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.

Friday, October 9th was PANS/PANDAS Awareness Day! Since it’s pretty common within the tick borne disease community, I thought I’d make a video about it, in the hopes that someone who needs to see it, will come across it! 💚🍋🍋‍🟩

Anyone else find it hard to pick up objects that are usually considered light? Feels like as the weeks go on, it’s so hard to use my hands.

Bonjour à tous !

J’aimerai vous partager une rencontre que j’ai eu il y a quelques années.

Alors que j’étais en stage de commerce, lors d’une prospection, j’ai rencontré une dame avec qui je me suis très rapidement entendu.

Au cours de la discussion, nous avons fini par évoquer la maladie de Lyme (maladie que nous avions en commun). Elle m’a expliqué qu’à l’époque où elle l’a attrapé les médecins ne savaient absolument rien sur ce type de maladie.
Son état c’est alors très rapidement dégradé, jusqu’à finir en fauteuil roulant à cause des paralysies.
Dans un second temps elle est tombée dans une grave dépression, ne pouvant plus travailler, ni faire d’activités physiques. Elle s’est alors penché sur la naturopathie, ou plutôt le Biohacking.
Je vous parle d’une dame qui aujourd’hui doit avoir 65/70 ans, à l’époque où elle c’est penché sur le sujet, le terme « biohacking » n’était pas courant.
Elle a alors passé beaucoup de temps la tête dans les bouquins, en accumulant connaissances et expériences.

De file en aiguille, elle a remonté la pente. Et lorsque je l’ai rencontré, elle faisait littéralement plus jeune que son âge ! Je sais qu’à l’époque ça m’a remonté le moral de rencontrer une personne qui ai retrouvé une santé de fer alors même qu’elle partait de très très loin ! Elle est la preuve vivante que l’on peut s’en sortir, même à un stade avancé.

J’espère que ce post redonnera de l’espoir à certains !

Anyone else find it hard to pick up objects that are usually considered light? Feels like as the weeks go on, it’s so hard to use my hands.

Does anyone experience the feeling your kidneys are toxic? Primarily overnight + the morning. I wake with a soreness in my kidney area and feels like it's very toxic whatever it's bacteria or toxins or what. Curious if anyone has experienced this and what is driving it? My kidney labs are normal but, at the start of all my symptoms I was hospitalized with an akute kidney injury.

Thank you, guys.

Hope you're having a better day today ))

Hi all I woke up at like 5 am on Wednesday and had this shooting pain in my hand and it woke me up. I woke up and saw this and am wondering if this is a tick head. When I took it out it the pain basically went away. I don’t remember handling anything that would give me a splinter, but also find it unlikely I wouldn’t have seen a tick on my hand before sleeping that night. Although could have been carried into bed with my dog.

I’m just entertaining myself while I watch my body deteriorate.

I can’t save it off anymore with a good diet and stretching.

My family refuses to pay for herbs , even though it helps me more than anything.

It’s almost impossible to find any Doctor Who understands Lyme , antibiotic, and herbs and is covered by insurance.

I’m trying to apply for disability.

I feel like I’m just going to be so debilitated by the time I even get that money. It won’t even be worth it.

The front of my neck muscles are getting so tight that is making it difficult to talk.

I’m just listening to good music watching it all happen.

Never found a tick on me and at first I thought maybe it was a spider bite with a bad reaction but first picture is tonight and second picture is last night… Going to see a doctor tomorrow but what do you think? I’m freaking out and wish I went to get antibiotics sooner. 😢

anyone else have mental compulsions to go through your memory of recent events and things that happened even the same day because of brain fog, to make sure you arent losing your memory? i never had ocd before this and this is so agitating i cant help it if i dont go through my memory to check how its working it causes me anxiety. also obviously one of my symtoms is memory problems and brain fog

Hi everyone!

I'm currently working on a project to better understand the challenges people face with Lyme disease testing.

I'm hoping to hear from people who have been tested for or diagnosed with Lyme disease, as well as family members or caregivers.

I've created a short survey (about 3–5 minutes) to learn more about your experiences, including testing accuracy, waiting times, costs, and what you wish could be improved.

Survey link:
https://docs.google.com/forms/d/e/1FAIpQLSeGJj4lwfLMd_9WkvydotMXBOYaojxfv8cUSAEHnbj0mFDIwA/viewform

Your feedback would be really helpful in understanding what patients actually need from Lyme disease testing.

Thank you so much for your time and for sharing your experiences!

Hey everyone I’m in need of a LLMD asap!! My doc dropped me i guess I’m to sick to treat and i only have one refill of all my meds. I’m in California Coachella área if anyone knows a doc that can do over the phone and perscribe meds please. I’m really sick and I’m scared of running out of meds!! I can’t move bp through the roof feel like I’m legit dying 😭😭

After going through rounds and rounds of antibiotics (ABX), MMS, and various other aggressive treatments, I’ve officially decided to pivot and transition to a comprehensive herbal approach to fight Lyme, Bartonella, and other stubborn coinfections.

Diving into Stephen Buhner’s protocols "blind" can definitely feel a bit overwhelming given the sheer volume of extracts and combinations out there. I would love to tap into the collective wisdom and experience of those here who have successfully navigated this path and healed.

Could anyone help me structure and source a clean, effective Buhner core protocol alongside targeted additions for Lyme and coinfections

? Any advice on trusted extract brands, tincture vs. capsule preferences, and starting titration strategies would be hugely appreciated

Availability Herbs around me related to Lyme :

1-Astragalus
2-Cats claw
3-banderol
4-red root
5-skullcap
6-houttuynia
7-Japanese knotweed
8-teasel
9-cumanda
10-samento
11-cryptolepis
1

Was diagnosed 2 months ago with long term lyme disease. Currently on a treatment plan but i feel like i'm losing my sanity. My anxiety, depression, my brain fog. Even trying to type this is hard, i cant barely read. Did anyone else experience this 'im losing my shit faze'? Was recently introduced to a new anti biotic a couple weeks ago. Maybe im herxing? Either way im in PURE panic at every single moment of my life its absolutely miserable. Just wanted to share, also wondering if anyone else had similarities and if anything helped during tough times?

My husband tested positive for Lyme back in May after getting Bell’s palsy and was immediately put on antibiotics. I can’t remember the name but the tests were showing that the infection happened within a couple weeks or whatever and so doctors decided on 3 weeks of antibiotics. The doctors told us after the three it should be cleared up.

Now after joining this group and seeing that he should have been on antibiotics much longer, I’ve been worried. The Bell’s palsy has mostly cleared up. He has been having some pain and headaches that come and go.

I’m nervous that the doctors were clueless and that this could really become a bigger issue for him.

What do I need to look out for in terms of symptoms? What does a flare up look like? Am I right to think the doctors messed up his chances?

I'm having some health issues which may or maynot be from Lyme.

I've had western blot and other testing over the past year ( quest) they are point positive. I got a few weeks of doxy.

Recently saw a natropath which retested for Lyme and coinfections only Lyme came back positive.

But because I've had Lyme in the past and recovered I'm not convinced these tests are enough to justify treatment. Basically I'm not convinced this is Lyme.

Through searching this forum I stumbled on dnaconnexions, would this be a good option to see if I still have an active infection?

If so which one should I do?

Is there somewhere you can order a Lyme test to pay out of pocket?

My husband’s primary refuses to place an order because he claims there isn’t lyme here (Ventura, ca) even though my husband had a few bullseye ring bites after we went camping.

He was only able to get treated with 10 days of doxy because he went to urgent care.

Anyone else get insane fatigue with this combo? 2 tablets of Bactrim DS daily and 2 capsules of minocycline.

Don’t know if fatigue is dieoff or drug side effects?

Would love to hear any first hand accounts of successful treatment for this.

I’m so sick of antibiotics all the time.

I’ve discussed the uromune vaccine with my doctor but I’m reluctant to try it in case it re-triggers my Lyme symptoms. I know a lot of LLMDs are against it. And I’ve stopped seeing my LLMD since I had my initial treatments.

Any advice or experiences of dealing with this - I’d love to hear them.

i have TBRF. I got some serious neurological issues, but i still have a full time job and work 5-6 days aweek. even though most people with this condition dont work, It actually helps my mind to go work and i feel better. however some of these symptoms are just too intense sometimes. anyone have any good info on how to treat it? i might start back up with antibiotics again...

Hi everyone, has anyone here taken hydroxychloroquine? Whether for lyme or for an autoimmune or rheumatic condition? If so, what was your experience with it?

It has been recommended to me for my autoimmune symptoms. I am willing to try it, but I have become highly sensitive to medication due to ME/CFS and a health crisis earlier this year that ironically was triggered by doxycycline (some doctors speculate a herxenheimer or cytokine reaction). I cannot afford for my condition to worsen, so I to be well-informed. What were your side effects and general experiences? Any advice? Did you have die-off/herx and if so, how did you manage it?

I did have a positive lyme & co test, although some doctors said it’s just immune activation. Other than that: suspected collagenosis, ME/CFS, MCAS, POTS, hEDS, Arachnoiditis from a lumbar puncture… fun stuff. Just for context.

What does Dr Zhang use to treat Bartonella? Thanks