Hey, I've had mostly gut issues with this Lyme for months and couples of days I had spleen area pain that I had not experienced before and today I woke up with enourmous kidney pain and feel so sick.. i have some temperature too and tongue is white. Can anyone relate and how did you get better?

I recently tested positive for bartonella. I also have alopecia areata. I was wondering if bartonella could be causing a lot of inflammation and hurt on my immune system that maybe it could have triggered the alopecia areata? If so, could autoimmune issues get better once bartonella is treated?

Currently treating Lyme and starting babesia meds. I’ve improved a lot, but what I’m left with is this shortness of breath when I walk, my head feels off when I exert, I’m exhausted all the time, I occasionally have night sweats and my feet are freezing cold. I get raynauds and earlier on I had chillblains on my toes (malarone actually made the foot symptoms a lot worse)

My legs often ache and it feels like I have a vice around my ankles. The cold feet make my feet sore, but not in a burning way. More like if I and walked barefoot through snow.

I know anything foot related seems to be attributed to bartonella, but I don’t really seem to have the hallmark presentation or any other classic Bart features like stretch marks. I also tested negative for Bart many times on all the best tests but positive Lyme and babesia. Can Lyme or babesia be causing this? Has anyone experienced this?

Hi hello, I received my iGenex testing back. I was tested for babesia and bartonella. Good news, no babesia in sight. Bad-ish news? Bartonella might be there or could have been there?

My suspicion is that this confirms i had an active infection at some point, and somewhere along the the line, there was enough overlap treatment to clear the active infection and show up as antibodies.

For context, I started treating for Lyme disease for the 2nd time about 7-8 weeks ago. I have been on doxycycline/amoxicillin, nystatin, NAC, monolaurin, biofilm neutralizer, low dose naltrexone, oil of oregano, and a few other herbals/supplements. I got tested for bartonella a week ago, so approximately 6 weeks into treatment with this regimen. I’m about to start methylene blue this weekend.

Thoughts?
Ps, I do finally feel like I’m getting better. For about 5 weeks I did not feel any improvement. In fact, I felt worse. But now I’m having some pretty decent days… I pray they stick around.

Hey everyone! I am in month 7-8 of trying to figure out how my body shifted from being a pro athlete training 10 times a week to now mostly staying at home due to symptoms I have.

If I am mistaken and these symptoms have nothing to do with lyme in your opinion, let me know and sorry in advance.

Soo in February I had a weird viral/bacterial infection that was treated with antibiotics, certainly one of the worst infections I’ve had, but nothing major.

After around two weeks after I recovered from the acute symptoms, I still wasn’t 100% okay but I started training.
One day my body just acted weird, so weird I could never imagine someone could feel like that.
I felt kinda “weightless” in the legs and the lights in the hall and everything felt so weird and overstimulating.

From then on everything snowballed and continued until now 7-8 months later. I recently did a lyme blood work and igm and igg came down negative although I saw that there could be false negatives.

I am stuck in this mental haze/disoriented/drunk/high/spaced out state and I feel just so strange.

The only thing that seems to lift this is when I take an simple otc anti inflammatory for my headaches and when I get sick from another virus that. I mean I feel like shit from the virus itself, but it’s like this mental haze lifts.

If this sounds familiar please let me know so I can further dig into what is happening to me.

Wondering if anyone here has seen Dr. Christine Green in Palo Alto and would be willing to share their experience?

I have an appointment with her coming up next month and am wondering what to expect. I do know she tends to run late, which is OK with me as it seems it’s because she takes her time with each patient. I was impressed with her NP, who spent nearly 3 hours with me on telehealth.

I have a long history of Lyme that went undiagnosed for much of my childhood and was treated by Dr. Stricker as a young teen over a decade ago. I did pretty well for several years after treatment with him, but have had a resurgence of symptoms over the last few years very similar to those in my childhood. It’s been crippling. I’m still waiting on my Igenex and triple draw PCR results, hopefully coming in the next week. I’ve been following the new research on Lyme, including Green’s, and I’m really hoping she can help me find some answers. I’m anxious and exhausted.

Thank you in advance 💜

Seems like my symptoms are coming every 4 weeks and lasting for about 10-14 days then dissipate again. The last 2 months it has been to the day. A glimmer of symptoms start on the 13th and are in full swing by the 15th. Doesn’t seem like a coincidence esp that my menstrual cycles are now 30 days almost tot he day as well. The symptoms seem to arrive on or the day before I ovulate and then stick around through majority of my luteal phase. Any other women relating?? Also may be important to note that I actually don’t think I’m ovulating most months. I think my body is trying to but my estrogen dominance has been an issue since getting Lyme and I know they work really closely together.

I’ve read before this can be a thing with Lyme. I have all 3 B’s. Been on babesia herbs since March and that’s gotten immensely better I think. Still in beginning phases of my Lyme herbs and yet to hit bartonella hard yet.

Although the symptoms hurt and are uncomfortable and really get me down mentally whenever they come back - I’ll take a bad 2 weeks of every month instead of every single day of my life, which is what it used to be. Hopefully it means there has been real progression in my treatment.

Hi everyone, I just found this community as I just pulled that^ off my leg today. Eastern Kentucky, US. Not sure how long it was attached. I have an urgent care appointment in an hour but I'm wondering how hard I should push for 10-20 days of antibio vs. the one-time.

hey

I've had Lyme for 3 years and I've been treating it for 1 year. I'm followed by a Lyme clinic in Germany, and they put me on an herbal/supplement protocol. Here's roughly what I take (I might be forgetting a
few things):

- Artemisia annua
- Phytobox 2, 3, 4 and 5 (herbal blends + probiotics)
- Cryptolepis + Cripto-Plus
- Omega-3
- Q10, L-carnitine, Energy Multiplex
- Milk thistle
- Alpha-lipoic acid
- Curcumin
- BioDisrupt (NAC, berberine, serrapeptase)
- Medicinal mushrooms (maitake, cordyceps, shiitake, reishi)
- Transfer factors
-Vitamin C, Vitamin D3/K2
- Methylguard Plus (methylated B vitamins)
- Magnesium taurate

Overall it's been helping. My symptoms have gone down, even though sometimes they suddenly come back 1000x worse, which I assumed was herxing.
During spring and summer I had almost nothing. I didn't take my protocol seriously over the summer. Then right when September started, I got really sick: I kept catching viruses back to back for 1–2 months, often with fever. And these were real infections, not my usual Lyme symptoms. In between the viruses, my Lyme symptoms were worse than usual.

I've also been having a lot of Lyme flares lately. It's weird because spring and summer are usually when I feel better and have fewer flares.
The other weird thing is that I hadn't been this sick in 3 years (with viruses) I was told that's because the immune system gets suppressed or something like that when you have Lyme.

So my questions:
Could all of this be one big herx, even though I wasn't really taking my protocol over the summer?

Does getting sick and having fevers like this mean I'm getting better, like a sign my body is finally fighting back?

Also, my symptoms look a lot like an allergy: my eyes are a bit swollen and painful, they water a lot, my eyelids feel hard, I sneeze all the time, I'm extremely exhausted (like I'm about to pass out), and I have brain fog.

Has anyone experienced something similar? Thanks 🙏

I will start next week and i am curious about anecdotes.

I’ve had Lyme for roughly 10 years now, (i’m 19F) i’ve seen multiple doctors and tried dozens of methods, i’ve done IV, hyperbaric chamber, antibiotics courses, diets, pt, etc. I was helped by IV but we couldn’t afford a long enough treatment to get it out fully and oral meds didn’t do much after. But I was reinfected on my birthday this year in january, which worsened my symptoms tenfold, and lucky me, we didn’t catch it in time… again. But I also am pretty much immune to doxy from how many doctors gave it to me for so long. I was diagnosed with POTS and MCAS this year, although I believe i’ve had them for at least two and they just worsened when I was reinfected. Could they be solely from lyme? Is there anything that should be done differently about them? Currently i’m taking midorine 5mg twice daily and famotidine 40 mg twice daily (my MCAS primarily affects gyno issues) I was wondering if anyone had recommendations for anything else for these or if anyone had similar experiences

Följer denna för tips & råd, erfarenhet av utbyte egna berättelse samt studier . Dela gärna med er för mer kunskap inom dessa 2 framgångsrika billiga alternativa metoder mot parasiter & cancer

Hello, Im just started Buhner protocol treatment, I have 1:1 alcohol extract of: Cryptolepis, Sida Acuta, Alchornea,Artemisin, on label it says 0,5 ml 3X daily, that amount will be good or should I increase it to 1ml?

Also I want to minimise alcohol amount, is boiling 10-15min in 96C degrees will be good for this purpose? Thanks you for your help everyone

So, I found a bottle of organic castor oil in my bathroom cabinet that my MIL gave me a long time ago for my feet. I looked up what you can do with castor oil, out of curiousity, because I was definitely not listening when she gave me the bottle ans thought maybe I could make a muscle rub with it or something. It has a suprising amount of benefits, is anti-inflammatory and helps with lymphatic flow. So, I decided to try a castor oil pack on my abdomen. I woke up the next day feeling pretty good and thought maybe it had something to do with the CO but wasn't sure.

I have lyme and bartonella that was undiagnosed for many years, have been treating with herbs and supplements since April. Have had many ups and downs, of course and it's always unpredictable. I tried a pack again and woke up feeling better than I have in a long time. So, I started using the castor oil on my neck, which is ALWAYS hurting, even with yoga, massage, salves, RLT, it's such a pain. I have a homemade salve with frankincense that does help a bit, but it doesn't compare. I've put it on my feet overnight, used it on my face. ​​if you had told me to use castor oil, I probably would have laughed about it and thought it sounded weird. It is now a vital part of my protocol. I'm up before the sun, I feel motivated and things feel possible.

I'm sure it's a combination of things because my protocol is extensive. But, it might help someone else. It's pretty low risk and I have had nothing but positive results.

Anyone else get these? Been drinking cistus for a few days and now along with these I feel drained and itchy

Is anyone here currently on disulfiram?

I was getting ready for work this morning and happened to find a tick stuck in my back. As I was in a rush I unfortunately didn’t get a picture of it and flushed it immediately. I’ve had ticks before but nothing that’s remained as sore as this is. I don’t have time today or tomorrow with work to make a quick dr visit but just wondering if this is normal irritation? Thank you in advance

I have severe Long COVID /ME and after being told by multiple people that Tlab was the gold standard tickborne test, I went for it and recently got a positive Borrelia FISH result back.

I spent the past week trying to work out how much to trust it, and the more I dig, the less I do. Here's why:

Tlab reports don't actually show the pathogen on the image

The two "representative images" on my report show red blood cells and green dots. Borellia is 3-4x times the width of a cell, and wide enough where it should light up. I've reviewed reports from other patients and they are the same.

My LabCorp results were negative

I'd had LabCorp's modified two-tier test (VlsE/pepC10), and it was negative. Standard testing is bad at catching early Lyme, but in late Lyme (arthritis, neurological, cardiac) modified two-tier testing catches 96-100% of cases in multicenter studies. Source VlsE also covers the main European species, which matters because I spent a lot of time hiking in Germany.

My math doesn't work out

With 1,000 people like me, using numbers that are deliberately generous to TLab:

• 30 have an active infection; 970 don't.
• LabCorp catches 90% of late infections, so only 3 infected people test negative, alongside about 960 uninfected people.
• Assume TLab catches half of real infections and wrongly flags 1 in 10 healthy people. That gives about 1.5 true positives and 96 false positives among the LabCorp negatives.
• So about a 1.5% chance my positive is real.

Even with much more pessimistic assumptions (higher exposure, LabCorp missing half of late infections, or TLab flagging only 3 in 100 healthy people), I still get roughly an 80-95% chance it's a false positive. For it to be a coin flip, I'd have needed to be about 65% sure I had an active infection before testing.

There's no published evidence of how often Tlab is positive in healthy controls

A diagnostic test's value depends on its false-positive rate, which you can only measure by testing healthy, unexposed people blind. There is no published study doing that for TLab's blood FISH, and the company does not share sensitivity and specificity numbers (confirmed via phone rep).

No one can actually back up why it's considered the best test

Every time I asked why TLab is the best, the answers were the lab director's background, the expensive confocal microscope, the fact that it's "molecular," and clinicians saying they trust it. None of that equals a false-positive rate. A better microscope makes faint signals easier to see, but that includes nonspecific probe binding, debris and autofluorescence, so it doesn't make a test more specific. The call is still a lab worker judging "signal above background."

Similar tests have failed when checked

• A modified microscopy method for spotting Borrelia and Babesia in blood was tested blind in Norway. It flagged structures it called Borrelia or Babesia in 85% of healthy controls with no tick-bite history, and PCR couldn't confirm them. Source
• A commercial phage-based Borrelia PCR gave a positive signal in 21 of 23 healthy controls. Its developers suggested healthy people might carry Borrelia; independent reviewers concluded the test lacked specificity. Source

The "it hides in tissue" argument doesn't make sense for positives

Late Lyme is rarely found in circulating blood, which is why blood PCR for Lyme has poor sensitivity. If the organism mostly lives in tissue, a blood test should rarely find it even in infected people. A test that rarely finds real infections needs near-perfect specificity for a positive to mean anything, and that's exactly the number that's missing. The tissue argument explains why a TLab negative wouldn't mean much. It doesn't explain why a positive should be trusted.

To defuse some objections:

• "Antibody tests are insensitive." True early on, before antibodies develop. But not true in late disease, which is what most of us are dealing with.
• "Healthy people can carry Lyme too." Asymptomatic infection exists, but those people still make antibodies; that's how we know about it. If every positive in a healthy person gets explained as hidden infection, no result could ever count against the test, and a test that can't fail can't be validated.

At the end of the day, Tlab seems to be revered because it provides the highest positive rate in a diagnosis-seeking population, not because of any published lab values or scientific rationale.

I recently had two galaxy diagnostics test done. One had a 1:32 positive antibody for Bartonella but the other test was negative. Also, could not detect the bacteria. I am experiencing many symptoms as well including brain fog, fatigue, hair loss, body pain, neck pain, jaw pain, numbness in hands and feet, burning in mouth, anxiety and depression. My doctor started treating me with herbal medicines, but I’m just wondering whether or not it’s possible or likely to have bartonella if only the antibody was positive once and the bacteria wasn’t detected?

Hello, sick for years and on maintenance treatment, I was about 90% better, but following a severe relapse in July of this year apparently due to strong heatwaves, I am back on strong treatment because I have debilitating symptoms again (Arakoda / Azithromycin / Mepron), I wonder if I should take anti-fibrin enzymes like Serrapeptase, Lumbrokinase, or others ? Because I've never taken any and I have no improvement after a month of treatment, I apparently have all the symptoms of Babesia: POTS, derealization, brain fog, internal heat, fatigue, strong heartbeat and palpitations with minimal effort, and others... and I wonder if bacteria in nests can cause these symptoms and not be reached, or if I can already improve without enzymes for now ?

Now I’m experiencing gastrointestinal issues, sore joints, chills, headache and lethargy. Did anyone else have a bite that looks like this? Trying to decide if it’s maybe Lyme or possibly Covid.

Does anyone have experience with Ulta Labs? Do their tests have good sensitivity? Wondering if these tests on their panel are okay or if I need Igenx which is a cost concern as I think I need to pay out of pocket

This is one of their Tick panel tests:

1. BABESIA MICROTI AB (IGG, IGM)W/REFL TITERS
2. Bartonella Species Antibodies (IgG,IgM) W/Reflex (Es) To Titer
3. EHRLICHIA CHAFFEENSIS AB (IGG, IGM)W/REFL TITERS

4 .Disease Antibodies (IgG, IgM), Immunoblot

I was bitten by an adult female black legged tick in Maryland during spring of this year and got a 3.5” perfectly round evenly red rash, no bullseye. Have been feeling horrible ever since. After much arguing back and forth with my provider because I “didn’t have a bullseye” she finally ordered a western blot by Quest which was negative.

Thank you in advance for any advice

Posting this again as the info seems to be needed -

Keep fighting -

Peace+Love

I was bitten by a tick in early July. After developing various symptoms over the following several weeks, I tested positive for Lyme disease and was prescribed 28 days of doxycycline (100mg twice per day), so bite to treatment is about six weeks.

Because some of my symptoms hadn’t fully resolved, I asked for an additional four weeks of doxycycline, so 8 weeks in total. The majority of my symptoms improved, but it’s now been about 10 days since I finished my last dose, and some symptoms have either persisted or returned, but not to the same severity as before treatment. I’ve since started taking herbs and supplements, including Japanese knotweed, cryptolepis, and cat’s claw.

I’m curious about other people’s experiences with early-stage Lyme treatment:

• After your initial course of doxycycline, had all your symptoms completely resolved by the end of treatment?
• If you still had lingering symptoms or some symptoms returned after finishing antibiotics, did they eventually resolve on their own without further treatment?

I’ve spoken with a couple of people who had confirmed Lyme disease and took standard four weeks of doxycycline relatively early (within 1–3 months of the bite). They told me they still had lingering symptoms after treatment but eventually recovered without additional antibiotics over time.

However, I’ve also seen many posts here from people who say that, when treated early enough, their symptoms had completely resolved by the end of their doxycycline course.

Looking to hear about your experiences. Thanks!