[QUOTE=Apollo;1019400]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
Hi David
Thank you for taking the time for your response.
I Live in Long Island not upstate NY or NYC. Just wanted to clear that up.
I was tested for ELISA and Western Blot again last week at the Rheumo Doc. Both tests came back normal. My Rheum insisted I didnt have Lymes and that these two test were accurate. I tryed to tell her what you said in your earlier post , but she wouldnt listen. So again, I am left with "Idiopathic" diag.
It sounds like I may have to take a ride to another state to get tested with this "culture" for Lymes or Bartenella.
You said your sfn started exactly like mine. Mine started in my feet and calves. It spread to my arms, legs, face and torso over the course of 2 years. My worst sypmtoms are buzzing, tingling and stinging- burning. I get all over attacks (flare up) of stabs, jabs and fire ant- bites at any given time. I Never know when I will get worse and how long it will last.
However , No numbness or weakness.
Ive been taking Methyl B-12, 10,000mcg (1mg) everyday for about a year now (got that from MrsD). I thought it was working for the first few months, but now the burning is back even tho I still take it once a day on an empty stomach. My lab B12 level is well over 1,600. So I take it for maintenance.
I take 100 mgs of R Lipoic Acid once a day, 200mgs would make me too jittery. Unfortunately. I have not seen any improvement in my sypmtoms with RLA either. I also tryed CoQ10, No help. I still take Bentofithame (sp) B1, 160 1 xday (My Lab B1 is normal-high) and Folate 800mcg. I do not know if any of these supplements are helping.
I tryed Cymbalta last summer (2012) and I could not tolerate the side effects on only 10 mgs. I could never get to those mgs you mentioned. I wish I could follow your schedule for Cymbalta to see if it would help. but I could not tolerate it.
I am "stuck" on 300mgs of Lyrica. My problem is its not helping. So Im afraid to continue and increasing it and Im afraid to go off it.
. I started taking Elavil, Im on a low dose (5mg) , hoping to get to 10 mgs to see if it will help in combo with Lyrica.
I take Krill Oil, eat salmon and lots of walnuts and Olive Oil. I do not take a Multi Vitamin because my Neurologist dosent want me to take any Vit that has B6, my B6 is 17 and he says thats good.
So here I am in NEW YORK, Ive been to the North Shore (Stony Brook Neurology) South Shore and NYC (2 Neuromuscular-Mt Sinai & Cornell Weil), None of these "Specialilist" know why an otherwise healthy person like me is suffering with Neuropathic pain.
Again thank you for your response. Any further suggestions or comments would be greatly appreciated.
Depressed and suffering in NY,
Marie