alternative to snri's etc for pain/malaise for chemically sensitive....

[xrayspex]

Having MCS is getting so old, making it hard to give chemical support to body. Long ago could tolerate small dose of snri's and helped take edge off of some of the malaise/mito issues as well as pain reduction. All those sort of meds are risky for me though because I get increased pressure in head apparently from them and now long lasting awful headaches can come on even from practically homeopathic doses of snri. same thing happens from natural adrenal support in low doses, stimulants or trying some of the methylation protocol. Feel like between rock and hard place. I am also impatient, want to find something where can see result right away as I still work and need to keep going to a degree, plus its not fun in the winter as malaise gets worse.

What have mcs people found they can tolerate for a little extra support? something that gives your brain a zap noticeably and quickly without bad fallout later.........I know its probably an unanswerable question but just in case....short of years of antiretrovirals or a new brain/body......

 

[Sallysblooms]

Natural supplements like 5htp are great. Lcarnitine and others. Do you have a doctor that knows about supplements? It is good to have one that would know the amount that would work for you. Chemicals are always hard so I take prescriptions only when I have to, like for infection. The one I do have to have right now is Benicar for my bp. The the other prescriptions I take are all good like bio Identical homones.

 

[xrayspex]

tried everything you mention and can't tolerate (hormones, carnitine, 5htp) its frustrating....

 

[Adster]

Maybe try some N.A.C? Have you done any testing for mercury or other heavy metals?

 

[heapsreal]

even tryptophan could affect you differently to 5htp as 5htp comes from a plant which could be causing chemical sensitivity. need to use trypto on an empty stomache or a couple of hours after eating.

cheers!!!

 

[xrayspex]

thanks everyone for your suggestions. argh, I hate to be a sad sack, whiner, but I kid you not, I have tried all those things to no avail.
N-acetyl cysteine brought on killer headaches and eye issues, eyes hurt photophobic etc I learned it could mean I have, is it chlamydia pnemonia, where you have bad reaction to NAC?

And I forgot what happened with tryptophan, have tried it again in last 8 years, and actually before I had fullblown cfs type issue back in the 80s when I was a workout machine, I used to use tryptophan all the time to try to sleep around 87-89....and you know what I found out in last couple years? apparently most of the tryptophan at that time was supplied from Japan and in the factory there was a contaminant that got into the supplement and then CAUSED a cfs/fms type thing in the people taking it in the states! yikes, I dont know if it was another factor related to my demise but it freaked me out when I found out, as I remember it being in the news at the time but I had been reassured not to worry it was only in Japan, well it turns out Japan supplied US too.

There were a number of things that happened to me culminating in a permanent disability in 89 so I have no idea which thing was the last straw. but before that always bounced back and was very active and fit. the tryptophan issue got resolved back then in Japan so as far as I know its not dangerous now altho it goes to show there is risk with taking supps and meds out of our control besides just the desired effect.

I guess it all relates to just how much the system has failed us that we have to experiment with ridiculous things that might make us feel worse, but I guess thats life....ya win some ya lose some.

p.s. so I had myself tested for c. pnemonia last year and said negative, but guess who tested me? drumroll...WPI, so can we trust their results? they also said I had xmrv and indeterminant on lyme....also where I got my NKcell and rnase abnormal results from.

 

[heapsreal]

acetyl l tyrosine can help with noradrenaline as well. SOmetimes its good to retry old treatments as i think our physiology changes and sometimes what didnt work in the past works now for some reason. I think the tryptophan scare is well and truly over and is sourced from a totally different substance then the toxic Japenese version. I have found NOW brand tryptophan good.
Its a hard one to work out, sometimes u have to keep sampling everything until u find what works, which is dam costly.

good luck

 

[xrayspex]

supplements

good point heapsreal
yea I have spent a ton of money as many of us have on supplements
bags of them, give them away to friends sometimes or toss them or try them again if not too old...
just tried rhodiola because am borderline with adrenals and have sjogrens
just tried a crumb of a tablet few days in a row last week and improved energy but then i got super angry and couldnt sleep

 

[heapsreal]

I was going to say do u sleep well regularly. Are u sensitive to sleep meds as well?

Another herbal supp that can help adrenals, sleep and mood is relora which is a herbal combo of magnolia and another herb i cant remember, i find it ok.

It must be a bugger having chemical sensitivity as you cant even try most of the suggested treatments by the experts. Maybe with rhodiola you need to dose evry second day or third day?? just a thought as then it wont build up in your system, hopefully??

cheers!!!

 

[xrayspex]

supplements and mcs

relora--haven't heard of that one, will look into it, thx!

yea sometimes that has worked to sort of pulse a supplement in a low dose, its tricky, easy to go over the edge accidentally

sleeping has been a big issue over the years, lately it hasnt been as bad for some reason, I am lucky I can sleep in that helps, but I use small amount of benadryl, that works usually but it does give me a stupid hangover but am glad can sort of tolerate it, when I tried other stuff like ambien it disorganized my brain much worse and I would be a mess the next day, it wasnt worth it. small amounts of klonopin helped but put me in such a bad mood next day also wasnt worth it.

 

[heapsreal]

Relora link http://www.iherb.com/Now-Foods-Relora-300-mg-60-Vcaps/769?at=0 Some of the link mention a few other things i have found helpful withania/ashwagandha which is calming and sai to be good for adrenals, theanine which can help to relax and phosphatidylserine which i have found useful for brain function although i find its neither stimulating or sedating and can supposedly help with too higher cortisol levels, using this for awhile at night did help improve my sleep but like everything tolerance occurs so i have dropped it for awhile but will pick it up again later as it was quite useful. I hope im not mentioning things you have tried before.

For sleep u say benadryl works, do u find the antihistamine also helps with your chemical sensitivity??
Doxepine is an old tricyclic antidepressant which also has good effects on allergies and helps sleep although may give u a hangover too. Much lower doses are used for sleep then depression, many start with a low dose of 10mg and upto 50mg. I think for depression doses of like 100-150mg are used. I found it very good for sleep when i first had cfs and it helped for a few years, i used it intermittently as using it all the time can put weight on. But like everything for me tolerance to it occurred but it was helpful when i first used it.

Wow i couldnt imagine not using benzo type meds for sleep, basically i wouldnt sleep?? i keep my doses low and alternate between them to try an avoid tolerance to them and escilating doses. Its funny how different we all are, u say your brain gets disorganised with ambien and felt worse, my brain gets disorganised badly when i dont sleep and cant use benzo's. we are both disorganised but at the opposite ends, lol.

cheers!!!

 

[xrayspex]

mcs and supps etc

yes it is amazing the range of issues and responses we have under umbrella of CFS.

I did try doxepin, I have opposite problem of you in that I have low tolerance to most things (except sugar it seems!) and I took a teeny dose of this as my first line of defense around 20 years ago, after trying other tricyclics first, but they all bothered my heart at end of the day and all had paradoxical effect of giving me insomnia because heart raced on them rather than help sleep.
But I know that and benzos are a couple of Dr Cheneys fave things to give CFS folks so you are in good company with what you can take.

I will look up your info you gave me on supps thanks.

 

[Freddd]

Having MCS is getting so old, making it hard to give chemical support to body. Long ago could tolerate small dose of snri's and helped take edge off of some of the malaise/mito issues as well as pain reduction. All those sort of meds are risky for me though because I get increased pressure in head apparently from them and now long lasting awful headaches can come on even from practically homeopathic doses of snri. same thing happens from natural adrenal support in low doses, stimulants or trying some of the methylation protocol. Feel like between rock and hard place. I am also impatient, want to find something where can see result right away as I still work and need to keep going to a degree, plus its not fun in the winter as malaise gets worse.

What have mcs people found they can tolerate for a little extra support? something that gives your brain a zap noticeably and quickly without bad fallout later.........I know its probably an unanswerable question but just in case....short of years of antiretrovirals or a new brain/body......

Hi xrayspex,


As MCS is a symptom of the b12 and folafte deficiencies at the heart of FMS/CFS it usuaLLY GOES AWAY WITH THE REST OF THE csf/fms SYMPTOMS WITH TREatment with the active b12 protocol.

http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics