[zeeclass6]

I have Hashimoto's. Have you had your thyroid levels tested (TSH, free T4, T3, etc?) If not, please get those tested. You could need thyroid supplementation. Often if you have antibodies but no symptoms, you could still benefit from thyroid supplementation. Some people do well on Synthroid and some do better on "natural" dessicated thyroid.

I hope you find the answer to your questions and that you feel better soon and overcome your problems! ((HUGS!!!!))

Originally Posted by kate525

Hi Mrs. D,

I've been away from this site of almost 8 months now but find myself needing to make my way back again. You gave me such wonderful support and advice (page 5 of this thread) that you are the only one I can think of to turn to.

I've continued to treat aggressively for lyme disease and all the co infections(tested positive for lyme, bartonella, babesia) and for some time now, for the most part, i've been able to maintain a painfree life due to the neurontin. In April I actually backed off 600 mg's to 3000 vs 3600 (not much to some but it gave me such hope!). I do have breakthrough periods but i'm able to cope with them no problem. Until recently. Here's where i'm at:

I still take all the supplements you advise w/ some minor tweaks in mg's.

I just had a repeat skin biopsy(first one was in 2006 showed abnormal and then after 3 mos of IVIG showed normal. *** I was NOT having any painful neuropathy at ALL and was mainly using it for experimental LYME treatment so the biopsy improvement never made sense to me***)

Repeat biopsy done 8/11 is NORMAL??? Yet, for the past 2.5 years i've had intense burning pain in my feet. HOW do you get an ABNORMAL repsonse when you have zero pain/symptoms and a NORMAL repsonse when you're in agony?

As of the past 8 weeks or so, it's spreading. My face, mouth, lips and ankles, calves and legs are burning. My back feels like I'm getting electrical jabs in it. The past week in particular has been horrible. I feel like i'm a rotissere chicken

The neuro said we may have just taken the biopsy from parts of the skin that hadn't been affected but that seems impossible! They were taken almost on top of the old biopsies(visible scars). Obvioiusly it has to be a FALSE negative?

I have been tested for everything you've mentioned to others on this forum, everything. And with the exception of lyme (and hosimito antibodies but "no symptoms" yet), everything is negative!

Two factors you should know..

All this time I THOUGHT I was taking a B12 supplement and I wasn't! I don't know how this happened but if you saw my pill case...56 pills in all, every day..it gets confusing, especially when you're sick(still battling lyme stuff). Anyway, i was suppose to be taking the shots but we had complications but I assumed I was covered with the orals(which I wasn't actually taking). I do take the benfo and a b6. Don't know how I missed the B12.

Second, my dad has neuropathy . For him it started 18 years ago and for most of that time he just had a couple of numb toes. It then turned to burning but never painful. Now, after chemo, his feet are bad..incredibly numb. But, he doesn't have problems beyond his feet. He has also had lyme, several times and has had 4 back surgeries.

I asked my neuro if this could be hereditary and he said no. That hereditary is generally autonomic and not small fiber but I'm scared. My pain is far worse then my dads and has progressed much, much faster then his. My intermittent tingling began when i was 28 (1998-I was told it was lyme stuff) then left for years only to come back as mild tingling in late 2008. I then woke up with SEVERE burning one day in 2009 and it's never gone away again.

I am not on any meds that can cause neuropathy.

My blood markers are ALL normal. This includes celiac(even had biopsies), sjornes, cmt, auttoimmune markers, diabetes, full neuropathy panel, etc..

My lyme doc says that 70% of people with chronic lyme(took years for them to finally figure it out) have neuropathy. I am doing everything I can and where a week ago I thought I might be able ot back off more neurontin..I'm now Im suddenly on fire around the clock(and all over).

I can't take hot baths. I cant jump, dance, run or skip with my kids. I can't even take YOGA anymore because tho I have no pain while doing these things, the next day and for several days later, the pain breaks through(prior to this latest development). What is happening to my life???

No clue what to do...

Thanks for reading
Kate

[kate525]

Originally Posted by zeeclass6

I have Hashimoto's. Have you had your thyroid levels tested (TSH, free T4, T3, etc?) If not, please get those tested. You could need thyroid supplementation. Often if you have antibodies but no symptoms, you could still benefit from thyroid supplementation. Some people do well on Synthroid and some do better on "natural" dessicated thyroid.

I hope you find the answer to your questions and that you feel better soon and overcome your problems! ((HUGS!!!!))

THANK YOU for your hugs. I have had my hormoes tested and they are all fine. They get tested every 4 months. I have asked about trying supplementation for it but none of my docs(conventional and alternative) think it's necessary. Maybe I should push for it? *sigh* I dont know.

Kate

[zeeclass6]

Originally Posted by kate525

THANK YOU for your hugs. I have had my hormoes tested and they are all fine. They get tested every 4 months. I have asked about trying supplementation for it but none of my docs(conventional and alternative) think it's necessary. Maybe I should push for it? *sigh* I dont know.

Kate

You say that your thyroid hormones are fine, but if your TSH is greater than 3.0, you have a problem. Some labs say that anything under 5.0 is normal. But several years ago the thinking shifted on this, and a lot of labs and doctors changed their thinking, and now prescribe thyroid meds for anyone with a TSH higher than 3.0

Personally myself -- if my TSH goes above 2.0 I begin to feel awful.

So look at your blood tests and look at the numbers, just to be sure.

I have read that taking Selenium can actually lower or eliminate thyroid antibodies. I haven't done this myself because right now I don't want to mess with things as my thyroid is rather stable. But it's something to ask your doctors about. (As if you need another pill to take).


BTW, you say that your B-12 is 450. From what I have learned on this message board and in general on the web, 500 is the minimum it should be, or higher. Apparently it cannot get "too high." Many people here know more than I do about B-12, but I think they'd say the same thing (please correct me if I'm wrong, guys).