Part 2 my story...

During this time there was again lots of stress. I was physically working out lots and working in the very hot summer sun (turns out I got benign skin cancer while I was there). But most of the i n tense worst symptoms again receded and so I once again deferred treatment till later on. Back in Ma. I started working as a fitness instructor and taking on much more for work and things than I had in a long time. Moved to the Berkshires of Western Ma. in July 2020. Started relaxing and was drinking lots of beer eating the occasional pizza and ice cream. I upped my workout regimen even more now. Fast forward to Jan. 1 2021 and I may or may not have gotten another tick bite after hiking through some woods. I had a red blotch on my pec that I thought was a blemish. A week or so later I got a flu like illness, my head clogged up again with the ringing, blockage, pressure. Then that cleared and a week later the neuropathic pain started again. Full body, all over. It was milder than in 2017 when I was taking the Zhang. Also Head pressure. brain fog, depression, worry anxiety, low emotions. My heart also was attacked and hurt. My head would turn bright red at night when most of the symptoms happened.

I immediately started back to searching and researched herxes vs flares, Neuro Lyme Bart, relapses etc. What puzzled me was that even though We immediately changed our diet to an auto immune diet and I started some supplements, reduced mental stress, and went hard at detoxing with lemon water all day, Alka Seltzer Gold, dry brushing detox baths peroxide salts and baking soda plus I slowed down my physical regimen greatly the symptoms have been constant every day for 2 months now. So I guess I don't quite know what I'm dealing with here. I susspect it's the original undertreated Lyme and co's that were never properly dealt with and that my immune system for whatever reason was able to deal with it for a few years but the combo of constant stress, emotional and physical,

finally crashed in on me and allowed the bugs to raise hell again. I'm currently trying to decide what my next step is for us. My symptoms have always been mostly neurological. I do think the immediate switch to complete detox, a great diet and lowering stress may have helped a good deal, but I know know I finally do need to properly address the underlying condition. Any thoughts or opinions are most welcome! Thanks for your time

Johnny

Thanks for the response dcd2103!
I am currently trying to figure out where to go, (with Covid restrictions it's more who to see on Zoom) and what type of modality, protocol, treatment to start. My greatest concern at the moment is that in 2017 I herxed very badly for months but at least I knew it mostly because I was treating aggressively. These past two months it is flaring on it's own without treatment, unless one counts a total change of diet, starving the bugs of their food source as a mild treatment. So how will I survive the herxing once I start treatment? I am very concerned with my quality of life and what to do in the middle of the night when things get bad. I know the E.R. staff won't likely know what to do for me if I have to go there. So I need to impress whomever I hire that they need to work with me to help me establish this 'survivability' with a total detox plan, patient aftercare, availability and a willingness to adapt the plan if it's too painful and harmful for me. So right now i'm in the weeds of research going back and forth between an herbal protocal (Lyme herbalist) a traditional pharma antibiotic situation (MD)

or maybe a functional medicine doc who could mix in both systems. I spoke with Dr H in N.Y. (his staff) and got a slot with his new NP for treatment but that is on hold right now, I also considered Dr P in Ct and several functional docs over the line in N.H. but I think I need testing done to determine what's going on in my body. I've never had a test for metals or candida or any significant tests really other than the basic western blot which came back negative. So I'm jot sure which issue or co infection I should be treating first.

I would try to get IVIG if I were you. It will shut off all the antibodies and inflammation and calm things down while you treat.

I would not go to Dr P. I’m a huge seller if that guy. I’ve read his book and watched his interviews. I’ve talked to people who went to see him and gotten worse. He’s very much a “when all you have is a hammer everything looks like a nail” type of guy.

I would go to Dr Amiram Katz in CT. He’s awesome. He also does IVIG.

JH44 said...
when we moved house in 2003 in N.Y. after the initial tick bites the place we rented was heavily moldy. We stored our things in the attic and months later there was mold overgrowth all over them and we had to throw most out. Also I used to wake up in the morning and there would be blood on my pillowcase from my eyes. And our 2 cats slowly got very sick and died while we were there. I assumed it was because of Lyme but we don't know. And lots of my psych episodes started in that house as well. So I always knew I might be dealing with a mold issue after that.

That is absolutely a toxic mold scenario. Learn more about about Chronic Inflammatory Response Syndrome (CIRS) at survivingmold.com and biotoxinjourney.com.

There’s an organization called ISEAI that was formed by doctors and mold remediation consultants. You can search for practitioners on their site. They are probably more mold aware and mold alert than most LLMD’s. They frequently treat Lyme/co as well but may not be as effective at it as a well-known, experienced, successful LLMD.

Hi WalkingbyFaith!
I do not take what you said personally at all. I posted that in full disclosure because although I come from several generations of dysfunctional Irish-American Bostonian alcoholic family members, I myself had basically given up alcohol consumption for 15 years before the tick bites and mold/Lyme issues. And I know that Lyme and coinfections and possibly other things (mold/Candida?) can make you crave what they need and almost compel you to partake of what's bad for us. The psych episodes which flared badly were totally out of character for me as were the high consumption of booze. So I wonder if the reason some of us when we are compromised reach for things we shouldn't is because of the underlying issues that compel us to feed them (I understand that Lyme feeds on alcohol which breaks down to sugar and possibly the yeast in Candida) the same way Lyme rage rears its ugly head sometimes whether we want it or not and that some Lyme folks can't kick a sweet tooth.. I do not have a physical need for alcohol and I surely do not want it in my life in the amounts it has been, if at all. I'm hopeful that with consistent treatment of the root causes that these cravings will go away. As to the mold issue I will research and see if some of my main symptoms match a mold toxicity scenario. I also have mouth/tooth issues and will be seeing a biological dentist soon hoping that some of this is due to cavitations/ leftover root canal bacteria and can be cleaned up with treatment. Thanks for your kind consideration!
Johnny

Johnny, you can click on my username and email me for the doctor's information (on this site, we can't post full names of Lyme docs).

I highly recommend the book Toxic by Neil Nathan if you have not read it yet. I know it sounds like a pain to read a whole book when you are feeling like garbage, but I found it to be a real page-turner, and a life-saver.