[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

[zeeclass6]

I was wondering why I feel anxious and shaky after I take Cyanocobalamin, but I do not get that bad effect when I take Methylcobalamin? Both tablets are the same dose (1,000 mg).

I have both forms of B-12 in my house. The Cyanocobalamin tablet (Nature's Bounty) dissolves very fast under my tongue, and then for several hours afterwards I feel rather anxious and shaky. Eventually the feeling dissipates but I don't like it. It reminds me of how I used to feel when I got allergy shots laced with epinephrine, or how I feel if I have caffeine. I have tried it several times, both on an empty stomach and not. It's always the same effect.

The Methylcobalamin (NOW, Jarrow -- I have both) has absolutely no side effect for me, and I feel fine after dissolving that under my tongue. (The Jarrow one takes a really long time to dissolve).

Any idea why one would make me feel anxious and the other doesn't? I know that the Methyl variety is absorbed better by the body, but that's about all I know about the difference between the two.

Thank you!

[mrsD]

If you want to...PM me your medication list. Some antibiotics deplete nutrients and some CAUSE PN.

Your dad might benefit from Acetyl carnitine...which may help the chemo PN. It works better, taken while on the chemo, but it is worth a try. Start at 500mg a day and increase slowly if needed to 2 grams or so, in divided doses for him.

You really should get a Vit D test, and B12 test to see where you are with these.

Burning pain can also be from food intolerances. Some foods also release histamine which makes for burning. I get burning from potatoes of all things!

If you were on oral antibiotics for a long time, I'd try some Kefir.
I just was very sick with a GI thing, and a friend suggested this to me...and I'm amazed at how it corrected me! I feel better ALL over too! It has 12 organisms in it to re-establish normal flora in the GI tract. I've just finished my first quart, Lifeway brand, and really recommend it now for anyone recuperating from illness. It is a fermented yogurt drink. And at first when I was so nauseated it was tough, so I diluted it a bit.

I intend to have at least 3 oz a day now FOREVER! That is how good it has been for me! ( I use the unflavored one as the others have more sugar which I try to avoid).

http://www.lifeway.net/

We found this in our local Kroger's!

[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

[mrsD]

Originally Posted by zeeclass6

I was wondering why I feel anxious and shaky after I take Cyanocobalamin, but I do not get that bad effect when I take Methylcobalamin? Both tablets are the same dose (1,000 mg).

I have both forms of B-12 in my house. The Cyanocobalamin tablet (Nature's Bounty) dissolves very fast under my tongue, and then for several hours afterwards I feel rather anxious and shaky. Eventually the feeling dissipates but I don't like it. It reminds me of how I used to feel when I got allergy shots laced with epinephrine, or how I feel if I have caffeine. I have tried it several times, both on an empty stomach and not. It's always the same effect.

The Methylcobalamin (NOW, Jarrow -- I have both) has absolutely no side effect for me, and I feel fine after dissolving that under my tongue. (The Jarrow one takes a really long time to dissolve).

Any idea why one would make me feel anxious and the other doesn't? I know that the Methyl variety is absorbed better by the body, but that's about all I know about the difference between the two.

Thank you!

Some people do not do well on the cyano...something to do with cleaving off the cyanide portion.
Cyano has to be methylated in the body to methylB12 before our enzymes can use it properly.

You can chew up the Jarrow and swallow..just do it on an empty stomach.
I switched to Puritan's Pride...the tablets are finer, smaller and easier on the mouth. In fact they pulverize in the bottle and I save the powder and take that too!

[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

[kate525]

Originally Posted by mrsD

If you want to...PM me your medication list. Some antibiotics deplete nutrients and some CAUSE PN.

Your dad might benefit from Acetyl carnitine...which may help the chemo PN. It works better, taken while on the chemo, but it is worth a try. Start at 500mg a day and increase slowly if needed to 2 grams or so, in divided doses for him.

You really should get a Vit D test, and B12 test to see where you are with these.

Burning pain can also be from food intolerances. Some foods also release histamine which makes for burning. I get burning from potatoes of all things!

If you were on oral antibiotics for a long time, I'd try some Kefir.
I just was very sick with a GI thing, and a friend suggested this to me...and I'm amazed at how it corrected me! I feel better ALL over too! It has 12 organisms in it to re-establish normal flora in the GI tract. I've just finished my first quart, Lifeway brand, and really recommend it now for anyone recuperating from illness. It is a fermented yogurt drink. And at first when I was so nauseated it was tough, so I diluted it a bit.

I intend to have at least 3 oz a day now FOREVER! That is how good it has been for me! ( I use the unflavored one as the others have more sugar which I try to avoid).

http://www.lifeway.net/

We found this in our local Kroger's!

Yes, Kefir is a staple in my home in addition to 3 other type of probiotics. I have never seen a correlation to any food either. I did just go back on antibiotics(I take small week breaks at times) so my doc thinks it could be a lyme "flare." I just don't know what to think. I start and stop all the time and have never exploded with all over pain. I feel it's getting worse.

Have you any knowledge of the skin biopsy testing? Can it be wrong??

Last I was tested, my B12 (it's beena while though) was around 450 and VD was fine. I still take 50,00 of VD a week regardless.

From your experience, does this sound like it could be hereditary? My dad is fine, he just shruggs it off and moves along. He is stubborn and refuses to take any of the supplements I tell him about. He's not in pain so he just doesn't want to give it any attention(Grrr!). I mentioned him to you from a hereditary standpoint..wondering if you knew anything about it..

I will PM you my list, but I caution you..it's LONG!

Thanks,
Kate

[SqueakyWheel]

I'm a new member and can't figure out how to post a question except to reply to one. Can someone plz tell me? I also want to make sure I'll be notified when a reply is posted.

[mrsD]

I'd send Glenn a PM and ask him. He talks to his expert doctors about all the tests, and he is very informed about them.

I do know that I've seen him post here that some doctors do not use the punch biopsy because they don't "trust" it .
I think but do not quote me, that he mentioned Mayo as one place that doesn't like the punch biopsy yet.

And it is true, it is not cast in stone... it is rather new, and needs good interpretation etc.

[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).