I have not posted in some time except to respond to some other posters. For a short period, I thought I was getting better. My feet were still numb and achey, but not much beyond that. There was some muscle pain, especially in my neck and lower back. Since I work out regularly, I did not think much of it.

The past two weeks, though, the muscle pain moved to my shoulders and became unbearable in my neck and back. And I began to have muscle weakness in my legs and arms which had not been there except periodically in less duration over course of maybe a day or two. I have been seeing a chiropractor for the past two months since the neck pain was bothering me. Other than that, nothing has changed.

On Friday, the pain in my feet became a constant burning and traveled up my lower leg. I have been lying around in pain ever since then and everything hurts. Yesterday I took 200mg of Tramadol and it did not even help.

Just to recap my issues, I am hypothyroid and have had normal thyroid levels with synthroid treatment. Then 3 years ago I contracted a parasite called giardia and began experiencing neuropathy in my feet during treatment. The neuropathy never went away and now I am not even sure if it began before the giardia and just became more apparent when my body was stressed? Anyway, after seeking help I was diagnosed with Sjogrens based on three different sets of blood tests all coming back SSA positive. Then a lip biopsy at Johns Hopkins came back negative. So, I may or may not have it. My neurologist here does not believe Sjogrens is the cause of any nerve pain anyway. I have had every test imaginable and was told in this order that my cause was 1) Sjogrens 2) B6 toxicity 3) mercury poisoning 4) possible nutritional deficiencies.

I have corrected the B6 and mercury levels, and gained 16 lbs. by eating more nutrient dense calories while also carefully increasing vitamin supplementation per the sticky thread. So why all of a sudden are my symptoms the worst they have ever been?????? What step should I take next? My husband is ready to mortgage the house to send me to Mayo! But for what?

If anyone has any clues on where to go next or what questions I should be asking I would so appreciate it. Mrs. D? Dr. Smith? Does this sound like anything you could classify....fibromyalgia? MS? leaky gut issue? Currently I take synthroid for the thyroid, linzess for constipation and tramadol for the pain. I have tried SSRIs, anti convulsants, steriods, IVig therapy. None of these made a significant change so I am not currently on any of them. Plus I recently had a bone density scan and I am dangerously close to osteoporosis and worried to be on any ,ore medications.

So...I suppose the treatment for the giardia was Flagyl (metronidazole)... it usually is.

Flagyl is a known nerve toxin.

Have you tried Benfotiamine? This is a form of thiamine and may help since Flagyl involves interfering with B1 metabolism. I am not sure about the time delay factor, but I'd try it anyway.

Yes Mrs. D. I am an avid follower of your posts, so this is what I have been using:


Benfotiamine 300mg 1x day
B12 1,000-6,000 mcg day (cyano form)
B-50 complex 1x day
Folic Acid 1200mg 1x day
Vit C 250mg 1x day
Vit E mixed tocopherals 400 iu/day (lots of gamma tocopherals)
Acetyl L Carnitine 500mg 2/day
Alpha Lipoic Acid 400-1200mg 1x day
Magnesium citrate 500mg 2/day (acid salts or chelates)
Fish Oil 1000mg 2x day
Milk Thistle 200mg 3/day
Coenzyme Q-10 50mg 2xday
DHEA 50mg

Was taking the SAM-E as well but did not tolerate it very well. I have also been on an anti-inflammatory diet for well over a year (very little caffeine save the occasional cocoa product, no refined sugar, no animal products except fish, feta and goat cheeses and hard boiled eggs, filtered water only, no gluten, no nightshades, no alcohol although I did try a drink a few times over the past year.

The thing with the Flagyl is that once you are off of the drug, the side effects should resolve themselves. It has been 3 years since I took this drug and all of a sudden not only are my symptoms worsening but the muscle weakness and muscle pain are new. So I do not believe this had anything to do with it. Just thought I would add that into the mix since at one time a doctor thought there was a connection.

I just really need to know what possible next step there is? Seek out a new rheumatologist? Love my neurologist but she just keeps saying you will get better and hands me another script for a new anti-depressant to try out. When my symptoms were consistent, I was okay being labeled idiopathic and continuing down the symptom management route with lowest dose possible of Tramadol. But these new issues are troublesome and now I want to find out what the root cause is so it does not continue to worsen. I have a young family and need to be there for them....not in a wheelchair because I did not do anything and the damage was already done...

Does the progression sound like anything you have come across? Just typing this makes my arm tired, and I have not left the house in two days, but two weeks ago I was throwing a 20lb kettlebell.

I am also wondering what additional tests I should request. I have had the usual CBC panels done repeatedly (glucose varies always within normal and latest was 48), creatine kinase 104 U/L, aldolase 5.9 U/L, my thyroid is tested every 3 months, HIV negative, Lyme negative, latest ESR was 4 mm/hr, urinalysis nothing remarkable, mercury only remarkable metal toxicity but came down from 33 to 13 by reducing seafood intake, vitamin levels: B6 has come down to reasonable 23.1, B12 938 nmol/L (mma back in 2013 was .13 but homocysteine borderline at 11.5), B1 245.5 nmol/L, Vitamin D 35 mg/ml, and Phosphorus 3.2 mg/dl, immune: SSA positive, thyroid within normal with medication (synthroid), ANNA-1 ANNA-2 negative, Gliadin IgG/IgA both negative, Antinuclear antibody positive, ANA titer 1:40, CRP normal, C3 protein always lower than normal, C4 normal, MRIs brain and spine unremarkable, bone density shows severe osteopenia, EMG and nerve conduction studies show nothing remarkable but nerve biopsy showed reduced innervation of sweat glands (supposedly supporting a neuropathic process affecting nerve fibers which NOBODY has been able to explain to me).

So basically my tests so far showed no inflammation markers, normal ESR and CRPs, antibody tests for RA, scleroderma and Hashimotos all negative, vitamin levels normal-high, no STDs, only indication of auto immunity are a low C3, high SSA and borderline ANA. Only evidence of nerve damage is the strange biopsy findings. The osteopenia has rapidly deteriorated over past two years but that could be too much exercise and not enough calcium and unrelated. Forgot to add in the above that now I take calcium and D3 per doctor's advice for osteo issues. Any ideas???

I'd switch to both methyl forms of B12 and folate.

If you are not methylating both of those due to a DNA problem...the MTHFR polymorphism error.... then your tests are showing only the the unmethylated forms.

Metafolin 800mcg and 5mg of methylcobalamin. See if anything changes. This error is pretty common... so it is worth it to try the activated forms.

Oops! I do not know why I switched from the methyl form to the cyano form at some point. Thank you for picking up on that. From what I just read, even without the MTHFR polymorphism issue, the methyl form is synthetic and may not be absorbed.

If I did have the MTHFR polymorphism error, though, would it not show up on my homocysteine test?

In terms of next steps, do you have any other suggestions? Should I pursue lupus? diabetes? fibromyalgia? I just do not understand why now it is getting worse when my regimen has not changed unless it is one of these auto immune diseases. Other than that, stevia toxicity has crossed my mind so I have tried to cut down significantly. Or the linzess causing some kind of absorption issue but nothing comes up for these side effects in any medical searches. Plus I have been on linzess for constipation for almost two years now.

Evil Flagyl, I took 1/2 of one dose and was surprised to learn you can get neuropathy symptoms in your butt cheeks, horrible stuff.

I believe I also developed neuropathy from meds, whether Norvasc, inhaled corticosteroids or a combination thereof. I generally do well now except certain meds seem to trigger it. I have been on Augmentin for three weeks and am starting to have some problems with it too, 2 days left.

I also wonder if the Lizness may have modified absorption, I took my meds for quite awhile too before I had any problems. That your B6 and mercury were high suggests other things might be as well? Are you taking high doses of herbs? I got worse on the cyano B12 when I first tried it, now it doesn't seem to bother me.

I don't know if this is right, its always hard to figure it out.

judi

Yes the evil Flagyl....but it was not as damaging as the giardia itself. I have not been the same since the parasitic infection, although numerous tests over the past two years have proved time and time again they are no longer inside my system.

The mercury and B6 levels were in the past. I have reduced both levels by eliminating B6 supplementation and reducing consumption of high mercury seafood. This latest flare has literally hit me out of left field as my habits have improved dramatically after reading these posts and gaining much needed weight.

The Linzess may have a connection. I have googled it and gone deep. There have been no recorded nerve or nutritional issues with the medication as of yet. Also I had the neuropathy long before I started taking the medication?

Thanks so much for your reply! Any insights are helpful as I am tearing my hair out...another day of inconceivable pain and no relief in sight. My neurologist just called in an anti-anxiety medication called Buspar to help settle my nerves. I do not see anything on the internet about its use for nerve pain though??

OMG!!!! The pain is absolutely UNBEARABLE. It is difficult to understand what is happening to me. I went from doing pretty well a few weeks ago with just my synthroid, linzess for constipation and an occasional tramadol to so many drugs this week my body must be toxic (synthroid, linzess, tramadol, buspar and xanax since my neurologist must think I am a basket case). And I just took an amitriptyline since the pain is so bad I cannot sleep!

Sorry to vent but I just do not understand how it can go from a 2/3 pain to a 9/10 out of nowhere and last for over a week?

It sounds like you may be experiencing your 1st very awful "flare"
they can last a week or 2 or just a few days. Dont worry you wont be stuck with that level of pain forever even though it feels like it will.

When the flare subsides you may need to focus in what the "triggers" are and avoid them because as you have found out that meds generally dont do anything for pain relief when your in a strong flare up