ME/CFS is a mast cell disorder (hypothesis)

[MNC]

Hi,

Just wanted to share that today I picked up my lab results and I have elevated Prostaglandin E-2.

I have 831 pg/min when the normal range is 173-537.

I have an appointment on monday with the Internist, but she knows nothing about this.

I took these tests following nanoung's instructions, but he (or she) is no longer coming to the forum, right?

Does anybody know anything else about this Prostaglandin thing?

I think I remember that in fact he told me to take Prostaglandin D2, but at the lab they have done E2 (E instead of D), which is even more confusing...

I hope it is good news in any case, if this leads to something positive I'd be very happy. However I was googling a bit and read that apart from mastocytosis, it can also be elevated in cases of cancer or osteomyelitis (which I also could have in my jawbone accoridng to some tests I took recently, two MRIs and two scintigraphies show bone lesions in my jawbone, where Ian believes I have this cavitation/osteomyelitis).

Any input is welcome.

Thanks

 

[camas]

I'm glad to hear that your protocol 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?

Thanks for slogging through my long post, X. I'm not sure why zyrtec hasn't helped my OI, but has helped my neurological symptoms. It's all a bit of a mystery!

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.

Yes that would be nice! I think the patients I'm following might be more severe because they have full blown Mastocytosis. Although I know MCAS patients can be very ill. Some of the masto patients are working and able to lead fairly normal lives, but I see many who are on or applying for disability, too. The comments about being stuck on the couch days after exercise are probably the ones that jump out at me.

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

I hear you. All my experimenting raised hell with my liver. Had to take a break for a few months.

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.

Some of it is undoubtedly from OI, but I'm uncomfortably weak no matter what position I'm in. I believe it's primarily neurological because it's sometimes more pronounced on my right side. I've gone through all forms of B12 sublinguals and have even given myself shots. If there was any improvement, it was too subtle to note. Since zyrtec has helped my other neurological symptoms, increasing it (as you suggested) might be worth a try.

Wow .. only 10%. That's terrible.

Yeah, we need a lot more research in this area. Thank goodness for the work of Dr. Theo. Here's what Dr. Afrin says in his physician's primer. "We're probably at least a decade away from having the knowledge and testing we need to have to be able to predict what therapy will be effective in any given patient, so 'til then, it's all trial and error, typically starting with the cheap stuff and working your way up in cost as necessary. I've been at this since figuring out in 2008 that that polycythemia patient was actually MCAS, have acquired more than 300 patients with this (only a few with polycythemia, by the way, though they intriguingly seem to consistently respond pretty well to imatinib), and fewer than 10% of 'em haven't gotten significantly better yet, and for none of those 10% have I yet exhausted all of the therapeutic options."

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

Thanks! Ketotifen isn't specific to TMEP. I just see that it getting lots of mentions on the masto boards, so my doc agreed to prescribe it. Here's what Dr. Theo has to say about it: "Ketotifen is a histamine-1 receptor antagonist that is also a weak inhibitor of histamine and prostaglandin release through an unknown mechanism. The additional benefit of ketotifen over other antihistamines is that it blocks the actions of eosinophils usually involved in allergies and particularly in eosinophilic esophagitis/gastroenteritis."

 

[camas]

Just wanted to share that today I picked up my lab results and I have elevated Prostaglandin E-2.

I have 831 pg/min when the normal range is 173-537.

I have an appointment on monday with the Internist, but she knows nothing about this. I took these tests following nanoung's instructions, but he (or she) is no longer coming to the forum, right? Does anybody know anything else about this Prostaglandin thing?

I think I remember that in fact he told me to take Prostaglandin D2, but at the lab they have done E2 (E instead of D), which is even more confusing...

I hope it is good news in any case, if this leads to something positive I'd be very happy. However I was googling a bit and read that apart from mastocytosis, it can also be elevated in cases of cancer or osteomyelitis (which I also could have in my jawbone accoridng to some tests I took recently, two MRIs and two scintigraphies show bone lesions in my jawbone, where Ian believes I have this cavitation/osteomyelitis).

Any input is welcome.

Thanks

Yeah, Nanonug seems to have deserted us. I haven't read anything about elevated E2 levels. Here's an article about mast cells selectively releasing D2 which can then be treated with aspirin. Because aspirin can cause mast cell degranulation, you have to proceed carefully starting with tiny doses. But again, that's for D2. This is probably something your doctor is going to have to research for you because E2 might not even be released by mast cells for all I know. Sorry I can't be of more help...

 

[MNC]

Thanks Camas.

They are super idiots at this lab. They made the two tests wrong (histamine instead of methyl-histamine and E2 instead of D2). And this is the lab of this private clinic of my private insurance... I'm sure my doctor will be very angry and will ask me to repeat it all.

The questions is if they made the mistake in the test or in the name. Maybe it is actually the D2 test but typed E2.

If this was D2, then what?

I did all of this following naniung and now he is gone. I hope he is OK and didn't disappear for a serious matter, but I am totally lost now that I have this promising results. My doc knows nothing.

Who else is knowledgeable of this MCAS thing?

 

[antherder]

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.

Do you know where the oranges you've eaten are grown? I ask because I worked in a fruit shop when I was a teenager and most customers didn't like the look of the homegrown oranges as they often had yellow/green discolouration on them. They bought the imported oranges that looked...well...orange, instead. The ones that were injected with a dye to make them look pretty. Just a theory, but maybe oranges are sprayed with something or injected with something that other citrus aren't. I don't know if it is just the skins that are dyed, or the insides too. The irony is that the icky looking ones tasted heaps better, the green was just spare chlorophyll the plant decided to biff back into the fruit.

I've had extreme reactions to granny smith apples. I know they have high levels of salicylates, but they are sometimes also sprayed with something, to make them keep longer in storage.

 

[antherder]

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

I wonder if that's something to do with the function of the salicylate content in a plant. I read that salicylates are a plant's natural pesticide, designed to make anyone eating them, bugs and humans alike, feel sick, which is why salicylate levels are higher in unripe fruit, and in the skin of the fruit. Does anyone know more about this?

 

[dannybex]

It's my understanding that the vast majority of people can process natural salicylates (and even unnatural ones) if their methylation and especially their transsulfuration pathways are working well. Perhaps eating a high salicylate diet and/or foods for a long period of time might deplete the nutrients, etc., needed for proper transsulfuration.

Still trying to get a handle on this after 5+ years of dealing with salicylate (hyper) sensitivity.

 

[triffid113]

Hi X,

Nice to see you. So sorry to hear about your difficulties with Levafloxin and montelukast. I didn't do at all well on Singulair either. More liver than seizure problems. That's the problem I'm running into with most of the meds -- my P450 pathway issues. I think that's why I do well on the Zyrtec because it bypasses that pathway. I see that Dr. Theo is working on a methylated form of luteolin that I'm hoping might also be easier to tolerate than his current mast cell supplements.

I took your advice on taking 5mg pf Zytrec at a time as needed and that works quite well. I'm still sipping away on the yukky liquid children's formula made by Kirkland. I've had little to no paresthesia and what I call my 'crushing attacks' (probably seizures, as you pointed out) since beginning the Zrytec. I don't understand why an antihistamine would help neurological problems, but I'm sure happy that it does.

I'm also having some luck with the low-histamine diet. My stomach no longer hurts, and my flushing and burning symptoms seem to be even more improved than they were on the Zyrtec. Now if something would just help my muscle weakness -- still my worst symptom, by far.

Sorry to hear you are still struggling with the throat swelling. I know how damned aggravating and scary that can be.

Does anyone know if stomach pain is related to allergy? I seem to have had stomach burning this winter as well concurrent with allergy. I do not mean burning as in pain but certainly as enough discomfort to make sleeping difficult.

 

[fozzaw]

Does anyone know if stomach pain is related to allergy? I seem to have had stomach burning this winter as well concurrent with allergy. I do not mean burning as in pain but certainly as enough discomfort to make sleeping difficult.

histamine increases stomach acid

 

[triffid113]

histamine increases stomach acid

Well that's interesting. It's so confusing to be me. I have high histamine (the most terrible allergies) and low stom,ach acid. But occasionally (not very often) stomach pain. Which is confusing too because it could be angina.

 

[fozzaw]

Well that's interesting. It's so confusing to be me. I have high histamine (the most terrible allergies) and low stom,ach acid. But occasionally (not very often) stomach pain. Which is confusing too because it could be angina.

I have the same issue with low stomach acid and high histamine. If something increases stomach acid suddenly, I will have various reflux pains, but the stomach lining seems to get used to it over a few days, unless something crazy happens (e.g. magnesium malate would slowly trigger gastritis over three days that prevented me from eating or sleeping, and last summer the elevated histamine from a multi-day mold exposure did something less severe).

 

[nanonug]

I have high histamine (the most terrible allergies) and low stom,ach acid. But occasionally (not very often) stomach pain.

Have you been tested for H. pylori infection?

 

[triffid113]

No, but...I used to have one ong time ago...felt like an ulcer and I coexisted with it by drinking 1 glass of whole milk / day (was enough to coat my stomach and evade symptoms). When I discovered ulcers are caused by h. pylori I bought olive leaf extract, oreganol, and colloidal silver and killed it. that was 35 years ago. this is only a recent thing relating to winter allergy. I am not really concerned about the occasional stomach discomfort - does not feel like ulcer. It does keep me from dropping off to sleep readily though. I am more concerned by nocturia, hypothyroid, and high bp right now. I am thinking despite yes being hypothyroid which affects kidney, but still it FEELS like I have a UTI (and taking thyroid hormone did not help), so I am wondering of daily d-mannose just takes enough bacteria outta you to prevent detection of UTI, but not enough to get rid of it. I also wonder f I was taking too low a dose. I ordered a d-ammose cranberry supplement, but also K2 and natto for my bp.
gotta go

 

[nanonug]

When I discovered ulcers are caused by h. pylori I bought olive leaf extract, oreganol, and colloidal silver and killed it. that was 35 years ago.

Speaking from personal experience here, I'd be very surprised if you actually got rid of H. pylori without heavy duty antibiotics. Note that ulcers are not a requirement - H. pylori is perfectly happy to give gastritis without putting gaping holes in your stomach and duodenum.

I am more concerned by nocturia, hypothyroid, and high bp right now.

Do you pee a lot when you wake up at night or just wake up because of the discomfort? Hypothyroidism is not supposed to cause nocturia, hyperthyroidism is.

I ordered a d-ammose cranberry supplement, but also K2 and natto for my bp. gotta go

Have you done an simple urinalysis? If there is an ongoing infection, this test would most likely tell you. In any case, and for an E. coli-driven UTI, you cannot go wrong with d-mannose. However, if it is being caused by a different organism, I don't think the d-mannose would help that much.

 

[MNC]

So I went to my GP and he said that I have two things out of range, but there is a big confusion.

On one hand, where it was suppoused to be methylhistamine, they returned something called histamine/creatinine, and it is very high and out of range.

On the other hand, the Prostaglandine E2, which was suppoused to be D2 but there is no lab in Madrid that performs that D2 test, only E2, and it is very out of range.

So he advised me to go to a well reputated and veteran allergy specialist and I will go tomorrow evening, but I bet he won't know much of this either.

Let's see what he says, but I feel stupid with these symptoms matching these tests and nobody knowing what I should do about it. I already asked 3 doctors and they don't know what I should do or what it means. Only that it is an inflammation indicator, but also cancer and tumours or bone marrow disease...

 

[nanonug]

On one hand, where it was suppoused to be methylhistamine, they returned something called histamine/creatinine, and it is very high and out of range.

Well, that suggests to me a (possibly genetic) screw up in the catabolism of histamine. Usually, histamine gets quickly degraded. If you are peeing that much histamine, you've got to have a geneticist look into the issue.

Good luck!

 

[camas]

MNC I didn't realize you were in Spain! Dr. Luis Escribano in Toledo is one of the world's leading mast cell researchers and is supposed to be opening a clinic in Madrid this spring. I've read some posts from the Low Histamine Chef who was recently diagnosed with MCAS by his team. I'm sure if you contacted her, she would be happy to tell you more and give you contact information. She participates in the holistic masto group on facebook and is very helpful.

 

[MNC]

MNC I didn't realize you were in Spain! Dr. Luis Escribano in Toledo is one of the world's leading mast cell researchers and is supposed to be opening a clinic in Madrid this spring. I've read some posts from the Low Histamine Chef who was recently diagnosed with MCAS by his team. I'm sure if you contacted her, she would be happy to tell you more and give you contact information. She participates in the holistic masto group on facebook and is very helpful.

Thanks camas. I spoke with Dr.Escribano on the phone a couple of years ago and he told me that for my symptoms I could have mastocytosis, but he needed to see me in person and I should go to Toledo. It is just 70 km away but I can't go that far. So I spoke with a doctor of his team and she told me to send my tests by email. I did and she said I had no mastocytosis, althoug she suggested that I asked my Internist to contact her for a trial of cromoglycate. I said so to my Internist and she kind of ignored me so I didn't want to insist because she is a jewel to me (believes in CFS and helps a lot to many of us here) and didn't want to bother her.

I will call them at Toledo to ask about this clinic in Madrid, but I guess it will be private and very expensive. I have a private medical insurance and social security, both very good and helpful, so I need very clear reasons to spend extra money in private doctors. So far, all the money I spent in private medicine has been useless and I truly regret it.

But I will certainly contact Escribano again amd this Low Histamine Chef. Now that I have these tests it may be a different story and something to definetely check in deep.

Thanks a lot.

 

[camas]

MNC I hope they will be willing to look over your latest tests and help you with a diagnosis. If it is Mastocytosis or MCAS, at least it gives you a direction for treatment. To my doctor's credit, he has been able to switch gears on my treatment and has prescribed the few mast cell drugs that are not available over-the-counter. I would hope that your internist would be the same. Please keep us posted!

 

[MNC]

Sure I will. I am reading the story of this girl (histamine chef) and it could be mine. However this Dr.Matito who treated her in Toledo from Escribano's team is exactly the same that told me I didn't have masto. In any case maybe they were not aware of MCAS by then. I even got quite angry at Dr.Matito when I begged her to prescribe me some tests and she denied. I told her that there had to be a reason for my hyperreactivity, chronic inflammation, etc, in the classic organs (respiratory and digestive mainly) but she just said I had no mastocytosis and good bye. So, let's see...