Thoughts on CFS, histamine/MCAD, and toxicity.

[Chriswolf]

Thanks, it doesn't surprise me at all, I may try a small amount of it just as an informal differential diagnosis. Thankfully my mast cell issues don't seem to be life threatening.

If I get an immediate and severe reaction at least I know I should be putting the pressure on my doc to try me out on oral cromolyn.

I also have some hydroxyzine in case things get a little hairy, so I'm not completely throwing caution to the wind.

 

[Gingergrrl]

@Chriswolf I have no idea if you have MCAS and there are people with it who may tolerate NAC just fine. I tolerate two meds that the Masto society has on their "no" list so we are all different. I also got no benefit from cromolyn (Gastrochrom) even at very high doses. For me the most effective medications are Ketotefin and Atarax (hydroxyzine) which is one that you mentioned.

Am too tired right now to go back and read the thread but have you been tested for serum histamine or any of the other blood tests? Sorry if you already explained this.

 

[Chriswolf]

I have no idea either, and I certainly don't believe that possibly agitating a reaction with NAC is a guaranteed diagnosis, but it is more for my own personal understanding as after taking an initial dose of hydroxyzine, I responded quite well in some respects, however the side effects hit me hard and persisted for days afterward, antihistamines in general also seem to have that effect.

Both myself and my girlfriend have suspected I may have mast cell issues as my inflammation/allergy problems are pretty much constant, it seems as if every little thing at some base level irritates me and some things cause significantly greater reactions than others. Not only that but my INR time is abnormally high, which to me might indicate higher than normal levels of heparin circulating, which would coincide with the theory that my mast cells degranulate at the slightest provocation.

I actually have not gotten it tested, as screwed up as it sounds, I actually have a greater chance of simply getting my doctor to try me out on various meds than he would testing me for certain things. This year I hope to get some more diagnostic stuff done, I will run the idea by him that I'd like to have my histamine levels tested, I know he'll just ask me why I don't like hydroxyzine.

My pitch to him then will basically be that the effect is too strong and I would prefer to try a dedicated mast cell stabilizer instead.

I really do need to have many tests done, but I live in Canada and our healthcare system is just really really dumb when it comes to testing for certain things, I'm going to have to pay out of pocket for many of the ones I really need done.

 

[Gingergrrl]

@Chriswolf What side effects did you have from Atarax (hydroxyzine?) Am only curious b/c I get horrific side effects from the tiniest micro-doses of meds and I have had absolutely zero side effects from Atarax. Do you take 25 mg? Mine is from a compound pharmacy with no dyes, fillers, etc.

In the past when I was having a severe allergic MCAS reaction, the Atarax stopped it dead in it's tracks and is far superior to Benadryl for me. Benadryl even gave me respiratory depression which Atarax does not. I would be very afraid if I ever did not have Atarax that I could require an EpiPen so I use it very sparingly as my doc said it is to be used as a "rescue med" vs. a daily "maintenance med" for my MCAS or I could build up a tolerance. Otherwise I would take it every day, it is that amazingly helpful IMO.

Also interesting that you mention INR b/c when I had mono, and for probably a year afterwards, my INR was high and I had unexplained bruises covering my body. Now they are only on my legs and as far as I understand this all relates to MCAS although I lack the science to explain how. How does unexplained bruising equal mast cells degranulating? (I am sure others have explained this to me before and I did not retain the info.)

Am sorry your doc will not test you for blood histamine or other markers but if you meet the clinical criteria, you can always take the meds without the tests like you said and see if they help. If you want to take a dedicated mast cell stabilizer I would recommend Ketotefin or Quercetin (of course run it by your doc first.)

ETA: I take 200 mg of Ketotefin 2x/day and I take 1000 mg of Quercetin 2x/day, plus whatever Quercetin is in Neuro Protek.

 

[Chriswolf]

Extreme dizziness, muscle weakness, and all-around just feeling extremely tired.

I felt this way for two days after taking only a 25mg dose, the first day I took it I was pretty much confined to bed, I couldn't remain upright without feeling extremely dizzy and tired.

It also greatly exacerbated my dry mouth/eye symptoms, even moreso than benadryl does. In fact I wouldn't ever use Atarax again unless it was an emergency, as it stands I try to avoid using benadryl unless I need to.

In 2011 I had a very bad case of mono and I've been struggling ever since, I suspect my INR is high in part due to mast cell issues, as on Atarax one of the immediate benefits was the dark circles under my eyes disappeared in a matter of hours.

I don't know how actual bruising occurs, however heparin which is a blood thinner is present in mast cells, as is serotonin and other things, and if your blood is being thinned out quite a bit, you will bruise more easily and bruising/dark circles under eyes will be more prominent and last longer IIRC.

I've heard that Quercetin is one of those things that you have to be careful with as it can hurt more than help.

Ketotifen is an antihistamine if I understand correctly, and I really just want nothing to with antihistamines at all if possible. I would like to find out if cromolyn messes around with certain neurotransmitters.

I just want to keep my mast cells from blowing up at the slightest provocation and see where I go from there. The anticholinergic effects of some of these drugs are just too much for me to handle.

 

[Gingergrrl]

@Chriswolf

Extreme dizziness, muscle weakness, and all-around just feeling extremely tired. I felt this way for two days after taking only a 25mg dose, the first day I took it I was pretty much confined to bed, I couldn't remain upright without feeling extremely dizzy and tired.

Wow, for me Atarax is the exact opposite and it clears up all allergic reactions anywhere in my body and helps me to breathe better. It's fascinating how different we all are.

It also greatly exacerbated my dry mouth/eye symptoms, even moreso than benadryl does. In fact I wouldn't ever use Atarax again unless it was an emergency, as it stands I try to avoid using benadryl unless I need to.

I am the opposite and find Benadryl much more drying of eyes, throat, etc, and somehow Atarax is not drying for me.

In 2011 I had a very bad case of mono and I've been struggling ever since, I suspect my INR is high in part due to mast cell issues, as on Atarax one of the immediate benefits was the dark circles under my eyes disappeared in a matter of hours.

I had a very bad case of mono in 2012 but had no idea high INR could relate to mast cells. I also had dark circles under my eyes which my mold doc called "shiners." Do shiners relate to MCAS?

I don't know how actual bruising occurs, however heparin which is a blood thinner is present in mast cells, as is serotonin and other things, and if your blood is being thinned out quite a bit, you will bruise more easily and bruising/dark circles under eyes will be more prominent and last longer IIRC.

Interesting! So would someone with MCAS have thinner blood? I know I have low blood pressure and blood volume but no clue re: it's thickness.

I've heard that Quercetin is one of those things that you have to be careful with as it can hurt more than help.

I've had very positive results from Quercetin and all my docs recommend it for MCAS as a natural antihistamine and mast cell stabilizer.

Ketotifen is an antihistamine if I understand correctly, and I really just want nothing to with antihistamines at all if possible. I would like to find out if cromolyn messes around with certain neurotransmitters.

Ketotefin is a mast cell stabilizer like cromolyn except is more of an H1 stabilizer and cromolyn more of an H2 stabilizer.

I just want to keep my mast cells from blowing up at the slightest provocation and see where I go from there. The anticholinergic effects of some of these drugs are just too much for me to handle.

That was my goal for this year, too, and best wishes on your journey. It's very personalized to find the right MCAS meds b/c everyone is so different.

 

[Chriswolf]

As I understand INR/PT

http://www.webmd.com/a-to-z-guides/prothrombin-time

"Prothrombin time (PT) is a blood test that measures how long it takes blood to clot. A prothrombin time test can be used to check for bleeding problems."

So if your mast cells are going off and degranulating like crazy on a consistent basis and unloading heparin into your bloodstream, it makes sense to me that it would thin out your blood quite a bit. The one thing that people noticed when I did take hydroxyzine was how dramatic the change in my complexion was (for the better), it was just all of the other aforementioned side effects that cancelled that out which prevents me from using it more frequently.

The pharmacist who prepared my prescription for hydroxyzine told me that the medication could be quite drying, and I have experienced sjogren's-type symptoms, as well as showing lymphocyte infiltration on a biopsy of a salivary gland, so I'm sure I am at least partly more susceptible to it's effects.

I had a 23andMe test done and one of the things it told me was that in general I have a higher overall sensitivity to medications and that I may require lower doses, I would say this is accurate considering I'm always cutting pills in half because taking a standard dose always blows right through me.

Perhaps I'm a bit too hasty in my opinion of Ketotifen, I'll keep both in mind for the future, I'll let my doctor know the extent to which hydroxyzine was not an ideal treatment and see what he has to say.

Also thank you for all your replies and your encouraging words, I really appreciate them.

 

[Gingergrrl]

As I understand INR/PT

http://www.webmd.com/a-to-z-guides/prothrombin-time

So if your mast cells are going off and degranulating like crazy on a consistent basis and unloading heparin into your bloodstream, it makes sense to me that it would thin out your blood quite a bit.

Thank you for the link and I remember researching this in detail back in 2012 during my severe case of mono b/c my liver tests were off the charts and I was almost hospitalized to see a liver specialist. Once the mono resolved, the liver numbers normalized yet the bruising continued on my entire body and my INR remained high. I had no known mast cell issues at that time (but now suspect I have had low grade MCAS all my life.) I was referred to a hematologist at that time and she did all the PT and PTT tests etc and felt everything would normalize eventually from the mono (little did she know LOL...)

The pharmacist who prepared my prescription for hydroxyzine told me that the medication could be quite drying, and I have experienced sjogren's-type symptoms, as well as showing lymphocyte infiltration on a biopsy of a salivary gland, so I'm sure I am at least partly more susceptible to it's effects.

I do not have Sjogrens and wonder if that makes a difference in ability to tolerate Atarax?

I had a 23andMe test done and one of the things it told me was that in general I have a higher overall sensitivity to medications and that I may require lower doses, I would say this is accurate considering I'm always cutting pills in half because taking a standard dose always blows right through me.

I also have those abnormalities on 23andMe and my liver detox pathway CYP2D6 is +/+ and I also take super tiny micro doses of meds. There was one med (Valcyte) that I could not tolerate at even 1/64th of a pill. I have no idea why I tolerate Atarax and the other MCAS meds so well. Benadryl was the exception and it gave me respiratory depression but Atarax does not.

Perhaps I'm a bit too hasty in my opinion of Ketotifen, I'll keep both in mind for the future, I'll let my doctor know the extent to which hydroxyzine was not an ideal treatment and see what he has to say.

Ketotefin was the turning point in my MCAS and today I am so much better that it is miraculous. I still take six meds for MCAS but back in May I could not eat anything but water without anaphylaxis and was hospitalized and on IV's and shots. Now I can eat over 50-60 foods and no reactions provided I take the meds and now only take the Atarax (rescue med) about 1-2x a month. Ketotefin is a prescription but all the other ones are supplements or over the counter meds.

Also thank you for all your replies and your encouraging words, I really appreciate them.

No problem and happy to help if I can. Am hoping that as I slowly figure out and treat the other underlying issues that the MCAS will go away (hoping I am not being delusional here!)

 

[Old Bones]

This year I hope to get some more diagnostic stuff done, I will run the idea by him that I'd like to have my histamine levels tested.

I really do need to have many tests done, but I live in Canada and our healthcare system is just really really dumb when it comes to testing for certain things, I'm going to have to pay out of pocket for many of the ones I really need done.

After six months on a very restrictive diet, I decided to ease up at Christmas -- a time of year that already intensifies awareness of the many losses this illness imposes. Since all of our traditional holiday treats contain gluten, grains and sweeteners, they've been off limits for several years now. So, I decided to be creative in preparing savoury appetizers instead, using ingredients like smoked salmon, bacon, prosciutto, and aged cheeses. Big mistake . . . because although the food was delicious, I am suffering horribly. I'd already pretty much self-diagnosed histamine intolerance or MCAS, now I'm even more confident this is a factor in my multiple layers of discomfort. And, my eyes are almost swollen shut.

I've periodically raised the issue of histamine with my GP over the years with no response from her. Yesterday, I "googled" histamine and my city's name and it appears that the test may be available, but the blood is sent from Canada to the Mayo Clinic. Based on past experience with requests for Lyme and SIBO testing, I suspect I'd be denied the test. I also searched for naturopaths in my city handling histamine issues, and it appears not to be on their radar either. I live in a city of 1 million plus, so this surprises me.

As a fellow Canadian, where would you go for testing? Also, I believe you mentioned in another post having the 23andme test. Any advice/opinions on having this done?

 

[Gingergrrl]

So, I decided to be creative in preparing savoury appetizers instead, using ingredients like smoked salmon, bacon, prosciutto, and aged cheeses.

Anything aged or smoked (meats, salmon, cheese, etc) is super high histamine levels and not tolerated by anyone with active MCAS. Whereas sugar and milk and some of the things you might think to avoid are actually very low histamine (but can of course be bad for other reasons.)

Even if you can't get tested, you can follow the SIGHI list/diet which has been pretty spot-on for me. I was tested and have a local MCAS doc but even without one, the diet and meds/supplements would have helped.

You can order things like Neuro Protek, Quercetin, Daosin, Zyrtec, etc, without any prescription. The only daily MCAS med I have that is prescription is Ketotefin b/c it is not available at regular pharmacies in the US (not sure why) but I think it actually is in some other countries. Not sure about Canada.

Hope this helps a little.

 

[Old Bones]

Even if you can't get tested, you can follow the SIGHI list/diet which has been pretty spot-on for me.

Thanks, I've placed the SIGHI diet at the top of my "To Do" list. My problem is that I have many issues that can be helped by diet, but the permitted/excluded foods on the various lists are different. Once I combine all of the restricted-food lists, there's not much left for me to eat. But, since my histamine response is the most intense in terms of nearly-unbearable symptoms (intense itch, worsened fatigue, nausea, joint pain, plus at night it feels like my arms and legs have been dipped in acid), I think I'll put up with the bloating and other digestive issues. Besides, based on the mast cell disorder symptom lists I've read, perhaps tackling my histamine problem will help with the digestive issues. I'll ask my doctor about the Ketotefin you mentioned. Although she hasn't seemed to be aware of MCAS, she generally has been supportive.

 

[Chriswolf]

As a fellow Canadian, where would you go for testing? Also, I believe you mentioned in another post having the 23andme test. Any advice/opinions on having this done?

There may be private clinics in your area that may do it, my girlfriend and I are pretty much resigned to leaving the country for testing/treatment. Canada is a terrible, terrible place for people with CFS, IIRC there is no test that you can get via your GP for mast cell disorder even though they exist, maybe it depends by province however, I'm not sure.

It doesn't fit in with the policy decisions made by those in charge as people with mast cell disorders should never ever be put on serotonergic drugs, which are a major crutch for our triage-based system.

I also don't believe that my histamine issues are primarily what my problem is. I believe PGD2 is just as if not more of an issue than histamine, hence why I would like to find a mast cell stabilizer that isn't an active antihistamine.

 

[Christopher]

Activated B2 (FMN), following intensive candida/bacteria purge, eliminated my ongoing need for antihistamine, mast cell stabilizers. My MC symptoms are relatively benign, but had been persistent. Now I can eat a spoonful of yogurt, sauerkraut every other day, + avocado. There are a lot of papers available at mastcellmaster.com.

how did you go about purging sibo?

 

[ahmo]

You'll find my choices and the sites I found useful here:
http://forums.phoenixrising.me/inde...campaign-the-answer-to-my-ammonia-quest.1701/

 

[PandaDarling]

A lot of the crazy vegan sorts always made a good point,- you can't get better on a low calorie diet, it stresses you.

Easy on the 'crazy vegan' talk
Yes I follow a vegan diet. And no one likes being labelled!

 

[Chriswolf]

I finally tried NAC and it didn't seem to elicit a terrible allergic reaction, which I didn't really count on happening to begin with.

That being said, after taking a few doses I started feeling strange, it's hard to describe. I felt uncertain and somewhat anxious. It was peculiar as I'm very much in tune with those types of changes in mood and physical disposition and I definitely experienced a perceived increase in anxious feelings and physical jitters that I really couldn't correlate with any situational trigger.

I also experienced joint tension and a few issues with my lungs which kind of scared me off using it, especially considering it can actually exacerbate the development of malignant tumors.

Thankfully it didn't cause any severe reactions, but I don't know how much good it will do me taking it consistently.

I've also tried black cumin seed oil which seems to have helped a little bit, my stomach doesn't get as inflamed as it was when I wasn't taking it.

The only problem is I have to take it approximately 3x a day as the effect wears off quite quickly I've noticed.

 

[Hope78]

Justy, may I asked how you received the EDS diagnosis without being hypermobile? I have MCAD plus gastroparesis and lots of folks with this constellation have also EDS. I have some EDS features, but not the typical hypermobility!