mitochondria, mercury, methylation, mycoplasma

[stridor]

@justy
I didn't get a "flavour" of masto. My Dr just said that he could help and put me on an H1 and H2 antagonist and told me to continue with quercetin and that he would bolster this with Singulair.

My Dr is kind of a "Dr House" character. He has been with me since my early days with mercury toxicity and helped me with the thyroid and adrenal collapse. He also helped me get the B12 injections and supported me with other methylation things. Treated me for the mycoplasma and has addressed other weird symptoms like ferritin of 9 and Hgb (and hematocrit) above normal.

I think that the dx is off the top of his head. I don't have erythema pigmentosa. I have hives and rashes that are getting worse. I am starting to get some systemic stuff like going pale and unwell with a drop in BP. I am on 3 antihypertensives and more used to high. I have eczema that breaks out when I eat the wrong thing and this is usually but not always linked to increased (painful) folliculitis and psoriasis of the scalp.

Without a colon my gut works a bit differently. My sense is that I am not sensitive to nearly everything that I eat. I do react to some, but otherwise the bacteria in my gut are histamine factories and are just stringing together amino acids to annoy me

I have always had the dermographia, gluten as a teen but untreated until 10 years ago. The rest of this is all post surgery.

I have looked at the mastocytosis sites and I am no where near as sick as some of those people. My main concern stems from the sense that I am getting worse. This is perhaps in part due to not being able to take the H1 and H2 because they interfere with the prostate. I save them for emergencies. I can take them for one dose without serious urine retention. My Dr frowns about this. Nothing I can do about it...a guy's gotta pee once in a while

I am having some initial (+) positive response to Histame and have ordered a DAOsin that is a bit more affordable. I am not sure with the cost whether there is a long-term treatment here. It would pretty much require my gut to heal enough so that I could get off of some of the other things I take.

For people's information amazon.ca wants $72 American for a bottle of Histame x 30 caps and I went through a bottle in 6 days.

I will look at MCAS and see if I like the fit better.

@ahmo
Not to worry, I am still way ahead of where I started out. I figured out the other and this will have an answer too. I will look at your blog. B2 has been a long-standing issue for me. I am back up to 200 mg a day. I just don't absorb some things well. I need to consider transdermal...that's "you" I think (?)

 

[stridor]

yes, @justy I like the MCAS fit a lot better. Seems like there is a large overlap in treatments and it could be that my Dr doesn't differentiate between the two. Michigan is a jaunt. I am in Northern Ontario. It looks like Canada has an active Mastocytosis org and any Dr who they recommend will be able to help me.
Worse comes to worse, I may have to get the prostate sorted out so that I can take antihistamines. Thanks for your help.

 

[justy]

yes, @justy I like the MCAS fit a lot better. Seems like there is a large overlap in treatments and it could be that my Dr doesn't differentiate between the two. Michigan is a jaunt. I am in Northern Ontario. It looks like Canada has an active Mastocytosis org and any Dr who they recommend will be able to help me.
Worse comes to worse, I may have to get the prostate sorted out so that I can take antihistamines. Thanks for your help.

I think without proper testing your Dr can't tell if it is Masto or MCAS. You would need Tryptase testing, 24 hr chilled urine collection for histamines and if these are high you would need a bone marrow biopsy to rule out Masto. With a normal tryptase and no urticarial pigmentosa its unlikely to be Mastocytosis - although still possible. In MCAS all tests can be normal.

That's a lot of Daosin you took in 6 days! I think you are only supposed to take max 6 in a day, but I agree it is very expensive, I use a 60 bottle in a month - that's £40 a month on one supplement!

In what way do the antihistamines interfere with prostate? did you say you cant pee? antihistamines can be VERY dehydrating for some - I take two different types, twice a day and have to drink gallons of water to not feel dry and groggy. I would like to eventually get off them and stabilise some other way - but I am still on the journey of getting on meds and stabilising with them and working out which symptoms are MCAS as opposed to ME, and which ones I can heal with MCAS meds. Just getting on the meds has been a struggle for me, as I react to so many things.

 

[stridor]

@justy
It wasn't DAOsin - it was Histame and the dose is less than half what I will be getting in the DAOsin that I ordered. The bottle said to take one to two caps with every meal and I took two. I would have taken a different approach if I remembered how much it cost me.

I have not been at it long enough to find my lowest effective dose and I I have a long road ahead before I can say. "I don't need to take anything with these foods, but with those foods I need to take DAO".

I am still new to this....not the symptoms, but to the notion that I can't ignore them any longer and I need to do something about it. I am very early onto a learning curve that I should have started ages ago. I am road weary. My health has been front and center for a long time. 146,000+ pills since 2007.

Maybe you know. From what I can see the treatment for Masto and MCAS is pretty much the same (?) I don't need another diagnosis. Just a treatment is fine with me. Should I care about this? I mean other than academically?

I have an enlarged prostate which is not rare in guys my age. Antihistamines aggravate it and can leave me just standing at the toilet wondering if I have to head into Emerg for a catheter. Things just lock up. As well, I can't empty the bladder and that gets me up 4 or 5 times a night. I'll watch the hydration thing.

I can get by on one dose of antihistamines and I save them for when the rashes come. I hear you about the meds. I am sensitive to corn and it is in my hydrocortisone that I take 5 times a day. I had forgotten about this as I had other fish to fry, but my pharmacist and I need to chat.

Do you have any problem with the brassicas like broccoli and cabbage. for example? Thanks for your insight. brad

 

[Sam7777]

Well admittedly the differences in diagnoses for masto and mcas and histamine intolerance are over my head. However I evidently had histamine issues for many years and only noticed in late october when I was reading around and observing my friends anti histamine recipes ( this poor person has at least ten amalgam).

For me histamines are transient and difficult to anticipate. What has helped is peppermint oil and histamine chefs site. But most of all I think kefir. This is a brand with several dozen strains and I use goat and organic cow milk. Regular cheese just makes my digestion and histamine much worse. I absolutely suspect gut issues.

 

[Sam7777]

Which brings me to my next suspiscion : bile acid metabolism. When my histamine flairs so does my liver pain and incomplete digestion and IBS. Kefir arrests this. There is a seventy page thread on the bile supplement TUDCA and I do believe its an aspect of metabolism that affects methylation and histamine. The guy who took tudca and n actyl glucosamine and choline alleviated severe histamine problems.

I am beginning to suspect I have low choline as well that may be making histamine worse.

 

[justy]

Maybe you know. From what I can see the treatment for Masto and MCAS is pretty much the same (?) I don't need another diagnosis. Just a treatment is fine with me. Should I care about this? I mean other than academically?

Yes this is a good point - lots of people feel it doesn't matter and to just treat as the treatment is more or less the same, although if you have aggressive systemic Masto you can be offered immune supressing drugs - I think you would know if you had this - Anaphylaxis is common and everyday occurrence in this presentation, although asusual with this complex disease, not having anaphylaxis does not rule it out.

Does it matter if you don't have a distinct diagnosis? yes and no. If you do then insurance should pay for the correct treatments 9some of the drugs are very expensive). If you have Mastocytosis, as opposed to MCAS then you can scrub the M.E/CFS diagnosis (the presentations can be VERY similar), which might be a good thing. If you don't have Masto but have MCAS, then this usually geos along side either/and/or Hypermobile EDS, and chronic bacterial infections like Lyme and POTS. MCAS is usually triggered by something - the immune system get trigger happy in a way.

In masto the mast cells actually proliferate - the more you degranulate the more they proliferate, the sicker you get, so controlling it is very important. In MCAS, the mast cells don't proliferate, they just degranulate inappropriately - this can escalate, but wont lead to irreversibly large numbers of mast cells, which can infiltrate organs, but can lead to out of control reactions.

As you so rightly say the treatment is pretty much identical.

Do you have any problem with the brassicas like broccoli and cabbage. for example?

 

[Violeta]

@stridor , there are a few things that you mention that indicate that you might want to consider borax. I'll be back later with links.

If you like to search, here are some things that came up when I was looking into mast cell issues.

mcas + copper
mcas + pathogen
mcas + Dr. Theo Theoharides
mast cell degranulation + LPS
copper + prostate
borax + prostate

 

[stridor]

@Sam7777 I can't have dairy but want to make coconut kefir later this year. I think that my gallbladder is fine. I do have a bit of undigested oil but I don't know whether this is unusual with my anatomy. Stools are dark. The oil started when I increased fat intake to control weight loss.
@justy Wow, you certainly are a lot further along on the learning curve than me. FYI - I've already started to refer to my symptoms as MCAS.
@Violeta Copper and manganese have been mentioned. I am going to try to get my Dr to order the tests I need. Not as easy as it should be. Thanks for the suggested searches. I'll take a look.

 

[Violeta]

The copper may not show up in a test because it looks as if it gets held up in organs.

 

[stridor]

According to this small polling of people with chronic hives, 70% are on the FM/CFS continuum. Begs the question whether after other symptoms with possible histamine causes are factored in whether the number would be higher.

Not a huge leap. Histamine is part of the immune system and our immune systems are sub-par.

http://www.prohealth.com/library/showarticle.cfm?libid=14799

 

[knackers323]

@stridor hi mate when you say your taking normal vitamin c, is that ascorbic acid your talking about?

how do you make the liposomal stuff?

did you have PCR testing for the mycoplasma?

thanks

 

[stridor]

@knackers323
Hi back.Most of the time that I was ill I made liposomal Vit C. There is a thread on this site with my recipe. It is probably called something profound like "Liposomal Vitamin C Recipe" or something like that.
I have been on and off of it since then. It is not as crucial now that I am this far along in my recovery.
Yes, it was PCR testing I guess. It reported back on mycoplasma DNA.

I am now trying to fix the damage that 8 months of antibiotics did to my poor gut. I seem to have made a big step. (I am adding this just in case anyone is following this thread and it is not intended for you necessarily).

I have not had any hives for 3 days. They threatened in the night but settled. My histamine system is still on alert and my skin gets red and there is intermittent light rash from time to time but no outbreaks and no hives.

3 variables:
a) I took off the medic alert bracelet where a permanent hive/rash thing had set up. The wrist cleared within 36 hours and at the same time systemically hives and rashes improved.

b) Coincides with Humaworm treatment. I started this anti-parasite treatment to deal with any parasites and to kill off some of the bacteria. The Dr at Humaworm seemed to understand what I was trying to do and I think that it is not an original idea. I haven't been tested yet but I have SIBO.

I don't have an ileocecal valve to keep lower gut bacteria out of the small intestine. My plan was to kill off some of them and then go in with coconut kefir to try to acidify the small intestine and force bacteria further down the pipe. I had some mild Herx symptoms on the first day the hives failed to make their appearance. For the record, I was getting outbreaks 4-5 times a day.

c) I had a couple of hives every day when on vacation but it was a huge and sustained improvement x 7 days. The morning after waking up in this house when I returned, I had one of my worst morning attacks yet. 3 days ago my wife did some painting and the windows have been open. This coincides with improvement as well.

I think I might be allergic to this house. There isn't any mold but with the best of intentions I replaced the carpeting with hardwood throughout. It is the expensive "engineered" type and I am wondering about VOC. This summer I will put in an air exchanger.

If there is one thing that my recovery journey has taught me is that it could be all three of these things. I stopped looking for the "single answer" to my problems a long time ago.

 

[Violeta]

@stridor, do you happen to know if you have low neutrophil count?
And generally speaking, is there a location where your hives are more likely to appear?

 

[stridor]

@Violeta
I don't know my current count but historically I don't think there has been a problem. The hives usually happen bilaterally but not always.

Most common areas are the contact points from my underwear and appears to be mechanical. Two areas either side of my navel - over a few inches. Rib cages above the kidneys. Chest and neck. Jowl area mainly on the left side. Inner thighs crotch to knee - mostly left side. Almost never below the knees and not too often on the upper back but it does happen.

This hive thing started years ago and at that time always involved a scar on my left arm. But those ones look different - for one thing they are more raised and not as prone to being irregular in shape.

When they come the hives will also set up along any fingernail lines from scratching. A long line of angry looking red welts.

 

[Violeta]

@stridor , oh boy, that does sound annoying.

So when you scratch because they itch you get a whole new line of them.

PS: The reason I asked about neutrophils is because this morning I found this while trying to figure out something about fungal infections. This sounds like what I get under the skin on my lips when I take thiamine or eat something too high in thiamine. It doesn't sound like what you're talking about though.

Oh, and I had pretty bad neutropenia when I was painting for an extended period of time, back when they used to put mercury in paint.

https://en.wikipedia.org/wiki/Bullous_pemphigoid

Bullous pemphigoid is an acute or chronicautoimmuneskin disease, involving the formation of blisters, more appropriately known as bullae, at the space between the skin layers epidermis and dermis. It is classified as a type II hypersensitivity reaction, with the formation of anti-hemidesmosome antibodies

 

[stridor]

@Violeta

Exactly.

This is why I am so excited by the last 3 days. I may have stumbled upon something(s) that may help. The Mastocytosis/MCAS sites are concerning. People are basically sharing life-long treatment options with each other. I used to live on the other side of the fence and I want to go back.

Yes, I had dermographia and the odd hive or two now and then but I did not have the degree of problems that I have had the past few months. The 8 months treatment for mycoplasma pulled me on to this side of the fence - if there is a way back, I am determined to find it.

I think that the answer will include killing off some of the bacteria in my gut and then trying to acidify the small intestine through daily dosing of lactobaccilus .

My prostate won't let me take antihistamines and Benadryl has be linked to Alzheimers and my brain doesn't need any more encouragement

 

[Violeta]

Good for you, @stridor , I am heading in that direction, too. I just realized (again) after all these years that there's a intracellular stealth pathogen that needs to be dealt with. At least with the focus on that I won't get pulled in so many other directions.

 

[Violeta]

@stridor

Wait a minute, I just reread your post and do you mean that treating the mycoplasma put you in a worse state than before?

 

[stridor]

@Violeta
Absolutely not. I am much better than before treatment for the stealth infections (also had HHV-6).
My energy is better (3rd day in a row out in my workshop, for example The brain-fog is gone most of the time. Mood is better and I am more social.

What is worse is the histamine problem. My system was primed to go snake anyway with the colon and ileocecal valve gone but I think that 8 months of antibiotics can do anybody in. I don't tolerate probiotics well but stupidly I did try them. I knew better. Taking bacteria that are supposed to live in the colon when you don't have a colon is stupid.

The DAO is produced in the upper part of the colon and lower part of the ileum. Colon is gone and lower part of the ileum is over-run with colon bacteria. The Humaworm that I am taking kills bacteria and I am crossing my fingers that I can find a way to take it daily after the course is done.

So....only the histamine system is worse after treatment. So many things are better