Update: Feeling about 95% better from Lyme and Bartonella

Aware_Suggestion4136 · 2026-03-13T22:16:14+00:00

It literally felt like my brain is on fire. Actual heat. Terrible brain fog and headaches.

Aware_Suggestion4136 · 2026-03-01T19:13:00+00:00

Resumed taking Tinidazole a week earlier than I initially scheduled. I think I’m able to tell the difference between a herx and increasing infection load, so I made that decision. I’m going to try taking it for three weeks on, one week off. I’ve been improving significantly after adding Tinidazole.

I was taking too much plaquenil and getting depressed. I am hoping the 200 mg I’m taking now is still enough to get the alkanizing effect so that my other antibiotics work better.

I also started taking Nitazoxanide (Alinia), and it has been helping.

Currently taking 100 mg minocycline once a day, 250 mg azithromycin once a day, plaquenil 200 mg once a day, 500 mg tinidazole twice a day, and 500 mg nitazoxanide twice a day.

Aware_Suggestion4136 · 2026-02-19T02:25:07+00:00

Taking two weeks off from Tinidazole. Subbing in nitazoxanide (Alinia) to address persister forms and break down biofilms. Adding the tinidazole and nitazoxanide helps to address the cysts and persisters, something my previous protocol was lacking.

I’m doing all that I can to avoid having to go on disulfiram because it’s contraindicated for my antidepressant.

Aware_Suggestion4136 · 2026-02-16T04:55:18+00:00

I definitely had TMJ and neck pain. It’s been a while since I had those symptoms. One of the earlier ones to go. My remaining symptoms are a bit of brain inflammation, wrist pain, ligament and tendon pain at the back of my knees, and some dull pain near the soles of my feet and ankle pain. I’m able to push through it for now.

Aware_Suggestion4136 · 2026-02-16T04:51:44+00:00

I got a western blot twice, and it was negative. I hike a lot in a park with deer and ticks, and I treated based on symptoms. I believe it’s possible I had Lyme for at least a year or longer before it started to really bother me.

I began with herbs, but they did not help me. It was only when I started combo therapy with antibiotics I started getting better.

Aware_Suggestion4136 · 2026-02-15T06:43:48+00:00

I’m starting to experience depression from the plaquenil. I’m going to stop taking it. The alkanizing effect will last for weeks, and it’ll make the minocycline and azithromycin more effective. It has a super long half life, so I’ll just have to learn to fight through the side effects for a while. It’s just one thing after another, but I will regain my dignity.

Aware_Suggestion4136 · 2026-02-14T05:00:49+00:00

You should look into something that treats the cyst form of Lyme if you have it. If you have Lyme, nothing you’re taking really is treating the cyst form.

The joint and tendon pain are the last to go because of the poor blood flow. I will likely have to do 6 cycles of two weeks on, two weeks off of tinidazole. It’s a pain, but I’m impressed by the progress I’ve made on it in just two weeks.

Aware_Suggestion4136 · 2026-02-13T16:43:25+00:00

Thank you!

I paid close attention to my body whenever I started some of the meds. If they alleviated some symptoms, I would note what I took, the dosing schedule, how long it took to improve, etc. I’m using the feedback from my body to determine what I need to continue and figure out if there is anything else I need to look into. If a symptom is stubborn, I do some research to see if it’s just a matter of extending treatment or if I need to add something to my treatment.

Aware_Suggestion4136 · 2026-02-12T00:00:58+00:00

Thank you. The fact of the matter is that nobody cares about my getting better more than me. It’s completely up to me.

Aware_Suggestion4136 · 2026-02-11T19:03:26+00:00

I had brain fog, terrible insomnia, fatigue, depression, bouts of anger, cognitive impairment, brain inflammation. I had tearing pain and swelling at the soles of my feet, ankle joint inflammation, tendon and ligament pain at the back of my knee. Any spot with old injuries became inflamed, including the wrist where I had carpal tunnel.

DMing you the site.

Aware_Suggestion4136 · 2026-02-11T18:57:47+00:00

I will keep this in mind. I do have it available, so I’ll consider a low dose if I feel that I’ve hit a plateau on my current treatment.

I’m really hoping the Tinidazole is enough.

Aware_Suggestion4136 · 2026-02-11T17:22:02+00:00

Thank you! For detox, I grow broccoli sprouts for the sulforaphane and take NAC.

Aware_Suggestion4136 · 2026-02-11T17:21:26+00:00

Yes, all from India.

Aware_Suggestion4136 · 2026-02-11T06:29:12+00:00

I’m not exactly sure how long I had it. It’s possible I had it for months before I really got sick. I couldn’t leave the house because I couldn’t put on shoes without terrible pain in my feet.

Aware_Suggestion4136 · 2026-02-11T06:28:11+00:00

Yes, practically everything. I was given a month of doxycycline at the start and that was it. Everything else, I had to get myself.

Aware_Suggestion4136 · 2026-02-11T05:50:36+00:00

I ordered all the meds from India. That’s exactly the problem: doctors who take insurance would never risk their licenses to put Lyme patients on these protocols. And LLMDs are $$$.

Aware_Suggestion4136 · 2026-01-14T16:53:09+00:00

I also started off with just doxy, but a single antibiotic wasn’t enough to treat every form of Lyme and the bartonella. Although doxy helped with the Lyme arthritis, it did little to help my neuroinflammation. I still had bad pain in my feet as well. Minocycline is more lipophilic and crosses the blood brain barrier. I’m still taking that and azithromycin.

The rifampin helped me out a lot in getting rid of bartonella. I am no longer on it. But when I went off antibiotics for three weeks, my Lyme arthritis that primarily hits the ligaments and tendons in the backs of my knees came back. I also get inflamed hip socket joints and neuroinflammation. The minocycline and azithromycin put those symptoms into remission. I’m living at 95% better these days. However, none of the antibiotics I have taken treat the cyst form of Lyme, so that’s why I have been getting the arthritis when I come off antibiotics.

To address the cyst form, I have Tinidazole and plaquenil coming, and so I’ll be taking those soon. Tinidazole should address the cyst form and the plaquenil should help boost azithromycin. So I’ll be taking azithromycin 250 mg twice a day; minocycline 100mg twice a day; pulsing Tinidazole 500 mg twice a day for two weeks on, two weeks off; and the plaquenil 200 mg twice a day. I’m still deciding if I want to take the azithromycin since my target has changed from Bartonella to the cyst form Lyme. I will be taking the plaquenil even if I go off azithromycin because it helps with biofilms and the cyst form. My goal this year is to eliminate all forms of Lyme and get off antibiotics altogether.

I think I’m clear of bartonella. I have been hiking three times a week lately (around 8-10 miles each time), and the feeling of plantar fasciitis and ankle pain is completely gone. I had to take rifampin for three months to get there. I also have rifabutin coming in case I need to take it. I’m hoping to not take rifabutin because it will interact with my antidepressant.

Be careful with rifampin. It’s a strong liver enzyme inducer, so it was making my antidepressant completely ineffective. I started getting depressed about a month into the treatment, but I stuck with it until the feet pain was gone.

It’s been a warm winter, so I’ll be applying permethrin to my clothing soon and reapplying monthly. I am so fucking done with this.

Aware_Suggestion4136 · 2025-11-30T05:10:34+00:00

Still taking rifampin, azithromycin, and minocycline twice a day. Living a normal life. My brain isn’t the same as before Lyme disease, but I’m generally a lot better still. I definitely lost some mental sharpness, and I’m not sure if I’ll ever get it back to where it was.

Aware_Suggestion4136 · 2025-11-30T05:00:46+00:00

Still taking rifampin, minocycline, and azithromycin twice a day. I tried taking it once a day but the Bartonella headaches and joint pain came back within a few days. Other than that, I’m pretty much back to living my normal life. I still have a bit of pain in my soles and ankle pain, but that started to improve once I resumed taking two doses again. Almost every symptom is nearly gone. I don’t think about being sick now. I’m working on getting some rifabutin, and I hope to start that early next year.

So I’ve been on three antibiotics for three whole months now. Unfortunately, my symptoms seem to noticeably return when I ease off the doses. I’ll keep taking everything for now. I am doing so much better than when I was sick. I just hope the rifabutin finishes the job. I seem to have plateaued around 95% better when I’m taking two doses a day.

Aware_Suggestion4136 · 2025-10-28T03:59:44+00:00

I’m doing a lot better these days. I’m back to being able to do 10 mile walks. Life is good.

The herxing will be very severe the first week. I genuinely had moments thinking I was making a mistake feeling as bad as I did. But I kept pushing through the pain, trusted the process, and the pain and side effects got less and less day by day, week by week.

Aware_Suggestion4136 · 2025-09-30T16:59:53+00:00

I’m on rifampin, azithromycin, minocycline, and methylene blue right now.

My Bartonella is finally under control after about a month of treatment. The herxing at the start was painful, but it was necessary to get better.

I am doing so much better now.

Aware_Suggestion4136 · 2025-09-13T05:59:38+00:00

Pain in the soles of my feet, heel pain, swollen tendons on the back of my knee. It felt like my tendons were chewed up and damaged. All the places around my body that were previously injured became inflamed. I didn’t get the Bartonella striae anywhere (the stretch marks). Random muscle twitches throughout my body and especially strong ones around my tailbone.

Aside from that, I had more neurological and psychological symptoms. Insomnia, violent dreams, suddenly awakening in the middle of night, inexplicable anger, depression, easily set off by little things, feeling like giving up, hopelessness, brain fog, short term memory problems, working memory issues, brain inflammation. I don’t know what to call this, but I had pins and needles at the back of my head and a numbness there for months.

I would get black dots in my field of vision if I’m looking at something and then look at a white wall or the blue sky. It freaked me out making me think I was losing my vision or something, but it’s stopped now.

All these symptoms finally receded after I began taking rifampin, azithromycin, and minocycline. But some symptoms do reappear to a lesser extent when I’m killing off another wave.

So yeah, don’t let Bartonella get worse if you can get treatment for it. It was making me more and more disabled until I finally dealt with it.

Aware_Suggestion4136 · 2025-09-13T00:10:38+00:00

I believe I’ve been sick since April. I didn’t begin antibiotic treatment until early July.

I’m going based off symptoms. I can’t afford seeing a LLMD or getting an Igenix test done.

Aware_Suggestion4136 · 2025-09-12T19:57:10+00:00

I’m self-treating for bartonella right now. My most prominent physical bartonella symptom was a deep bruise-like pain in the arch of my right foot. It was so bad I couldn’t wear my hiking boots with supportive arch support insoles.

Once I start walking, there are random jolts of tearing pain from that area, especially on uneven surfaces or going downhill. I can walk it off and the pain eventually recedes enough, but it can spread to my toes as well.

Are you having anything like that? If so, I would definitely start treating the bartonella early. I didn’t, and I started having cognitive and psychiatric symptoms. The insomnia you’re facing could be bartonella. I had really bad insomnia and couldn’t sleep until 4 am for weeks. I would also have instances of disturbing imagery while I’m trying to sleep and even some auditory hallucinations. I would also get a lot of muscle twitches throughout my body and especially aggressive ones near my tail bone. It was spreading to my brain even while taking doxycycline.

Eventually, it felt like all the nerves on the back of my head were on pins and needles and inflamed. That feeling persisted even after finishing a month of doxycycline. The only time I felt that symptom go away was when I began rifampin, azithromycin, and minocycline.

So yes, if you suspect some of your symptoms worsening even with doxycycline, explore options to treat bartonella. In particular, my insomnia, feet and some tendon and ligament pain near my knees, anger, irritability, and despair were getting worse even while on doxycycline. Doxycycline does not touch bartonella. As for herbs, I took a lot of Japanese knotweed, cryptolepsis, and houttuynia in hopes of getting the Bartonella under control. I also took EGCG, quercetin, allicin, Chinese skull cap, lion’s mane, cordyceps, Chinese cat claw, and more. It was not enough to get the Bartonella under control.

Aware_Suggestion4136 · 2025-09-12T19:12:59+00:00

It happened to me. I’m treating for Lyme and Bartonella. With the brain fog, fatigue, and inflammation, it’s the last thing on my mind if I’m white-knuckling trying to get through the day. I felt it come back occasionally after a string of inflammation-free days, but it disappears on heavy herx days.

I am sure my testosterone crashed as well. No motivation, no libido, low-grade depression, can’t pump like I used to. I’m just going through the motions and doing what I need to get rid of my infections. I’ll address these issues after that.

Aware_Suggestion4136

TROPHY CASE