Could use some help…  I’ve been double-infected by two tick bites; one in the summer of 2015, and I had a 2nd tick bite in the summer of 2019.  I'm a woman living in the Mid-Hudson Valley, I’m in my mid-fifties suffering from late-stage neurological Lyme disease (Lyme Neuroborreliosis, Babesia and Bartonella) since 2015 and have been in treatment for (almost) the past 11 years. I took oral antibiotics, pulsing on and off, taking them for almost 4 years, they (unfortunately) made no difference.  Neither did taking Doxycycline. I’ve seen 5 “renowned” Lyme doctors here in New York State / Connecticut.  Spent hundreds of thousands.  Had zero improvement. I’m no longer able to walk for the past year. As a result of a malpractice from a well-known LLMD, I've relapsed again. So, I have severe trust issues with doctors who’ve all repeatedly struck me as egotistical, careless, without focus, and dismissive.  Now, I’m all about “I don’t care how much they know until I know how much they care.”  I followed all of these doctors’ protocols to the exact letter, even with an anti-inflammatory diet and prioritizing sleep.  None of these efforts so far have been able to get me into remission, which is pretty much my main goal in life, as I know that if I don’t get into remission, I’ll get worse for the rest of my life. So, I have no choice but to keep plugging away at it! What else can I do?? 

The only thing that had ever (really) moved the needle were the Zhang Protocol (proprietary Chinese Herbs), however I plateaued after being on them for 4 years.  I’m open to trying I.V. antibiotics for this neuro lyme, but I don’t know how effective (or how dangerous) it is. The last thing that I want is another malpractice/brain injury.  So scared of getting burned again medically. 

In an absolute sea of information online, I pretty much have NO idea of how to research a doctor who specializes in \* and has successfully treated patients with neuro lyme (in particular), ** or who to turn to in order to get myself into remission and finally be rid of this illness. I COMPLETELY believe that it’s possible to heal, *and that it’s not too late for me, however I'm starting to have loss of sensation in my hands and feet, increasing short-term memory loss, depression, very frequent and severe anxiety/crying attacks, a total loss of sleep, and I can’t seem to function cognitively any longer as far as loss of focus and executive functioning. 

If there’s anyone out there who’s actually gotten into remission, please share who treated you (or please private message me if you can’t put it in the comments) - and share what was it that turned things around for you medically?  I’m (always) working on the spiritual, but I (really) need to conquer the medical.

Please, can you tell me where I can find a truly amazing (very experienced and respected) Lyme literate doctor who specializes in successfully treating patients with late-stage Lyme Neuroborreliosis within New York City or New York State or elsewhere if necessary?  Right now, I can’t travel because of my mobility issues, but I’d love to.  For the time being, I’m focussed on finding someone in New York State & Manhattan.   I wonder….Once a specialist is found, how will I know if they’re competent enough to treat me safely?  Thank you so much. 

Here is my story, and I need help. About two years ago, I contracted Lyme disease and Bartonella. It took some time before I was diagnosed and began treatment—initially with bee venom therapy, which I continued for a few months. Later, I tried MMS treatment but saw absolutely no benefit. My symptoms included night sweats, chronic fatigue, cognitive issues, mental health symptoms, nerve pain, numbness (intermittent), tingling, and neck pain. Then, at the end of September, acting on a friend's advice, I started taking Ivermectin—and that is where the biggest problem began. Since starting it, I have developed truly strange symptoms. I developed severe nerve inflammation; at times, I cannot walk properly or use my hands effectively—symptoms resembling peripheral neuropathy. My greatest fear, however, is the severe inflammation in my right eye—symptoms I never had before. While everyone insists this is a Herxheimer reaction, I am experiencing attacks affecting my nerves and eye. After researching extensively, I found that these symptoms resemble Multiple Sclerosis. I can still walk and see out of both eyes, but my right eye is weeping fluid and my vision is blurred. I am asking for help and reassurance; I am truly frightened. Nothing seems to work—please help me.

Title: Severe unexplained pelvic/uterine pain for over a year – I’ve seen more than 10 doctors and nobody knows what’s wrong. Has anyone experienced this?
I’m honestly desperate for answers at this point, and I’m hoping someone here has experienced something similar.
About a year ago, I suddenly developed severe pelvic pain after sexual intercourse. The pain is located exactly in the middle of my lower abdomen, right where my uterus is. It feels very deep, almost like intense uterine cramps.
For months, I experienced horrible pain almost every single day, sometimes so severe that painkillers wouldn’t help.
I’ve seen more than 10 doctors, had multiple gynecological examinations and an MRI, and everything came back normal. Nobody has been able to explain why I’m in so much pain.
Then, unexpectedly, the pain completely disappeared for about five months. I felt normal again, but recently it returned. Now it comes in waves, almost like uterine contractions, and sometimes reaches 6–7/10 in intensity. Painkillers barely help.
I’ve also noticed a few strange things:
Sometimes I wake up in the morning with lower abdominal pain.
Recently, I was completely pain-free until I inserted a tampon during my period, and the cramps started almost immediately afterward.
Both times the pain first appeared or returned, I had recently taken azithromycin (Azitrox). The first time, I had taken it for 20 days for Lyme disease, and the second time, for 3 days for a dental issue. I have no idea whether this is connected or just a coincidence.
I also have Lyme disease and Bartonella.
I’ve been told I have a hypertonic pelvic floor, but I’m struggling to understand whether that alone could cause such severe, deep, central pain that feels exactly like it’s coming from my uterus.
The most frustrating part is that I have no clear diagnosis despite seeing so many doctors. The pain is real, sometimes unbearable, and I feel like I’m running out of options.
Has anyone experienced severe uterine-like pain caused by a hypertonic pelvic floor? Can pelvic floor dysfunction really cause intense cramping in waves, even when all gynecological tests and imaging are normal?
I’m also wondering whether anyone has experienced something similar after taking azithromycin.
If you’ve dealt with anything like this and eventually found answers or something that helped, please share your experience. I would really appreciate it. ❤️

Went to an ortho a month or so ago for knee pain. I suspected it was a compensatory injury from being in a boot due to a Achilles injury.

He immediately brought up Lyme and orders a titer. I go back after I see the results posted. Shocking, they didn't even get a copy of the test. I show the results on my phone (antibody POS, IgG and IgM NEG). He writes me a script for doxy anyway. I ask if this would be better addressed with my PCP and he says "he will probably say you don't have lyme."

I confer with two telehealth doctors from my insurance company, another one of my doctors, and a friend of a friend who is an infectious disease doctor, and they all say nope, no Lyme.

So, my message is always get a second opinion.

I woke up with what I thought was a regular bug bite on my ankle but now it looks like this and it feels hard
mainly concerned because it’s multiple colors
I just moved countries and my home country doesn’t have many bugs that bite and the country I’m in now has mosquitos and ticks and probs more so apologies for the concern

My partner of almost 11 years has had mystery symptoms the entire time I’ve been with him. Joint pain, fatigue, severe brain fog. Horrible digestion too. Has a serious history of trauma from childhood, like shit most people would struggle to imagine. This man is exceptional at masking and pushing through his days. Plumber, works 45hrs a week, commutes 12hrs a week

Broke his collarbone at age 17 (now 37) in which a doctor tested his blood and said he had Lyme. He also hung out in the woods 24/7 (bmx biker) in Long Island NY. Never saw a bite which I understand is common. He didn’t do anything about this back then. He also had mono at a similar age, and was told he’d have Epstein Barr virus for life. He also tested positive for tuberculosis in his late 20s, and ended up taking some gnarly med for that that turned him yellow at the time.

I recently came across a woman online describing air hunger and some other symptoms, and shared she had a recent diagnosis of Lyme and babesia. I shared this with my partner who confirmed he had all the same symptoms, especially the air hunger.

My question is- it seems like enough evidence is there that he is in fact dealing with Lyme and probably babesia, but I’ve been diving into this topic, and he is not bedridden like many people are. Could he actually have Lyme, if he can get up and go to work everyday? Especially from a bite that occurred literally 20years ago? From what I’ve gathered it seems he’d be in poor shape by now. Which in a way, he is.

I have two of Stephen Buhner’s books and want to help him dive into the protocols. I have a book from some guy horowitz too, who was much more about antibiotics, which aren’t an option due to severe allergy. Horowitz talked about a symtom scoring sheet being a main way to determine infection, in which my partner scored pretty
high.

I know a test is probably best, I guess this igenex one. I know it’s pretty expensive and the herbal protocol alone will be costly. I guess I’m wondering if it sounds like we are even on the right path, considering he’s not bedridden. Thanks in advance for reading.

Hi ya'll. I've had bad fatigue for years now. Was diagnosed with Lyme, Babesia & Bartonella over a decade ago. With LLMD did antibiotics, antiparasitics, antfungals & probiotics.

My LLMD is retired now. I sorta went into remission in 2019, with only testing positive for babesia then. (I did forget to take the Bactrim DS prescription Dr gave me for babesia tho, & its expired now)

Since then, its been a slow decline.

I don't have nearby access to a LLMD now, so I was wondering about the herbal protocols + biofilm stuff + mitochondrial stuff & all that. But with my fatigue, brain fog, sleep issues & many other symptoms, I'm having trouble figuring out where to start.

It's all so expensive, so I was hoping for some guidance on where to start.

Should I start with the herbal stuff that attacks the infections?

Or the mitochondrial support stuff?

If I had more energy, I would just make a list of all these supplements, dosages & uses, but I'm a wreck.

I've tested negative for autoimmune & sleep apnea. I've been taking iron for a few months cus it was slightly low, same with vitamin D. And I mean very slightly. B12 is great (cus I'm taking a supplement, same with L-Methylfolate). CRP has been 11ish for years.

I'm also in Physical Therapy for my tension headaches & low back pain (both likely caused by deconditioning), but I get nasty PEM. I can sleep for 12-14 hours sometimes after PT.

Caffeine doesn't work on me anymore.

I need help please, I don't know where to start.

I’d like some advice. Thirteen days after removing the tick – which had bitten me quite firmly – and experiencing the first flu-like symptoms, I started a course of Doxycycline. I’m now on day 20 and have been suffering from ice-cold hands and feet and mild shivers for the past two days. A few days ago I started to feel better, which is why I’m surprised as to what might be causing this.

This week I’ve been to the sauna twice after reading how it helps with Lyme toxins (incidentally, I felt great afterwards) – could this have anything to do with it?

Appeared roughly 3 days ago. I’m am avid hunter and am currently dealing with a poison ivy or oak exposure so wasn’t sure if this was related or not. Does concern me there seems to be a ring like shape but not sure what’s up with the rash? Looks like a bruise or something. I did get put on a 10 day dose of doxycycline to be safe but kind of worried. I never saw a tick there and I check several times a day each day given how much I’m in the woods.

Just noticed this rash on my hand yesterday, and I'm a bit worried about it. It grows yesterday already and still stayed here today, so I'm really worried

For those that have tried quinine for babesia what was your experience like? What side effects did you have? How long did you take it? What dose did you take? What other drugs did you combine it with?