I'm curious to know how many people out there have been diagnosed with peripheral neuropathy (PN), as evidenced by a nerve conduction study or some other method.
Obviously, Lyme can cause all sorts of neurological symptoms. But while I have read in some places that Lyme can cause PN, a lot of what I have read about Lyme has focused on the central nervous system without mentioning PN as well.
I assume that Lyme can affect the PNS only, the CNS only, or both.
Thanks.
Posted by Keebler (Member # 12673) on :
- When it comes down to it, it doesn't matter how many people have PN with lyme. What matters is that person in question (who ever it may be now - or any day of the week) who may have PN as a result of lyme. It can happen, it does happen - just not for everyone.
ANY of the nervous systems can be affected, in a variety of ways.
You will see many good results from basic searches at Google for:
peripheral+neuropathy, borrelia
&
neuroborreliosis, demyelination -
Posted by Keebler (Member # 12673) on :
Zajkowska JM, Kułakowska A, Tarasiuk J, Pancewicz SA, Drozdowski W.
Uniwersytet Medyczny w Białymstoku, Klinika Chor�b Zakaźnych i Neuroinfekcji.
CONCLUSIONS:
About neuroborreliosis as a cause of peripheral neuropathy we should always think in the case of vague symptoms of peripheral nervous system lesions in patients with potential exposure to tick bites.
Peripheral neuropathies may occur a long interval from the tick bite and are not always preceded by other forms of the disease.
Chronic Peripheral Neuropathy - by W. Kristoferitsch
Excerpts:
. . . Peripheral neuropathy is one of the main manifestations of early disseminated Lyme borreliosis. . . .
. . . However, cases of chronic peripheral neuropathy in late or chronic Lyme borreliosis are less well known. They may occur together with other manifestations of late Lyme borreliosis . . . . -
Posted by Keebler (Member # 12673) on :
- Two excellent articles that explain so much of vital importance:
- by Audrey Stein Goldings, M.D. - Updated October, 2002
Be sure to read both pages.
This article explains the multi-system ramifications of neuroborreliosis (which is what lyme is called as soon as it invades the nerves, which can happen just hours after a bite from an infected tick):
When to Suspect Lyme � by John D. Bleiweiss, M.D. -
Posted by lax mom (Member # 38743) on :
I was diagnosed with neuropathy in my arms and legs via NCS/EMG. I had no idea my nerves were damaged. I guess they just died quietly.
Posted by Keebler (Member # 12673) on :
- 1976, age 23, diagnosed by EMG (nerve conduction test) with PN in both hands along with "carpal tunnel" Suffered for decades.
21 years later, in 1997, the cause identified: lyme & two other tick-borne infections.
Positive tests from Igenex were not acknowledged by any MD in my state, however ("no lyme here" they all said then, and still say so now).
BTW, I would not urge anyone to have an EMG - it was the most painful test I've ever had, just barbaric to stick thick long needless deep into my arms. Barbaric. And it did not tell me anything I did not already know.
If a doctor will not believe symtoms you report, find a different doctor. Many tests are not necessary and if they can't tell us anything beyond what the patient reports and doctors can assess clinically - pain and expense are not to be minimized. It was horrific pain. Never again.
There may now be some computerized tests that could test ON the skin or with some kind of imaging. Not sure how they've progressed. It's just my policy to never again have any test that causes pain beyond that of a basic blood draw. -
Posted by lax mom (Member # 38743) on :
Amen Keebler. It took me 2 months to recover from the EMG test. My LLMD said it stirred up the Lyme in my body.
I also feel like taking the same needle and inserting it throughout the body allowed the bugs to spread to areas they previously weren't affecting.
Posted by Keebler (Member # 12673) on :
- FWIW, I have read of a person here or there who did not mind the "feeling" of the EMG. Many have reported terrible pain, though.
Oh, and there are many more painful, excruiating tests and procedures that I saw my mother barely survive. I wish we had receieved more detail beforehand.
Just barbaric. I question what kind of people would design some of these and then what kind of a person would order them? Something is very wrong with inflicting this kind of pain.
ICE TEST - once I had to keep both hands immersed in thick ice water, lots of ice cubes for 5 minutes. That was also horrific. I have symptoms of Sjorgren's. Even if I know it is from lyme and an umbrella term, cold is very painful.
The doctor who ordered that test was just mean. I think he was punishing me for asking too many questions and having too many symptoms.
When I tried to remove my hands a couple times, in tears and wretched with pain, he commanded the technician to tightly hold my hands down and he (the tech) was way stronger & bigger than I was.
What kind a person would do that? I can see that the tech might have been inclined to follow the barked orders but, still?!
And, the "test" was of no real use, anyway. It was supposed to measure something with my heart and blood pressure but it was so gruelling that I'm sure my blood pressure was just kaput.
I wonder if this was really a legitimate test or his idea to keep me from asking for any more diagnositics. And that worked. I quit his service.
Looking this up, sounds like this, but it was supposed to be for ONE minute, at which point I was already in terrible pain (after seconds) . . . I know my hands were held in for many minutes, I think for five, actually.
Still, if it hurts so, the outcome will be all messed up from pain reactions.
The cold pressor test is a cardiovascular test performed by immersing the hand into an ice water container, usually for one minute,
and measuring changes in blood pressure and heart rate. Its response is clinically indicative concerning vascular response and pulse excitability. . . .
. . . This is done by requiring a participant to place their hand in the cold pressor for as long as they can. Once pain is present, they let the researcher know. Once the pain is unbearable, the participant removes his/her hand. . . .
[I was not allowed to remove my hands, both hands as I recall.] -
Posted by GretaM (Member # 40917) on :
Yes. PN.
Originally diagnosed as reflex sympathy disorder.
No nerve conduction tests, just in office tests by two neuros and then later by my lyme doc.
Mostly affected on my left side.
Posted by Carol in PA (Member # 5338) on :
Omg Keebler, I'm so sorry you had to go through that.
Personally, I think anyone who orders uncomfortable/painful tests for his patients should be required to go through them himself every year.
When I worked in a hospital, doctors routinely ordered laxatives to "clean out" patients for abdominal xrays. I remember debilitated old women crying because they couldn't get themselves to the toilet quickly enough.
After I had to take laxatives myself to get "cleaned out," I realized how awful it could be.
Peets, I was having symptoms of peripheral neuropathy, but I didn't realized that's what it was until it improved when taking supplements.
The Lyme bacteria uses up our cholesterol, which coats the nerve fibers. When the coating is damaged, the signals do not pass down the nerves properly.
Some things I found to help were B vitamins, B12 Methylcobalamine sublingual, and Gotu Kola.
Gotu Kola improves blood circulation, and when I took it I noticed that my dexterity improved. Sublingual B12 improved the aching burning pain in my lower legs and feet.
Dr. Jacob Teitelbaum has lots of information about treating peripheral neuropathy on his site, https://secure.endfatigue.com/
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