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/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/ and 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 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.  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 actually 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: 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 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:

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 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.

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 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 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.

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: 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.”

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.  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.

Here’s another Bibliography on Gestational Lyme & via lactationhttps://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.

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.

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.

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)http://www.prweb.com/releases/2014/01/prweb11506441.htm

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://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.  http://www.seranogroup.org/index.php/site/entry/why_no_ticks/  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: 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.

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

But, you are duly warned.