Is this a relapse and any advice?

Hi everyone, I haven't been on in a while. Sorry this may get long but this is the only community that will understand... I had Lyme treatment end of March and overall have been doing better than I have in years. Years! I would say I was close to remission. Felt normal, had all day energy, able to take long walks again, go out, etc... Two weeks ago I felt like I was getting/had a UTI. Then my back froze up. It was hard to bend and sit. May 8th I went to a new chiro which helped (but perhaps released toxins?). The following Tuesday I had culture for UTI. I didn't get results until Monday May 17 and began low does Macrobid. I swore I would never take abx again but I had to. It hurt and D-mannose wasn't moving the needle. Wednesday May 19 I spoke with my Lyme doctor. He suggested a toxin binder. Thursday May 20 I woke up and felt a bit clearer and like I was on the mend, even able to take a walk. At 3:00pm that day I got and took the binder (Cellcore Biotoxin binder). An hour later I was dizzy. At 10:00pm I took 2nd antibiotic and went to bed. I woke up dizzy and shaky and had to crawl back to bed from bathroom. Symptoms since Friday: low energy (like wouldn't even be able to walk two blocks), feel shaky inside of arms and legs, almost like my legs are vibrating, chills, nauseous, dizzy, hot feeling in neck and down arms (as if it is emanating from inside-out), and I feel scared by all of these symptoms. I'm guessing the binder released Lyme toxins? Cellcore does cross brain/blood barrier. I'm super sensitive the suggested dosage is 2 pills 3x a day. I took one pill. One. Sorry this is long I'm just hoping for some advice.

On a separate note I know some of you may be wrestling with whether or not to vaccinate. Want to share that my son, who also has late stage Lyme, had his first Pfizer dose and was fine. I was super nervous. I didn't want him to have it but we live in NYC and he will be graduating and would have missed out on too much. His second dose is Tuesday. I'm super nervous for that one. I'll come back to let you all know how it is. I know several teens who had Pfizer and did very well. A friend's 20 year old daughter with LD was extremely fatigued for ten days after second shot.

My original LLMD in NYC is advising that his patients get the vaccine. Our new doctors don't advocate for it but have given a support protocol because they know some people will have to have it for work, etc...

Thanks and stay well everyone.

Hi, thanks for responding. I appreciate that. Very helpful - I do have neuropathy but never had this before. LLMD for my son and me was Dr. Bernard Raxlen for several years (he's wonderful). Then took my son to Jemsek (forget his name, D.C.) and had terrible experience. Decided to stop the abx route and have since been going to Institute For Restorative Health in Wichita, Kansas. I can't say enough good things about the experience. Helped us both so much. I hope you feel better soon. I have been hearing good things about Dr. Sculz. He's in Long Island. I don't have any person experience. Be well

Hi,

I think gut is a big one for all of us. IRH does a lot of bioresonance scanning so you know exactly what is going on, extensive lab/blood work and then you do different machines, which are hard to explain, but they all support the body for healing, gentle detox and immune building. I'm super sensitive and I don't herx when I go. I mean maybe a little but nothing that keeps me down. Then an hour a day doctor appointment where he does treatments and gives whatever support is needed (often homeopathic) and decides what herbal treatments. My main priorities are now liver/gut/colon and toxins. I was thrilled neurological is no longer my number one priority. Antibiotics always make me feel worse. I was given Gabapentin (something like that) and Naltroxene (something like that) but never tried either. I have heard about Dr. K and the IVG. Not sure it would be right for me but would love to hear more about it. I hope it helps you! Good luck and feel good.

Hi,

Thanks for responding. I agree that the UTI/abx started it but it absolutely happened right after the binder. Yes, had a Zoom call with my doctor who shipped out homeopathics and a few other support herbs. I have the best doctor. They arrived on Saturday but now I'm anxious to begin anything new. Good news is shaking/trembling stopped last night. Now just weak. This too shall pass. Feel good!

Girlie,

Hello! I hope you are doing really well. I understand the concern about relapsing. We all had Covid, and luckily never needed hospitalization. In my opinion LD is worse. Covid felt like terrible flu and last about three weeks. Then another few weeks to regain energy.

Hansa shut down and moved to Tennessee and is run under a different name. Our doctors opened their own clinic, still in Wichita, KS, called Institute for Restorative Health. In my opinion the doctor is key and we will never switch.

I'll let you know how my son does, although an 18 year old body is stronger/less toxins than us adults. There is an article in the New York Times today about a few cases of myocarditis in teens who have had the second dose. So I'm now a nervous wreck. My husband is insisting he get second dose. My son had Covid and long haul symptoms and still has antibodies. It's a challenge not to be vaccinated in NY. For example if you go to a restaurant or baseball game (just for two examples) you sit in separate areas with masks if you are not vaccinated. My son wants it because he wants to feel like other kids.

Yes. You have to show a phone app with proof of vaccination. If you aren't vaccinated you go to a separate area. Every person we know has been fully vaccinated since winter. To attend my son's graduation I have to get a PCR test, be masked, and sit separately. It's like being a leper. It's terrible that no one recognizes what people with LD go through. If you are not vaccinated you are considered crazy, anti-science, anti-vax. You get the idea. We have been invited to a post graduation party and I don't know what to do. I was going to get first vaccine on June 1 but now I'm so set back I'm not doing that. It's also hot here -so do I sit inside unvaccinated? I have been having a lot of anxiety over this. I don't really talk about this to other people. I'll keep you posted.

I know the dilemma you are in Huddie.

I am fortunate that so far where I live the proof of vaccine hadn’t been pushed yet.
My husband had his first and will be getting his booster soon (almost 3 months later due to Canada’s shortage vaccines early on)

I work in an elderly care home and I thought there would be pressure and be given an ultimatum to vax or leave .. but nope.

My son is the one who is lecturing me - and I believe his intentions are good - he’s just operating out of fear.

My upcoming appt with Dr J is in June and I’ll ask him if he has changed his mind.
He was not PRO vax last time I talked to him.

“ If vaccinated people are protected from the virus by the vaccine, then why do they need to be “protected” from dangerous, unvaccinated people?“

Yah - I wonder that too.
I guess for “herd immunity” we need a high percentage of vaxed?

“ If I didn't have LD I would be vaccinated already and I'm not a person who ever gets a flu shot. “

Same here

I have fear of my all my Lyme symptoms coming back - it would be devastating.

I know. That's why it feels like Russian roulette. Do I gamble getting a potentially deadly virus or do I gamble our years work of healing to all be for naught and come right back. I can't go back to that.

We can create a vacation destination: Lyme island! Is that how leper colonies began? Ok my dark humor is rearing its ugly head.

Girlie,

If I lived where you live I would not be vaccinated. It sounds like a pretty safe pocket of the world. I would just wait and see.

Pfizer is considered the best one. It has 1/3 the RMNA (I may have acronym incorrect) than Moderna, so less side effects. Johnson and Johnson is the vaccine that you only require one shot. J&J is activated like an old fashioned vaccine, giving you a bit of the virus. It has now been proven not to be as effective and has caused blood clots in some and there have been breakthrough cases. Meaning those vaccinated then contracted Covid. Our Kansas doctors said if we have to get vaccinated do not to get J&J and then a week or two later the resorts came out. On the news here this morning it was announced that Pfizer has it's third boost ready to go and will begin a trial next week. Ugh it's already starting...

I'm a wreck today. I slept maybe four hours, having complete insomnia. My Lyme relapse has brought on racing heart, nerve pain/heat feeling everywhere and such weakness. I think being so nervous over my son's vaccine is making me worse. My husband insists and thinks I'm a bit nuts. Lots of praying today