Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, October 21, 2019

I'm still here

I haven't blogged since June because there's been nothing new to report.  My ME symptoms have remained steady for a long time, which is good.  I continue to be one of the very lucky ones who is still able to function at a high level compared to the average ME patient.  I feel very fortunate for that. 

In my last blog I mentioned that I was trying Cromolyn for mast cell activation and I had noticed an improvement in my gut symptoms.  It was short-lived.   I stopped taking Cromolyn in early September when I realized it probably wasn't having any beneficial effect.  I haven't experienced any drop-off in health since ceasing.  I haven't found anything else to benefit my reported mast cell activation...if that's indeed what I'm dealing with.

I continue to focus on treating SIBO because it is a distinct problem that I feel gives me a reasonable chance at treating.  On the other hand, with respect to ME as a whole, I feel like I've largely exhausted what I can try.  There's nothing left.  I'm still trying to obtain insurance approval for intermuscular IGG, but the insurance company has already denied me twice, so I am not counting on success. 


I feel fairly certain that my SIBO is caused by a dysfunctional vagus nerve, which is all tied in to ME in the first place.  My version of SIBO is the methane-producing type, which is related to irregularity.  Simply put, my guts are not moving things through the system.  When food remains in the system too long, stagnating, it leads to overgrowth of unfriendly bacteria and a class of primitive life form which is not actually a bacteria at all, but its own class called "archaea." Archaea don't respond to most antibiotics. 

There are various techniques to try to stimulate the vagus nerve and improve regularity.  I find that only doing one or two of  has little effect, but when I consistently do multiple vagus nerve stipulation techniques, it does start to move things along...a little.  In that vein, I take 2 mg. of Low Dose Naltrexone (LDN), which is also an immune modulator and, in theory, should help with other neuro-immune aspects of ME.  I also take cold showers and do very light yoga when I can.  These things seem to stimulate the vagus nerve. 

Meanwhile, I am going to try another round of anti-SIBO antibiotics consisting of xifaxin and neomycin.  Both together are recommended for methane-based SIBO.  I'm hoping that the results will be more long-lasting this time if I continue to focus on keeping regularity so that the conditions don't remain for the problem to return.  I am nervous though because the success rate for treating SIBO with xifaxin and neomycin is only about 40%.  Most times, it returns within a year.  If that happens, I don't have much left to try. 

Wednesday, June 5, 2019

I'm now treating with Cromolyn for Mast Cell Activation Syndrome

In December, one of my doctors (Dr. M) gave me a diagnosis of Mast Cell Activation Syndrome.  I wasn't entirely confident about the diagnosis, but am willing to try various recommended treatments.  Dr. M first recommended that I try successive two week trials of each of the four major brands of over-the-counter H1 blocker allergy medications.  (I don't want to write the brand names in this post, but they are well known.)  I tried all four and didn't notice a significant difference with any of them.

Dr. M had recommended that if the 1-dose per day regimen didn't work, that I should try up to 3 doses per day.  I never tried that because I'm hesitant to exceed the box's indications.  Perhaps in the future if I read about other MCAS patients having success with larger doses, I may try it, but I haven't yet sought out recommendations from other MCAS patients.  My doctor also wrote a prescription for cromolyn liquid, 100mg 4x/day, in the event that the over-the-counter options failed.

In the meantime, after being in more-or-less remission from SIBO for about 4 months in late-2018 and early-2019, the symptoms started to return in March. (My SIBO symptoms are feeling of intense inflammation and bloating throughout the gut, accompanied by constipation—I have the methane-based type of SIBO.)  As you can imagine, this was a disappointment for me. By mid-May, the symptoms were as bad as they have ever been.

When the SIBO symptoms reached a peak in late May, I decided to fill the cromolyn prescription on the chance that it helped with the SIBO symptoms.  It certainly seemed to help.  Almost immediately after I began taking the cromolyn, my gut symptoms improved.  (As I found out later, there is a connection between SIBO and MCAS, so it might make sense that cromolyn would help SIBO symptoms. For example, this link.)

My experience with SIBO has been a wild ride and the symptoms have waxed and waned at times without any explanation, so it's difficult to know with certainty if the cromolyn was the reason for the improvement.  I also still experience some SIBO symptoms, but not as bad as in May.  Also, my dose of cromolyn is half of what other patients report taking.  I may need to increase the dose to further experiment—if insurance will cover it.

In the meantime, I've started the process of seeking insurance approval for intramuscular IgG, which should help with SIBO as well as continued positive IgM for Epstein Bar Virus and other issues. The insurance company (of course) rejected the first effort for approval.  They want me to undergo a further antibody production test which would involve receiving vaccinations for diphtheria and tetanus and then subsequently testing whether my body's antibody response is sufficient.  I have many reservations about this but I am considering it.

Edit: "H2 blocker" replaced with "H1 blocker."

Wednesday, February 6, 2019

Dizziness and possibly vertigo as symptoms of M.E.?

I have been going along at baseline or a little above for almost a month now.  When things are going smoothly, I often forget to blog.  January was the first month since I started blogging in about 2011 that I let an entire calendar month pass without blogging.  That's a good sign.

Strangely I woke up this morning with my brain feeling inflamed.  When I opened my eyes and looked around the room, the room felt like it was spinning. I could tell that getting up was going to be an adventure.  It was.  Of course, the feeling of brain inflammation and brain fog that I've been enduring this morning is nothing new.  I've experienced it on and off since 2011.  It's strange, however, that for the first time that I can remember, it has resulted in feeling dizzy.  What has changed?  I'm not sure if "vertigo" is the right term (I will have to look into that.)

[Edit: this wasn't POTS or OI.  I've had those symptoms before. They come and go for me, thankfully. But this was worse when lying down, which is the opposite from when I've had POTS and OI.]

I haven't yet had time to research ME and dizziness. I seem to recall other patients complaining about it.  So this is the first step--just acknowledging that it's an issue.  If anyone has any insights into treatments to that help this condition, please let me know.