The worst I’ve ever felt...have you felt like this?

Hi all-
I’m relatively new to the Lyme community after recently being officially diagnosed following Igenex testing (along with mold toxicity and extremely high cortisol levels). I was bit by a tick and had the target shaped rash back in 2015 and was treated with a week of abx which did nothing. Fast forward to now and I’ve been having awful symptoms for 3 years now that include severe dizziness, fatigue, vision problems, joint pain, depersonalization, etc. I’m a nurse and have been rendered completely unable to work. I went without a diagnosis for the longest time as numerous doctors told me nothing was wrong, but was finally able to find a Lyme Literate MD that took me seriously.

For the past week, I’ve been taking VitD, Ashwaganda, A-Inflam, activated charcoal, and BPC-157 injections SQ. As of the past 4 days or so, my symptoms have gotten SUBSTANTIALLY worse to the point where I’m convinced that I am without a doubt dying. I don’t know where I am most of the time, I can’t keep my eyes open, I can’t stand without the dizziness being too intense, and am essentially non-functioning on the couch (no appetitive, the most severe fatigue, etc). Can I be herxing from the A-Inflam, or is there something else going on? I’ve truly never felt so bad in my life and am convinced that my body is failing. I’m very new to this and would love to hear what others have gone through, or just some reassurance that this is “normal” (or as normal as one can be with Lyme). My doctor has also recommended Ivermectin, which I will be starting next week. Thank you in advance!!

Unfortunately, what you are describing has been the norm for my daughter. Horrific symptoms that left her feeling like she was dying. She believed she truly was for the longest time. The herxes from treatment, especially in the beginning, were just almost unbearable. She also was completely non functional and sounds very similar to what you are experiencing.

I am so sorry you are suffering so greatly. There are few who truly understand how this affects every part of your life and how healing is such a difficult journey.

I am not familiar with the A-Inflam nor the shots you mention, but so many things could cause herxing. My daughter tolerated herxing better once we figured out which detox methods helped her the most, what toxin binders to take, and how much of what treatments affected her. Trial and error really. Be nice if it was “take these meds and all will get well”.

Praying for you today.

Skyywin,

Welcome and Merry Christmas!

So sorry you are in this boat but glad you finally got to the root of your problems - mold and tick borne diseases.

I looked up A-Inflamm. It doesn’t look too herx provoking as far as I can tell. It does have garlic and licorice in it, which have some antimicrobial action - particularly the garlic. Most of the ingredients are supportive as far as I can tell. It has smilax, which is supposed to reduce the effects of herxheimers. How much do you take?

I have heard of BPC-157, but can’t remember what others reported to feel from it. How often are you getting the shots?

You can try reducing the dosages of the A-Inflamm and the shots OR stop those until you get back to baseline and restart much lower and slower.

Epsom salt baths and/or sauna can ease the herx symptoms, but start low and slow if you haven’t done them before. Start with one cup of epsom salt and not overly hot water - 10-20 minutes.

TUDCA helped me more with my detox issues than anything else I tried. I have bad mold issues, too.

You are not taking Cholestyramine yet are you?

P.S. - Don’t start the Ivermectin until you are tolerating the other stuff well. Talk to your provider about the severity of your herx reactions. A lot of providers are clueless when it comes to very sensitive people.

Post Edited (WalkingbyFaith) : 12/25/2020 7:47:56 AM (GMT-7)

Skyywin, I think most of us have felt similarly like we are actually dying, and at death's door, not uncommon or unusual when many of us were in the throes of fatigue, vision disturbance and other symptoms.

Sry, I don't know what bpc-157, but a quick google of it sounds like a gastric enzyme or something that may interact with other supps or meds, hard to know what, if it does.

I would suggest adaptogens that lessen herxheimer reactions: eleuthero root powder (aka. siberian ginseng), epsom salt bath, lavender and/or peppermint oil to relax. Glutathione, NAC (n acetyl cysteine), ALCAR, ( acetyl l-carnitine) well the supplement list becomes way too long anyway...

I have been having fairly decent relief using CBD in the form of hemp flower (smokable as it is cheapest form/route), seems to check all the boxes of anti-inflammatory, antibacterial, pain relief, arthritis relief, it seems to modulate/regulate many things like GI tract and so forth, had been taking THC cannabis but am a tad sensitive to it, ( I have a theory about how the psychoactive element is part of an organic chemical reaction from bacterial die-off past thru the blood brain barrier for those with neuro-borrelial late stage infections)

But I am still in limbo from a health care system that doesn't understand lyme and cos, and keeps referring me to psych meds/psych. treatments. So the cognitive dissonance is greatly felt as I feel "off" much of the day, and against my better judgement have to take psych. meds that dull me now. I don't feel much pain maybe because the CBD, but then I don't feel much of anything at all.

Anyway, it's hard to describe the misery of this disease to any but those who have directly experienced it, and it can't be taken lightly as the pain and debilitation are "unreal" for lack of a better term, to try to explain depersonalization and other psych. problems, these are not imaginary.

But these are "normal" for lyme and co-infection sufferers..unfortunately. And it's hard to not mind the PTSD from being dismissed whilst genuinely suffering this way. Hope you at least find some comfort in our commiseration.

Seeing you in the fullness of this light, and sorting it out, slowly but steadily, and yes, I've felt so miserable I thought I was dying, I went from being a super active dancer to completely stopping dancing and only being able to walk ten yards, if that. All my symptoms, as well as exposure pointed to lyme, so I didn't wait, and found this group and began to integrate the wisdom here. In my experience, I took the feeling worse as a really positive thing, in that, I learned I was herxing, and just steadily kept at it, making changes, trying different herbs, and after around 6 months things seemed to be better. Once you have it, it is life time consideration, I found complacency can lead to a relapse, but the second round, I found, not as difficult to get under control as the first.