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Hi! Low grade fever as MCAD symptom? (Read 5567 times)
TomTomas
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Hi! Low grade fever as MCAD symptom?
03/06/16 at 01:48:22
 
Hi guys! I'd like to share with you me story to see if anyone has maybe had similar experiences or can give some advice.

Basically my main symptom is constant low grade fever (I feel hot, tired and sick) which I've had for 10 years. I'm not extremely tired as in CFS, I associate it only with elevated temperature. What's weird is that for the first 5 years I had it ONLY in spring and summer (April-September in Poland and Austria), now it's all year round, but the sunny season is still worse for me. My guess is that prolonged sun exposure makes it worse. About 3-4 years ago I developed salicylate and histamine food intolerance, which make the low grade fevers even worse. Sticking to the diet lowers a bit the temperature, but it's still there. Stress, being hot or cold and gentle excercising and other histamine liberators (e.g. alcohol) also make it worse. When my low grade fever gets worse (e.g. from histamine in food or stress) I'd get slightly painful joints and my hands go red and dry, but that doesn't bother me much. I also tend to have yellowish stools.
I've had lots of blood tests and seen lots of doctors and everything turns out OK, apart from high IgE (tested for allergies and parasites, it's OK). Does it look like MCAD to you? My blood histamine is low (18 ng/ml) and tryptase is ok. Tested for lupus and ANA is negative.

Does anyony have similar symptoms or any advices or ideas what to look for?
I've read hundreds of posts and those low grade fevers as main symptom and exacerbation in the sunny season (spring-summer) seem very uncommon...
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Joan
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Re: Hi! Low grade fever as MCAD symptom?
Reply #1 - 03/06/16 at 19:41:48
 
It's possible you have MCAS.  Low grade fevers aren't uncommon in mast cell patients.  Do you stay super-hydrated?  There are formulas you can Google to see how much fluid intake would be recommended for your body weight.  Fluids can include water, coffee, tea, broth, juices, sodas, and other liquids, but not including alcoholic beverages.  Water and electrolyte drinks are best to start out.

So you have a high IgE but no true allergies?  Another sign of MCAS.  If there's a mast cell specialist near where you live, you might want to see that doctor for an accurate reading of your tests and a medicine plan.

Many people with SM/MCAS are sun and/or heat intolerant.  However, have you been checked for a bacterial or fungal infection?  If not, that's another possibility, and in that case, the mast cell symptoms might "cool down" if any infection were cured.

I also get inflammation and sometimes what feels like connective tissue pain. Turmeric extract capsules have helped a lot with inflammation or icing the sore places for 20 min.
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TomTomas
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Re: Hi! Low grade fever as MCAD symptom?
Reply #2 - 03/08/16 at 03:16:19
 
Hey, thanks for your reply! : )

Yup, I drink lots of water, I feel thirsty all the time.
I've been to two mastocytosis doctors in Poland, but since I don't have elevated tryptase and other masto symptoms they ruled it out. I think they don't know about mast cell related diseases, MCAD, but only deal with typical mastocytosis. Docs also say that elevated IgE (500-600) without true allergy is weird.

Yeah, I thought of this mechanism, that my mast cells may be degranulating because of some latent, mild infection. I've had lots of test, but, now that you mentioned it, I'm going to double check it, if something hasn't been omitted. When it comes to viruses I only had hiv, hbv, cmv and mono done, maybe I should check other. However, this hidden infection hypothesis doesn't work well, when taken into account that for the first couple of years I felt great in the autumn and winter and bad in spring and summer. BTW. My grandma also has elevated IgE, low grade fevers and post nasal drip for 4 years, it started after infection.

When it comes to meds I don't think there's much left. Regular antihistamines don't work for me. Ketotifen made me feel a bit better, but only for two weeks, then my body kind of accommodated and it stopped working. I double the dose and the same thing happened. I react badly to turmeric and quercetin due to histamine / salicylate intolerance.

Additionally, I found out that my B12 and folic acid are near the lower range and I try to supplement them, but only in small quantities due to the aforementioned intolerances. (There's much hype about vit. B protocols on some other forums and I want to try it out.)
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Re: Hi! Low grade fever as MCAD symptom?
Reply #3 - 03/08/16 at 09:30:40
 
Low grade fevers were one of my first symptoms.

I still get them if I'm triggered.

For me the most common trigger is environmental, something in the air in my house, scents, chemicals around me setting it off but can also be a food, medication, or drug reaction. I went scent and chemical free for my home and food life. Did an organic elimination diet. Run a hepa filter in my bedroom and get lots of fresh air. Now I rarely get the fevers and when I do it's easier to search for the culprit. I used to take antihistamines daily but I think I got dependent on them pretty quickly and was reacting to some so if my home airspace is safe and tolerable I feel best only taking meds for rescue.

Hope you feel better.
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Joan
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Re: Hi! Low grade fever as MCAD symptom?
Reply #4 - 03/12/16 at 20:36:21
 
Sometimes we have to educate our doctors.  It can be one of the only ways to gain credibility for what is happening to us.  There are professional journal articles that most doctors will believe, if they're from referreed journals.  Dr. Cem Akin, Dr. Mariana Castells  Dr. Theoharis Theoharides, Dr. Lawrence Afrin, Dr. Gerald Moulderings, and other mast cell disorder experts have published research that explains the various types of mast cell disease, signs and symptoms, and treatment recommendations.  Much is available online.  You could print some articles that are relevant to your case and give them to your doctors to read, if you think they would be open to learning.  most of the mast cell specialists in the U.S. are open to communicating with other doctors who have a patient with a suspected mast cell disease/disorder.  

Usually avoidance is one of the most effective ways for us to also avoid symptoms.  If meds aren't working well, sometimes it's because dosages are too low, and sometimes they're just not effective and sometimes there are artificial colors, binders, and preservatives that cause increase degranulations of mast cells and making it difficult for the meds to work effectively.  It is important to carry rescue medicines of you ever have anaphylactic type symptoms, such as several Epipens or other epinephrine and also H1 and H2 antihistamines, and prednisone, especially because you can be caught off-guard and deposed to a trigger almost anywhere outside your home.

I take a sublingual form of B12, and it's helped my energy level tremendously.  Most people say to take the methyl type of folic acid, as it is utilized better in the body.

A last option, which might be possible, would be to travel to somewhere in Europe or the U.S. to see a mast cell specialists. TMS may be able to refer you to someone if you contact them.

Good luck. Hope you can stay well!
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sarahkay1111
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Re: Hi! Low grade fever as MCAD symptom?
Reply #5 - 04/26/16 at 03:24:53
 
Hello,
Have you looked into dysautonomia? My cousin was just diagnosed with it, after having a fever of 101 for a month, with severe leg pain. Dysautonomia and mast cell disease go hand-in-hand. It took me 3 years to get a MCAD diagnosis, even with elevated histamine and prostaglandin levels. If you think you have MCAD, you are probably right. I had to start treating myself. Were you also tested for Lyme's disease? That can mimic some of the symptoms of MCAD. Good luck!
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