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Relationship Between Mito Disease And Mcad


Guest wishing&hoping

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Guest wishing&hoping

Just got back from a visit to Afrin who diagnosed me with probable MCAD pending all the blood work results. Trying to integrate it with other results coming back pointing to mitochondrial disease. Afrin feels the MCAD is primary and can cause mito problems. Anybody have any insight into this? Have terrible adverse reactions to H1 and H2 blockers so not sure how to proceed.

Thanks for any help and have a happy Fourth!

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Sorry, I don't have insight into MCAD, but was wondering what testing came back pointing to Mito. I had some testing done for Mito and some stuff came back abnormal, but the Dr. who ordered the testing doesn't know about Mito so she interpreted it as normal. Would you mind sharing what specific testing you had done and what came back abnormal?

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Sorry, I don't have answers either, but am curious to see if anyone can lend any insight to your questions. I'd be very grateful to know what you find out when your blood work results come back - ? I've never heard anything about a MCAD - mito connection - interesting.

I have bad reactions to most antihistimines, too - they all just make my "wooziness" much worse. However, I can take very tiny doses of something called acrivastine, and it seems to help with some of my symptoms, esp. fatigue. In the UK, it's sold as "Benedryl Allergy" and doesn't have anything else in it. It's in capsules, so it's easy to open them up and just take a small amount of the powder. However, I think acrivastine is only sold in the US by prescription and with added ephedrine(?). I find that odd because I find it has a definite stimulating effect on me - but I always react weirdly to meds!!

Good luck - do keep us posted.

-Shel

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Guest wishing&hoping

I will keep you posted. Thanks for the info! One of the side effects I get is severe eye pain with anything that dries me out (i.e. antihistamines). Afrin's advice was to check meds I react to for the list of preservatives, but I'm not sure that's going to solve the dryness problem. Sigh :(

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Interesting that you say that about your eyes being dried out: the last time I had an evaluation, the nurse put one of those paper "dip stick" things in my eye to test my tear production. After sitting there with my eyes closed (and the paper sticking out of the corner of my eye) for about 5 minutes, she looked at it and said "According to this, you have no tears. None." I don't know if it's the minimal amount of acrivastine that I take that's doing that! Short of constantly putting re-wetting drops in your eyes, I'm not sure what you can do about it!

Thanks again for your info, and I'll look forward to your next post!

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Martin Pall Ph.D's theory on oxidative stress (NO-ONOO) I think has some reasonable explanation for how mitochondrial and mcad/allergies can be related. It's pretty complicated though so don't know how much detail you really want to hear about.

There's a bunch of research in this area so you can easily find info on it. Recommendations are for using anti-oxidants to assist with this, but needs to be done with an experienced provider as if you do it on your own, you may make things worse.

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Guest wishing&hoping

Thanks, Chaos. My integrative doc said the same thing. I'm spilling protein into my blood (very high amino acid levels) and just keep getting worse while the work up creeps along. Feelung very demoralized. The slightest exertion, even trying to put togethrr medical records, has me trembling and hyperventilating. Lactic acid levels very volatile.

Where would you suggest I look for research?

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There are a couple places where I've found explanations that finally put it together for me in a way I could kind of understand it. One of them was this video by Dr. Cheney.

http://cfids-cab.org/MESA/CFS_Dist.htm

It's his discussion on diastolic dysfunction as a possible cause for CFS, but since there is so much overlap between POTS and CFS symptoms and because so many people with both CFS and POTS have problems with multiple chemical sensitivities, MCAS type symptoms and mito issues, you might find this all very interesting. The actual part where he gets into the relationship between mito and mcad is where he starts discussing Nitric Oxide/ Superoxide and peroxynitrite, which is more than half-way thru the video. The player option on this video isn't great so I never could figure out how to fast forward it to load it. You kind of have to watch it all the way thru or let it load and then go back and watch it. However, it's got a ton of interesting info on it. And, he's pretty good at explaining it. But it's also fairly indepth so you might need to watch it in bits and pieces. It's about 3 hours long.

Another source that I've found helpful is Erica Verrillo's book "Chronic Fatigue Syndrome: A Treatment Guide, 2nd edition. She has offered free downloads on Kindles etc a couple times already this year. It's almost like an encyclopedia of info related to CFS and addresses a wide base of info. She has a basic explanation for Martin Pall's theory that's fairly understandable and also addresses his ideas as far as supplementation.

Again, I realize these are CFS related books/videos but especially for this particular area of Mito and MCAD type stuff it almost seems like the CFS specialists are more aware of how often this is an issue and so are further ahead in recognizing this as an issue in their patients than the POTS docs are and are therefore further along in research tying it all together.

One of the things Dr. Cheney notes in his video is that his patients frequently have very low uric acid levels. Have you had those checked? I think lactic acid levels are frequently involved with CFS as well. Tend to be higher I believe than normal, as most of us run in an anaerobic capacity most of the time, even doing basic tasks of daily living.

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Guest wishing&hoping

Thanks so much, Chaos! My lactic acid levels are running high off and on; venous blood gases have been high when I was in the ER combined with very high lactic acid levels after a (too) active weekend. Not sure about uric acid levels, though. I have COPD to begin with, so it's getting compounded. This humidity is not helping; making me homebound! I will check out the video as soon as I can. I hope he discusses treatment!

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He does discuss treatment ideas at the end.

Have you checked out this forum as well? http://forums.phoenixrising.me/index.php They have a whole section also devoted to MCAS and some good threads on Mito dysfunction and POTS etc.

Between the COPD and this other stuff, it would be complicated figuring all this out. Glad you're working with an integrative med doc. Hopefully they are good!

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