multifacetedme said...
I seem to remember reading in the literature somewhere, Dr.'s observing, that sometimes the sickest people were the ones that tested negative given how deep it gets in the system.
For me, the first test was negative, and IGEN-X, although it didn't show a bunch of bands positive, had one that showed an active band.
From the traditional medical standpoint the IDD concluded, that because my Western Blot was negative, I couldn't have lyme. Her professional view was that, my long host of symptoms would go away now that my brain aneurysm had been repaired. She admitted she didn't keep up on the literature and proceeded to give me MIS-INFORMATION and talk BS rather than say, I don't know.
I worked it systematically keeping track of my symptoms.
I researched every possible disease that could possibly match these symptoms.
I asked for the tests to rule these things out, or discussed them with my Dr.
What made most sense to me was the strong match for LYME.
What also made most sense to me was Dr. Horowitz, who has treated over 10,000 patients and considering his screening tool. I took his quiz and it scored in the 90s. His advice is to consult with your medical professional if it is over 46.
I was at a point where I felt like I was dying. I could feel my body shutting down and I was only able to walk ten yards. I decided I didn't want to die and decided to take direct right action and treat myself for LYME. I also got counsel from a naturopath, and CMD, who gave me a clinical diagnosis of lyme.
I did two things:
1. herxed
2. improved
My symptom list has gone from 2 pages long to a short paragraph.
Is it lyme? Is it co-infections?
My philosophy is, if it quacks like a duck, and looks like a duck, then it is probably a duck. and if you give it duck food and it responds to duck food like a duck would and should. Well, then, it is probably a duck.
Do I know 100% absolutely for sure that I have lyme and co-infections.
No.
Do I care?
No.
I know that 9 months into the process I no longer feel like I am dying.
Yes - it is possible that I happen to have something else that just happens to respond to a lyme protocol, and just happens to cause me to have herxheimer reactions in response to: bactrim, colloidal silver, and anti-bacterial herbs.
I don't really friggin' care.
When you want to live, you'll do whatever it takes.
To date, I have not uncovered anything in my research that would point to anything OTHER than lyme and co-infections that would explain the symptoms. When I treat it like it is a bacterial infection, I make progress. When things came to an impasse, I went back to the literature for remaining symptoms and began to treat for possible candida, possible fungus, as well as treating possible biofilms and possible cysts - more progress.
I am convinced, if I had waited for a diagnosis by a Dr., and hadn't taken action, well, I would have gone from being able to walk ten yard to none. I'd be bed-ridden, and much, much, much sicker than in the state I was in where I was so miserable I was wanting to be dead rather than live in a body so out of sorts and in pain so severe the only rest I could find was resting in hot bath of epsom salts.
If YOU have a list of diseases that cause the symptoms lyme and co-infections cause - I'd LOVE to see them.
Good question - thanks for asking.
I would also like to add - that is because of this forum - and the kind, caring, informative people here that I attribute to having my life back. It is a new normal and I now know that this is a rest of your life gift. THANK YOU!
Fibromyalgia, POTS syndrome, many other infections. I had someone recently tell me about
how they were in a wheelchair, tested negative for lyme but saw an LLMD who thought it was lyme, but also found giardia infection, then she treated the giardia and is already 80% better in a month or two after years of illness.
Yeah, if you happen to have an infection that responds to doxycyline or ceftriaxone, like lyme does, who cares? But what if you don't? What if it's something like POTS, which is completely different mechanism, not a disease at all?
There are just so many people convinced they have lyme because it's an underdiagnosed illness and getting so much press now, but a lot of those people won't have it. A questionnaire is NOT a good way to diagnose bacterial infections. Imagine them doing that for AIDS, or Cancer. Take a questionnaire, we will treat with chemo, and hopefully you had cancer!
If a person has seen neurology, infectious disease, rheumatology, allergy, immunology, endocrinology, and still has no answer, then have at lyme treatment. But otherwise I think it's reckless; it can delay people from finding their true illness, and that's not right, and there has to be a correlation between the most chronically sick people and those people never testing positive by the most respected tests. I am quite skeptical of labs like Igenex. I dig some digging on one lab and found amazingly sketchy stuff.