I Can Tolerate Barely Any Medicines...

[Misfit Toy]

A month ago, I started seeing a psychiatrist for anxiety and depression. Almost any sort of treatment I have tried this year or in the past several years, but especially this year has caused me a reaction.

I am depressed over this. That was one of my biggest reasons for seeing the psychiatrist...I am sick of not being able to take the very things that could help me. It's depressing and anxiety provoking....especially for pain.

This guy is a great shrink. He believes in illness and looked up my illnesses, etc. Because I have so many reactions to psych meds, he put me on an oldie but goodie...I used to be fine on it-Depakote. I took it for years.

It has been working for anxiety. I feel so much better anxiety wise, but every night when I take it, it feels like an elephant is sitting on my chest and I can't breathe. I have to sleep with pillows under my head.

I thought that maybe it was methylation doing this, but nope, it's the Depakote and I am stunned. I took this years ago for years.

I seriously can't take really any medicines or supplements. I tried Cannibis oil-major allergic reaction. Progesterone made me nuts and have headaches. The Enbrel caused me a serum sickness reaction...now this. That serum sickness reaction lasted for over a week with prednisone, etc. It was a nightmare.

This whole thing is scary.

My CFS doc believes I have MCAS. He is positive of it. I don't have mast cell disease...I tested negative but he feels that with all of my never ending sensitivities, this is what I have.

I don't even know how to treat MCAS when you basically can't tolerate anything.

My therapist, understandably wants me off of this Depakote, but it's helping my anxiety and I don't want to stop taking it even if I can't breathe or sleep due to the lack of air...how crazy does that sound?

Just shoot me....

 

[Misfit Toy]

@JPV -I have celiac disease and I also am allergic to milk, soy, oranges, pears, tomato and I'm sure other things. My food is so bland it can't get much blander. I rarely eat out due to food allergies.

I do take probiotics. I'm sure the gut is a factor but I believe it became a problem years into the illness. I've tried garden of Earth probiotics, VS L3, and some of the most expensive probiotics. I think it's bigger than the gut.

I just tried CB and felt lousy on it. Diarrhea and stomach cramps with itching.

Thanks though for the suggestion.

 

[Wayne]

Inability to tolerate medicines is apparently a hallmark of pyroluria, a genetic metabolic disorder, supposedly affecting as many as 10% of the population. Other common symptoms of pyroluria include depression and anxiety. The snippet below is from THIS WEBSITE.

I'm just learning about pyroluria myself, and have discovered supplementing a form of Vit. B6 called P5P seems to have brought a new relaxation to my body. There's a number of posts on PR about this--I think @ahmo is well versed on it and may be able to fill you in on a few more specifics.

Kryptopyrrole A test for diagnosing Pyroluria
Pyrrole Disorder, Also known as Pyroluria, is an abnormality in biochemistry resulting in the overproduction of pyrrole molecules. Pyroluria can be diagnosed by the kryptopyrrole test. The Kryptopyrrole test determines the levels of pyrroles the body excretes. Pyrroles have little or no function in the body and are effectively excreted in the urine. However, pyrroles have an affinity for zinc and vitamin B6. So, when pyrroles are elevated in the urine they deplete the body of vitamin B6 and zinc and represent a marker for functional deficiencies in vitamin B6 and zinc. A high incidence of pyrrole disorder is found in individuals on the autism spectrum, individuals with anxiety disorder, depression, obsessive-compulsive disorder, schizophrenia, bipolar disorder, aspergers, and ADHD. The kryptopyrrole test and pyroluria have also been referred to as KPU, Kryptopyroluria, KP, HPL, Mauve factor, and Hydroxyhemopyrrolin-2-one (HPL).​

 

[AndyPandy]

Really sorry @Misfit Toy. I think @Gingergrrl is struggling with MCAS and has recently started some sort of treatment. I understand she had become supersensitive to all manner of things.

Best wishes, Andy

 

[adreno]

When I can't tolerate meds (which happens often), I usually try to find natural compounds which work similarly. They might not be as powerful as the meds, but usually the side effects are much milder.

Dekapote is an anticonvulsant, so the first thing I would try in your case is taurine. Taurine has anxiolytic properties and has helped many people. It's very cheap. Niacinamide also works very well in some people.

Overall, I agree with @JPV that the symptoms you are describing could indicate gut dysbiosis. This can very easily cause anxiety. I would see gut health as a long term goal if I were you.

 

[Gingergrrl]

Really sorry @Misfit Toy. I think @Gingergrrl is struggling with MCAS and has recently started some sort of treatment. I understand she had become supersensitive to all manner of things.

Best wishes, Andy

Andy, I was hospitalized for a week due to MCAS b/c it reached the point that any food I ingested was causing stage two anaphylaxis and I got down to 97 lbs and thought I was going to die.

For me the final trigger was breathing in toxic black mold for over two yrs but didn't know it until too late. I think my situation may be different than @Misfit Toy but if I can be of help, send me a PM.

Right now taking seven meds in order to eat 1-2 meals per day and can share what they are and how I take them by PM if it can help. MCAS for me has been an all new level of hell beyond what I thought was possible!

 

[justy]

I have MCAS and take antihistamines and H2 blockers twice daily plus vitamin c as mast cell stabiliser. It can take some trila and error to find the right anti H's for you as it has for me, but basically its H1 + H2 + mast cell stabiliser of some kind plus low H diet, plus anything else that helps.

Its possible that If the MCAS is related to immune dysfunction due to chornic infections or viruses then it can eventually lessen or go away. I have Lyme but cant treat it so am doing iv Glut and Myers and sub Q low dose GG - so far tolerating all these things.

So sorry Misfit. xxx

 

[Gondwanaland]

I just tried CB and felt lousy on it. Diarrhea and stomach cramps with itching.

This sounds like oxalate dumping.
Some of us who tried CB found out that oxalates were a big issue. Link in my sig "Prebx Probx Ox"

 

[brenda]

I reached a stage where l could not tolerate anything, even chloride evaporating from a running tap was intolerable and newspapers could not be brought into the house. I existed on mainly brown rice and lost 56 lbs in weight. The way out of this, which in hindsight was the result of contracting theLyme Disease, was to get chemicals out of my environment and eat organic food and distilled water. Gradually l came back and can now tolerate a lot more things even chemicals in small doses.

My next challenge has been to tolerate methylation vitamins and avoid mast cells activation which means interstitial cystitis and the way forward has been by increasing nutrients generally by raw dried superfoods and using a rife device for nutrient frequencies.

I have been able to start an active b complex at last. There is a way out but it takes time and diligence.

 

[Misfit Toy]

@adreno and @JPV -I know this. But...here is my problem. I don't eat gluten, milk, tomato, soy, pear, cheese...you name it. So, my meals are bland.

I want people to hear this, because like in Alice's post...where someone said...You must do this or you have a choice about what you do...I am not well enough for any added diet. I can't do the GAPS diet. I can't do these diets. I am already too tired. I am not bedbound, but food preperation for me is too exhausting.

Last night, I had chicken, as plain as it gets with lettuce and italian dressing. Yesterday, I had turkey salad on lettuce. Breakfast-Quinoa...or a drink in AM that is organic and full of probiotics and vitamins.

I have no energy to do the GAPS diet. NONE.

I took and take probiotics for years, with no benefit. So when someone recommends diet change to me...I become angry. I already don't eat so much, what more am I supposed to do?

I have mentioned before about diets on here. I did the low histamine diet for 4 years. Guess what? Came back so allergic to all foods after completion. Foods I wasn't allergic to, I was now allergic to. Every single food I gave up, I became allergic to.

So, what does that say? I stopped eating tomatoes for 4 years...I am now allergic to them when before I was not.

I have done Garden of Life probiotics, VSL3, the new one that people love that makes me sick.....

I also give myself magnesium and taurine shots...so I am getting taurine and nope, it has not helped my anxiety.

I have done stool test after stool test, but it has been awhile. I was on Butyrate at one point, I have springgreen bentonite clay. I made my own sauerkraut and had bugs all thoughout my apartment from it....it was gross.

Back in 2011, I tracked down a woman with kefir grains and made kefir even though I am allergic to milk and goats milk. I ate the grains...I never felt any better. EVER.

So, just like when people say...get up and exercise those with ME! Go water jogging! When people get pissy about that or mad, I get mad because diets don't do diddly for my gut......diddly.

I did the elimination diet and rotation diet to no avail. I finally stopped rotating foods because I felt no better at all and again, meal prep for that was too much for me.

And you may be right that the gut is involved, but doing all I have done has done zip and I will be as sure as hell, I am not doing a creepy fecal transplant. No effing way.

This illness is a full time job and adding food preparation even more...I can't even go out and eat often, I eat in and cook EVERY NIGHT. I can't do it....I can't being the key words. I spend many a day in bed. Exhausted. Not all of the time, but a lot.

 

[Misfit Toy]

@Gingergrrl -yes, you and I have a different thing going on. There are 2 types of MCAS..."sudden" and "leakage." I have leakage. Mine is not anaphylactic...sorry for spelling...yours is. Mine is it leaks...a rash, breathing issues, heart flying, anxiety and body pain...it pervades the body. yours is right to the point...epi pen sometimes needed, etc. Yours is to everything but foods is the WORST.

Mine is to foods, but mostly to medicines. Meds are my nemesis. I know what you are going through, not because I have gone through it, but in many ways...I understand it so well and I am so sorry, Ginger. I haven't said that as of late...I have been too busy in my own personal hell.

 

[Gingergrrl]

@Gingergrrl -yes, you and I have a different thing going on. There are 2 types of MCAS..."sudden" and "leakage." I have leakage. Mine is not anaphylactic...sorry for spelling...yours is. Mine is it leaks...a rash, breathing issues, heart flying, anxiety and body pain...it pervades the body. yours is right to the point...epi pen sometimes needed, etc. Yours is to everything but foods is the WORST.

Mine is to foods, but mostly to medicines. Meds are my nemesis. I know what you are going through, not because I have gone through it, but in many ways...I understand it so well and I am so sorry, Ginger. I haven't said that as of late...I have been too busy in my own personal hell.

MT, I have both the sudden and the leakage types and responded since I got tagged but definitely not implying we have the same stuff going on (and was happy to be tagged and try to help if I can.) just let me know. Foods are worst for me and smells but I react terribly to most meds too and can't take even micro doses but have no answer on how to solve any of this and wish I did. Hope you feel better soon!

 

[Misfit Toy]

Smells are also horrible for me. I can't wear perfumes and so many scents drive me nuts...I had to leave a car inspection place yesterday because the smell of the tires in the place made me nauseaous.

 

[Dreambirdie]

I subscribe to Kenny De Meirleir's ideas that inflammation and gut dysbiosis are major factors in the illness.

Have you tried any probiotics? They help me more than anything I've tried so far. I do very well on Bifido strains and Clostridium butyricum. I believe that Lactobacilli can cause inflammation so I stay away from them. The only issue with CB is that it disrupts my sleep a little but I've been told that those issues should pass after awhile. I'm focused more on Bifido these days anyway. I think Mutaflor is next on the list to try.

Which brand of probiotics do you get? Most I have seen and taken have lactobaccilli.

 

[jepps]

Which brand of probiotics do you get? Most I have seen and taken have lactobaccilli.

This brand has only bifido strains: http://www.iherb.com/Jarrow-Formula...en-US&w=probiotics jarrow&rc=24&sr=null&ic=17

 

[jepps]

B. infantis is a well researched interesting strain, but also B. longum BB536 is very intersting, @Asklipia wrote about it here.

 

[justy]

Hi - I have the same type of MCAS issues as you and smells are driving me literally insane - yesterday the people in the next apartment were doing washing with the windows open and I could smell the washing powder all night.

Today the nurse had perfume on and I could smell it on my arm all day where she stuck the plaster. People around me think I am insane...that I am exaggerating. its awful...

I also get angry when people tell me to change my diet etc...I have NO more energy for extra food prep - I just get by with hwat I can manage and I have kids to feed to. we have a very low income and I cant get to the shop at all because of where I live and my illness. Its just all shit and im so sorry I cant offer advice.

Thanks for telling us about your problems with making food allergies worse. Im low h due but try and sometimes eat the food a little - but I am too scared to eat tomatoes at all - so stupid really - but I get throat swelling, not ANA but its still scary and has made me paranoid about food. I never eat processed or packed food anymore, yet ironically am STILL gaining weight

 

[Misfit Toy]

@justy -I always tell my apartment to let me know if they will be painting in this building because paint and new carpet makes me deathly ill. I have to go stay somewhere else. My liver must not be right. I can taste cigarettes on my tongue if I have been around a smoker. How strange is that...smells make me sick. Literally. I moved from my last apartment due to polyurethane and vomiting from it. I am now scared to move. Ever...again.

I had to say that about diets because they have made me worse...I wish I had never done the low histamine diet. When I went to a different nutritionist, one who works with IC-IC is believed to be a mast cell disorder...she told me...who made you give up oranges and tomatoe? Were you okay on them? YES...I was fine, but I wasn't anymore.

I became allergic to them and then strawberries. Slowly I could eat strawberries, but no citrus ever again. I so miss oranges and tomato. It sucks. I wish I never did that. That might not happen to you.

Diets my ass. You know what I am having for dinner tonight? Zucchini, water with lemon (I can have lemon) and an organic nitrate free hot dog from Whole Foods. I managed to go out in the sun today and I have decided to cook mildly because I would have rather put my energy to enjoying the great outdoors, which meant sitting on a chair and getting some rays.

BTW, I am so glad everyone has diets that work for them..if it works for you...great. But I am over them. Over.

I don't feel that the MAST cell issue is from food...I think it's from my wanker immune system gone awry. Low IGG and IGA and then an autoimmune situation has done this...not food! I also think LYME can mess up MAST cells.

I am a salad eater with not much dressing or crap, no cheese, etc. I eat so well.

 

[Misfit Toy]

@JPV -I read the post that I guess you must've taken down regarding side real. So is she on the RS diet or is she on the CB?

I agree with the possibility of what she says, I don't disagree with that. I don't know if you've been following me at all here on phoenix rising but I've been really sick lately with reactions to everything not just foods, but everything. To the point of having to be on prednisone. I can't take one more reaction.

I don't seem to think this is making any difference to you, but I have low IgG and low IGA. I don't just have chronic fatigue syndrome. I have an auto immune disease along primary immune deficiency.

I am now seeing a psychiatrist due to being suicidal a few weeks ago. All because of all of the reactions I'm having. I had a reaction to the CB. By the way, I only took a quarter of the pill. The first time I took a half and shit my brains out. Other people just cannot even tolerate it.

I think I need a break from this diet thing. I need a break from this because it's wearing me out. I need to become more physically stable and mentally.

 

[Misfit Toy]

@JPV -yes. I love sugar. Many women do though. Could be candida...who knows. Again, I only took a half of the CB or a quarter....that's such a low dose. How do you go lower, ya know?