Feedback On Battling Parasites and Severe Gut Dysbiosis?

Four years ago, I wrote about my decline in health (here). I had developed severe gut dysbiosis along with a long list of other symptoms. I continue to struggle with severe upper GI reactions, gastritis, and mast cell activation and have exhausted conventional treatments, which seem only to make matters worse. I am publishing an update of my situation in the hopes of receiving some input to help me recover.

Severely Restricted Diet and Evidence of Parasites

After over four years, I am still only eating four foods: white sushi rice, chicken breast, egg yolks and veal. I know it’s a horrible diet but it is literally all I can eat. Two years ago, I had an upper endoscopy, which showed extensive gastric inflammation and three ulcers. The biopsies showed mycoplasma; H pylori was negative, as was Whipple’s disease.  My duodenal aspirate showed high levels of staphylococcus and low levels of dientamoeba fragilis, a parasite that causes GI related symptoms.

I did a short term course of IV doxycycline for 7 days. I had to stop, as it gave me toxicity. My platelets and nutrients tanked and I became anemic. My liver enzymes have been elevated since 2020 and I came to the conclusion that I had cholestasis due to a severely low fat diet. Once I started eating egg yolks consistently and addressing a folate deficiency, my numbers improved.

I started seeing a new doctor in July and more testing was done. All mast cell tests were normal, however, my serum tryptase remains elevated. I do have hereditary alpha tryptasemia. Stool testing showed high fecal fat, three parasites (giardia, blastocystis, and cryptosporidium). I also tested positive for babesia and borrelia. Past testing showed positive bartonella serology, but new tests were negative. Although, I may still have active bartonella.

Since I get anaphylactic type reactions in my stomach and can’t tolerate any oral therapies, even micro-dosages, my doctors put me on a low dose Xolair protocol. I attempted to work up my dosage over a three month period but when I got to 8 mg my gut symptoms started flaring  and I lost one of my 4 safe foods. I had to discontinue the Xolair and it took 9 weeks to return to baseline.

After a few months off, I tried Dupixent as my MCAS doctor felt that might be a good alternative. I started with 2mg and made it to 6mg, then my lower gut symptoms started acting up. I developed severe steatorrhea/diarrhea. This resulted from exacerbation of my parasites, as Dupixent can lower the body’s immunity to parasites.

I am back to square one. I am going to try a low dose of compounded Ivermectin, but not sure I will tolerate that. I am scheduled to do a SOT therapy for Lyme next month and may do one for Babesia as well.

In terms of mast cells and inflammation, I am not sure what will be next. I could try TNF blockers or immunosuppressants to see if I make any progress, but that’s a slippery slope and I don’t want to lower my immunity further while being infected with Lyme and other pathogens.

Looking For Feedback

My life continues to be a struggle every day. The psychological toll all of this has taken on me can’t be put into words. After four years, I haven’t made any progress with my gut and have been unable to add in any new foods. I remain in a malnourished state and am scared of what will happen to my body if I don’t get all of this under control somehow.  I appreciate any feedback. Thank you.

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Photo by Fernando Venzano on Unsplash.