Discussion in 'Lyme Disease and Co-Infections' started by Santino, Aug 26, 2016.
@Santino I'm so sorry to hear you have so few safe foods! I know there are several people on this forum who have or have had that few foods. Gratefully it is not an issue of mine.
My question is what medications do you take to help your MCAS? Have you tried any? Food coloring, air pollution (chemical and petroleum), and dust and pollens seem to be my worst offenders, but I have noticed recently that ketotifen is helping block the reaction from the petrol fumes.
Also, if you aren't on any mast cell stabilizers or H1 and H2 blockers, are you able to get prescriptions compounded with no fillers or coloring? It might make it more tolerable to treat viruses and bacteria if you are properly medicated.
I definitely am not your best resource here as I have such mild MCAS, but it is helping me tolerate medications for my co infections now that I am on 4 different antihistamine and mast cell stabilizers. But my treatment is fairly new, so I can't answer yet if antibiotics work yet. 6 months of antivirals did nothing, 2 months of antibiotics doesn't seem to be doing anything either, but too recent to know. My personal gut feeling is that it has been more important for me to properly medicate my MCAS than viruses and bacteria infection. But I may change my mind with time.
Tagging @justy and @Gingergrrl as they have MCAS closer to your symptoms. I know there are others here, but my brain fails me as to their names!
I really think that viruses outside of detection are a major cause of CFS.
Why else would the body start getting so crazily sensitive to stuff that doesn't bother anyone else? The body knows there is a threat and is trying to figure out wtf is causing the problem. The sensors aren't giving clear answers.
It is like when people in the U.S call the police and the police end up shooting someone unrelated because they are so on guard and lack info on exactly where/what is wrong.
oh, remembered, lols, anyways, take EBV for example and yep they found mine a tiny bit elevated so that's why I got the prescription Valtrex, supposedly some 95 percent of the population has it yet it caused no problems, I don't think anyone can tell me if I had it prior to my mold exposure. bad environmental exposures are known to activate hidden viruses, so regardless of weither I have EBV prior or post water damaged building exposure, it caused no obvious symptoms or anything if I did! I didn't have autoimmunity before my WDB exposure, I wasn't hardly ever sick prior to my WDB's (actually 2 ) so I think we have to realize for some of us that viruses weren't a problem until after we had autoimmunity and inflammatory disease.
Weird stuff often shows up in serology tests, plus they sometimes show false positives, e.g. I was once told I had hepatitis C. Even when they are correct, they can reflect diseases you were exposed to decades ago.
For example, I never had a case of measles when I was a kid and never had the vaccine, but my serology shows I had what's called a subclinical infection. Even though tularemia is a severe disease, subclinical infections are common, according to Wikipedia.
My doc prescibed antibiotics for an infection that showed up in my bloodwork, but I didn't feel any better for it. I won't do that again. I think we ought to reserve those drugs for when we really need them because they can have serious consequences, such as alterations to your microbiome and the development of antibiotic-resistant bacteria.
Just my 2¢.
hi @Santino I, same as osisposis, took Valtrex for very high EBV. I didn't feel any better or worse, but my titres came back down to normal levels. The pharmacy changed brands on me and I reacted horribly to the 2nd brand. It was at that time that we decided to abandon valtrex and try the antibacterials.
I am now on doxycycline and clarithromyacin (2 months), I believe the main thing this is trying to hit is bartonella henselae. Dr Kaufman at Open Medicine Institute is the one that did the blood draws and diagnosis. Including the MCAS diagnosis.
For the record, I had high very titre to EBV and other herpes class viruses, mycoplasma pneumonia, parvovirus, and bartonella hensellae. Spelling may be inaccurate.
In support of your theory, I had ear infections and strep throat several times per year growing up. I had my tonsils out in my early to mid 30s (personal choice), and the doctor was surprised to find them full of infection. He told my mom while I was still under that I had had chronic tonsillitis all of my life. Getting my tonsils out did help for a year, then I was back to being sick. Also for the record, I didn't get mild CFS until about 5 or more years AFTER getting mono. If anything triggered mine, it was a toxic exposure.
So its truly the chicken/egg conversation. Everyone is different, its so hard to figure out what caused what. There are so many other issues that I would also question, not only infection.
I noticed that you tagged me and I read the original post but I have not had "brain fog, flu like feelings, frontal sinus congestion and also psychiatric symptoms" mentioned by the OP. My MCAS was of the severely allergic type with anaphylaxis last summer but is drastically better now (almost to the point of being gone) since starting IVIG. But I still take MCAS meds 2x/day plus Cortef so no idea how it would be without those things as a baseline (in addition to the IVIG) and no idea if this improvement is temporary or permanent.
My other issues besides the MCAS/allergic stuff are shortness of breath, dysautonomia/POTS, and muscle weakness. If any of this is helpful to the OP, let me know and am happy to say more.
Mono is short for infectious mononucleosis (usually caused by EBV or more rarely by CMV). Hope that helps!
@Gingergrrl sorry if I remembered wrong, I tagged you and justy because I thought your MCAS was preceeded by Mono? And justy I think has lyme? I'f I'm wrong just blame it on brain fog.
@Santino mono is EBV. Mononucleosis but shortened. I know it goes by other names around the world, but the name evades me at the moment. Good that you don't have CFS. Mine is mild-moderate, but CFS and MCAS together make my life boring! I work, but no longer am able to have a social life, and can't clean or cook.
What autoimmune disease do you have? Some of us have positive ANA speckled pattern, which hints at autoimmune disease.
Also, I have no idea how long I am to be on antibiotics. I do need to ask that question of my Dr.
Oops, edit to add that the bartonella test was ran by Galaxy. It actually detected the DNA of bartonella in my blood, so considered very accurate.
Sorry I missed that part and thought you meant we had the same symptoms. You are totally correct that I had mono in early 2012. My MCAS began in early 2015 so there was a big gap although I tested very high on histamine levels at the end of 2014 (pre-symptoms). I also had toxic mold exposure which I think played a bigger role in triggering the MCAS than the mono/EBV did but I will never know for sure.
Yes I have ANA 1:160 speckled pattern but the rheumy dismissed it as "normal" or even a "false positive" which I thought was ridiculous with all my autoantibodies.
@osisposis Is there any way to not put your own responses inside of a quote box? I think that is what is confusing me with this thread!
sorry, I'm not implying that infection is not involved in ME/CFS , but what kind of infection came first and what caused that infection can be a factor for some of us, just resently bacterial infection in the stomach has been pointed to , well theres a lot of things that can be involved in throwing off the PH in the gut, for example, when your involved in a mold exposure you are ingesting what you are inhaleing and ya it can throw off your PH balance.
sorry, I haven't spent enough time here to really know how I'm suppose to reply, weither to use quotes or not
Hi.. sorry for the MCAS. I am a housebound CFS patient with always very low energy, but at least I can tolerate almost everything.. I guess MCAS must be so hard on top of CFS.
I'm also a patient of KDM's and that is not always the case. With me, he didn't want to start an aggressive abx treatment; as I could understand, he thinks there is an auto-immunity going on and altered gut bacteria is one of the major triggers of it. So with me and some of the patients I know, his priority is to correct the gut microbiome. I also don't believe he makes such a big money from prescribing drugs? I don't buy the drugs from him And his fee as a doctor is extremely low for an European professor.
but gee, it hasn't just been damage to my gut , inhalation exposure in a moldy house affected all my airway not just my gut. the gut is actually part of the airways as is the skin. so in a water damaged or sick building all 3 routes of exposure , inhalation,ingestion and dermal/skin absorbtion all play a role
No worries and I think if when you quote others you put it in the yellow quote box but then when you post or reply yourself, it is not in a quote box, it will be easier for everyone to read it. The moderators can help explain it better than I can! And it's just a formatting thing and nothing to do with the content.
You can also try a Google Site Search
Separate names with a comma.