min Youtube of Dr. Lida Mattman on her belief that Bb is spread by numerous routes:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/  Mattman isolated living Borrelia spirochetes in mosquitoes, fleas, mites, semen, urine, blood, plasma and Cerebral Spinal Fluid. With her collegue JoAnne Whittacker, Mattman did groundbreaking work on Lyme testing. Her Gold Standard Culture Method has disappeared thanks to the concerted suppression on microscopy. In 2004 she already claimed that she could not find any uninfected blood in the USA anymore.  She studied borrelia for decades and was nominated for the Nobel Prize.

https://www.youtube.com/watch?v=ow53uy1qElI (Approx 50 min) Excellent video explaining the horrible testing, possible biowarfare agents including Lyme Disease (Bb), lab workers becoming infected at work, Plum Island’s work with ticks, the anti-trust investigation with testimony at 18:50 by Dr. Phillip in case after case for persistent (chronic) Lyme, at 35:30 clips of pathologist Alan MacDonald who’s getting 100% positive Bb in autopsies of Alzheimer patients, testimony of a woman who miscarried due to Bb, and much more).

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Why the CDC continues to make such bold claims is foreign to me when there is so much at stake and much that is unknown or unproven. Prudence would err on the side of caution. Just a year ago a doctor showed up in an airport donning a hazmat suit and sign that read, “The CDC is lying!”  http://www.ajc.com/news/news/doctor-boards-flight-in-ebola-protection-suit-to-p/nhZk8/
Due to this brave man’s actions, the CDC changed their position on transmission of Ebola.  http://www.theblaze.com/stories/2014/10/20/four-unsettling-ways-the-cdc-has-subtly-changed-the-way-it-talks-about-ebola/

The box of myths the CDC, NIH, and ISDA has conveniently thrown all of the factors of this complex illness(es) into are already beginning to claw their way out with a new species of Bb and Bartonella being “discovered” just this past week. I predict much more yet to come.

Because testing is so abysmal, many Lyme literate doctors use the Horowitz questionnaire that you can print and fill out:  https://madisonarealymesupportgroup.files.wordpress.com/2016/01/symptomlist.pdf

If you have a preponderance of symptoms it’s highly likely you are infected.  Take this with you to your doctor appointment.  

Before beginning any treatment, please read the article on the Herxheimer Die-off reaction:  https://madisonarealymesupportgroup.wordpress.com/2015/08/15/herxheimer-die-off-reaction-explained/ as well as the article, Tips for Newbies.
https://madisonarealymesupportgroup.wordpress.com/2015/12/06/tips-for-newbies/

http://www.prohealth.com/library/showarticle.cfm?libid=16301  Excellent, excellent article by Dr. Holtorf on why Lyme is hard to diagnose and treat, his integrative approach to managing chronic Lyme, plus his detailed listing of known facts about Lyme activity, diagnosis and treatment – a “culmination of the literature.”

And lastly, for a fantastic overview listen to Dr. Burrascano on the history of Lyme, and important considerations in treatment:  https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/  In brief:

  • Treat ALL forms of Bb
  • Treat coinfections
  • Treat long enough (Bb is slow-growing and persistent)
  • Make sure blood levels of antibiotics are high enough as people vary
  • Cycle treatment.  This means, once you are symptom-free for 2-4 months, stop treatment.  If symptoms return, treat again.  Burrascano has found that it typically takes 3-4 Cycles before a person remains symptom-free.  The 3rd cycle often yields the worst herx in his experience.

FOR EDUCATIONAL PURPOSES ONLY.  PLEASE DISCUSS ALL TREATMENT OPTIONS WITH YOUR HEALTH PROFESSIONAL.

A successful treatment should treat all three forms of borrelia. There is disparity between LLMD’s as to the timing of this but many state you should treat all three forms at the same time. However, at the first treatment take care to avoid an intense die-­off reaction by starting one prescription antibiotic only. Too much inflammation is unhelpful.

LLMD, Ken Singleton states there are five classes of antibiotics commonly used for Lyme Disease (borrelia).
http://www.lymebook.com/tetracycline-doxycycline-minocycline-macrolide-ketolide-ketek-cephalosporin-metronidazole-lyme-disease

Tetracyclines are commonly used due to their ability to penetrate cell walls.
doxycycline (100-300mg twice a day with food, but not with dairy or minerals)
minocycline (100mg) twice a day

Both of these must produce high blood levels and may require monitoring. If they are not tolerated due to side effects, doxy may be administered intravenously and the dosage for that is 300-400mg once a day.
*NOT TO BE USED IN PREGNANT AND BREASTFEEDING WOMEN OR CHILDREN 8 AND UNDER (current information debunks this – talk to your doctor)
*SPACE ANTACIDS, DAIRY, AND IRON AN HOUR OR MORE AWAY FROM TETRACYCLINES
*Notify your LLMD if you experience a severely unrelenting headache upon taking a dose

Macrolides and Ketolides, similar to Tetracyclines penetrate cell walls and tissues.
Telithromycin (800mg/day) – need to check electrocardiogram and liver function regularly
Clarithromycin (1,000mg/day)
Azithromycin (250-600mg/day) IV dose: (500mg/day)

*Blood tests are needed to monitor liver function and white blood cell count.
*Macrolides can interfere with other drugs. Make sure to talk to your doctor and pharmacist about other medications you are taking prior to beginning macrolide treatment.

Cephalosporins ideally should be combined with antibiotic classes that target the L-form of borrelia and, ideally, the cystic form also.
Ceftin (500mg 2X/day – some require higher dosages)
Omnicef (600mg daily)
Rocephin (IV) 1-2gms every eight hours and Claforan (IV)- 2gms daily – high blood levels need to be reached and levels should be measured regularly.
*Regular blood testing should be done to detect any adverse reactions. Ceftriaxone can cause gallstones, which can be prevented by using ursodiol.
*People allergic to penicillins are also allergic to cephalosporins.

Penicillins also should be combined with other antibiotic classes that target the L-form (such as macrolides & Ketolides) and cystic form (Metronidizole).
amoxicillin (1,000-2,000mg every eight hours) sometimes combined with probenecid (500mg) or Augmentin helps to keep blood levels high.
IV penicillin (1,200,000 units 2-3X/week). The LA form of Bicilin is more effective but painful than the CR form
*NEVER USE IF ALLERGIC TO PENICILLINS

Metronidazole kills borrelia in the cystic form. Use in combination with one or more of the above classes to kill all three forms.
Metronidazole (250-500mg 2-3X/day)
*Do NOT use Tetracyclines with metro because they inhibit metro’s effectiveness)
*Do NOT use if on blood-thinning medications
*Do NOT use if pregnant
*Do Not use alcohol while on this medication

Tinidazole does this as well.  Please see Dr. Eva Sapi’s work: https://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR  Metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%.
In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.

I must also add that for those with significant neuro issues, antibiotics that cross the blood/brain barrier are imperative.  One that worked for me was minocycline:  https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

Dr. Marty Ross’s borrelia treatment:
http://www.treatlyme.net/treat-lyme-book/the-successful-treatment-recipe-for-chronic-lyme-disease?rq=lyme%20treatment
According to Ross, a successful borrelia treatment needs to boost the immune system, kill the infections, protect and repair the negative effects upon the body, and speed recovery.
He recommends staying on each of the natural medicines until you have marked improvement, then you can stop all naturals but probiotics, curcumin, ashwagandha, and a good multi-vitamin.

SLEEP:
L-Theanine 100mg 1-6 pills a night an hour before bedtime. Do not exceed 1200mg a day, and/or
Herbal Combinations 1-4 pills one hour before bed (valerian, hops, yam, wild lettuce, l-theanine, and others)
Prescription: Zolpidem (Ambien) 10mg 1 pill 30 min before bed (use if you have trouble getting to sleep as it is short acting), and/or Clonazepam (Klonopin) 1 mg .5-2 pills 30 min to 1 hour before bed. (use if you have trouble staying asleep). If you have both getting to sleep and staying asleep issues, try Ambien first.

CYTOKINE CONTROL: (At the beginning of treatment and when you change antibiotics, an excessive amount of cytokines are made making you feel worse.)
Curcumin 500mg 1 pill 3X/day
Good multi vitamin

ADAPTOGEN: (based on animal studies, adaptogens improve energy, immune function, and adrenal/thyroid function)
Ashwagandha 400mg 1-2 pills am and 1-2 pills between 1-2pm. Taking late will disturb sleep.

HORMONES:  A person could have normal range testing for each of the hormones but still have clinically low hormones. Because of the unreliability of testing, treatment for low hormones should occur if there are clinical symptoms of low hormones as long as treatment does not increase hormone levels above the upper end of normal. Hormones provide many functions in the body. Proper levels improve energy and help the immune system to work more effectively.

ADRENAL INSUFFICIENCY:

Symptoms: fatigue, recurrent infections, poor recovery from infections, low blood sugar with shakiness and irritability relieved by eating, low blood pressure and dizziness on standing, afternoon crashing, and sugar cravings.

Naturals – Ashwagandha (same dosage and timing as listed above in Adaptogen)
Prescription – Cortef 5mg 1-2 pills am and 1-2 pills from 1-2pm. Taking late will disturb sleep.

LOW THYROID:
Symptoms: Low thyroid: fatigue, achiness, low body temperatures averaging below 98.0 F, cold intolerance, weight gain, constipation, and changes in menstrual periods.
Naturals – good multivitamin to provide essential micronutrients for the thyroid
Prescription – Desiccated Thyroid 1/2 grain or Armour Thyroid 1/2 grain. 1 pill in the morning 30 min before anything else but water (empty stomach). Increase every 3-4 weeks by 1/2 grain if low thyroid symptoms persist.

According to Ross, “Low hormones occur often in chronic Lyme disease. Inflammatory cytokines made by white blood cells to fight Lyme decrease the effective functioning of an area of the brain called the hypothalamus and pituitary. This part of the brain produces chemicals that induce sleep and that regulate hormonal systems. Normally this part of the brain releases messengers such as thyroid stimulating hormone (TSH), adrenocorticotropin hormone (ACTH), and follicle stimulating hormone (FSH) to stimulate the thyroid, adrenal glands, and sex hormone organs respectively. Because of the dysfunction caused by the cytokines, these regulatory messengers are released based on an incorrect interpretation by the brain of the hormone environment. Thus measurements of these messengers is an unreliable way to determine the hormone status. Another way to check hormone status is to measure the actual hormone levels like T4/T3 (thyroid), or cortisol/dhea (adrenals), or estrogen/progesterone/testosterone (sex hormones). These tests give a broad range of normal, however.”

It has been my personal experience that most general practitioners do not think for themselves when it comes to hormones. Similarly to how they hide behind the CDC guidelines, they hide behind test results and refuse to diagnose and treat patients clinically.

For excellent information on thyroid disorders please watch:
Dr. Brownstein: https://www.youtube.com/watch?v=ku2lylX13h4 (He starts by giving an intro of how he ditched what he’d been taught in med school and at 7:30 starts with the thyroid talk. He states thyroid disorders are epidemic – 60% of the population has an undiagnosed thyroid problem and they are not being diagnosed or treated properly by mainstream medicine. At 10:56 he hits vitamin D deficiency, and dispels myths about skin cancer and sunscreen. At 18:00 he gives hypothyroidism symptoms. Lab tests do not reveal everything and many go undiagnosed. Approx 1.5 hours (Sorry, nothing is simple)

ESSENTIAL MICRONUTRIENTS:
Multivitamin: Use a vitamin that has numerous amino acids, antioxidants, minerals, and various vitamin Bs including b12 and folate. He prefers vitamin powders from Thorne and Integrative Therapeutics.

YEAST:
Probiotics – use a product shown to repopulate the intestines in scientific studies. Take at least 10 billion live cultures 1 hour away from antibiotics. During an active yeast infection consider increasing to 20 billion cultures one time a day or divided in to two doses.

Antifungals:
Natural medicine: Herbal Combinations. 2 pills 2 times a day. (Common herbs found individually or mixed together include: pau d’arco, caprilic acid, rosemary oil, thyme oil, garlic, and grapefruit seed extract.) Will take 3-4 months to get yeast overgrowth under control.
Prescription medicine: Nystatin 500,000IU 2 pills 2 times a day.
*You may add Fluconazole (Diflucan) 200mg 1 time daily for 30 days combined with nystatin for prevent drug resistance for a yeast overgrowth problem.

BORRELIA TREATMENT:
(Take either the naturals or the prescriptions, but not both together at the beginning; however, you may do so later on)

First Month
Naturals (work 85-90% of the time)
Otoba Bark Extract and Cat’s Claw 5 drops 2X/day of each and increase every 2 days by 1 drop per dose till taking 30 drops 2X/day. Take on an empty stomach. Do not take 30 min before through 2 hours after having food, medicines, or supplements. If you Herx, do not advance dosage until it decreases.
Prescriptions
Doxycycline 100mg 2 pills 2X/day or 4 pills 1X/day. Take with food to prevent nausea. Do not take with calcium supplements or dairy or milk substitutes like rice milk. OR
Clarithromycin (Biaxin) 500mg 1 pill 2X/day
*Both of these antibiotics treat the L-form and the spirochete form.
B. After First Month
Naturals
Remain on same as they kill all 3 forms of Lyme.
Prescriptions
Work with LLMD to add additional antibiotics to treat all 3 forms of Lyme. You need to add an antibiotic to kill the cyst form of Lyme.

DETOXIFICATION:
Eat organic
Avoid gluten, alcohol and tobacco, and synthetic scents
Lower stress
Multivitamin to support liver detox
Drink good water (1/2 of your ideal body weight in lbs. as ounces)
2-3 servings of beans, legumes, or whole grains/day. Fiber helps you detox.
Exercise – at a tolerable level
*Special Considerations for 6 months & beyond:
Detox treatments for MTHFR methylation defect, lyme and mold biotoxins, and heavy metals
Biofilm treatments
Chronic viral infection treatments
Autoimmune illness treatment such as Low Dose Naltrexone (LDN)
Yeast treatments
(Ups and downs in treatment is normal; however, if there is a significant decline after you are doing better, consider yeast (increased sugar cravings, intestinal gassiness or bloating, recent vaginal yeast infection, oral yeast, and/or vaginal or rectal itching), or a co-infection such as Bartonella, Babesia, or Mycoplasma. Please do Dr. Schaller’s checklists for these coinfections and discuss these possibilities with your health care professional)

Dr. Horowitz’s Lyme Treatment: (Derived from Why Can’t I Get Better?  Solving the Mystery of Lyme and Chronic Disease)
Combine antibiotics to address the 3 forms. Use enzymes to address biofilms, and continue until patient is symptom-free for 2 months.

Cell Wall form:
amoxicillin (500-875mg 2-3X/day) with probenecid 500mg 1X/day with meals. He states to check the peak (12-15 is optimal) and trough levels which may necessitate increasing the dose. Avoid probenecid if there is a sulfa sensitivity or use with caution if has kidney stones.
Augmentin (875-1,000mg 1-2X/day) alone or with amoxicillin.
IM Bicillin 1.2 million units 2-4X/week. Use Emla or lidocaine cream 1 hour prior to injection & massage area 2-3 minutes after and repeat several times per day.
Ceftin (500mg 1-2X/day)
Omnicef (300mg 1-2X/day)
Cedax (400mg 1-2X/day)
Suprax (400mg 1-2X/day)

*For those with significant CNS disease, or who have failed oral medications:
IV Rocephin (2g daily 5-7days/week, up to 2g every 12 pulsed 4-5 days/week). Use Actigall (300mg) 1X/day to prevent sludge and gallstones. Check CBC and CMP with liver functions every two weeks and use liver support (NAC, ALA, Hepa #2, milk thistle) as necessary.
IV Claforan (2g every 8-12 hours) may used instead of Rocephin if there are gallbladder problems. Check blood work as with Rocephin.
IV vancomycin (1-1.25gm/every 12 hours)
IV Primazin (500mg every 6 hours)
IV Cleocin (600mg every 8 hours or 900mg every 12 hours)

Cystic Forms: (also known as L forms, S-forms, spheroplasts, and non cell wall forms)
Plaquenil
Grapefruit seed extract (use when can’t take plaquenil or when have yeast issues)
Flagyl – pulse either several days in a row per week or two weeks on, two weeks off
Tindamax – pulse same as Flagyl
*Avoid alcohol when taking Flagyl and Tindamax
*Horowitz uses high doses of B6 and B12 and nystatin to decrease side effects

Intracellular Forms:  Macrolides
Zithromax (250mg 1X/week with meals.
Biaxin or Biaxin XL (250mg 1X/day)

Tetracyclines: (Do not mix with dairy, antacids, or vitamins and minerals, avoid direct sunlight, and do not lie down within an hour of ingestion to avoid reflux esophagitis)
Doxycycline (100mg 2X/day with meals)
Minocycline (50-100mg 2X/day)
Tetracycline 250mg or 500mg 1-2 g per day total, 2X/day

Quinolones: (Do not use if pregnant, do not mix with antacids, or vitamins with minerals)
Cipro (500mg 2X/day)
Levaquine (500mg 1X/day)
Avelox (400mg daily)
Factive (320 daily)
*Check QT interval on Quinolones as well as drug interactions
*Advise patients of tendon issues and do not exercise vigorously. Discontinue if tendon pain starts. Take ALA, curcurmin, and magnesium to decrease side-effects.
*Consider pulsing these in 5 day cycles to reduce tendon damage.

Rifampin: (150mg to 300mg 2X/day) Do not use if pregnant. Use with another intracellular to avoid resistance.

**Update** 

Dr. Horowitz has recently added Mycobacterium drugs (used for leprosy) on his most treatment resistant patients:  https://madisonarealymesupportgroup.com/2016/10/09/mycobacterium-drugs-for-ld/  Horowitz reports that the Dapsone and PZA protocols have been the most effective treatment additions for resistant Lyme and autoimmune symptoms, with PZA being the most effective for dermatological manifestations of Bahcet’s and arthritic/granulomatous changes.

For an excellent interview with Dr. Horowitz:  https://on-lyme.org/en/sufferers/lyme-stories/item/255-is-there-hope-for-lyme-patients-interview-with-dr-richard-horowitz  Takeaway:  I do not have to put a PICC-line in or use IV ceftriaxone in many of these people because the dapsone protocol combined with doxycycline and rifampin is turning out to be an excellent protocol. It gets good penetration into the central nervous system. Many of my patient’s symptoms are getting better with this protocol, including resistant fatigue, joint/muscle and nerve pain, memory and concentration problems, as well as their sleep and mood disorders.

http://www.immed.org/treatment%20considerations/LymeTickTwnsndLet2007.285.93.98.pdf  An excellent PDF with treatment suggestions from Dr. Garth Nicolson.  Please remember that you can jump immediately to late disseminated Lyme without noticing any of the previous stages and while the literature often categorizes these stages with time frames, it is often the case that reality is far different.  He also goes into co-infection treatment as well.

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http://lymestats.org

I can’t overemphasize the need to consider the coinfections that typically come with Lyme (borrelia).  This fact is not being considered by mainstream medicine, to the detriment of patients.  All the doxy in the world thrown like napalm is not going to cure this.  For instance, if a person has parasitic involvement, they will need anti-parasitic medications.  Some patients have nematode (worm) involvement which requires anthelmintics such as Ivermectin and Albenza.  Research has shown that spirochetes have hidden in worms to go undetected.  Until the worms are killed, the spirochetes can’t be touched by antibiotics.  Borrelia is considered a stealth organism – quite adept at hiding within the human body.  http://www.wormbook.org/chapters/www_anthelminticdrugs/anthelminticdrugs.html


Alternative Treatments

The Cowden Protocol: https://www.youtube.com/watch?v=DLuQk5Zs2Fo and
http://www.nutramedix.ec/ns/lyme-protocol  (PDF’s and videos to watch)
This herbal program utilizes 14 different Nutramedix products including 6 Microbial Defense herbals that are taken rotationally over at least 6 months. Richard Horowitz, MD in New York State has found the Cowden Support Program to be effective in markedly improving the condition of 70-80% of the advanced Lyme Borreliosis patients with co-infections over 4 to 6 months’ time, even if the patients had previously failed to improve on multiple courses of antibiotics.

Master Herbalist Stephen Buhner’s Herbal Protocol:
http://buhnerhealinglyme.com (Please check this website for updates on treatments)

Japanese knotweed – Source Naturals Resveratrol with 500mg Polygonum cuspidatum per tablet) 1-4 tablets 3-4X/day for 8-12 months or for tincture dosage:
150lb – 1 tsp 3X/day
100lb – 2/3 tsp 3X/day
60lb – 1/3 tsp 3X/day
30lb – 1/5 tsp 3X/day
Cat’s claw (Uncaria tomentosa) Raintree brand, 1-4 tablets 3-4X/day for 2-3 months, then 2-3 capsules 3X/day or for tincture dosage: same as knotweed above.
Eleuthero (Eleutherococcus senticosus) HerbPharm tincture, 1/2 to 1 tsp upon rising and at lunch for all weights.
Astragalus (Astragalus membranaceus) 1,000mg daily (not to be used in chronic Lyme) or for tincture dosage: same as knotweed except for:
60lb – 1/2 tsp 3X/day
30lb – 1/3 tsp 3X/day
Ashwagandha (withania) 1,000g at night before bed for sleep issues and brain fog.
If you have questions, you may post them to Stephen at: www.PlanetThrive.com/category/experts/buhner/. I highly recommend all of Stephen’s books.

Zhang protocol:
http://www.zhangclinicnyc.com/index.htm

Byron White Protocol:
http://www.byronwhiteformulas.com

Recently, work is being done on essential oils.  https://madisonarealymesupportgroup.com/2017/10/13/oregano-cinnamon-and-clove-found-to-have-high-anti-persister-activity-for-bb/  While this is potentially great news for patients, please remember this was all done in vitro (in a test tube), similarly to the work on Stevia. Also, we have no idea what dosage would be effective or safe for human consumption.
As to the work on Stevia, again, it’s all in vitro and needs to be proven in humans.
https://madisonarealymesupportgroup.com/2015/11/19/stevia-and-bb/
https://madisonarealymesupportgroup.com/2017/08/11/stevia-clinical-trial-underway/

Ozone Ten-pass:  https://madisonarealymesupportgroup.com/2017/12/04/ozone-ten-pass-lyme-msids-treatment-in-ca/  Infusing ozone into the blood is being used with some success.  It will kill all pathogens – including viruses in the blood.

As to duration of treatment – this varies highly; however, according to the most experienced Lyme literate doctor in the state of Wisconsin, treatment cases in the 70’s resolved within a month to a year, while current cases are taking three and more years.  Many LLMD’s (Lyme literate doctors) recommend a maintenance program for life.

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I know this is overwhelming.  Take a deep breath and put one foot in front of the other.  One day at a time.  Trust me, before long you will be a quasi expert in all things TBI (tick borne infections).

You do need to get to an LLMD (Lyme literate doctor).  Regular practitioners at this point do not believe in the severity and complexity of MSIDS (multi systemic infectious disease syndrome or Lyme with friends).  They will not treat you properly with various and extended antibiotics and/or naturals.  Research shows that most are infected with more than borrelia, the causative agent of LD, and have various coinfections such as Bartonella and Babesia complicating our cases.  According to Horowitz, research shows that a person with both Babesia and borrelia are three times sicker than if they just had LD.  This is important to acknowledge and frankly, most GP’s are clueless on all of this.  These stealth pathogens are experts at fooling your immune system and they work symbiotically together and actually morph inside your body by changing their outer surface proteins to be different than when they entered.

If you find a doctor willing to be properly trained, please give them this link:  https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/

Realize you have a lot to learn.  Learn it.  Then, be your own advocate.  This is not going to be a sprint, and it’s far from fun.  It’s going to be a marathon, so strap yourself in for a wild ride.  If you are able, get to a Lyme Support Group to learn and be around others on the same journey.  We learn from each other.  If you aren’t able to get to a physical support group, I highly recommend getting on an on-line support group.  You can ask questions and read others’ experiences.  On the right hand side of the website, scroll down until you see “On-line Support Groups.”  Click and join.  Also, if you want to receive an email each time I post educational materials or meeting times for the Madison Lyme Support Group, pop me an email, I’ll send you an invite, and you will get an email directly to you when I post.  This is convenient because I always send reminders for meeting times!  You can also type in words in the search bar for articles to help you learn.  For instance, from here, I’d recommend “Tips for Newbies,” as this complex is far different than anything you’ve experienced.  Also, if you are struggling with cognitive and/or psychological issues, please type “Psychological Aspects of Lyme,” into the search bar.

No, you aren’t crazy, you have a brain infection which makes you feel crazy.  Treatment will resolve these issues.

 

Tips for Newbies

gallery-thumbnails.php       Helpful Hints for Successful Treatment

Treating Lyme Disease or MSIDS (multi systemic infectious disease syndrome) is unlike treating for common diseases such as bronchitis where you start feeling better upon taking antibiotics. With MSIDS, antibiotics kill the pathogens leaving them floating around in your blood stream for your immune system to finally notice. This causes a herxheimer reaction in which your body starts attacking itself and is an autoimmune response.

Detoxing these dead pathogens is paramount for successful treatment and the following have had success:

Sweating. Your skin is the largest organ and sweating causes impurities to get out of the body. There are many ways to sweat including hot baths. Putting things like epsom salts in the bath also will give your body needed magnesium which can help with muscle pain.  https://madisonarealymesupportgroup.com/2017/09/29/epsom-salts-for-lymemsids/  Some like to use hydrogen peroxide and/or baking soda. Depending upon tub size a cup of any of these agents is a good place to start. Make sure the water isn’t hot enough to burn but warm enough for sweating. Also, drink plenty of good filtered water during the bath.  Other baths:

  • Apple Cider Bath:  Add 2 Cups of apple cider vinegar to bath.
  • Epsom Salt Bath:  Dissolve 1 Cup Epsom Salts
  • Clay Bath:  1/2 C Bentonite clay, 1/2 C Epsom Salts, 1 Tablespoon yellow root powder
  • Essential Oil Bath:  Add 5 drops lemongrass or coriander to bath with sea salt or 1/2 C epsom Salts.

Saunas are good as well, particularly infared. Exercise is another way to sweat just make sure you don’t overdo it as fighting MSIDS is taxing enough. Walking is safe, effective, free, and gets you outside in the fresh air and sunshine. If you haven’t exercised much, start by going around the block. As you develop more stamina, go further.  Patients have used things like the Biomat successfully as well.  https://www.biomat.com

One word of caution: start slowly and see how you respond.  For some, these hot baths wipe them out.  If this is a problem for you – perhaps do it at night before bedtime.  Also, be careful you aren’t dizzy as you don’t want to slip and fall.  It’s wisest to have someone close by in case you need help.

Drink plenty of fluids, particularly water. Some have squeezed lemon juice into their water for taste and its tonic properties. Coffee and green tea have great properties as well – just don’t overdo the caffeine.

Coffee Enemas and Colonics:  https://madisonarealymesupportgroup.com/2016/06/06/the-coffee-enema/  Anything which helps move toxins out of the body is beneficial.  Many find coffee enemas and colonics extremely helpful while in treatment.  I’ve done both and can attest to the benefits.  In the link above, there are tools to help make this simpler for you as you probably won’t keep these things up unless it’s simple.  Some use a bulb syringe for quick application, others use the stainless steel bucket as in the video.

Herbs. Parsley is a wonderful herb for detoxing as well as milk thistle. Nutrimedix has a line of herbs, also sold on Amazon, such as Burbur, Parsley, and Pinella. For more information on these herbs and their properties go to: http://www.nutramedix.ec/ns/lyme-protocol.  You can click on the herb and will get a video and pdf with valuable information.  Master Herbalist, Stephen Buhner, has also written many excellent books on treating MSIDS with herbs.  You can use these alone or in conjunction with antibiotics.   http://buhnerhealinglyme.com

Alpha Lipoic Acid (ALA):  Found in every cell of the body, it chelates and neutralizes harmful chemicals and increases the formation of glutathione which helps remove them.  Some warn to not use unless you’ve had your mercury (silver) fillings removed:  https://www.healthnutnews.com/vaccine-detoxes-for-adults/

Fiber: a roto-rooter for the colon, it cleans and absorbs toxins.  Celery and other green leafy vegetables do wonders as well as plain psyllium husk fiber.  Check ingredients as you don’t want added sugar and colors.

Chelation. At some point in your treatment you may want to consider chelating as it removes heavy metals from your body which very well might stand in the way of healing.

Dry Skin Brushing. Get a natural bristle brush to clear pores of debris. It will also stimulate the lymphatic system which harnesses toxins. Start at your feet and move toward your heart by making wide sweeping motions, overlapping the areas as you brush.

Jump on a Trampoline. This will also move your lymphatic system.  Don’t do this if you have dizziness.

Eat plenty of Cruciferous Veggies. Kale, Collard, and Cabbage increase the detox activity of cells in the liver. Steam for 2 -4 min to keep the living enzymes then add sea salt, black pepper, diced avocado and extra virgin olive oil.

Ozone. Blood ozone with or without UV light puts valuable oxygen into your body much like exercise does but even more effectively. This will help every cell in your body do what it’s designed to do and will help with detoxification as well.

Massage:  There are numerous types of massage to consider.  Do what feels best to your body.  Due to the fact many of these pathogens love muscle and tendon tissue, you may find massage painful.  Tell your practitioner you are a Lyme/MSIDS patient and that you may need to go slowly to work up to the full strength of the massage.  Some find lymphatic massage particularly helpful as it gets the lymph moving to assist the body in detoxing.

Cupping:  Cupping is a technique often used with massage to help the body detox.  The practitioner puts cups along the muscles of the spine which pulls the fascia away from muscle tissue allowing blood to flow better.  Along with better blood flow you get better circulation of oxygen, treatment, and valuable nutrients.

Raindrop Technique:  Using essential oils and massage, the practitioner applies specific EO’s onto the spine and feet allowing the body to detox better.  Many of these EO’s are also antimicrobial in nature and are being directly absorbed into the blood stream, particularly in the spine where many pathogens hide.

Accupuncture:  This Chinese medicine technique uses needles to help the body be stronger.

Accupressure:  Using similar technique as acupuncture, there are no needles involved in accupressure.

For more ideas: http://www.tiredoflyme.com/detox-methods.html  Chris, the author of the website Tired of Lyme, has far more examples and has asked folks to rate their favorite detox methods.  Please add your own experiences, and always remember that what worked for one person may not work for another, which is why you sometimes need to keep experimenting to find what works for you.

Unless you have an acute case (a recent tick bite), treatment may take anywhere from months to years. This is important from many aspects.

1)Now is the time for pristine health habits. You might need help with your diet so you can heal. Many have allergies, food and or chemical sensitivities and/or leaky gut which need to be addressed so you can heal.  Most literature states to avoid sugar, gluten, and alcohol as well as anything that causes allergy type symptoms.

2)You may need treatment to help you sleep. One of the hallmark symptoms of MSIDS is fatigue and sleep issues. Many have insomnia which leads to extreme day-time fatigue. If this is a problem, make sure you discuss this with your doctor.  Many have found help with the use of things like Gabapentin, LDN (low dose naltrexone)  https://madisonarealymesupportgroup.com/2016/12/18/ldn/, natural progesterone, Valerian Root, and other sleep aids.  Without sleep you will not heal.

3)You need to fix the imbalances in your body. Based on your exams, Many LLMD’s will order lab work to determine your body’s weaknesses and imbalances. Many need to go on thyroid medication and perhaps low dose hydrocortisone and/or other bioidentical hormone supplementation as MSIDS often puts the body into adrenal fatigue.  It is quite common to be low in Magnesium which is an important major mineral responsible for some 350 biochemical reactions in your body (it also helps sleep).  Your lab results will indicate what you need; however, here’s a great article showing you what to look for.  One possible sign is constipation.  http://articles.mercola.com/sites/articles/archive/2015/01/19/magnesium-deficiency.aspx

You may be tempted to opt out of this part of treatment.  Don’t.  Your body needs all the support it can receive as it is in a major war.

4)Now is NOT the time for vaccinations.  Despite what you hear in the media about immunizations, there is another side to the coin and you need to do your own research to determine what is best for you – particularly since your immune system is compromised due to a serious infection(s).  For starters, read: https://madisonarealymesupportgroup.wordpress.com/2015/06/19/a-word-on-vaccines/ and https://madisonarealymesupportgroup.wordpress.com/2015/07/15/vaccines-continued/ and https://madisonarealymesupportgroup.wordpress.com/2016/02/05/zika-sexually-transmitted/

Every single MSIDS patient I know who got vaccinated had a relapse or worsened.

5)You probably will need emotional support. Another unfortunate thing that happens to MSIDS sufferers is isolation. People don’t understand what you are going through or don’t believe it. Frankly, I wouldn’t believe it myself if I hadn’t lived it.  Sometimes these people are in your own family leaving you with a great sense of loss and helplessness. Often you just need someone to understand. There are many excellent support groups here in Wisconsin, and the Madison Lyme Support Group meets one to two times a month where you can vent, complain, and cry.  Trust me, we get it.  Meeting times are posted on this website and by becoming a “follower,” by clicking the blue “follow” button, you will receive an email each time I post. https://madisonarealymesupportgroup.wordpress.com.

https://groups.yahoo.com/neo/groups/Wisconsin-LymeSupport/info.
This is an online group with many MSIDS patients who share information and tips. You can post questions and people will respond.

https://www.facebook.com/pages/Wisconsin-Lyme-Network/408459622540767.

http://wisconsinlymenetwork.org/patients/wisconsin-support-groups/

If there isn’t a support group in your area, start one!  I have been blessed beyond measure by the dear people who attend and have learned more from them than from many doctors.

A few words about treatment

Each LLMD has their own approach to treatment.  You will find each practitioner quite passionate about their regimen.  This is one of the challenges as a patient; to find a practitioner you agree with as treatment is highly variable.  It is not uncommon to change doctors sometime in treatment.  Often people start out very inexperienced and desperate.  As time progresses you become more knowledgable and develop an opinion of your own about treatment.  There is nothing wrong with changing doctors; however, we hope to help explain the various doctors and their approaches to you at meetings to you can make an informed decision at the onset.  And if you live in a state other than Wisconsin, please contact your local support group for important and helpful information regarding doctors, fees, approach, etc.  Feel free to ask questions as someone in the group probably has experience one way or the other.  Also, it has been a goal of mine to post the talks given by these WI LLMD’s so you can see them for yourself firsthand.  If you type the doctor’s name in the search bar you will be directed to their talk to the group.

Some doctors use a straight antibiotic approach, some pulse, some use herbal products, or a combination of all these approaches.  Some put high value on diet, chelation, ozone, and other supportive measures, where others don’t even discuss these options.  Whatever approach your doctor takes, quality pro and prebiotics are extremely important for your GI tract.  As antibiotics take a toll on your GI, and since treatment is usually months to years long, it is quite easy to develop Candida, or yeast issues.  Some doctors sell these products right in their offices, where others just tell you to find good quality sources.  This again is an area where the support group can help you find good sources as there is much experience within the group as to what works and what doesn’t.  Also, these same folks usually have found the cheapest sources as finances become a top priority as well.

It is daunting in the beginning of treatment to keep all of various meds in order – particularly the timing of them.  It is important to separate your antibiotics from your pro and prebiotics as well as your supplements.  Take your morning probiotic when you first wake, giving it at least 30 minutes to an hour before you take your antibiotics. If you are taking thyroid and hydrocortisone, you may take that with your morning probiotic. Try and take your evening antibiotics early enough that you have a number of hours before taking your evening probiotics and/or prebiotics before bedtime.  Supplements also need to be separated from antibiotics by a number of hours as they will interfere with absorption.  Feel free to ask these types of questions at the support meeting as folks have been doing this for years and have it nailed down.  And of course run everything by your doctor and even the pharmacist.  Pharmacists can give very helpful information about drugs and their interactions.  Here’s a nifty site you can type in all your meds for yourself to see interactions.  http://www.rxlist.com/drug-interaction-checker.htm

Herxing may be felt within hours to days of taking antibiotics. Common symptoms include: increased fatigue, muscle or joint pain, rashes, sight, sound, or touch sensitivity, irritability, dizziness, insomnia, cramping, night sweats, hyper or hypotension, headaches, swollen glands, chills or fever, nausea, bloating, constipation or diarrhea, low grade fever or feverish feeling without fever, heart palpitations, facial palsy, confusion, ringing in the ears, uncoordinated movement, and severe itching.  (Although herxing can manifest in a thousand different ways).  

While herxing is never fun, you can relish the fact you are killing pathogens.  If the herxes are too strong; however, you need to communicate with your doctor.  Sometimes people need to slow treatment down or even stop altogether until their body detoxes properly.

And lastly, be gentle with yourself. Remember your body is in a battle and you will feel it physically. While many will not be able to see this battle going on externally, remind yourself and your loved ones to treat the sick person gently.

Here’s to the beginning of a journey, with many pilgrims walking the same, albeit slightly different path.

Can ME/CFS Be Caused by Lyme?

http://solvecfs.org/what-is-mecfs/

What Is ME/CFS?
Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.
What are the symptoms of ME/CFS?

The most common symptoms of ME/CFS include post-exertional malaise (PEM), unrefreshing sleep, concentration problems and muscle pain,  typically lasting at least six months.
Post Exertional Malaise (PEM) – PEM is a cardinal symptom of ME/CFS. PEM occurs following mental or physical exertion and is described as worsening symptoms lasting 24 hours or more.
Unrefreshing Sleep – Disrupted and unrefreshing sleep is another hallmark of ME/CFS that causes patients to wake up feeling tired even after periods of rest, to experience excessive daytime sleepiness and to have difficulty falling asleep and staying asleep.
Concentration Problems – Many ME/CFS patients consider concentration problems to be the most serious and debilitating symptom. They experience difficulties with attention, concentration and memory that have been linked to problems in how the brain processes information – particularly processing speed and complex information processing.
Pain – For a long time pain was not thought to be a prominent symptom in ME/CFS, but muscle pain, joint pain and headache are common in ME/CFS patients.  It is likely that these four major symptoms of ME/CFS are intertwined, each affecting the other and potentially exacerbating the disease. This is why physicians who understand ME/CFS try to treat pain and sleep disturbances with medications in an attempt to relieve the severity of the overall ME/CFS symptom complex.

The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.
It is not uncommon for people with ME/CFS to have some of these symptoms:
Visual disturbances (blurring, light sensitivity, eye pain)
Difficulty maintaining upright posture, dizziness, balance problems and fainting
Chills and night sweats
Gastrointestinal disturbances
Allergies and sensitivities to foods, odors, chemicals, medications
Brain fog and cognitive impairment
Gynecological problems including PMS
Irritability, depression and mood swings
Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions.
Common conditions that occur along with ME/CFS:
Fibromyalgia
Orthostatic intolerance
Irritable bowel syndrome
Interstitial cystitis
Temporomandibular joint disorder
Chronic pelvic pain
Multiple chemical sensitivity

Who gets ME/CFS?
  At least one million people in the United States have ME/CFS and the condition affects millions more worldwide.  Although research has shown that ME/CFS is about two to four times as common in women as men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
How is ME/CFS diagnosed?  Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that is conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.
Diagnosis can also be complicated by the fact that the symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the health care provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.
How is ME/CFS treated?
Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living. Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can be relieved treated.
Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.
If you think you may have ME/CFS, take this quick online questionnaire to learn more.

http://www.prohealth.com/library/showarticle.cfm?libid=21516

Can ME/CFS Be Caused by Lyme Disease?
By David S. Bell MD

lgimage_21516

Question: 1) Can Lyme disease result in permanent ME, even if all signs of the bacteria are gone? Can the Borellia bacteria that causes Lyme Disease also cause ME? Which is worse: severe ME, or severe Lyme Disease?

Answer: These three questions all revolve around chronic Lyme disease, and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion.

In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID1. Central to this outbreak was a group of children who suddenly became ill in October, 19852. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.

The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the ‘state of the art’ to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double-blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.

In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.

This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abattoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment3. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus and Epstein-Barr virus in a well-designed and carefully controlled study4. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria5. Of the many remarkable things in this study, it was 6% of those with EBV, 6% with RRV, and 6% with Q fever, three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.

However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune6, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?

So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.
References

1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. 2015.

2. Bell K, Cookfair D, Bell D, Reese P, Cooper L. Risk factors associated with chronic fatigue syndrome in a cluster of pediatric cases. Rev Inf Dis. 1991; 13(Suppl 1): S32-8.

3. Marmion B, et al. Q Fever persistence of antigenic non-viable cell residues of Coxiella burnetti in the host – implication for post Q fever infection fatigue syndrome and other chronic sequelae. QJM. 2009; 102(10): 673-84.

4. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon S, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006; 333.

5. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994; 121: 953-9.

6. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).

About:
David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment.