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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS is a mast cell disorder (hypothesis)

camas

Senior Member
Messages
702
Location
Oregon
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...

I can see why you'd be less than thrilled with having to approach Dr. Matito again, but something is clearly up with your tests. I sure hope someone can sort it out for you. Sending positive thoughts your way!
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
MNC, I just recalled exchanging a couple of emails with a Spanish researcher regarding histamine associated polymorphisms. Here is the email I got from her (I am sending her email address privately to you):

Dear Carlos,
Please find attached the requested reprint. As you can see in the article, there exist several genes involved in histamine homeostasis and function. Perhaps the genes and the SNPs that were tested corresponding to the HRH4 receptor are not among the most informative. I would suggest testing the genes related to histamine
synthesis and degradation. In collaboration with the University of Extremadura, we offer genetic testing and medical genetics advice thorough the company AMGenomics. You can contact the company in the email address AMG.informacion@gmail.com for further information on these services if you are interested. Best wishes, Elena García-Martín, MD
 

MNC

Messages
205
So, I'm back from this veteran allergy doctor who is also specialized in labor health. He knew absolutely nothing about MCAS, very little about Mastocytosis and didn't even know what my elevated tests mean.

The only interesting thing he said is that he was involved in the 80's in the investigation of the Bophal Disaster in India (http://en.wikipedia.org/wiki/Bhopal_disaster) and he said that among the survivors, most presented chronic symptoms of CFS, Fibromyalgia and Chemical Sensitivity just like some of her patients today, mostly women he said.

So, in his opinion, these diseases are related to toxic exposure.

I called Dr.Escribano but couldn't speak today. I must try again tomorrow or in the next days.

Cheers to all.
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Just reading through this thread after doing some research on C4a, an anaphylatoxin derived from Complement C4. After having positive tests for Lyme and co-infections, my doctor did tests for CD57 and C4a. My C4a result is extremely high (35613) while the reference range is 0 - 2830 ng/ml.

Turns out , "C4a anaphylatoxin is a mediator of local inflammatory process. It induces the contraction of smooth muscle, increases vascular permeability and causes histamine release from mast cells and basophilic leukocytes".

My doctor want's me to see a Lyme specialist. My previous diagnoses have been FM/CFS. Now it seems Lyme and co-infections are added to the list.

Funny how my rheumatologist had prescribed hydroxy-zine, an antihistamine to help with sleep. I noticed immediately how it helped my extremely painful muscles relax.

Way too much information for me to put it all together.

Great thread and great to see Nano back!
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Interesting that Hydroxyzine is mentioned as a treatment for MCAD here: http://geneticgenie.org/blog/2013/0...-chronic-illness-and-its-role-in-methylation/

Treating Mast Cell Activation

While a lot of Dr. Theoharide’s research focuses on natural substances such as Luteolin for inhibiting mast-cell activation, and while he is the medical director of Algonot, it’s important to note that he receives no compensation from this company. I think it is important to note this fact because often when one has financial ties to companies or products, their research often becomes skewed or misleading. Algonot develops a supplement for MCAD called Neuroprotek that contains the bioflavonoids Luteolin, Quercetin, and Rutin.

There are pharmaceuticals for MCAD. Hydroxyzine preparations can be quite powerful, but usually require a prescription. Anecdotally, the combination of Zantac and Zyrtec(OTC at your local pharmacy) seems to work pretty well. Zyrtec is an H1 receptor inverse agonist and Zantac is a H2-receptor antagonist. However, even though these are over the counter, do not begin these medications without consulting with a qualified healthcare practitioner first.

I also take Zyrtec when my allergies act up...
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
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.



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.



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.
Hi, there are a number of studies that show that HYPOthyroid lowers GFR. I experience this every winter now post age 50 due to cold, dry air setting off my allergies. That uses up zinc to repair the mucous membranes, which my thyroid needs, and it drives me hypo. I believe to the extent that I can arrange my environment to breath humid air it will be less a problem. I have that sort of allergy that is affected by small changes of humidity -- walking in/out of a building in winter for example. (vasomotor rhinitis).

I have recently found a study which said the piconolinate forms of zinc, copper, and chromium are significantly more absorbable than other forms. So I am switching to picolinate forms to see if that helps. Can't find the study that quickly...I can't remember what I filed it under!
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
Finally - found it! Here is the study on zinc, copper, chromium absorption - picolinate form being way better: http://www.ncbi.nlm.nih.gov/pubmed/3630857

Atleast with me personally, I agree with zinc picolinate being the more absorbable form. Had been taking zinc citrate for some time until recently switching over to the picolinate version. Zinc is known to be an aromatase inhibitor, and not to my surprise from recent blood tests, my estradiol level is on the high side. Most noticeable symptom after I started on the picolinate version is that I started wizzing like a race horse, which was not evident with comparable amounts of the citrate version. An aromatase inhibitor can help you get rid of excess fluids. So, atleast in me, must be something to the picolinate being better absorbed.

Rand
 

wastwater

Senior Member
Messages
1,271
Location
uk
I have eosinophilia comes and goes and always thought it was a clue but not sure what.Im interested to see its connected to cowdry bodies and lewy bodies I think what ever that means
 

camas

Senior Member
Messages
702
Location
Oregon
I have eosinophilia comes and goes and always thought it was a clue but not sure what.Im interested to see its connected to cowdry bodies and lewy bodies I think what ever that means

Hi wastwater,

In the article I like to in my signature, Dr. Afrin mentions eosinophilia:

Similarly patterned basophilia is seen in even fewer patients but, as
with a fairly persistent relative or absolute monocytosis or eosinophilia which cannot be
attributed to any other evident disease, can be a clue to the presence of MCAS [Mast Cell Activation Syndrome].

I have no idea what any of this means, but thought I'd share. :)
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Nanonug, I have tried 20 x's to download and print that Mast Cell Activation pdf file without success. If you or soeone already has it could you attach it for others to download. It just never completely load from the nih site. I wanted to take it to my Dr tomorrow just for her reading pleasure. I also wanted a copy to read. TIA

This is a non-exhaustive list of symptoms associated with mastocytosis and/or mast cell activation syndrome:
  • abdominal pain
  • intestinal cramping and bloating
  • diarrhea and/or constipation
  • nausea
  • non-cardiac chest pain
  • Helicobacter pylori-negative gastritis
  • malabsorption
  • oropharyngeal burning pain
  • aphthae
  • cough
  • asthma-like symptoms
  • dyspnea
  • rhinitis
  • sinusitis
  • conjunctivitis
  • difficulty in focusing
  • hepatomegaly
  • splenomegaly
  • hyperbilirubinemia
  • elevation of liver transaminases
  • hypercholesterolemia
  • lymphadenopathy
  • tachycardia
  • blood pressure irregularity (hypotension and/or hypertension)
  • syncope
  • hot flush
  • headache
  • neuropathic pain
  • polyneuropathy
  • decreased attention span
  • difficulty in concentration
  • forgetfulness
  • anxiety
  • sleeplessness
  • organic brain syndrome
  • vertigo
  • lightheadedness
  • tinnitus
  • urticaria pigmentosa
  • hives
  • efflorescences with/without pruritus
  • telangiectasia
  • flushing
  • angioedema
  • abnormal bleeding
  • muscle pain
  • osteoporosis/osteopenia
  • bone pain
  • migratory arthritis
  • interstitial cystitis
  • fatigue
  • asthenia
  • fever
  • environmental sensitivities
This list was compiled from table 3 on the freely available paper entitled: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options".

Based on symptomatology comparison, I think ME/CFS begs to be defined as a mast cell disorder.
 

camas

Senior Member
Messages
702
Location
Oregon
After reading this, this seems like what I have. As many know, I have several histamine related illnesses. Interstitial Cystitis, Endometriosis and Fibro on top of CFS. When I take allergy meds, these illnesses calm down. When I was little, my allergies were disabling. I lived on a medicine that would put me to sleep for hours. I went on allergy shots, things got better. In 1987, I went off allergy shots and got worse. I became Ill with CFS a year later. I also have Vulvodynia.

I see my CFS doc on Monday. I want to find out about this.

I have a rash due to food allergies. And, my histamine is super high.

Hi Spitfire,

Dr. Afrin's paper which I link to in my signature is one of the best resources I've found. If you'd like a printable copy of this PDF for your CFS doc, just drop me a PM with your e-mail address and I'll send it along.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Camas, thank you so much. Will bring this into my doctor. It makes so much sense....like a big GREEN light! I don't feel that way about a lot, but this resonates.
 

camas

Senior Member
Messages
702
Location
Oregon
Camas, thank you so much. Will bring this into my doctor. It makes so much sense....like a big GREEN light! I don't feel that way about a lot, but this resonates.

You're welcome, Spitfire. I felt the same way when I watched those 2010 TMS videos and saw my crazy 'spots' that no one has ever been able to diagnose (or, frankly, just dismissed). My first reaction was 'huh.' My second was 'wow'! :)
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Sherlock, I used to go to a physician who prescribed supplements. One of the first things he did was get me off of histamine foods, which I really had no problem with at the time. Then, he put me on so many supplements including niacin. I would have this niacin flush. Whatever he did made my endometriosis "stop." I had to stop them because I had a surgery where I developed a blood clot and he didn't want me on them.

I always think of the niacin and wonder, did that help histamine or make it worse. I would become exhausted from the flush and itch. My mouth would become dry. I really don't know what it was doing.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Sherlock, I used to go to a physician who prescribed supplements. One of the first things he did was get me off of histamine foods, which I really had no problem with at the time. Then, he put me on so many supplements including niacin. I would have this niacin flush. Whatever he did made my endometriosis "stop." I had to stop them because I had a surgery where I developed a blood clot and he didn't want me on them.

I always think of the niacin and wonder, did that help histamine or make it worse. I would become exhausted from the flush and itch. My mouth would become dry. I really don't know what it was doing.
I never had a problem with histamine foods, either. My guess is that they only affect people with bad gut problems.

I've read lots of accounts out in the world where people complain about the niacin flushing their faces and necks. I always flushed down to my knees. After getting sick, it's down to my ankles. Still, I kind of like the flush.

Getting the flush might use up histamine and provide some window until it gets built back up again in the mast cells.

Docs have been prescribing niacin for a long time for CVD prevention (though that might change). They alnost always suggest aspirin to reduce the flush, but aspirin doesn't work anywhere near as well as quercetin. (There's a Dr Theoharides who did a study on this,, but docs just aren't aware of it yet.)

I believe that my high histamie levels come from the MTHFR 677 SNP, which makes me not able to break down histamine very well. I think this also makes it difficut to get back to sleep when I wake up in the night, since histamine is also a neurotransmitter.

If you consider yourself to be an intense personality type, that could be related to histamine, too.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
After looking over this, there really isn't a treatment that I am not doing. I take Zyrtec everyday. On top of that, I had to take Benadryl this morning. I was hoping I would find an answer to stop this mess in a much bigger way since antihistamine's are a superficial bandaid.