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


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 5 years 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.  I also must add that we both have relapsed three times necessitating 2-3 months of treatment each time.

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!)





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 cysts are common with Lyme/MSIDS.

Numerous coinfections cause skin tags (husband has them all over his back), many patients gain weight, lose head hair (this would be me), have bizarre menstrual issues, experience anxiety (husband had this) and depression (we both had this) as well as can’t tolerate stress (both had this), 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, but it isn’t.

Most recently, John Scott’s work not only found 63% of patients developed chronic Lyme disease, that Bb is pleomorphic, and that many patients experience despair and suicide, but also that his Case 4 provides confirmation for an ACA rash and gestational Lyme disease (club feet at birth).  Both parents tested positive for Bbsl, which is highly suggestive of Lyme being a STD, with the baby being born infected and with a birth defect indicative of Lyme infection:  https://madisonarealymesupportgroup.com/2020/06/12/formidable-evidence-for-sexual-transmission-of-lyme-disease-first-study-to-document-aca-rashes-in-canadian-patients/

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. The CDC flip-flops more than a waffle-maker.

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, as well as clinical reality.

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, has personally seen and treated cases of 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.
Now granted, animals eliminate freely in the cage and are exposed to both urine and feces – unlike humans who have proper sanitation, but this study shows that no ticks are needed for transmission.

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.

If this happens in animals (other mammals), it’s highly probable it happens in humans (other mammals).

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 from one 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 researcher 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?

One word: vaccine development.

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/


“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

There’s lots of red herrings in Lymeland.

%d bloggers like this: