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Old 11-07-2006, 03:13 PM   #1
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Is this Lyme?

I am new to this formum and am in search of some advice and council. I have been suffering for approximately 2 1/2 years from severve pain in my hands and shoulders ( which moves around) and more recently the balls of my feet. This has also been accompanied by spells where I become very "dizzy" and feel as if I'm about to faint. I had these symtoms for about a year before someone suggested that I get tested for Lyme. The Doctor put me on antibiotics before the test results came back because of the symptoms. The test was not conclusive. Another test was done after I had been on the antibiotics for about a month and it came back negative. The ultimate diagnosis was that I have Rheumatoid arthritis and they don't know what the "dizzy" thing is all about. I never bought into that diagnosis because this all happened at the same time and there is no history of RA in my family. I have always thought that it was Lyme.
I recently spoke with an a friend of my brother who had Lyme and his symptoms where identical to mine....right down to the balls of the feet! He exhausted traditional treatment without much success. He is now , in his words, cured. He purchased and used a RIFE machine to eliminate his symtoms and is now feeling wonderful.
I guess this is really a two-part question. Does this sound like Lyme to you and has anyone had experience with RIFE? Any help and advice would be greatly appreciated.

 
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Old 11-07-2006, 05:39 PM   #2
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Re: Is this Lyme?

Willie
Welcome to the lyme board.

Were your test thru Igenex. If not, I would suggest you have them do it. They use the purest antigen for the test and get the most accurate results. But you can have lyme and come back negative. The symptoms do sound like it could be lyme. You also need to be tested for the co-infections. If you post your area, someone will recommend a LLMD.

I have no experience with Rife, so can't help you there.

Prayers....Marsha

 
Old 11-07-2006, 06:37 PM   #3
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Smile Re: Is this Lyme?

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!

Bahamamama

 
Old 11-07-2006, 08:05 PM   #4
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Re: Is this Lyme?

Thank you for that wonderful post. I'm dealing with a lot of Lyme brain fog and I marvel at how clear you thinking and writing is. I used to work in publsihing. Part of my work included proofreading. I no longer know how to spell certain words. It's frustrating. I have late stage Lyme and it is indeed multi-system. I am unable to work. Some days I am unable to walk. I have Lyme seizures, migraines, heart problems, fibro-like symptoms, eye problems and the list goes on and on.

Would you post which doctors you saw. I will write them down and let you know when I have them, then you can delete their names out.

Thanks so much.
Kayda

 
Old 11-08-2006, 04:29 AM   #5
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Re: Is this Lyme?

Willie, don't forget to get tested for all the co-infections too, the foot thing is something I had and I have bartonella, which they say can cause pain in your feet. Igenex is a good lab, try to use them if you can.

I second all the good advise you're getting.

 
Old 11-08-2006, 06:11 AM   #6
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Re: Is this Lyme?

HI WILLIE!!! Welcom to the board! Sorry you are feeling crappy....

Every inch of me hurt ...yes even my feet ....there wasn't one spot on the bottom of my feet that didn't hurt...ouch!

Like othere suggested getting tested by Ignenex would be a good step to take....

Do you remember getting a tick bite?

Where all here to answers questions and send hugs when you need them

Jodie



Bahamamama......GREAT POST! And WELCOME to you too......thank you for sharing.....well put.......
happy to hear you've made it out of the nightmare too!!!


 
Old 11-08-2006, 11:41 AM   #7
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Re: Is this Lyme?

Thank you all so much for responding. I am in Baltimore, Maryland. Any advice on a LLMD or other understanding physician woud be greatly appreciated. I am a studio musician (guitar and piano). Not having the use of my hands is breaking my heart!

 
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