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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Hola, has leido a medico medium? Quizás pueda ayudarte su información. Suerte
Hi and thank you for writing.
Lyme does create a multitude of problems including parasites. I actually think today all Americans have parasites for many reasons. I would only trust educated lyme specialists to help if you need more.
I saw a clinical nutritionist who helped me a bit, putting me on a few para lyme liquids. I tried green walnut hull iquid and some others, they were not enough. I also found I needed lots of probiotics. Yet, you have to attack lyme in the right order, which professionals would need to explain.
I also found this website that made suggestions.
https://contrabandcures.com/FSM_Parasite_Protocols/
They also have other protocols, like for lyme, on their site. You can print out a dosage schedule. Schedule the start 2 days before a full or new moon. Ivermectin, fenbendazole, bereberine.
Just know that their recommendation for Ivermectin is low, Dr. Tenpenny reccomends taking: 0.6mg/kg…your weight in pounds divided by 2.2 times 0.6 to get your dosage.
Yes this lyme and parasite stuff is a LOT to go through, but I intend only the best results for you, rachel
https://www.fenbendazole.org/fenbendazole-for-human-parasites/
We’ve (elderly couple) dealt with many of your very same issues over the last 10 years or so. I was the most affected following a 3-year stint in the Peace Corps (2010-2013), when I was sent to Africa and received MANY vaccines & antibiotics. Following my return home, I realized I had a horrible parasite problem. No medical help available, no pharmaceuticals and very little information. I discovered and worked with similar folks at CureZone struggling with these problems. I made significant progress with vet meds Fenbendazole, Doxy & Ivermectin. Then COVID hit, and my treatment plan was disrupted. Currently, we are both back on treatment as both symptoms and parasite load are high. We are following the plan found in the Comment section below the above website, 6 days on & 1 day off. We are almost 2 months along with significant progress. The website is wonderfully updated with excellent information now.
We now believe (more than ever) that parasites infect everything – from birth and that most ”diseases” and “symptoms of aging” derive from parasite damage. Parasite treatment is a very difficult, long term process. Easy to do, but hard to cope with the bodily reactions to the constant death of the parasites (Herxheimer Reactions). However, we KNOW that even elderly (80s) bodies can heal and self-repair, and we are managing. Please feel free to contact me for info/support if I can help.
Know the Cause with Doug Kaufman FB page, his specialty is mycotoxins, has great information. He had a brilliant doctor a few weeks ago on his show, from California. You could try contacting this physician.
A good case for homeopathy, if generally oral therapies (Pharma rx? Supplements?) lead to sensitivity/allergic/anaphylactic reactions. Even then we tread carefully, but its a far cry from drugs like antibiotics etc. Then slowly very gradually introduce other which i prescribe.
And yes i have experienced long term extreme allergic/autoimmune conditions in the past.
In understand through my own experiences, the struggles to just “be”.
Not the same exactly, but that doesnt matter. We are each unique in our story, must pick apart and figure how to proceed. Example, I was fully allergic to light for several years. Gasped like a fish with completely swollen nasopharynx most of each year for a decade or so. Much more than this, but I persisted and I succeeded.
I worked through these problems over decades, but nowadays I have even better resources. Not the “usual suspects” we find online. Please do email me if we can discuss meeting (online via Zoom)
Anne Sash – Homeopath