Tick-borne disease diagnostics and treatment is a science unto itself. Since 1984 Dr Joseph Burrascano (of ILADS, International Lyme And Associated Diseases Society) has issued sixteen editions of his Treatment Guidelines, and they serve as a strong foundation for many Lyme-literate MD’s (LLMD’s). You can read his last edition from 2008 here:
ILADS-style LLMD’s follow a certain philosophy, that long-term antibiotics are part of an effective treatment, and that the criteria for determining Lyme and Related Co-Infections do not depend on test results that are most often false-negative.
When I began looking for a doctor, I was desperate and posted in Lymenet’s ‘Seeking a Doctor’ section (http://flash.lymenet.org). I said I would travel anywhere on the planet to see a morgellons-literate doctor, as long as they would know what they were doing.
I had done plenty of searches for credible morgellons information and sometime in December Amazon.com let me know there was a new book out that might interest me. I had read about Cindy Casey’s morgellons experiences with her hubby, but it would take some time for me to make the connection to this book written by Ginger Savely, also a registered nurse who had been working with morgellons patients since at least 2004.
When lookup and TF responded to me on Lymenet, I was reminded of the book and was told to inquire if Ginger was seeing new patients. What an idea! I wrote to her and she responded quickly. Within a matter of a day or two I had filled out the new patient kit, set up an appointment, and on April 24th, 2017 I traveled to Washington for a three-day visit.
The trip was hard, really hard, on my body. I had just quit a 25 day herbal protocol that was on the verge of killing me, and I was suffering terribly from heart palpitations, heart arrhythmia, air hunger, and exhaustion. When I arrived at her office I was quite literally gasping for air. I was clinically diagnosed with lyme, bartonella, babesia, and morgellons. Ginger saw my fibers and lesions and there was no doubt in her mind what was going on. 17 doctors, 13 ER visits, and finally someone who really saw it for what it was. Not only was she able to determine my situation, but her compassion is what made my experience so positive. I returned home with hope, the first glimmer of light in almost 10 full months.
I started treatment the next day, upon arriving home. Again the ride and airports and metros were hard on me, but I had stocked up on all my meds while in Washington and was now armed to return to the barren wasteland of Canada where very little knowledge of tick-borne disease exists.
The first two weeks of treatment were insane, my body had never done anything like this before. The first three or four days my body would entirely lock up, unable to move off my bed. My back and neck was on fire. I posted in Lymenet asking for advice, and was consoled that this is part of the journey out of the rabbit hole. Two weeks passed, and I found solutions to cope with the excessive inflammation, and my palpitations stopped as well as my air hunger. Two months later I was starting to feel other tangible improvements, the amount of fibers drastically decreased, and the appearance of sand/crystals stopped entirely.
There is so little information out there on morgellons disease, but the two torch-bearers lighting the way are Ginger Savely and Cindy Casey.
Here is Ginger’s Book, if you’re reading these posts with interest you should not skip out on reading this. It is full of ideas and comfort.
“Morgellons: The Legitimization Of A Disease: A Factual Guide By The World’s Leading Clinical Expert”
Read my Amazon review here:
Ginger is taking on new patients, however there is a waiting list. I only had to wait a month, and the key to getting the appointment was completing the new patient kit quickly. I understand that since the Morgellons conference earlier this year the waiting list has grown to three months or so, but seeing her really is worth the wait. Write to her at firstname.lastname@example.org and ask about availability.
If you cannot afford or travel to see Ginger, her book has a section dedicated to solutions. For DIY people this is imprecisely what may work for you. Why imprecisely? Because it takes skill, intuition, and experience to clinically diagnose based on symptoms. One person may have lyme and morgellons but no other co-infections, or like me, who only tested positive for bartonella (PCR test) but also presents with the symptoms of lyme, babesia, and morgellons. And there is no test yet for the bacteria that causes morgellons. So the solutions in the book can be experimented with, three months or more at a time, assuming you can obtain access to genuine antibiotics and other suggested supplements. There really is no replacement for an experienced Lyme/Morgellons-literate doctor, but if cost and/or ability to travel is limited, you can try to work your situation out by following Ginger’s suggestions.
Here is Cindy Casey’s Foundation for Morgellons Disease Awareness
The Charles E. Holman Morgellons Disease Foundation
And here is ILADS, The International Lyme And Associated Diseases Society