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. and

Borrelia alone is a formidable complex, pleomorphic bacteria(ish) that shape shifts to avoid medications and form 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 uses 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.,  and,

OK, now that we’ve cleared that up….

My story


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 actually diagnosed both of us by watching the documentary Under Our Skin, the best primer on Lyme Disease on the market.

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:

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 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 I 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.

I wasn’t alone!

Here’s just a few sites: (Soul Cysters – gotta love the name!);f=1;t=043160;p=0   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.   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.  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 somehow contribute to high androgen levels in women with LD, or is it inflammation in the pelvic area caused by tick borne infection?

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.   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 half of the men with Lyme. One of the heterosexual couples with Lyme had the identical strain in their genital secretions.  Here is the updated article and the fact that 1 referee approved and 2 did not approve of the rigor of the study.

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

That was in 2014, and……nothing’s changed.   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:
“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.”

Regarding breast milk the CDC states, “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.”

But the plot thickens with many credible doctors and researchers disagreeing.

Dr. Jones, a highly respected LLMD believes in both congenital transfer and via breast milk.  In this pdf there is a table of symptoms in children suspected of contracting Bb congenitally at or slightly after birth.

Here’s another Bibliography on Gestational Lyme & via lactation  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.  Bb DNA found in urine and breast milk of Lyme patients.  Here we see borrelia found in colostrumblood, synovial fluid, and urine in cows and horses.  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.”  Another link with helpful information mostly regarding infection in children but also has links on pregnancy and transmission.

Then there’s that aforementioned study finding spirochetes in vaginal secretions and semen that was presented at the annual Western Regional Meeting of the American Federation for Medical Research (Reference: The Journal of Investigative Medicine 2014;62:280-281)  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.”  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.  The 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:  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.

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

But, you are duly warned.






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

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!  You must register by going to this link.


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  Calendar of other free talks





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. Some like to use hydrogen peroxide and/or baking soda or a combination all of these things. 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. 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.  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:  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:  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.

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.

For more ideas:  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), 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.

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: and and

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.
This is an online group with many MSIDS patients who share information and tips. You can post questions and people will respond.

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.

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?

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:
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.

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


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.

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).

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

Audio on Hormones and Adrenal Support

Recently Kathy Lynch, Pharmacist from Women’s International Pharmacy (WIP), spoke to our group.  Since adrenal insufficiency is common in MSIDS (multi systemic infectious disease syndrome) patients, it’s important to rule it out or treat whatever imbalances exist.  Similar to MSIDS testing, testing for adrenal function is poor and is best treated clinically by doctors with experience, with testing used mostly to confirm suspicions.

One thing that is clear is that all MSIDS patients should have their thyroid, cortisol, vitamin D, and basic hormones checked.  Kathy lists some of the more common symptoms for these disorders but a quick Google search should help you and your practitioner know fairly well if you need treatment.  While it is not true across the board, another quite common ailment with MSIDS is low magnesium.  All of these supplements are fairly inexpensive and can make a world of difference in how you feel.

WIP is a local compounding pharmacy and takes great effort and care in making the most bioidentical forms of hormones.  In other words, their hormones are as close to what your body makes as possible.  The beauty is your body processes it more naturally with fewer side effects and usually it is less expensive.

Due to the length of the presentation it is in 5 parts for your convenience.  I feel strongly that this very well might be the “missing link” in many treatments.  If you have low magnesium, low thyroid and cortisol, I guarantee you are going to feel lousy.  The little thyroid gland controls our body temperature.  If you are hypothyroid your temperature is going to be lower making you an excellent habitat for bacteria and viruses.  Just by taking thyroid medicine you make yourself a tougher target for disease.  Same goes for vitamin D, magnesium, and many other levels.

If you do not feel your practitioner is qualified in this area, contact WIP for their list of practitioners who use them frequently.  The phone # is 1-800-279-5708.  The pharmacists are quite knowledgeable and helpful.  They also put out wonderful articles on topics from fatigue to high blood pressure, hormone testing, liver, vitamin D, and yeast – all subjects MSIDS patients contend with.  If you have a subject you need information on, contact them and they will send you literature on it.

Part 1:

Part II:

Part III:

Part IV:

Part V: