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Old 04-08-2017, 02:58 PM #1
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Lightbulb

My hubby had 3 antibiotics because he was bitten by a spider and didn't notice and it became a cellulitis and had to go to the ER for an IV.

Since then, I made him finally quit smoking his pipe... no easy task. Then the GI stuff started over the winter. We have been trying all sorts of stuff. Probiotics gave him diarrhea. His usual foods gave him monster gas. He had bouts of terrible nausea which was unpredictable. Metamucil gave him more gas.

But we finally found out what works... Benefiber. It has been a long haul to get to the comfort zone he likes now.

The AlkaSeltzer Gold has mannitol in it... if you take two a day you might be getting the laxative action of mannitol?

I am taking one tablet of AlkaSeltzer original in the morning and one tablet of AlkaSeltzer Gold at night. When I took 2 Gold at once I did get upset GI wise... but that was only once. I am super sensitive to being loose anyway. So I only use one Gold now at night.

The Equate version of Alka Seltzer original does not have the mannitol in it That is the brand I use. The mannitol I guess is to block the saltiness taste of the Gold ingredients.

Your option therefore is to try just sodium bicarb alone when you want more bicarb. I am still doing well with no more burning at night on my current dosing. Because I have the joint pain of arthritis, I still want "some" aspirin, so I use the AlkaSeltzer original, but I don't want so much aspirin that 2 tablets provide.

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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Old 04-08-2017, 09:09 PM #2
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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!


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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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Old 04-09-2017, 11:55 AM #3
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Wink

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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Old 04-10-2017, 08:52 PM #4
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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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Old 04-12-2017, 10:45 PM #5
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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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Old 04-13-2017, 07:27 AM #6
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Thumbs up

That is promising! I hope he has something further to suggest for you.
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Old 04-13-2017, 07:15 PM #7
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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.

Last edited by janieg; 04-13-2017 at 09:55 PM.
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