Can Anyone Advise/Relate?- Cannot Consume Anything Without Triggering Symptoms

I am brand new, & have read over the "start here" post which was helpful, thank you.

After developing debilitating symptoms this past October & going through many blood tests for various deficiencies/illnesses, I was finally tested for & diagnosed with Lyme January of this year, & put on 3 weeks of Doxy. One major condition that I was aware of months before the diagnosis was an intense worsening of my symptoms -- pins & needles, hunger, achy body, muscle weakness, blurred vision, head pressure, mood change & irritability, palpitations, EXTREME exhaustion & fatigue, cognitive impairment, burning feeling, brain fog etc., when I ate, drank, or took oral medication - (tylenol, probiotic, Iron supplement, Vitamin C., etc.). Some foods/meds were way worse than others. I started a whole 30/paleo diet 2 weeks before the diagnosis, & once diagnosed, tried to find & follow "Lyme Diet" recs.

The doxy caused horrible effects & I was referred to an ID specialist, who retested me for Lyme, & started me on Cefuroxime which could address my neuro symptoms. I instantly reacted horribly to Cefuroxime, and 2 weeks in I developed a bad histamine reaction to everything I consumed on top of the above symptoms. My trypase test for MCAS came back normal, but I tested positive for a penicillin allergy (been taking penicillin since childhood without issue until now), so we switched to Azithromycin -- I'm on week 4. I take it with a Xyzal at bed and have tolerated it so-so...better than the others.

The few foods I can (barely) tolerate today without a trigger of those multi-organ symptoms are: organic chicken breasts (sometimes), organic apples (certain kinds), blueberries (sometimes, currently cannot), kale, organic turkey bacon - (w/o sugar, & paprika), & I was able to eat organic cashews until yesterday & again today when they started triggering the symptoms pretty badly. Only spices are salt (I think), and extra virgin olive oil. two weeks ago I tried to re-incorporate some foods - arugula, avocado, haddock, & lemon juice, & my original symptoms flared up very badly for a few days & I started to have a histamine reaction. I tried to re-incorporate Lava Yogurt since I can't tolerate oral probiotic pills, and & I reacted to it as well. My ID doctor said he doesn't address the diet aspect of Lyme & merely advised that I avoid dairy...the allergist I saw for testing didn't have an answer/suggestion. MRI and EEG were uneventful. Saw a nutritionist who was puzzled and didn't think sensitivity testing would be effective since the few foods I'm able to tolerate change periodically, and my list is so restricted.

I've read many posts/articles/medical pages about Lyme diet & food triggers, and have chatted with 3 I people I know who've had Lyme, and haven't encountered anyone with food trigger symptoms quite like this...I'm hopeful that connecting within a community may help, as I am at my wits end. Has anyone else heard of or experienced anything like this? (I attempted to peruse & read past food intolerance threads on here before posting, but likely missed something).

Thank you

Post Edited (Erolobaj) : 6/10/2019 3:49:45 PM (GMT-6)

Hi, and welcome!

I highly recommend that you look into the book Toxic by Neil Nathan, a doctor whose practice focuses on people who are so disablingly reactive that they cannot handle most kinds of treatment, and the book provides ideas for where to start. (With reactivity like this, treating Lyme with antimicrobials usually comes a while after stabilizing the person's reactivity.) I found it tremendously helpful. There are several tests aside from tryptase that are used to diagnose MCAS, but many people find the symptoms so obvious that testing doesn't seem necessary. Was the tryptase test done within four hours of a histamine reaction?

Once you are very reactive, it is so so hard to break out of the cycle. Your nutritionist is right that food sensitivity testing probably won't help because it's not about the specific foods right now, so much as it's about your body's signals being messed up. Sadly it requires a lot of patience. Have you tried a low-histamine diet? Checked for exposure to other substances that can prime you for reactivity (mold, fragrances, pollen, cleaning products, etc.)?

Some people have dramatic responses to limbic system retraining programs like Annie Hopper's DNRS.

Honestly it makes me a little angry that your doctor has nothing to say about diet with regard to Lyme. There are so many people for whom diet is a key piece of the puzzle.

A functional MD familiar with the Shoemaker protocol tested me for mold.

Yes I had it really bad for a while, I just had to cut everything out and am now doing pretty well on a ketogenic diet. But, my intolerances are still alive and well and waiting in a dark alley ready to beat me up lol