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Re: Is this Lyme?
Nov 7, 2006
Dear Willie,

First things first: post your geographic locale, then someone may be able to direct you to a lyme-literate physician (LLP) who's educated and specially trained in this unique infectious disease field. You need to see someone of this calibre in order to have accurate diagnosis and treatment.

Diagnosis: According to the FDA notice in June 1997, the blood tests were, at best, inaccurate due to many factors, and all medical staff were to consider diagnosis of these tick-borne diseases as a clinical one, rather than relying on the non-specific (inaccurate) assay tests. Clinical diagnosis basically means you meet different markers and have various symptoms, which are typical of these diseases. Assay tests are inaccurate, which means you could test negative and actually have the disease, and not receiving treatment, could lapse into serious condition.

Treatment: Simply put, if you believe you have any or many of these tick-borne diseases, and you are provided with proper antibiotics and anti-protozoaics in proper dosage amounts, and you have positive response to the drugs, then Bob's your uncle.

You have many symptoms as I did before being misdiagnosed in the 80's and 90's, progressing to incredible multisymptom multisystem acute disability (eventually had encephalomeningitis, palsy, paralysis to name a few). Accurate diagnosis came after 11 years of total inability to walk, talk, etc. by a Lyme-literate doctor, who halted the progression of diseases toward death. He provided multiple antibiotics in quantum doses, which did stop them. However, after 2 years, he referred me to an incredibly aggressive doctor of Lyme and TBDs (tick-borne diseases) who proceeded as follows:

No drugs for 2 weeks (my health immediately began to deteriorate, and I became wary of his method). Then, he gave me Mepron 750mg. 4 tsp./daily, plus 500mg. omnicef morning, 500mg. omnicef evening, 500 mg. amoxicillin morning, 300mg. doxycycline evening for a long time.

However! Immediately upon the third day of taking this regimen, I was given test tube material, from Immunogenex (IGENEX) of California, an extremely specific and accurately clean lab well-versed in these diseases (the director Nick is a most wonderful individual who provides his time travelling the U.S. speaking in public and medical forums on behalf of victims of these diseases).

I was directed to catch my initial morning urine, immediately freeze specimens in ice (hard freeze), then again I believe the 7th and repeated the 10th days (check with your doc as this was many years ago and I may have the days wrong). Upon collection of all 3, I carried (still in ice box and ice) to doc who sent them dry-ice to Igenex for testing under the Lyme Urine Antigen Detection Assay - LUAT. Test results were all at the highest number.

During same period, the 5th and 10th day of meds, doc took my blood and sent to Igenex for Western Blots, PCR (Polymerase Chain Reaction), etc. He had learned that the organisms are intelligent, and upon not seeing any drugs in your system for a few weeks, they'll come out of dormancy and move around. Then you hit them hard with drugs, they do battle, and we take urine and blood tests while they're on the move and capable of being "captured" for specimen.

See, they hide in our white cells, puncturing them and moving inside, using our white cell as a cloaking device - unable to be detected as a spirochete (lyme bacteria) but appearing as one of our own cells. They also form in incredibly strong cyst colonies, unable to be attacked by our antibodies and many drugs. They also cross the blood brain barrier and go into deep tissue, where drugs and antibodies find it hard to kill them. The lyme bacteria forms are many staged beasts and must be attacked in many ways. Simple.

The Western Blot tests provided past history and present infection rates, markers your doc will explain to you. Mine were many. The PCR also provided incredible off-chart numbers - my doc also tested for Babesiosis, a protozoaic malarial-like being which had high markers, too. This disease has been the most difficult to tame.

In my case, the infections took years to develop, and I had to learn patience that it could take decades to decimate them to a point where I could return to a near normal life. It has finally occurred last year (positive test results for Lyme, Babesiosis, Human granulocytic ehrlichiosis and human monocytic ehrlichiosis and relapsing tick fever - what a bowl of fruit!) treatment began in 1997 with amazing instantaneous results. I stayed that course of treatment, with breaks from the Mepron every six weeks, two weeks off, then back on six weeks - for 6 years until I could go back to work part time.

Then reduced the amounts to half for the next two years, and now I take a minimal dose of each for management, to keep the levels low. And Mepron only when I feel flare ups of Babesiosis. In managing the drug side effects, you'll want to read about yeast development. You must take your drugs at breakfast with food, then about 11am, eat 2 yogurts (learn to like it if you don't) and adequate Lactobacillis Acidophylus Capsules (the best kind are sold in health food stores - keep refrigerated). If you don't manage the yeast, you'll wind up with a super secondary infection which you'll also wish you didn't have. So listen up on that one.

There are quite a few lyme- literate physicians in southeastern Pennsylvania, most of whom are fairly concerned and caring and willing to provide realistic treatment, not withholding treatment. I don't know where you're from, but the mid-atlantic region is loaded with great docs - you just have to travel sometimes to find someone. I originally went to New York and New Jersey. I've met people from Texas and California in my doc's waiting room.

Your greatest feat will be finding a doctor who will give you these things, and not withhold treatment or adequate treatment from you. If you are unable to have success in this area, please look up lyme support groups for your area, attend and communicate with others who've "been there", so you can find a TBD educated physician. Your life is in your hands with these diseases - best of luck and may you be blessed -

p.s. I did Rife for many months but it didn't do much....and heard varying degrees of success. What have we got to lose? Try everything!:)


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