Discussions By Condition: I cannot get a diagnosis.

Lyme Symptoms, But...

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • August 8, 2007
  • 08:43 PM

Hi,

Appreciate this great forum!

I'm male, 58, 5'10 185 in good general health

I have a painful neuropathy/parastethsia since 1987, and no cause has yet been discovered.

In June of 1987, I saw a large bullseye rash on my leg. It was strangely painless and itch free. It was pink in the middle and blanched on finger compression. I felt fine for a while, then started noticing strange "muscle twinges" when doing yard raking and such.

In September of 1987, I awoke with a mild headache and fever. The fever was remarkable in that I had never had an unexplained fever before. No sore throat, belly cramps, cough, or anything.

In the following 2 weeks, my life became a nightmare. My muscles began to hurt more on repetitive use. I had painful muscle spasm in my jaws and under my chin and tongue. I began having "glove-and-stocking" parastethsias.

Within a few more days, the parastethsias became painful neuropathy. It was everywhere. Head, face, arms, legs... but I think it was mostly absent on the belly and back.

Went through the medical mill. I guess every test known to science. In about 1988, took a lyme test, negative. Took another about 2 years ago, still negative. Docs are baffled, no meds help, and doc's are wondering if it's all in my head.

My Symptoms:

Neuropathy... very painful tingling, throbbing, gest worse when tired
Painful joints, without swelling, comes and go's over weeks and months
Muscles easily cramp (charlie horse) when I get into awkward positions
Feeling of heart palpitations that mostly do not show on Holter monitor
Easily fatigued
Extreme sleeplessness
Restless legs

My questions are, could 2 Lyme tests have missed it?

If a new Lyme test comes back positive, could treatment ease my neuropathy?

If I'm stuck with it for life, is there any effective medicine for neuropathy?

Many thanks for any replies or advice!

Rob

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10 Replies:

  • Get a Western Blot AND a dna polymerase chain reaction (PCR) blood tests. See if your doc will give you potassium supplements. It might help with the charlie horses.
    rad-skw 1605 Replies Flag this Response
  • Get a Western Blot AND a dna polymerase chain reaction (PCR) blood tests. See if your doc will give you potassium supplements. It might help with the charlie horses.I know Lyme tests are unreliable, and some people take them repeatedly until they come back positive. They sometimes go through a big cycle of IV antibiotics for nothing. The obvious questions are, are fales positives as prevalent as false negatives? What is the accuracy of the WB and PCR?My doc is afraid of potassium except in very mild doses. I try to eat all the bananas I can.Can anyone tell me what pain reliever works best for neuropathy?Thanks Rad!
    Anonymous 42789 Replies Flag this Response
  • Find local NAET/Bioset therapy...no matter what your diagnosis is, it works. You see, disease=disease=disease...It's all the same thing, no matter what it's called. I've had 6 Bioset treatments and am heading back to work for the first time in over a year.By the way, I had all of your symptoms and about 70 more....now, they are gone...even the crippling joint pain that they were giving me pain pills for and the heart palpitations I was taking Xanax for.Now I am medication free and symptom free...NO KIDDING!!!!Best of luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • PS...a western blot will tell you if you have Lyme and a PCR test will tell you if you have mycoplasma...neither of these tests will actually HELP you...just give you a diagnosis.If it is positive for either, they will give you long term antibiotic therapy...which I would fully investigate before undergoing....it often does more harm than good.......best to you and I hope you are well in no time after NASET/Bioset!!!!!!!...again...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Lyrica is a new medication of painful neuropathy. Also, potassium supplements, if taken only when you have a charlie horse,should not harm you. Tell your doctor to give you just a few pills, (he might even have a sample), and insist. Does your doctor think you can't be trusted to try a short drug trial? Low levels of certain minerals known as electrolytes—magnesium, potassium, calcium and sodium—have long been linked to leg cramps. (Marathon runners sweating out the miles are particularly prone to this variety.) Certain drugs, such as diuretics have also been cited as a cause of leg cramps. Dialysis patients often complain of leg cramps, and pregnancy is also a factor
    rad-skw 1605 Replies
    • August 10, 2007
    • 10:37 AM
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  • Lyrica is a new medication of painful neuropathy. Also, potassium supplements, if taken only when you have a charlie horse,should not harm you. Thanks for the reply Rad.My potassium levels test out OK. My doc says bananas and a mild OTC supplement should be fine. It should be noted that too much or an accidental overdose of potassium can be very nasty.I tried Lyrica for a week or so. I may still have some.IIRC, Lyrica had a nasty side effect. I seem to recall it making me feel lethargic and unable to concentrate. Wonder how long it takes to get used to Lyrica, if at all?Thanks again,,,RobA
    Anonymous 42789 Replies
    • August 14, 2007
    • 05:36 PM
    • 0
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  • I hate to keep harping on the potassium, but my +K levels were all normal, and dietary supplements didn't help. I tried the salt substitute that replaces sodium with potassium but it made my tongue sore. I still had the leg cramps. Then my blessed doctor gave me some potassium samples and it worked RIGHT AWAY. There is no danger of over-dosing if you only take one pill. I'll get a charlie h. when I over-exercise in hot weather. Maybe I'm sweating away too much potassium which wouldn't show on a lab test. Potassium overdoses ARE serious, but many are elderly people with cardiac problems who double-up on their doses or forget. If you see another type of doctor, ask his opinion on a little potassium to relieve the miserableness of leg cramps.
    rad-skw 1605 Replies
    • August 15, 2007
    • 11:30 AM
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  • mommy cat and original poster, Western Blot is apparently unreliable... written by a lyme researcher and backed by a well known, world famous CFS doctor it says "If the patient is fortunate enough to get a positive Elisa test, a Western Blot test method of detecting a specific protein in a sample by ‘probing’ with antibodies specific to the target protein] is then carried out - this is just as unreliable as the first test and excludes even more infected patients! Some people may be positive for the Western Blot but not the Elisa, but they would never be tested. " I suggest you read the lyme article http://www.immunesupport.com/library/showarticle.cfm?id=8199 which also tells which are the better lyme tests. ........................................ I too think you have lyme. If this turns out to be true. I suggest you not only treat it, but also work on getting the lyme neurotoxins out of your body www.chronicneurotoxins.com If just left, this problem will cause more and more damage.
    taniaaust1 2267 Replies
    • August 15, 2007
    • 10:54 PM
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  • I tested negative for Lyme too and have all of your symptoms.I have chronic fatigue syndrome....has this been considered or ruled out by your doc?Rob, no NAET or Bioset for you?...it works!! Good luck in your search...mommy cat:)
    mommy cat 1654 Replies
    • August 16, 2007
    • 00:51 AM
    • 0
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  • mommy cat and original poster, Western Blot is apparently unreliable... written by a lyme researcher and backed by a well known, world famous CFS doctor it says If just left, this problem will cause more and more damage.Thanks for the great link. It appears that Lyme is still hard to diagnose after all these years. I guess it doesn't matter very much anyway. If I have indeed had Lyme for all these years, the prospects for getting relief are poor.I guess a real key is finding an educated doctor. I've been to many, and when I tell them my symptoms, their eyes glaze over.Can anyone recommend a Lyme-savvy doctor in South Central Louisiana?Many thanks,,,Rob A
    Anonymous 42789 Replies
    • August 16, 2007
    • 03:32 AM
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