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(hyper)eosinophilia and Mast cell activation

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Thinktank, Jul 17, 2013.

  1. physicsstudent13

    physicsstudent13 Senior Member

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    I would definitely get many opinions especially with cancer. I would minimize your medications with liver damage. A liver specialist told me that sam-E and NAC, milk thistle, vitamin E may help
  2. Thinktank

    Thinktank Senior Member

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    H
    Thanks for your input but unfortunately it's not as easy as just taking a few supplements that might help the liver, especially in my very complex case with multiple mutations in the CYP450 pathway.

    It's not certain yet if i have liver damage although i have unspecific hepatosplenomegaly The MRI, CT and PET scan radiologist thinks I have innumerable small lesions that look like benign cysts also called "von meyenburg complex". My Liver values are excellent by the way.
    I believe the lesions are not lesions at all but a buildup of calcified material causing all sorts of liver-related problems that conventional medicine has no answer for.
    I have been passing these small orange crystals in my stool for years now and in size these resemble the findings on the MRI and CT scans.
    I'm going to do a few liver flushes to see if anything comes out.
  3. physicsstudent13

    physicsstudent13 Senior Member

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    I'm curious if anything can be done for asthma- I cannot exhale after being on 6 weeks of azithromycin (some free pulmonologist gave me the drugs) and take singulair for asthma which is a leukotriene mediator and helps my chest tightness.

    that's the hidden problem with liver damage, you can have normal AST ALT but a damaged liver from cirrhosis or other liver diseases.... sam-E has been shown to be helpful in some studies in possible liver repair. I've been taking it for a couple of weeks at 1.4g/day and have only had a little nausea. there's a new scan called elastography that may be able to detect liver disease.
    you should see a GI specialist for the orange crystals, but it seems like not the most pressing issue unless you have serious bowel disease. a colonoscopy can remove pre cancerous polyps
  4. Thinktank

    Thinktank Senior Member

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    There are many causes that can lead to "asthma". I've had asthma and bronchitis myself when i was young. All those steroids and antibiotics i received have completely messed up my whole system, leading toall kinds of chronic symptoms.

    I don't have cirrhosis or FLD or anything else. I did a fibroscan and the elasticity of my liver is excellent.
    I tried SAM-e in the past. It improves my mood but i don't think it does much just on itself. It might be something nice to take with a more sophisticated methylation protocol, depending on genetic testing and labwork on methylation markers.

    I've seen many specialists over the last 10 years, regular conventional GI docs are a complete waste of time. :) The only reason i still visit them is for checkups like colonoscopies, endoscopies etc. I'm totally done with conventional treatment, they have no idea how to treat chronic diseases
    In fact the liver issue may be important if it's impairing functions. The liver is the masterorgan and problems within it can lead to a vicious cycle masking all kinds of chronic diseases.
  5. physicsstudent13

    physicsstudent13 Senior Member

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    yeah I took too much amycin and prednisone (may have given me diabetes) and wasted a lot of time on GI doctors with my IBS cramping/exhaustion, better to see hepatologists and not drink alcohol. sam-E may produce melatonin, epinepherine and myelin which is helpful for my sleep disorders.

    I had some chronic cognition problems that were cured by NAC and choline.
    I'm not sure if the sam-E, choline and milk thistle, vitamin E are helping me after the damage after tracheotomy surgery.
  6. camas

    camas Senior Member

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    It's been awhile, but I believe it was just a standard dosage where you taper off over 10 days. I hope it goes quickly and easily for you!
  7. Thinktank

    Thinktank Senior Member

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    @ Camas, i'm now tapering off prednisone after a heated discussion with the ignorant GI doc. They want to label me with Crohn' but i'm really not sure if that's the case, it just doesn't correlate with all of my symptoms and diagnostic findings.

    I've also received the updated bone marrow pathology report

    The pathologist decided to include giemsa, TB and tryptase stains just to be sure which i'm really happy about.
    Stains for CD2 and CD25 expression are being done this week.

    Things look good so far to rule out mastocytosis.... but i'm sure my mast cells are behaving badly in some parts of my body. The very unspecific enteritis, enlarged liver with innumerable lesions, enlarged spleen and so many inflammatory symptoms can only lead to some form of MCAS.

    I've also seen an immunologist/allergist for some extra blood and urine tests like histamine, n-methylhistamine, PGD2 etc. but he had no clue what i was talking about. Conventional doctors are better renamed to pharmaceutical representatives with a god-complex.

    I'm going to see dr. Meirleir in Belgium soon and a few other CFS docs. In the meanwhile i'd also like to do a full checkup for MCAS while i'm there. By full checkup i mean ALL the mastocytosis / MCAS / histamine intolerance testing done at once.
    Intestinal biopsies from colon, ileum and jejenum, biopsy from liver and spleen, biopsy from skin, urinary and blood markers.
    If anyone knows of a MCAS specialist or team in Europe then then please let me know!
  8. camas

    camas Senior Member

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    Thinktank

    My doctors wanted to argue with me about the prednisone too, but I felt so much better when I was finally able to taper off. Nobody knows your body better than you.

    So good to hear that you are clear of lymphoma and mastocytotis. You are right that it still doesn't rule out MCAS though. Dr. Afrin does mention his patients having enlarged spleens. I believe that Yasmina Ykelenstam who runs the website www.thelowhistaminechef.com mentioned being diagnosed with MCAS by a team of specialists in Europe, but I'm not sure who they were. You could probably contact her through her website or facebook page for more info. It is hard to find doctors who are knowledgeable because it's a relatively new diagnosis and most have never heard of it.

    I wish you continued luck with the tapering of the prednisone and in finding an MCAS specialist. Hang in there. We're pulling for you!
  9. camas

    camas Senior Member

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    @Thinktank

    The system won't let me edit my post above, but wanted to let you know that on Yasmina's facebook page she says she was diagnosed with MCAS by Dr. Matita (under Dr Luis Escribano) in Toledo, Spain.
  10. Thinktank

    Thinktank Senior Member

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    camas,

    Down on 20mg prednisone now and starting to feel a bit better. The evil drug has messed up my adrenals now so i have to start incorporating a way to naturally boost my cortisol and DHEA when i;m completely tapered off.

    Yes Dr. Afrin and a few others mention an enlarged spleen and liver as a common symptom.
    Too bad Dr. Afrin has stopped diagnosing mastocytosis / MCAS patients....

    I'm known with thelowhistaminechef, i really like her work and her symptoms almost mirror mine. I'll send her a message sometime this week.

    So far i know it's not really something "new". Most people are just being misdiagnosed time after time (especially with IBS-D) or MCAS is not being known to the specialist in question. I read a good explanation about it somewhere but fail to recall it....

    I've sent dr. Escribano an email and hope to hear from him soon.

    Thanks again for your support Camas. I'm totally brainfogged right now so what are you dianosed with? Masto / MCAS or still being undiagnosed?
  11. camas

    camas Senior Member

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    Thinktank

    Yeah, MCAS as a diagnosis is fairly new, but the disease itself has probably been around for a long, long time. I hadn't heard that Dr. Afrin is no longer diagnosing MCAS and Masto patients. That's a terrible shame.

    A dermatologist gave me a clinical diagnosis of TMEP Mastocytosis last year based on my many skin lesions and dermographism/darier's sign. The biopsies were negative for anything, but he said that's not unusual and definitely points to TMEP. I've lost count of the number of doctors who looked at my skin over the last 30 years and just shrugged and discounted it. Now my PCP closely examines my skin every time I see him. :)

    My tryptase was under 20, so it's looking like MCAS. My doctor and I haven't pursued further testing because all the symptoms fit and I am responding (somewhat) to treatment and getting additional testing done correctly is difficult. I've been disabled for over 25 years and have accumulated many diagnoses (CFS, FM, MCS, IC, OI etc), and this finally explains them all.

    Good to hear the tapering of the prednisone is going okay. Hope you can get in to see Dr. Escribano soon. I admire your persistence in getting to the bottom of things!
  12. Thinktank

    Thinktank Senior Member

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    Little update. CD2 and CD25 on bone marrow showed no significance, so for now i'm clear of systemic mastocytosis!
    That doesn't mean i don't have a mast cell problem though but the doctors are too incompetent to understand that.... So more tests to be done soon by real specialists.

    I just got a reply from Dr. Escribano from Spain and he seems to be interested in helping me. I'm also planning to go visit dr. Theo in the USA, mainly because of his expertise in inflammatory gut and brain problems.
    I really want to rule out MCAS or anything related to it.

    I also got some positive news. My inflammatory bowel disease seems to be calming down. I've gained 5kg in 2 weeks and don't react to food as i did before. This all happened since stopping all the prescription meds for my IBD (except for prednisone which i have to taper off slowly) and introducing a more "functional" way of healing.

    I've added a few supplements and went low histamine / avoiding MCAS triggers.

    - DGL (Deglycyrrhizinated licorice, this has cured my stomach ulcers before and i believe it's now also having a positive effect on my small intestine. A lotion with licorice also does wonders for my sensitive skin).
    - Bovine colostrum has been giving me a lot more energy and i've been able to breathe normally since the second day of using it. It's definitely doing something to my immune system and leaky gut.
    - I've reintroduced VSL#3 probiotics, 450 billion count. I believe this has helped me to get a better formed stool and reducing the inflammation in the colon. I'm only worried about one or two strains that might increase histamine.
    - Klonopin, i'm mainly taking this because i'm still on prednisone and pred gives me insomnia. A very nice side effect of this drug is i feel less brain fogged and i'm a lot calmer during the day. I take 2mg before bed.

    The bad news is the prednisone has completely deregulated my endocrine system. To be sure i tested my cortisol and DHEA and surprise surprise, both extremely low.... bye libido. None of the doctors warned me about it so now i have a new problem to deal with, how to get my adrenal hormones back up as soon as possible to avoid further (neuro)endocrine complications. They told me it can take 6 months to 1 year...

    Sorry for this rant, just having roidrage and needed to get this off my chest. I'll probably restructure my message tomorrow haha.
    camas likes this.
  13. Asklipia

    Asklipia Senior Member

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    @Thinkthank
    If you are in Bangkok, you might have been having foot massage regularly.
    Please consider that all massage ladies use in their oil a special mix that they add so as not to feel pain (they are doing a painful job, even if this does not show in their smile) and so as to keep the customers happy.
    There is a lot of cortisone in this AND also phenylbutazone "bute".
    Just cortisone was a thing of the past. This "bute" is extremely harmful (one of the reasons why horse meat has been banned). Both are deadly in fact for your blood cells.
    Rich Thais have their own oil and have massage at home.
    I used to bring my own oil for massage, and realized that the girl would ALWAYS add something on the sly, even though I had forbidden it. They cannot stand the job without it. And when they did not, the experience was not in any way special for me!
    One of the secrets behind the attractions of Bangkok.
    It used to be opium in the food in HongKong. Anything to keep the customer hooked!

    It took me a few months before it got better.
    If you Google the consequences of cortisone + phenylbutazone poisoning, you might find the cause of some of your symptoms.
    I hope this helps.
    Best wishes,
    Asklipia
    Thinktank likes this.
  14. Thinktank

    Thinktank Senior Member

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    Asklipia, thanks for the warning. I'll make sure i'll take my own oils with me with the next massage. My girlfriend has a whole bunch of them for skincare so i'll ask her to mix up something nice, it was something i was already planning to do because i have found a mix of anti-inflammatory oils that work very well for me.
    But i'm actually not too worried because the massage places for thai massage, oil massage, reflexology and aroma therapy i visit are reputable and on the higher end. I don't think such places will mess around with cortisone or phenylbutazone but i will definitely ask them if they have ever added something to the mix.

    Do you live in Bangkok as well?
  15. Asklipia

    Asklipia Senior Member

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    I have lived in Bangkok for a while, about 6 months a year for more than 10 years, and now I have left, for several reasons.
    However, when I was there, my health at the beginning seemed to improve (no more pain, feeling better overall) but in fact did not improve at all. Blood tests were more and more catastrophic. Until they asked for the same tests you hve been undergoing.
    Nobody there seemed to understand what was going on. In Europe I did not get help either.
    This is because my lifestyle had been quite unique. Nowhere did they see patients who had my history.
    Do not believe for one minute that high-end massage places are OK. I was going to the most expensive places. And to the most expensive medical facilities.
    The truth is : your health is in your own hands.

    In Bangkok you are being drugged in many ways. Not only the essential oils to relax you (they all are concentrated in the liver, that only does what it can - one drop of the essential oils that you think will relax you will kill a cat), but also the other drugs there that make it the capital of pleasure that it is.

    All Asiatic towns used to preserve food with boric acid. Not expensive, kills most of the yeasts of a tropical climate, AND gives a testosterone high : prostitution towns, where males feel better and are ready to service armies of prostitutes because they can. They think it is because the women make them feel netter, maybe it is part of it, but the FOOD makes them feel better, the boric acid part.
    Because there are now economic interests that want to sell Western preservatives and chemicals, boric acid is being forbidden more and more. Some politicians make money on the import of lets say PAA (Paracetic Acid) and other stuff.
    The boric acid induced testosterone high is getting slowly phased out and the body does not have this artificial defense anymore.

    Apart from that there is omnipresent use of more and more phomchurut (Ajinomoto-MSG). This destroys the HPA axis. You will notice that the olderThai people are nowhere to be seen. This is because they are dead. There used to be a nice supply of young healthy Isan people to come up for work. Now they too have had access to the dreaded stimulant in their youth and are not fit to work after a few years. Air rage is what you get when you eat airplane flood (forbidden to the pilots who get another type of tray!). Air rage is what is happening more and more in Thailand.

    The truth is : there is another side to that Land of Smiles.
    I was hooked. Now I know, I am not anymore.
    And I am very happy somewhere else, in the luxury of a simple and real life.
    Good luck and best wishes,
    Asklipia
  16. Thinktank

    Thinktank Senior Member

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    Asklipia, 10 years is quite a while to build up a nice toxic load, especially here in Bangkok. Maybe that's why there's a detox clinic on each street corner?

    Never heard of the boric acid thing.

    About the older Thai people, most Thais move back to their rural hometown after a certain age. They just come to BKK to work. I know of an isaan lady who's almost 100 years old and is still in top shape. She never moved out of the rural part of isaan, grows, raises and scavenges her own food organic like most of the other villagers. Most of them are in good shape. Too bad some of the farmers in the area now use a heavy load of pesticides.
    But yeah old Bangkokians have a heavy toxic burden and combine that with a more western approach of life in the last decades like western food which is not suitable for Asians in my opinion.

    Indeed there's another side to the land of smiles, but i still love it. Maybe things will change, you never know.
  17. Thinktank

    Thinktank Senior Member

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    Biopsy of the colon stained with giemsa blue showed no abnormalities in mast cells.....

    I'm still going to do the full MCAS testing but i consider carcinoid syndrome now as well... Especially with all the unspecific and innumerable lesions in my liver.
    The "attacks" have increased in the last week and i've lost more weight.

    I'm a total mess bth mentally and physically at the moment, all the diagnostics are so unspecific and my health keeps worsening.
  18. physicsstudent13

    physicsstudent13 Senior Member

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    I take sam-E and was taking NAC for my liver. sam-E may help liver repair but it's only being studied in experimental studies
  19. camas

    camas Senior Member

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    So sorry to hear that you are feeling worse, Thinktank. I was just thinking of coming on and asking how the prednisone taper was going. I hope they can get to the bottom of things soon. Sending positive thoughts your way...
  20. physicsstudent13

    physicsstudent13 Senior Member

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    I probably wouldn't take prednisone since it may damage the liver. could NAC, reduced glutathione, sam-E, milk thistle help your liver? 3 hepatologists told me not to take anything and one said supplements are ok

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