Quote:
Originally Posted by Marie33
Hi David
Thanks for all the information you have provided. I suffer from Idopathic SFN. I had a "comprehensive" blood workup by Neurologists (5) and Rheumatologists (2). I have ALL of the symptoms of SFN except for numbness. I was diagnosed in August of 2012 by Skin Biopsy. I am otherwise fit and healthy. Still going on my tread mill. My symptoms started out-of-the -blue with burning under my feet and tingling in both calves. It has since progressed to my arms , hands, torso , and face. I mentioned bloodwork to the Doctors about autoimmune related neuropathies, and Lymes Disease. Each time they tell me all my bloodwork is normal and dismiss me as Idopathic. I take 300 mgs of Lyrica and its not helping . I get bad buzzing , pins & needles, burning all over. It has become widespread. Now I have developed bad tinnitus (ringing in my ears and head) Never had this before! Did you have any of these symptoms. Does this sound like anything familiar to you? Why did it take eight years for your diagnose? I dont remember ever getting bit by a tick at home or elsewhere. I Never had any symptoms or a bullseye rash. Did you know you were bitten by a tick. I wish I could find a cause for this horrible SFN. Should I ask my Neurologist to do futher testing. Everytime I ask they say my tests were "normal"  Thanks again ..
Marie in NY |
Hello Marie:
Imagine that ... someone in New York State getting a mysterious neuropathy who is otherwise in good health.
Let me guess ... could it be Lyme!
OK, Marie, the first step is not to panic, but you need to follow the sequence of testing steps that I posted earlier NOW! The reason we do not go to the new culture test immediately is because it costs $595.00 for the basic test, and then another $300.00 to determine which Borielia (Lyme) strain you have.
Do the Lyme ELISA in your doctor's office first. The cost is negligable and if it is positive you have Lyme. Anyone that you live with also needs to be tested.
If it is negative, I think that I would skip the Western Blot and go right to the culture. There is a very specific sequence of steps that you need to follow to have your blood sample processed correctly that you can read on Advanced Lab's website, but don't worry about that now.
However, I just remembered that Advanced Labs is being blocked from offering the culture in New York State due to political pressure.
That is the one and ONLY state (with of course the most infected and undiagnosed victims) where the test is currently being blocked. This is not a problem, however, as you can have your blood drawn by a doctor in any neighboring state.
The reason for this embargo is that the majority of residents of New York State are now infected, and for ten million people to suddenly find that out all at once via an indisputable blood culture they have Lyme would lead to chaos. Also, only about 30% of folks who are bitten by a tick and get Lyme ever see a rash!
That said ...
I experenced my onset of small-fiber neuropathy exactly as you described. Early in the disease it can impact the Cranial, Trigeminial, and Auditory nerves, which is likely what you are experencing with your tinnitus but which will resolve with treatment.
In the meantime I suggest the following (subject to approval by your doctor) ...
1) Take 10,000 mcg of oral Methyl B-12 every day on both an empty stomach, and at least 30-minutes before eating for proper absorbation.
2) Take 100 mg morning and night (200 mg total) of "Doctors Best" brand R-Lipoic Acid with food (to avoid stomach upset). This will help you in many different ways.
3) Take two tablets each day of "Mag-Tab" SR , which is a specially-formulated type of magnesium that is absorbed. Lyme will deplete your body's supply of magnesium, as it utilizes magnesium to survive. The buzzing you describe are actually muscle and nerve faculations and a classical Lyme symptom (and no, you don't have ALS!!). Two "MAG-TAB SR" daily will bring your buzzing to an end after a few weeks, as the MAG-TAG replenishes your magnesium supply.
4) Take lots of purified fish oil daily
5) Take a good multiple vitamin daily
OK, for pain I would recommend a combination of Cymbalta and Lyrica as follows (and again subject to your doctor's approval):
1) Begin taking Cymbalta at a dose of 30mg once per day at bedtime for seven days to taper up, and then raise that dose to 60mg once daily at bedtime on the eighth day if you had no problems during the taper-up period.
2) I am not sure how you were taking your 300mg of Lyrica, but I would suggest that on the same day you begin the 30mg of Cymbalta you do the following:
Take 75mg of Lyrica at bedtime at the same time you take the Cymbalta 30mg, and then take 50mg of Lyrica with lunch (total 125mg Lyrica per day to start). There is a powerful synergistic effect when combined with Cymbalta which works!
Then, on the 8th night when you increase your Cymbalta dose to 60mg, evaluate how you feel. If there has been no change, increase your mid-day Lyrica dose the next day to 75mg from 50mg, for a total of 150mg per day.
Now maintain the status quo for two more weeks, at which point the Cymbalta will really start to do its thing in conjunction with the Lyrica.
If your pain is greatly decreased, then we will want to slowly start reducing your mid-day Lyrica dosing back down to 50mg from 75mg to avoid drowsiness, while maintaining Cymbalta 60 mg per day for the foreseeable future.
In the meantime you need to get tested. I would bet that you have Lyme and probably Bartonella as well.
Feel better and keep us posted!
David