I Can Tolerate Barely Any Medicines...

[DeGenesis]

Depakote and other valproates are highly toxic to mitochondria.

 

[dannybex]

Interesting. Not sure what's going on. The Depakote causes no rash, but I can't breathe and I develop heart palpitations. My breathing is labored. Plus....gastritis starts.

These are Depakote sprinkles. I put them under my tongue.

I have to take Zyrtec and Prilosec after taking the Depakote when the reaction starts.

Not sure if this is helpful, but Depakote is known to lower folate levels. Maybe your doc is giving you folate with it?

 

[Misfit Toy]

@dannybex -wasn't able to tolerate it.

 

[Mary]

@Misfit Toy - I don't know anything about MCAS. But some of what you describe sounds like MCS - sensitivity to smells etc. Here's an article which talks about different nutrients which can help with MCS: http://www.curezone.org/forums/am.asp?i=411579

Here's another article which talks about nutritional deficiencies in MCS: http://www.ncbi.nlm.nih.gov/pubmed/3313767

Do you take B6 - P-5-P?

Also - have you tried niacin for anxiety? It stimulates GABA receptors.

My liver used to be overloaded with toxins. I reacted very strongly to any meds, alcohol, and so on. I did a major liver detox under the supervision of my chiropractor - it took a month and was rather unpleasant - I got very tired and felt like crap - but afterwards my liver was in much better shape, my digestion improved so much. I had had heavy exposure to chemical solvents while at a job when I was 19 and it was still affecting my liver 30 some years later.

 

[Misfit Toy]

@Mary -Yes, at first it was MCS. I looked up the link you put up. The problem is I can't take sulfur type supplements which a lot of them are when dealing with MCS. I am also not supposed to take B6 due to my 23 and Me test.

The last time I took Niacin, I had a horrible time with pain. I don't know what it did but it woke up my pain big time.

What exactly was your liver cleanse. I am thinking of doing coffee enemas.

 

[Mary]

@Misfit Toy - I did the liver cleanse through my chiropractor who does muscle testing. He determined that it was chemical solvents which were the chief problem (which I had suspected) and gave me two Standard Process products: Parotid PMG and Cholacol II. I forget the doses, but I took them for a month, felt sick almost all month, and finally stopped it and my liver was much better afterwards. After the cleanse I started taking milk thistle (which I still take) and HCL (betaine hydrochloride) for digestion, both of which have helped a lot too.

I just looked up Parotid PMG and saw it seems to be used for detoxing in general, and also heavy metals. The Cholacol II helps with digestion and also has bentonite to mop up toxins.

 

[Valentijn]

I am also not supposed to take B6 due to my 23 and Me test.

The only reason I've heard to avoid B6 is to supposedly slow down the CBS gene. But the recommendation for doing so is completely baseless.

 

[Misfit Toy]

@Valentijn -You, I know believe this, but I am following the protocol and besides, I don't think B6 would do that much for me anyway. You are not into the whole CBS issue. I am following docs orders. It's not affecting me.

 

[Valentijn]

@Valentijn -You, I know believe this, but I am following the protocol and besides, I don't think B6 would do that much for me anyway. You are not into the whole CBS issue. I am following docs orders. It's not affecting me.

It's not a matter of belief. It's a matter of reading the research and following the science, versus jumping on the Yasko CBS bandwagon. Your doctor is wrong. Many doctors are wrong about CBS, because they are trusting an "authority" without critically investigating the claims being made.

B6 is an essential vitamin which does several useful and necessary things. Avoiding it, based on one person's hysterical and highly inaccurate interpretation of study which isn't even related to any specific CBS SNPs, is ludicrous. Try asking your doctor to provide the research showing that anyone should avoid B6 due to 23andMe CBS SNPs, and he or she will not be able to do so.

Frankly I'm disappointed that doctors are behaving this irresponsibly. But all I can do is hope that their patients are getting sufficient B6 in their diets to avoid a deficiency.

 

[john66]

I just got a lecture from my son's genetecist on going on a raw vegan diet. Great idea, just see if you can get someone to do the shopping and prep and I'll do it. I eat cereal and really shitty food because it's all I can afford. My son has Prader willi syndrome. Way too many doctors meds etc. When people say God doesn't give you more than you can handle I want to strangle them.

Sorry you are having such a rough time with meds. I wish I knew the answer. When I tried working last year the company made a product called relaxin that helped me get off ambien, which at this point is the only thing that helps . Benicar calms my brain a bit. Have you ever read any of Ray Peat article or youtube lectures? Worth a read imo.

 

[Misfit Toy]

@Valentijn -here's the thing Val....I don't have the inclination, or desire to learn the ins and outs of SNP's and methylation. You are not in tune with the CBS aspect of 23 and Me or Yasko's beliefs on that matter. I respect that, please respect that I am following them.

I would rather be at the pool, which is where I was today, then studying every aspect of this illness.

My above post was a response to Mary...it had nothing to do with you, but you keep wanting to beat it down my throat that this whole CBS and ridding myself of sulfur or ammonia is a bunch of BS...okay, so that's your opinion or stance.

This is something you only do for 8 weeks to 12 weeks, not a lifetime.

This is my body and I am really tired of people/patients (on here) who aren't physicians saying my doc doesn't know what he is talking about, or that he is wrong. And all over me following Yasko's ideas. I shouldn't get off mag sulphate...said another member and that "your doc doesn't know his biochemistry" and then this. All over Yasko....to me, that is hysteria. Not my doc, not Yasko, but how others on here feel I need to follow "them." The patient with CFS....follow us, MT.

Again, I wasn't asking for anyone's opinion. I don't think an 8-12 week deficiency in B6 is going to kill me and I seriously doubt I am getting a deficiency anyway....could be wrong, but... I guess I will find out.

I think people on here need to remember...you are sick yourself..if you knew everything, you would be well! It makes it very hard to be on this site. I am not liking Phoenix Rising anymore due to some members acting superior, or like they know everything. I can't take it.

I want to be able to come on here and talk about what I am trying or doing without people going at me because they don't agree. Say what you feel once and leave it alone. We are all free beings and should be allowed to do what we want.

It makes me sad that I don't even want to post, or be on here anymore.

Signing out.....

 

[Valentijn]

@Valentijn -here's the thing Val....I don't have the inclination, or desire to learn the ins and outs of SNP's and methylation. You are not in tune with the CBS aspect of 23 and Me or Yasko's beliefs on that matter. I respect that, please respect that I am following them.

I find it a bit insulting to say I'm "not in tune". The problem is that I know a helluva lot more about the Yasko CBS SNPs than most doctors, due to their failure to look for a scientific source for those claims.

While I'm not opposed to people treating based on belief or faith, those claims intrude into the realm of science when they claim that they have anything to do with genes or specific SNPs. Yasko is creating treatment protocols while claiming a scientific basis, but the science does not support her claims regarding CBS at all. You and your doctor are free to believe what you want, but you keep suggesting that there is a scientific basis for it when you tie it in to CBS.

This is my body and I am really tired of people/patients (on here) who aren't physicians saying my doc doesn't know what he is talking about, or that he is wrong.

Your doctor is a human being. He is fallible. His beliefs about CBS are wrong. There are numerous studies showing this, and none which support his beliefs about CBS at all.

I think people on here need to remember...you are sick yourself..if you knew everything, you would be well!

Brilliant. Since we're sick, we're wrong about everything. I'm not even coming close to claiming to know how to cure ME, or anything else. I'm stating that the research on a very specific subject shows that Yasko's interpretations of CBS SNPs are completely groundless and even wrong.

I want to be able to come on here and talk about what I am trying or doing without people going at me because they don't agree. Say what you feel once and leave it alone. We are all free beings and should be allowed to do what we want.

Of course you're free to do what you want. And when you post potentially harmful disinformation, I'm free to point out that it is disinformation and that it can have a harmful impact.

If you only want to talk with other believers, without any dissent or close examination of treatments or claims, a private group or posting in the blog section would probably work better. Because spreading disinformation on any topic in a more public forum is likely to result in some disagreement.

 

[Misfit Toy]

I'm not spreading misinformation. It's not for others to do-it's what I'm doing.

Everyone can decide what is right for them. I don't care what others do. It's their life. I'm not spreading misinformation. I'm not spreading anything.

I never suggested there is a scientific basis. I said I believe in doing it. It's short term and my business. I'm trusting my doc for now.

That is allowed. I don't want to talk to only other believers, but I do want people to respect my choices, my decisions and to stop ramming their beliefs down my throat.

You felt the need to chime in about something that had nothing to do with you. Me not taking B6 is my choice and it was addressed to Mary.

This is ridiculous. I could see getting miffed if I said, to get better I'm going to ram my car into a wall, but all I'm doing is taking one yucca pill, 75 mg of Molybdenum and avoiding onions and garlic and B6 for now. I don't believe that merits this kind of behavior from another member on PR.

 

[Tammy]

I am not liking Phoenix Rising anymore due to some members acting superior, or like they know everything. I can't take it.

I want to be able to come on here and talk about what I am trying or doing without people going at me because they don't agree. Say what you feel once and leave it alone. We are all free beings and should be allowed to do what we want.

It makes me sad that I don't even want to post, or be on here anymore.

I've been kind of feeling the same way too lately.............I have recently decided to use the ignore feature.........has made a big difference for me!....................should have used it a long time ago.

 

[Misfit Toy]

@Tammy -yes, me too!

 

[Misfit Toy]

@Wayne-I will be tested for pyroluria. Just letting you know and thank you.

 

[Snookum96]

I've been kind of feeling the same way too lately.............I have recently decided to use the ignore feature.........has made a big difference for me!....................should have used it a long time ago.

Me too, at times

 

[Misfit Toy]

One of the things to do to rectify the situation is to stay off of PR. Seriously...come on here...sweep through what's going on..respond to what resonates and people who are reasonable and then log off.

Who needs the grief with our already messed up adrenals and limbic system?

 

[snowman]

Dear @Misfit Toy, I am sorry that everything is so frustrating for you from food - to medicines - to the scent of everything - to reading people's advice. If at some point you and your doctor are interested in trying riboflavin-5-phosphate (aka R5P or FMN or flavin mononucleotide), it is available OTC as a powder with no additives, and it has helped some eat more foods. I think Ahmo on a "B2 I love you" post found a bottle with about 18mg per pill if the inactive ingredients aren't problematic or if it's bothersome to get the pure powder measured or compounded. I do not post often nor know how to find the page or put a link to it.

As with most patients here, many other remedies were tried first, so it is not known if that alone made the difference or if it was only helpful after years of other remedies that the R5P was the last puzzle piece to be able to eat a few more foods. Everyone seems to have an unique version of illness, but with some overlapping parts, so I am hoping this or other things that you and your doctor may decide to try can make your version of illness be less of a burden.

Unfortunately, it seems that part of the illness challenge for many of us includes having difficulties with communications being written or interpreted as respectfully as we intend. It can at times be more stressful to share personal information and get advice from others who with good intention are eager to help every specific difficulty mentioned. Communication is also harder when there is not that personal contact where facial expressions and voice inflections help us immediately adjust speech and interpretations. It may be less stressful to read without logging in or posting, which keeps things more anonymous during more frustrating periods of illness.

When you and your doctor do find some things that are helpful to you, please remember the posters and many anonymous readers here, and consider posting what helped you, since the same thing may help several others, including others who cannot find or afford the right doctors and rely on the learning and experiences of posters here as their best source of medical help and hope.

 

[maryb]

@john66
I'd be interested to know more about the use of relaxin and how it helped you - I take zopiclone nightly and would dearly like to come off it.