Herx Reaction and Lyme Symptoms

Hi all,

So I have been on probiotics, NAC, ALA, milk thistle, Nystatin, and Stevia (as a biofilm buster) for 1-4 few weeks now, staggering each on the recommendation of my LLMD. I started doxycycline a couple of days ago. Since then, my stool consistency seems to have gotten worse. I’ve also been feeling nauseated and have noticed a rash on my upper legs as well as a runny nose. Are these common Herx reactions?

A fecal elastase test done in April and then in May came back indicating severe pancreatic insufficiency, but my most recent test a couple of weeks ago is now in the normal range (at 321, up from 59 and 89 in April and May). My understanding is that the elastase level doesn’t tend to fluctuate wildly, so my guess is that it’s been improving/increasing over the last few months. While it may be a good thing, my muscle wasting and weight loss have continued since the beginning of this year; I’m down from 145 lbs. to 107. Has anyone else with the combo of Lyme/Anaplasma/Bartonella experienced such severe weight loss and visible muscle wasting? If so, how long after starting treatment did things stabilize?

I’ve also been experiencing lanugo growth all over my body for the last several months; can anyone else relate to this?

Any input would be sincerely appreciated!

Thank you,

~Heather

Lanugo can indicate that your body is experiencing starvation, and has been for some time. This is common with anorexia and malnutrition. Are you able to take in (and keep in) adequate calories and nutrients each day? I would strongly suggest getting a medical food product like Metagenics Ultra InflammX to make sure your body has nutrients. I can understand why you'd find nausea and diarrhea alarming right now!

Garzie gave you some good advice, but I also would suggest keeping an eye on the rash, as medication allergies are common and can escalate quickly.

I definitely experienced severe muscle wasting (including a terrifying case of post-viral myositis) and weight loss while chronically ill. I understand how scary it is to see yourself wasting away, a visible manifestation of how bad you feel. I started improving in general when I began treating mast cell activation syndrome and doing limbic system retraining. I started gaining weight slowly once I stabilized. What's critical for me in terms of maintaining weight and nutrition is being careful with my diet and MCAS. I eat locally and seasonally, and most years around this time I go a little overboard with fruit (both high sugar and high-FODMAP) and end up with a day of horrible, frequent diarrhea, and weeks of angry intestinal mast cells afterward. I usually lose a lot of weight during that time because I can't eat very much, and can only eat a very narrow range of things until my MCAS settles back down. I'm hoping to avoid this cycle this year!

Nine months ago, I started doing daily yoga, and my muscles were basically invisible, like skin and bones. I've been about 85% healthy for a few years now, and I do lots of yard work and cleaning, but my muscles were not strong or visible until I started doing yoga. Now I'm downright muscular. I think that building back muscle once it's gone (not starting from being merely out-of-shape, but starting from muscles having wasted away) just takes a lot of concerted effort. Post-exertional malaise (PEM) plagued me for many years, so only restorative yoga would have been possible, and sometimes not even that. I definitely would not have been able to do daily yoga at most points in my illness, so I am not suggesting you try it right now to build back muscles! Just as an idea for the future.

In terms of pancreas issues, I have experienced issues with my biliary tract during those late-summer intestinal rebellions. Irritation and irregularity in that system can cause swelling and irritation of the gallbladder, liver, bile ducts, and pancreas. I don't know how much that impacts testing, but I know it's been a major issue (and immensely painful) for me before. Oral cromolyn sodium was able to quell the GI tract (and biliary tract) irritation and resolve my symptoms more quickly. There are also a handful of yoga poses people do for gallbladder health (easy to find online) that help the biliary tract move and clear, and I think those helped when I was dealing with gallstones as well.

I hope you find some progress very soon!

“ Does anyone have experience with taking Plaquenil?“

Maybe start a new thread - you may get more feedback on that question.