Scleroderma and Lyme disease/MSIDs

Janet 2020 Canada

In 2002, the good health I had experienced all my life was about to change. I noticed a bump on my chest after attending a country wedding — it was like some kind of an insect bite. It began to change its form and started to resemble a ringworm infection. I also began to have a chronic tickle in my throat and felt lethargic. A topical treatment did not resolve the lesion plus it started to change forms and began to look like a couple of large papules. The skin specialist thought it looked like a spider bite, but when the biopsy came back, suggested Scleromyxedema. I had the lumps removed and further investigation suggested that it was not scleromyxedema but still no definite answer.

In the years that followed, I became more lethargic and was dealing with diarrhea and constipation. I also noticed a yellow waxy itchy film on my abdomen, which eventually disappeared probably as a result of the antibiotics I took for the diarrhea.

Then I developed a pain / pressure / inflammation in the neighborhood of my gall bladder and where the stomach empties into the small intestine. After being referred to a Gastroenterologist for a bunch of tests including 2 MRI’s, everything looked structurally normal. This was very frustrating because I knew something was very wrong. Side note: An interesting comment that that a Chiropractor had said to me in 2006 was that he thought I had parasites. I would connect the dots back to that comment several years later.

By late 2011, I had noticed significant changes in several of my fingers. They developed several large painful growths on them. I was referred to a Rheumatologist who diagnosed Scleroderma mostly as a result of the calcinosis in m fingers. I had a positive ANA but all of my ENA’s were negative.

By the spring of 2012, my digestive system had pretty much stopped. I took a leap of faith and went to see a Naturopath and with the help of digestive supplements, we were able to get my digestive system working again. Low light laser therapy helped with the raynauds.

By late summer 2012, I felt like I was dying. I began researching in earnest and found the Roadback site. The infectious theory made sense! Loosely following the antibiotic protocol as laid out by the Roadback Foundation, by the end of September I could actually feel my body coming alive again.

Over the ensuing years, there were many more layers to peel back: hypothyroidism (desiccated thyroid treatment helped). I also decided to get tested for lyme: results were negative through mainstream labs, but positive from a private lab in the U.S. I was treated with 2 months of doxy. I began to feel good again but very quickly started to slide after the treatment was completed.

In 2014, I travelled out of province to get treated by an LLND who was licensed to write prescription antibiotics. She treated me for lyme as well as bartonella (rifampin and clarithromycin). I was improving and in the 5th month of treatment we incorporated Plaquenil. Unfortunately, after about 3 weeks I had to stop all treatments. I was dealing with thrush and digestive issues again. She put me on a herbal concoction and I seemed to manage ok for several months well into 2015. The thrush cleared up and my bowel movements returned to normal.

Swallowing issues were next which I still sometimes experience today but I have a better understanding of some things that are behind it such as a small hiatal hernia, h pylori, parasites, cortisol levels and stress, poor sleep, vagus nerve and parasympathetic system. Structurally my esophagus was fine so I knew then that the swallowing issues had more of a physiological and psychological component to it.

In 2016 I sent blood work to a lab in Germany. My lyme test came back showing no activity, but I had a positive for chlamydia pneumonia. In 2017, I got referred to an Internal Medicine specialist who treated me for 6 months (rifampin daily and azithromycin MWF). I felt great except for my gut. I had symptoms of h pylori and intestinal worms, burning in the stomach, severe cramping and heartburn which was ongoing for 1 ½ years. Tests were always negative even from a private lab for the worms. Finally my family doctor agreed to treat me empirically for the parasites in late 2018. At last I began to experience some relief. To this day, I still do a biltricide treatment about once a month.

Note: I think it very important to think “parasites” if one has continuing digestive issues or has been labelled with IBS. Although my Gastroenterologist refused to treat me empirically for worms, he did admit that one time he pulled a live tapeworm out of a patient during a procedure, sent it for testing and it came back negative.

In the summer and fall of 2019, I was either reinfected or my lyme and bartonella, etc were reactivated. I developed an infection in my foot, had arthritic type pain and electric shocks. Tested again through the German lab, and tests were positive. Fortunately my family doctor was willing to prescribe based on the advice of one of our local Naturopaths who is ILADS trained.

Since January 2020, I have been doing Clarithromycin daily and occasional minocycline (subtle but definite improvements showed in the calcinosis). I will be incorporating tetracycline very soon (easier for me to tolerate). I have also been doing Cryptolepis, Japanese Knotweed and Cat’s Claw. For the most part I am feeling quite good and am confident that this protocol will help to finally restore my health back to where it should be.

My advice – trust your gut intuition, do your research and believe in your body – our bodies are such miraculous machines.

My prayers and good wishes go out to all!

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