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Old 04-08-2017, 09:09 PM   #311
janieg
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Thanks for the link...very interesting read!

My gut is back to normal now, and while I'm still taking the new probiotic, I've cut back some on the yogurt/kefir/komboucha.

For right now, I feel better than I have in a long time. I hate to jinx it, but even my neuropathy is running at a very low level. It's still ever-present, but I'm not having any discomfort. That's always ebbed and flowed, though, so time will tell. What is a marked change is the absence of the crazy rushes. VERY pleased about that, so thank you!


Quote:
Originally Posted by mrsD View Post
I put this link up on another thread so incase you haven't seen it there here it is again:

People of the Acid: Acidosis and Pain - Pain Online
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL. Genetic mutations contribute to glucose issues.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Threonate,
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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Old 04-09-2017, 11:55 AM   #312
mrsD
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I have been wondering how you are doing.

It will take time for you to heal some, with the new supplements.

I get a weird feeling down my left leg occasionally. It is like a giant goose bump flush. Is that what your "rushes" feel like?

My left foot/ankle had that big surgery when I was twelve and did some nerve damage then. The numbness took years to go away, and sometimes now I have ankle pain, instep pain, or these goose bump feelings coming from the thigh. Since I have been using the Gold, however they are almost gone.

I am glad you are feeling better. I notice a distinct improvement in my stamina (esp climbing stairs) with the carnitine too.
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janieg (04-10-2017)
Old 04-10-2017, 08:52 PM   #313
janieg
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Quote:
Originally Posted by mrsD View Post

I get a weird feeling down my left leg occasionally. It is like a giant goose bump flush. Is that what your "rushes" feel like?
Yes, that's a good description of it as well. Mine come in waves, but lingers for a bit before subsiding. There's no apparent reason for why one particular part of my body is being affected at any given time. One night not too long ago, I was actually woken up by it. My entire torso was experiencing it...pelvis to neck. I woke up and actually said out loud, "Seriously?!?!!? Is this necessary????" Then I fell right back to sleep. Just another day in the sensory fun factory.
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL. Genetic mutations contribute to glucose issues.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Threonate,
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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Old 04-12-2017, 10:45 PM   #314
janieg
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MrsD,

I'm trying not to get to excited about this, but...

On whim today, I decided to send Dr. Barry Wolf MD PhD an email. I found his email address on a biotinidase deficiency research report. He's a pediatrician in Detroit, and appears to be a leading researcher on the deficiency. I didn't think the email would ever actually get by an admin assistant, but he got it. I had explained my BTD variant finding and my neuro problems, and just asked if he had any thoughts if there could be a connection. He emailed me back within a couple of hours and asked for my phone number.

I didn't hear from him tonight, but my fingers are crossed.
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL. Genetic mutations contribute to glucose issues.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Threonate,
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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Old 04-13-2017, 07:27 AM   #315
mrsD
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Thumbs up

That is promising! I hope he has something further to suggest for you.
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************************************

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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 04-13-2017, 07:15 PM   #316
janieg
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Quote:
Originally Posted by mrsD View Post
That is promising! I hope he has something further to suggest for you.
He called me this morning. VERY nice man and very helpful. We probably talked for 10 or 15 minutes, and he explained quite a bit about the genetics of the BTD gene and what my specific mutation meant and doesn't mean.

He advised me to go to my doctor and get the biotinidase enzyme activity test. That's the only sure way to know my level of deficiency. Whether or not it could factor in to my neuropathy is a big unknown, but he'd be very interested in knowing how deficient I am and wants me to let him know.

Like you mentioned, how would anyone ever know they are? Only babies are tested, so the number of adults who ever find out they're deficient are just those 2% - 3% who have children with another 2% to 3% who then go on and incur that 25% chance of having a child born with 2 copies of the variant. It's obviously a very small number.

So I made an appointment with my internist for next Wednesday, and am hoping she'll order the test.

With regard to this acidosis thing, is that something could be tested for. After a quick Google, it looks like there might be a test? I'm still poking around.

Forgot. I flared out of nowhere yesterday after feeling pretty good for several days. Discovered something...the only salad dressing I ever buy has MSG in it.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL. Genetic mutations contribute to glucose issues.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Threonate,
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream

Last edited by janieg; 04-13-2017 at 09:55 PM.
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Old 04-19-2017, 08:36 PM   #317
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I saw my doc today. I think she thought I was completely off my rocker until I told her this biotinidase expert called me from Detroit. Not surprisingly, she didn't know what biotinidase was. She Googled it while I was with her and pulled up one article or research report after another written by this doctor in Detroit. I think it gave me credibility.

She said she was happy to order the biotinidase test, but warned me, "I'll have no idea what to do with the results." I assured her that I knew that, and that hopefully Dr. Wolf would be able to offer some guidance. She was happy to hear that, but then also said that worst case, she would make some calls and see if she couldn't find someone to make sense of it.

Once again I'm in that "please give me bad test results" place.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL. Genetic mutations contribute to glucose issues.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Threonate,
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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Old 02-16-2018, 05:36 PM   #318
caroline2
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I just took the time to read a LOT of this thread and a LOT of very very good info here..thanks all.
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Most important supplement: grape seed extract
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