I'm in my 4th year of undiagnosed neurological symptoms - neuropathy (burning, stinging skin), insomnia, tinnitus and recently some blurry vision.
I've been the whole LLMD route. Had a neg. Igenex test yet it 12 + or IND bands, 8 were Lyme specific. I still wonder if this is trustworthy? IF I didn't have ANY Lyme exposure, would this test have little to no response?
Did a few months of abx, and a few week of IV, absolutely NO improvement!
During this time in 2008, I had a brain MRI without contrast.
The radiologist noted:
"There are one or two punctate foci of abnormal signal intensity within the the LEFT corona radiata, the etiology of which is nonspecific but statistically most like ISCHEMIC, although LYME disease can have the same appearance"
My question: Should I wonder IF the radiologist might not have mentioned Lyme disease in relation to what he saw if he didn't know I already had a Lyme neuropathy dx?
Is this from Lyme or Ischemia? Stroke? Would someone with stoke have all 4 burning hands, feet, spine etc? all brought on my normal contact that should NOT be painful.
Will any of this make any sense and lead to a dx? Only things to be abnormal where the Igenex test, a high EBV result, mildly abnormal brain MRI and disk bulges at several levels of the spine touching spinal cord.
I am NOT sick in the sense of feeling bad. I feel fine and have energy etc. Just nagging burning sensations that seem to fluctuate and intensify when I am in the heat or walk (feet) or sit (rear end) and cannot sleep for more than 2 hours, always wake up repeatedly.
All of this came on fairly sudden 4-5 years ago and has worsened.
Any ideas? Thanks for your help Posts: 247 | From The Country | Registered: Oct 2007
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I am by no means an expert and am just learning a lot myself, but I thought I'd just pass on some information to you about my experience.
I've had several MRI's that have noted this foci and the radiologist has mentioned on three that it could be associated with Lyme disease. They did not know I had Lyme because I didn't know at that time either.
I was just diagnosed last month with Lyme, Bartonella, and Babesia.
Burning, sore feet is one symptom of Bartonella. Have you been tested for any that or any other co-infections?
Hope this helps!
Posts: 217 | From Earth | Registered: Feb 2010
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Never tested for Bart nor any of the co-infections - although I had 2 weeks of oral bart abx in late 2008, my last abx of any kind.
Again, my problems are ONLY neurological, only intolerable one is burning skin.
I still wonder? Is this peripheral neuropathy? Central nervous system problems, be it brain and/or disk bulges, some mechanical issue?
Again, I do NOT have this all the time, just after prolonged contact...feet from walking/sitting, butt from sitting, hands/arms while lying.
Am I the only person on is with the presentation? Doctors just say idiopathic neuropathy, take Neurontin.
Had a passing belief that Lyme is the cause based on my test and brain MRI, now not so sure?
Really don't know who to consult next? More MRIs? Another Lyme test? Skin Punch Biopsy to access small fiber neuropathy?
Just leary of LLMDs. I do NOT doubt this is a real condition, I just wonder do I really have this or something else? If so, how to treat? Does anyone ever overcome neuropathy from this? BTW, I am not rich, can't keep pouring money into a mystery.
What have others done with similar symptoms, test results?
Thank You Kindly Posts: 247 | From The Country | Registered: Oct 2007
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posted
"I do NOT have this all the time, just after prolonged contact...feet from walking, butt from sitting, hands/arms while lying."
I experience the same thing. I also have tingling, numbness, and soreness/pain.
My neurologist had me do nerve and motor testing, but for some very strange reason he did both arms, but only one leg.
Anyway, the test showed that I have some nerve damage in the leg and he diagnosed it as mononeuropathy. But, I don't see how he can actually say that when he didn't test both legs as I complained of symptoms in both legs, so I have a feeling it is not mono.
Sorry, I'm not much help! Hopefully, others will post here and be able to give you some suggestions/advice. Maybe getting another opinion or seeing a Lyme neurologist might answer some of your questions too? Until then, I would just keep reading, researching, asking questions, then go with what you know and feel.
I know when I started reading about Lyme, it was like an "Aha" moment for me. After consulting a good LLMD and having the tests back it all up, I felt so relieved and am happy to be on a healing journey as it's been a while!
Best of luck to you!! Keep posting on your progress; I'd be interested to know.
Posts: 217 | From Earth | Registered: Feb 2010
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posted
In my opinion you do most likely have lyme disease -- maybe some coinfections as well. Were you tested or treated for any coinfections such as bartonella or babesia or ehrlichia etc?
Hubby has had about 10 MRI's -- he has 4 or 5 of the white matter lesions. Many different radiologists gave many different readings -- everything from normal for his age to ischemic changes to migraines to lyme disease. In my opinion a brain SPECT scan is much more definitive -- but there too it depends on the radiologist who reads it as to how it is interpreted.
Hubby had Parkinsonsian tremors and myoclonus and other movement disorder issues -- these symptoms have greatly improved but it took many years. His other primary symptoms are mostly gastrointestinal.
Has anyone elvaluated your vitamin and fatty acid status? B vitamins are crucial for normal nerve function. Also phosphatidylcholine which borrelia and babesia both deplete is essential to form the myelin sheath.
The bulging discs are also very common in lyme -- borrelia lives in the connective tissue. Hubby had a treatment called LCD (lumbar cervical decompression) which stopped his back pain. He did 12 treatments -- insurance and medicare both will cover this treatment. Hubby's bulging discs were at L4 and L5 and caused severe muscle spasms.
Many chiropractors have these machines but depending on the machine the cost varies greatly. The DRX-9000 is way overpriced and over rated in my opinion -- the LCD used on hubby worked just fine. A good chiro will do heat and stim and manual physical therapy as part of each treatment.
If you can't afford to continue with an LLMD or don't see improvement on antibiotics then I would try the herbal route -- the Buhner protocol from Healing Lyme can be of benefit -- but it is very important to get to the therapeutic doses and maintain those doses long enough.
IV IgG is often the treatment of choice for peripheral neuropathy, but it is only about 50% effective from what I have read. I posted a thread awhile ago about using Chinese herbs to treat neuropathy. Will try to bring that to the top. This is probably the route I would go for treatment if I had a neuropathy issue.
Good luck.
Bea Seibert
P.S. Hubby only had band 41 show as positive (all other bands totally negative) on one of a dozen or more lyme tests over the years from 4 or 5 different labs. But he did have a positive PCR test once and a positive recombinant antigen test twice (test no longer available).
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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No, have never been tested for co-infections, yet my LLMD did offer to treat bart with 2 weeks of oral Rifampin - had no response.
So your husband just had band 41 as positive on an Igenex, no other bands, including non-Lyme specitic? I am happy he has NOT had sensory neuropathy, but I do not discount the symptoms you mentioned, none of this is easy for anyone, I fully understand
I have had over 60 trips to 3 chiros, all to NO avail. Before the burning feet etc, I had a history of work related 'acute' problems that chiros always helped, once had great confidence in them and still do for 'minor' adjustments.
No fatty acid analysis, only one B test, for B12 when this all became troubling over 3 years ago, range was normal. Ironically, when I take methyl B12 supplements, I seem to burn and tingle even more It's a catch 22, should I take them, are they healing, or just irritating an over-active sensory nervous system?
I take Omega 3/6/9 fairly faithfully and have dabbled with phosphatidylcholine recently, haven't seen an appreciable response.
Tried one accupuncturist for 1 month, again did not help. Said accupuncuturist also gave oral herbs, not sure of contents.
I've taken Gabapentin daily for over 2 years, very minimal help.
Have considered pain mgt, but terrified of drugs and addiction and not impressed with their action on nerve pain. Also many pain mgt seem to be into epidural injections, again, isn't this contraindicated for Lyme, IF I have Lyme?
Never used DRX-9000 nor have I done any type of 'vax-d'. I do own an inversion table and have been using it regularly lately just hoping it might help?
My dilemma is what is causing the burning and from what level of the nervous system?
No MD I've seen can answer this or has apparently spent the time needed to answer. I would have NO trouble using my old LLMD or finding a new one to treat with my test results, just second guessing what is really my problem?
IF Lyme is causing this, I suppose my approach should be to use abx again? IF, and only IF, I had a fairly definitive dx, would I do this. I can and will find the money, but I just need to know if I have the right dx?
When I compare my test results to others, I just scratch my head and wonder. All those bands, even if 6 of the 12 were IND, do they really mean anything?
I know Borrelia is not easy to detect, but terribly frustrating guessing on the dx when so MANY things can cause these neuro symptoms?
I thank you for your thought-provoking suggestions
PS: Thanks to RKS as well, I wish you success with treatment. Interesting to know your burning is not ALL the time too?
Posts: 247 | From The Country | Registered: Oct 2007
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Though not my prominent symptom (dizziness is), I had the same numbness/nerve thing you describe.
I have Lyme and Bartonella.
What you say here: "Again, I do NOT have this all the time, just after prolonged contact...feet from walking/sitting, butt from sitting, hands/arms while lying." Could have been written by me!
You said you did Rifampin for 2 weeks w. no change. It took me 2 months on Rifampin (with Zith) to see a positive change in these symptoms.
I also had some muscle pain in my groin/leg/butt area.
The worst was the numbness in my butt/groin and would come on after sitting for a time.
After about 3 months of the Rifampin/Zith, the numbness and pain went away and has stayed away. I am just now finishing my last month of Rifampin.
I also had terrible foot pain along with a right foot that would go numb in a strange way when I was up on it for too long. (I know you don't have the pain, but thought I would mention it)
My arms still can go to sleep during the night and it isn't necessarily if I have layed on it wrong, b/c both can be totally numb from shoulder on down and it wakes me up or I can't use my hands for a bit when i do wake up.
I have also in the past had terrible insomnia (along w/ horrific anxiety) that happened literally overnight. Ironically, I didn't know I had Lyme yet and it was after a round of steroids for my dizziness. (I did not know then that the steroids are very bad if one has an infection and is not on antibiotics)
With your symptoms and test results, it screams Lyme/co infection to me, and I am one who does not think everything is due to Lyme.
I should also add that I noticed the numb arms at the same time that I was diagnosed w/ hypothyroidism and that I recall it going away once my thyroid was ok. My thyroid is messed up again from the Rifampin and I do again have the arm numbness.
However, I know for sure that Rifampin took away the weird groin numbness and pain.
I totally understand your skepticism, as I have it as well on many days, despite having had a bulls eye rash that went untreated almost 16 years ago...
I hope something I wrote will help you, Kitty
Posts: 819 | From East Coast | Registered: Apr 2009
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Yes, what you've written has helped me I am just very distraught to not have a dx after over 3 years.
My reaction to these sx's is very distressing to those around me, I think they believe I'm crazy as I've recently become pretty desperate that this will never end, 3.5 years is a long time with this sort of thing...I can still remember life without these problems though I'm happy to hear this has improved for you, hopefully the dizziness will as well
Perhaps my problem is/was Lyme and I just didn't treat it long enough? If I have it, I suppose it's been for some time, 7 or more years. Really don't recall a bulls-eye, but I never looked and didn't even know what Lyme disease was until I had neuropathic problems.
A little different than what you describe is that I generally have NO numbness, just tingling, burning, prickly sensations, most pronounced in the souls of my feet.
BTW, the burning while sitting did NOT start until after I stopped all abx. Also started to get burning in certain regions of spinal colum post abx.
Yes, I am a skeptic about some of what I read regarding Lyme. I do not doubt people are having problems and that they just want help, just hope we're getting accurate dx, tx and realistic outcomes? Again, nice to hear of people's sx's (particularly neuro) improve.
Looking forward to your progress as you recover,
Take Care, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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