I have 'equivocal' Lyme test results from Igenex - so I'm just not really certain what my problem is? I've wondered about a virus causing some of what follows, but don't know where to start?
My symptoms are small in number but BIG on the misery scale. I only have right ear tinnitus (no big deal to me), insomnia issues and burning, sensory nerve problems which is my BIGGEST problem
Soles and palms are the worst and became a problem 3 years ago, despite having clues of this as far back as 5 years.
Since stopping a 6 week Lyme treatment in 2008, I now have this burning in my rear-end while sitting for more than 10 minutes and along my upper spine if lying for more than about 30 minutes.
Distinct paths down the outer sides of both arms also burn when lying down as do my palms.
In short, can Lyme leave someone basically intact (energy, mental, eyes) yet screw up their peripheral or central nervous system causing JUST sensory problems?
I know Dr. C in Missouri has called Lyme a neurosensory problem more than any, but I just cannot keep chasing a myth?
I certainly believe I may have Lyme, but what to do? 6 weeks of IV did nothing for me whatsoever.
At this point, all I really want is relief of this symptom.
Much of what Tracy9 has discussed about 'small fiber neuropathy' does resemble my symptoms, however, I am NOT bedridden. Wish I could be, but my back and arms touching the sheets after 30 minutes makes it a miserable place to be
I know someone has also mentioned RSD/CRPS? My research on this always seems to show people with inflammation, skin discoloration, which I do not have.
Really gets old feeling like your soles, butt, hands, spine are wrapped with a heating pad on 10.
Thanks for any ideas?
MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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posted
Hi - we don't always test positive in the tests even tho we may have Lyme. Oddly enough, many times, after people start treating, they show positive on tests.
Your symptoms sound like Lyme symptoms. The Lyme bacteria goes after nerves and soft tissue and can cause symptoms anywhere.
Symptoms can change all the time with this disease. Sounds like this is the way it's affecting you now.
You need to see a Lyme-treating doctor for some more treatment! Antibiotic med options are orals, bicillin shots and IV. An experienced LLMD will decide with you what treatment plan to pursue.
Someone here will be along soon to send you a doctor list.
Posts: 13171 | From San Francisco | Registered: May 2006
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There aren't many LLMDs in Florida or the SE. If I was more confident I in fact have Lyme, I would continue treating it.
I would NOT return to the LLMD I originally consulted!
Again, my only hope is that I could improve these terrible 'nerve' sensations.
They certainly do fluctuate based on temperature, but most importantly contact.
If nothing is touching my soles, they can feel normal. But standing still, even in sandals, I feel like a coal walker.
If I start moving, the burning/stinging is less noticeable. Clearly there is some sort of nerve 'hypersensitivity' where 'normal' contact is producing a pain sensation.
This is strictly neurological pain, not arthritic like so many others deal with.
Can Lyme cause this? Again, I really don't have 'constant' nerve pain, assumimg the circumstances are right.
However, my threshold for normal standing, sitting, lying etc is making like increasingly difficult.
And the irony of this is I really feel fine, I am not currently 'sick'. I was sick 4-5 years ago, before the nerve pain, but I really am better now, apart burning nerves.
Gabapentin helps a little, but I cannot stay on this cr*p, causing weight gain which I'm trying to fight. Perhaps it's slowed my metabolism?
Welcome any other thoughts?
MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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posted
I'm a fellow coal walker:) It used to be my main symptom, along with the tingling hands. Now, I've moved to tennis elbow, headaches, tinnitus nausea, etc.
I am CDC positive for Lyme. It was the ONLY positive test in three years of extensive testing by four different neurologists, including Johns Hopkins.
I think you should keep Lyme in the picture as a cause. I even had the small fiber biopsy at Hopkins because I was SURE I had small fiber neuropathy. The results were deemed normal, but it had a few weird descriptions of my cells. Regardless, they called it normal and my ELISA for Lyme came back positive. A Western Blot done in Hopkins lab said I was negative for Lyme, so they wrote it off as not Lyme. I think they were wrong. Igenex says they are wrong and even the CDC guidelines say they are wrong.
Best of luck. I am going to Dr. J. Not sure who you went to. I'm in the southeast.
-------------------- CDC Positive for IgM - Igenex I am not a physician - FYI:) Posts: 10 | From Mid Atlantic US | Registered: Dec 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
6 weeks is not very long on Iv for lyme, FYI, many people do IV for 6months up to 2 years.
Your symtpoms sound like almost half the people from my old lyme group, its a familiar story.
Its really hard to find a LLMD that you like and isn't 9 hours away. I have seen 3, and I know I would not go back to 2 of them.
Agree with another poster that bartonella can cause burning you describe, and many people don't come up positive for that either.
Best of luck to you
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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