ME/CFS is a mast cell disorder (hypothesis)

[camas]

I'm getting both flushing and mini hot flashes. My real hot flashes involved chronic heavy sweating to the point of needing to change my clothes. My mini hot flashes just mean I have to wipe the sweat from my face and deal with slightly damp clothes for a little bit. Flushing doesn't make me sweat but I feel hot and see the color change.

I stopped eating oranges, high histamine, recently too. I knew that the skins were making my lips burn but I was enjoying them too much. I'm using sugar now for blood glucose drops. It helps better than anything. Granted, I won't have any teeth after awhile but hey ...

Thanks for making that distinction. I don't really sweat at all, just flush and burn to the point that it looks and feels like I have a sunburn. So I must just be having histamine reactions.

I've also given up citrus which was less difficult than I had anticipated. I've replaced oranges with mangoes and kiwis and seem to be doing okay with them. You know potatoes have always made my mouth burn, but I ate them anyway! Not too bright. I read that red potatoes have less histamine, and I have found that they don't make my mouth burn. So I'm eating a very limited amount of them.

I hope your teeth hang in there.

 

[Shell]

I didn't know oranges were high histamine. I haven't eaten or drunk orange juice in years because it always set off the asthma.

 

[camas]

I didn't know oranges were high histamine. I haven't eaten or drunk orange juice in years because it always set off the asthma.

I didn't know that either. If you click on the 'avoiding high histamine foods' link in my signature, you can find a list of foods that are high in histamine. I'm wondering if the crashes I tend to get in August come from gorging my favorite summer produce. No tomato plants for me this year. I think I'll try growing some holy basil which is supposed to be a natural H2 blocker.

I see that Dr. Theo's new methylized form of luteolin is going to be available in May. It's going to be called Brain Gain and is expected to be a more effective mast cell stabilizer than NeuroProtek because it is more bioavailable.

 

[xchocoholic]

Wow. I just looked at the Avoiding high histamine foods link and I honestly can't relate to most of it. And I was surprised to see this. I take it every few days.

Yeasts Of The Species


Saccharomyces

If I were to try to stick to this diet and the GFCF (mostly paleo) + low ox diet I'm on, I'd starve. tc ... x

 

[camas]

Wow. I just looked at the Avoiding high histamine foods link and I honestly can't relate to most of it.

If I were to try to stick to this diet and the GFCF (mostly paleo) + low ox diet I'm on, I'd starve. tc ... x

I know, you can eat seafood! I'm so jealous. I already knew I reacted to most things they list (throat swelling, asthma, etc.), so it hasn't been too hard to give up the rest. This is about the only diet from which I've seen any improvement (however small), but we are all different in our reactions.

 

[dannybex]

Interesting that most of the fruits and veggies on the 'restricted' list are all very high in salicylates.

 

[camas]

Interesting that most of the fruits and veggies on the 'restricted' list are all very high in salicylates.

I wonder if that is coincidental? Some people with mast cell issues are very sensitive to salicylates and have to avoid not only salicylate foods, but also aspirin and NSAIDS which are mast cell degranulators. But some mast cell patients actually take aspirin to help reduce swelling from the inflammation resulting from the prostaglandins released by mast cells. I guess their doctors must have some way of determining if the benefits of aspirin outweigh the risks.

 

[antherder]

I wonder if that is coincidental? Some people with mast cell issues are very sensitive to salicylates and have to avoid not only salicylate foods, but also aspirin and NSAIDS which are mast cell degranulators. But some mast cell patients actually take aspirin to help reduce swelling from the inflammation resulting from the prostaglandins released by mast cells. I guess their doctors must have some way of determining if the benefits of aspirin outweigh the risks.

I'm intrigued by the whole salicylate/mast cell degranulation thing, as I'm sure I have a food salicylate sensitivity. The more salicylates I eat, the worse I feel, and I can't tolerate aspirin as it gives me asthma. Does anyone else here have an aspirin allergy/sensitivity?

 

[antherder]

I didn't know oranges were high histamine. I haven't eaten or drunk orange juice in years because it always set off the asthma.

Do you know if you have a sulfite sensitivity? I'm not sure if there would be added sulfites in orange juice, but they are a common preservative and they give me asthma.

 

[Shell]

Do you know if you have a sulfite sensitivity? I'm not sure if there would be added sulfites in orange juice, but they are a common preservative and they give me asthma.

Not sure but I can't eat oranges either so it's something in the orange. Weirdly I can eat satsuma and clems without a problem so whatever it is in oranges isn't in it's close relatives.
But my biggy is mango. That's so bad just touching it gives me hives and breathing problems.

I am convinced there must be something environmental in this. I am surrounded by people who have very serious allergies indeed. There was never this problem when I was a kid. In fact I was the freak in primary school because milk made me projectile vomit so when the kids got milk I got water. I don't remember anyone else having allergies or intolerances. Now I'm surrounded by people with them.
It might be a homeschool thing though as parents with sick kids can't send them to mainstream school any more (unless they want to live at school with them). So maybe I am seeing more sick kids because I home ed my lot. (And my 8 year old is not well enough for school)

 

[camas]

I'm intrigued by the whole salicylate/mast cell degranulation thing, as I'm sure I have a food salicylate sensitivity. The more salicylates I eat, the worse I feel, and I can't tolerate aspirin as it gives me asthma. Does anyone else here have an aspirin allergy/sensitivity?

The last time I took an aspirin I had bad stomach pain and the runs, so have avoided it. No asthma or throat swelling though, so I'm not sure exactly what was at play.

Since we're on the topic of food I thought I'd add the link to this article (PDF) that, while not specifically about mast cell issues, explains the effects of histamine and tyramine on our bodies.

Toxicological Effects of Dietary Biogenic Amines
(histamine, tyramine and putrescine, etc.)

Biogenic amines play essential roles in the normal development, metabolism and physiological functions of humans. However, when ingested in high concentrations they can cause a range of toxicological effects.

 

[dannybex]

I wonder if that is coincidental? Some people with mast cell issues are very sensitive to salicylates and have to avoid not only salicylate foods, but also aspirin and NSAIDS which are mast cell degranulators. But some mast cell patients actually take aspirin to help reduce swelling from the inflammation resulting from the prostaglandins released by mast cells. I guess their doctors must have some way of determining if the benefits of aspirin outweigh the risks.

Yeah, I dunno -- I definitely have salicylate intolerance issues, but the mast cell hypothesis doesn't fit me very well at all. Just shows you how we're all so different....

 

[UM MAN]

Not sure but I can't eat oranges either so it's something in the orange. Weirdly I can eat satsuma and clems without a problem so whatever it is in oranges isn't in it's close relatives.
But my biggy is mango. That's so bad just touching it gives me hives and breathing problems.

I am convinced there must be something environmental in this. I am surrounded by people who have very serious allergies indeed. There was never this problem when I was a kid. In fact I was the freak in primary school because milk made me projectile vomit so when the kids got milk I got water. I don't remember anyone else having allergies or intolerances. Now I'm surrounded by people with them.
It might be a homeschool thing though as parents with sick kids can't send them to mainstream school any more (unless they want to live at school with them). So maybe I am seeing more sick kids because I home ed my lot. (And my 8 year old is not well enough for school)

Mangoes contain Urushiol, lots of people are sensitive to them.

 

[smartin]

...

I haven't tried any bioidenticals but my labs came back low on pregnenolone so I'm taking that. I take dhea too but I'm not happy with the occasional thick whiskers I get on my chin and the white fuzz on my face.

Have you tried 7-keto-DHEA which has had the testosterone stimulating part of the molecule removed thus avoiding the whiskers. etc?

 

[xchocoholic]

Have you tried 7-keto-DHEA which has had the testosterone stimulating part of the molecule removed thus avoiding the whiskers. etc?

Thanks. I've forgotten now why I prefer using DHEA whiskers and all. I'll probably remember why in a day or two ... It has to do with how they each work tho. tc ... x

 

[xchocoholic]

Yeah, I dunno -- I definitely have salicylate intolerance issues, but the mast cell hypothesis doesn't fit me very well at all. Just shows you how we're all so different....

I can eat most of the food on the high histamine list and not the ones we're supposed to eat if I had MCAD so I'm not sure how my symptoms fit into this hypothesis either. Except that my OI was controlled via Zyrtec for a few weeks. Then like the other "wonder cures" I've found the effects disappeared.

I'm still hopeful about this treatment tho. I was doing well until I brought on a massive kidney infection by eating high ox foods (um, and a few other gf goodies) ... It didn't click with me that oxalates would cause kidney stones despite of the fact that I wasn't feeling pelvic pain from these. Then I was given Levafloxin ... Why am I doomed ? Do I have a target on my forehead ?

I have a ton of allergies dx via the skin prick test and I know I get angioedema from certain foods tho. And vasodilation can cause OI. So it's possible too that I'm just dealing with more allergies now than I was when the zyrtec was working. Pollen is horrible here right now. I wasn't treating these everyday for years and now I am.

Fwiw tho, and maybe it's just me, but I'm not seeing our CFS / ME symptoms like PEM or drug intolerance listed on the MC forum either. Many seem to be dealing with regular anaphylaxis and need epi pens. And just from what I'm seeing they respond well to taking a LOT of meds. I'm fuzzy headed unless I stick to 5 mg of zyrtec at a time and 1 - 2 tsp of dye free children's Benadryl.

tc ... x

 

[ramakentesh]

How are you guys going with Luteolin? It has potent antiinflammatory effects in microglial cells, reduces expression of cerebral cytokines and is an amazing anti-oxidant as well. It has so many effects so I am quite interested to hear.

 

[camas]

Fwiw tho, and maybe it's just me, but I'm not seeing our CFS / ME symptoms like PEM or drug intolerance listed on the MC forum either. Many seem to be dealing with regular anaphylaxis and need epi pens. And just from what I'm seeing they respond well to taking a LOT of meds. I'm fuzzy headed unless I stick to 5 mg of zyrtec at a time and 1 - 2 tsp of dye free children's Benadryl.

X, So sorry to hear that zyrtec is not helping your OI the way it was in the beginning. It's never made a dent in mine, just seems to help with the burning, flushing, and neuro problems like paresthesia.

I'm following a couple of masto groups on facebook that seem to be populated with more shockers than leakers, even though statistically they supposedly make up only a quarter or less of masto patients. But you can see why since they are going from crisis to crisis and need lots of support. They are taking large amounts of the meds they can tolerate (mostly out of desperation), but there is a lot of trial and error on what they can tolerate. They seem to be really chemically sensitive not only to drugs, but to odors (perfume, dryer sheets, cleaning agents, etc.) and things that touch their skin (elastic, makeup, shampoos).

I see some complain of PEM, although they don't have that term. They say that exercise causes degranulation which causes them to crash the next day. Some seem to be doing okay with things like yoga. It seems like the holistic/integrative group is doing better overall. I don't know if that's because they tend to be leakers and not shockers, or because all the drugs were just compounding their problems. That's the group I'm mostly following since I'm so chemically sensitive.

I'm seeing some improvement in the areas I mentioned above, but nothing has touched my muscle weakness or low energy which are my biggest problems. I e-mailed back and forth a little with a woman from the Canadian masto society who said 'crushing fatigue' is her primary symptom. Sigh.

I believe the reality is that even if some of us are dealing with mast cell issues (which I'm sure I am based on my TMEP spots) it's not an easy problem to treat. In his guide for physicians Dr. Afrin says that he only sees significant improvement in 10% of his patients and it requires a lot of trial and error with all the available meds.

I'm going to keep plugging along trying to stick to a low-histamine diet and trialing different supplements and meds. I have ketotifen coming from Canada. Maybe that will be my magic bullet. Heh.

Forgot to add that a bone scan showed that I have osteopenia in my hips and thighs. Don't know if it's because of my age (54) or because of mast cell issues which can cause bone loss. Given the state of my teeth (45 crowns and counting), I suspect the mast cells. In either case, I'm glad that I had it checked. I had already added a K2 supplement to get calcium out my blood and into my bones where it is less likely to trigger degranulation. Now I need to up my calcium and magnesium, and continue to work on my low vitamin D levels.

(Sorry to be so long-winded!)

 

[camas]

How are you guys going with Luteolin? It has potent antiinflammatory effects in microglial cells, reduces expression of cerebral cytokines and is an amazing anti-oxidant as well. It has so many effects so I am quite interested to hear.

I'm taking a low dose of NeuroProtek which has luteolin. Hard to tell if it's making a dent or not. Dr. Theo has developed a new methylised (sp?) form of luteolin called Brain Gain which will be coming out this spring. I look forward to trying that since my liver issues limit how much luteolin and quercetin I can tolerate - agitation being the main issue.

 

[xchocoholic]

X, So sorry to hear that zyrtec is not helping your OI the way it was in the beginning. It's never made a dent in mine, just seems to help with the burning, flushing, and neuro problems like paresthesia.

Hi camas,

I'm glad to hear that your protocal is helping you with so many symptoms. I wonder why it hasn't helped your OI tho.
Oh, maybe more zyrtec would help since it's the one recommended for swelling ?

I'm following a couple of masto groups on facebook that seem to be populated with more shockers than leakers, even though statistically they supposedly make up only a quarter or less of masto patients. But you can see why since they are going from crisis to crisis and need lots of support. They are taking large amounts of the meds they can tolerate (mostly out of desperation), but there is a lot of trial and error on what they can tolerate. They seem to be really chemically sensitive not only to drugs, but to odors (perfume, dryer sheets, cleaning agents, etc.) and things that touch their skin (elastic, makeup, shampoos).

I understand what you mean about shockers needing support. My DD was a shocker. She rarely reacts now that she's watching her diet. I see people who seem to be living a normal life while taking a lot of MC meds daily. Wouldn't that be nice ? The newbies seem to be having problems but are told to hang in there and try to find a MC regime that works for them.

I see some complain of PEM, although they don't have that term. They say that exercise causes degranulation which causes them to crash the next day. Some seem to be doing okay with things like yoga.

This is interesting because I've had severe contact allergen attacks most of my life now and I don't remember ever feeling like I couldn't exercise or had PEM until I got CFS. Runny nose and all .. tmi ... lol ... The people on the other board with their MCAD under control don't say anything about this. They're my inspiration so I keep hoping ...

It seems like the holistic/integrative group is doing better overall. I don't know if that's because they tend to be leakers and not shockers, or because all the drugs were just compounding their problems. That's the group I'm mostly following since I'm so chemically sensitive.

Picking the right drug isn't easy for sure. So far, I'm good with 5 mg Wal-zyr at a time and Children's dye free Benadryl or childrens chewables. Kow. Too much Benadryl and my sinuses get so dry they hurt. Same with Allegra. Other meds had inactive ingredients that I was intolerant of. Two had lactose. Vistaril put me in a semi coma for 3 days ... It was a real pita trying these.

I've yet to try the supplements because this is working ok and I'm really tired of experimenting for now.

I'm seeing some improvement in the areas I mentioned above, but nothing has touched my muscle weakness or low energy which are my biggest problems. I e-mailed back and forth a little with a woman from the Canadian masto society who said 'crushing fatigue' is her primary symptom. Sigh.

Is your muscle weakness from OI ? If not have you tried Adenosylcobalamin ? That helped my muscle weakness. From what I can tell I only feel weak from OI. It's hard to judge strength when being upright causes hypoperfusion.

I believe the reality is that even if some of us are dealing with mast cell issues (which I'm sure I am based on my TMEP spots) it's not an easy problem to treat. In his guide for physicians Dr. Afrin says that he only sees significant improvement in 10% of his patients and it requires a lot of trial and error with all the
available meds.

Wow .. only 10%. That's terrible. I wonder if this is why other doctors aren't paying a lot of attention to this. FWIW tho. I'd be sick if I followed the low histamine diet and not the paleo low ox that I went on in 2008. I have celiac disease and leaky gut so I have too many common food intolerances. I went off this diet a couple of months ago but I'm working my way back to it due to glucose problems. I feel horrible eating grains and legumes. I'm guessing it's doing something to my blood glucose, insulin, whatever that my body just can't handle. Either that or I'm getting glutened from cross contamination.

I'm going to keep plugging along trying to stick to a low-histamine diet and trialing different supplements and meds. I have ketotifen coming from Canada. Maybe that will be my magic bullet. Heh.

Good luck with your plan. Hope the ketotifen works for you. Is it supposed to work for you since you have TMEP ?

Forgot to add that a bone scan showed that I have osteopenia in my hips and thighs. Don't know if it's because of my age (54) or because of mast cell issues which can cause bone loss. Given the state of my teeth (45 crowns and counting), I suspect the mast cells. In either case, I'm glad that I had it checked. I had already added a K2 supplement to get calcium out my blood and into my bones where it is less likely to trigger degranulation. Now I need to up my calcium and magnesium, and continue to work on my low vitamin D levels.

Sorry to hear about the osteopenia and all the dental work. At least you've got a handle on it. I had an appt to get a bone scan but the script was written wrong so it didn't happen. As a 57 year old celiac, more than like I have this but I'm not eager to find out. Another day another dx ... lol ... tc ... x