Not even for testing My heart problems are insane did anyone else had heart problems all the time? I mean skipping alot every minute and doing weird stuff but ecg are clean.. And wich co infection is mostly te culprit?

Can i get to 100 procent normal again?? Read my last post for all my symptoms.

Does anyone else also have hands turning purple?

I need help asap.

In June of 2024 a nasty little tick bit me (I named him Jimmy after one of favorite nurses.) I never saw the tick or had a rash. A month after the bite I was so sick with flu like symptoms I thought I was going to die at home alone. The fever was unshakable. I got better and I was so relieved. 10 days later I was in the ER with chest pain and a very elevated and erratic heart rate. It took 7 days to diagnose it as Lyme Myocarditis. I had to have a temporary pacemaker. I was in the hospital for 12 whole days 4 of which I was being pumped with liquid antibiotics.

They told me I’d make a full recovery in 3-6 months. Sadly it’s just not the case.

I’m 8 months out.

I’m 35 / 245 lbs. I was very active before the Lyme and 20lbs lighter too. I’ve always been curvy so don’t come for me. I’m dealing with enough. My heart itself is in great condition- I know because I have the bills to show it.

But I’m struggling.

I’m still fatigued. I can never get enough sleep. I get palpitations near my period and when I’m sick… even with a cold. Palpitations are not death sentences, but they are anxiety inducing and I feel like they tire me out when there’s a lot of them in a day. Everything seems hard and has me short of breath.

My body is soooore. Hurts even. My muscles are so rigid and stiff. I’ve had more massages this year than any other year combined. They all give me tips and tricks. They all say it has to be related to the Lyme. I’m stretching everyday, using heat pads and hydrating. My back is especially sore. I’ve tried getting more active and it’s hard to not injure myself. I’m still going to the gym twice a week religiously. But even just walking takes it out of me. So now I’m just gaining more weight. Food is life rn. It’s the only time I feel good.

I’ve seen a nutritionist and I start physical therapy soon.

I’m crabby because I don’t feel good. I’m scared this is the new normal. I’m young. My partner and I wanted to start trying for a family but being overweight and already exhausted and sore with palpitations seems like a tough spot to start.

My drs said I had a pretty serious case. But I could use someone to relate to I think. There’s not tons of info out there on long term myocarditis.

And maybe I could use some encouragement too. Happy to give some back!

Are you out there struggling myocarditisians?

Hi All, For those of you who took lumbrokinese along with a anti-malarial (atovaquone, tafenoquine or both) along with antimicrobial (zithromax, doxy, etc), I am looking for information on your general prognostic. How long long did it take to see improvement and how long did you stay on the lumbrokinese? Also, what was the dosing you took it up to and was the herxing ultimately worth it? Asking for my mom who went to one pill daily (Allergy Research) in December and seems to be really struggling. Thanks for sharing in advance!

So my symptoms are pretty severe during the day, but at night they get unbearable. I get sinking brain sensations, squeezing and jumping in head, when I try to sleep. It feels like my brain is becoming detached or internaly decapitated, my head and my body basically jolts every second, from feeling like I am dying and not falling asleep. I have intense pressure in the back of the head and it actually feels like my brain is being disconnected/cut off from my neck every time I close my eyes. I am terrifed and so tired, I don't know what to do.

Sometimes things are tinted blue or yellow.

EDIT: other times colors seem to vibrant/vivid

Hello, I got bit by a tick and received a target from it when I was young I tested negative at the time but I have many symptoms that align with Lyme- I asked my old doctor and she ignored it but I’m actually worried about it is there anyway I can get tested again?

So, as I've posted already, I have extreme problems tolerating any type of medication, herbs, and so on, because I react so strongly to anything I take. I cannot maintain a normal protocol, because I feel so horrific about a week into anything (and i mean ANYTHING) that I stop with everything, and this has been going on for five years. I started things so many times, so many times, I even got a really, really good LLMD, but I couldn't maintain even her protocol, because I feel horrific any time I take antibiotics, not to mention antiparasitics or, my worst enemy, biofilm busters.

So now I've decided to go with an herbal route, and maybe just one or two herbs at the same time, and just a few drops to see if I tolerate that, but as soon as I got to ten drops of Japanese knotweed and Cryptolepis, I felt horrible, and I stopped again. As a biofilm buster, I was only taking Natokinase, because I cannot bear anything else. I get a reaction so severe that I can't stand up, and I can't afford that, so I've been taking Natokinase or nothing at all, and I've been taking five to ten drops of Japanese knotweed and Cryptolepis, and three days on, eleven days off, some Artemisinin. n Never more than 750mg per day in those three days, usually only 500mg per day.

I wonder, is a case as chronic as mine, so five to ten years old, with severe neurological involvement and systemic involvement and autoimmune reactions even (I have ANA 1280, a severe autoimmune reaction), is a case like that even treatable by only herbs, and how do I ever get to a normal dose? I see people taking five milliliters of Cryptolepis three times a day, that's like 50 times more than I do right now, and I can't tolerate even my now dose, so how do sensitive people ever treat things? Can I alternate days? Can I take meds one day and not take them the next to clear my body a little? I feel like I'll never get to the appropriate dosage, and the small dose that I'm on now, of course, isn't killing anything.

I just want to feel better, and I don't know what to do, I'm so sick of this, it's been six years.

My main symptoms are head pressure, instability, disequilibrium, dizziness and vertigo, brain feels like its being sucked or "vacuumed" into the neck, brain feels like its liquidifying or having steel wool on it, painful and numb arms on both sides,some swallowing problems when lying down, pushing and pulling sensations in head, brain "sloshing" around, like it was in a fishbowl, feeling it when upright/moving, feeling "hungover", not right in the head, burning headaches, like the brain is on fire or covered in hot glue, dysautonomia, exhaustion, flu like, chills and sweats and extreme weakness/tiredness.

My LLMD is starting me on the below protocol to treat babesia. Looking for tips/what to expect and alternative treatment options you may have found helpful for Babesiosis

I am 6 months post infection and main symptoms are joint pain, extreme fatigue, hands and feet falling asleep, tinnitus, night sweats, major brain fog. I am a breastfeeding mom to an 8m old an active 4 year old so need to fight this and not let it win!!! My symptoms have intensified and started to scare me the past month.

Protocol: Atovaquone (malaria drug) Azithromycin Probiotic 100billion CFU Embrace HR/MF (a natural depression/anxiety prescription) Cats claw Omega/DHA Turmeric Magnesium

Starting these two antibiotics here soon, I'm wondering if this combination helped anyone get better? And what do I need to expect from the herxes?

I've had very thin stools these past couple years which I figured was caused by all the antibiotics and my gut etc. These past few weeks my stools have had a very strong sulfur type of smell. I could never smell very well after breaking my nose as a kid but can definitely smell this strong smell when I go.

If you haven’t read my other posts I have Lyme, Bart, Anaplasma. I started having derealization feelings 4 years ago when this all started. I find when I’m having a bad day symptom wise, my mind really starts to go into dark thoughts. Am I ever going to get better? Am I going to just lose my mind and never come back from it? Will I make it to see my kids grow up? Then my mind starts thinking “this doesn’t feel real, is this really my life?” Which scares me even more because DPDR is not a good feeling. It makes me feel crazy. Any insight on this? What’s causing it? Anything to help? These diseases suck so much. I miss my old life.

Anybody tried this before, like the lHealifeCo brand or anything else. Does it really remove toxins, any side effects?

I decided to try the “herx test” until I can get tested for Lyme & Co. I started about 2 weeks ago and have been slowing increasing the drops as directed. Last Sunday I felt ill and had a mild vertigo sensation. I think I was up to 15 drops. I got very intense sensations in both arms and my fingertips(especially thumbs) similar to the pins and needles or prickling I experience occasionally. It was a bit different, though, more like a million micro needles embedded in my skin and sort of burning. This lasted around 24 hours with approximately 10 hours being the most intense. The rest of the week was the usual joint/muscle pain occasional prickling until yesterday. I hadn’t sleep well (the norm) but went to my afternoon art class. I took hot tea and water with Samento (now up to 25 drops). I mostly drank the tea, drinking my water on the long drive home. About halfway home my head felt indescribably weird, a mixture of pain, fuzzy numbness, tingling? Hard to explain but it also spread to my neck which stiffened and I was almost dizzy- really felt OFF. Like I shouldn’t be driving. When I got home, I was so uncomfortable standing and had to lay on the couch with a towel rolled up under my neck. I took 2 Tylenol but it lasted for 4-5 hours anyway. Today, I drank the water very slowly and with lemon. I keep adding water so as to dilute it. I just feel like my normal shitty self. Wondering if I should stop? Also, when you test do you stop taking herbs and if so, how long before you test do you stop? I believe I was infected around 2008 when I lived in some tick infested woods. That’s when all my health problems started. My dog had it twice and we lived there 7 years, hundreds of bites and a couple of atypical rashes for me. Just trying to figure out the best test for undiagnosed Lyme and I also need to test for mold exposure. Appreciate any advice. I’m 50 and tired of suffering and also worried about dementia. Thank you if you actually read all this!

I have been doing Lyme treatment for a while, since May. Recently I started a more aggressive protocol, and while physically hard, I think emotionally I took a hit, too. I’ve been in more situations where it’s been harder to mask symptoms. And at the same time, I have been taking in stuff from friends/society that hasn’t been helping me.

The straw that broke the camel’s back was having autonomic episode of dizziness and weakness at work, then going to the same pharmacy I’ve been going to for months where there is a new pharmacist who decided to not fill my Zofran prescription because it said “take as needed”. He thought I had left and laughed with a technician about how my doctor “must be old” and that he “hoped I didn’t need it”. After a rough drive back, I decided I was tired of having Lyme and that I was going to have a Lyme-free day.

So I didn’t take my meds or supplements and did what I wanted. I drank tons of strong caffeine and did everything I wanted to in a day, ignoring break-through dizziness and fatigue. In the evening, I went to a friend’s party where I did as many shots as I wanted.

But like Cinderella, at some point my carriage turned into a pumpkin. I awkwardly fell down the stairs (luckily everyone was drunk at that point already and not concerned). I got super dizzy and had to leave without saying good bye. And just like that, my Lyme-free day was over.

Today I had the opposite of a Lyme-free day, I had autonomic symptoms so bad that my resting heart rate was in the 90s-110s laying down. The dizziness that forced me to leave the party worsened, making me unable to sit up for hours.

The tl;dr? As much as I wanted it to be so, there is no such thing as a Lyme-free day when you have active Lyme disease. And denial is a hell of a powerful drug!

Have you ever tried not having Lyme? How did it go?

Anyone else have this? It’s my biggest issue right now.

I’ll have weak arms or legs or pins and needles - I’ll notice my stomach is extremely bloated. Once I go poop or burp or fart a ton, it all goes away.

Anybody else??

Better yet but I'm on the right path now and set backs with mold and I hired some bad drs and also at one point I gave up for a bit but I'm on way back to healing

It's been over 20 years since my initial infection... It disabled me throughout my childhood, adolescence, and young adult life...

And now I (33F) am ready to reclaim my life and body back for good.

I have made tremendous progress that I primarily connect with weight loss and a clean, low-carb diet. There are many other things that I do that also helped and still help substantially, but diet has been the most profound.

So, now I am about to try something else... something I haven't read about as a treatment for lyme borreliosis and babesiosis...

I am going to starve it out.

...

I have been preparing for an extended fast in an attempt to attack the infection via autophagy.

The length of this fast will depend on my percentage of body fat, electrolyte levels, vitals, and overall well-being.

I am seriously intend to fast for a month or maybe longer.

During my fast I will consume high pH water supplemented with electrolytes (such as 40k volts drops and salt), and light array of b-complex vitamins, NAD and NR supplements, an omega supplement (to help with the absorption of the former), and possibly other immune boosting vitamins/cordyceps. I will also supplement with creatine, which will help assure my muscles are holding on to water and may hopefully minimize atrophy when combined with light exercise. If I must consume something, I will have small amounts of miso or green tea. I will also continue to take my prescribed blood thinners... my lyme is connected to recurring blood clots in addition to a whole laundry list of neurological and physical symptoms.

In preparation for this fast, I've been transitioning into a strict keto diet. I have had the most success against lyme with clean and whole-food dairy-free keto dieting. The diet I am transitioning into now is dairy-free and mostly plant based with the exception of eggs and small amounts of fish, but it will be an entirely plant-based keto diet during the few weeks prior.

I have also been taking steps to boost my immune system. I eat a colorful diet rich in nutrients and a wide variety of fermented foods. I have been taking immune boosting supplements, but am transitioning and tapering down to the lighter supplement regime I will continue through the fast (B- vitamins and many other supplements can be harsh on the digestive system if taken on an empty stomach).

I also do light exercises. Any exercise that begins to approach the vigor I would like (or if I simply bend over) causes POTS symptoms. If I overexert myself, I experience a whole relapse, resulting in me being bedridden or hospitalized. During my fast, I will at least continue with my 3+ mile daily walks, and I hope to include as much dance as my body will let me... I will begin to push the envelope with exertion alongside a high protien diet following my fast.

I will have baseline blood reports for comparisons, but I wish I had an LLMD that would include borrelia, babesia, and other co-infection levels before and after. Hopefully, I can find one soon.. if this extreme experiment makes a significant difference, I would want the data from my personal case study to be usable.

When I actually "start," it will depend on my blood levels and body fat percentage. I will be observing Ramadan and may start my extreme fast then. The length of the fast will also be determined by my biochemistry.

I'll be keeping a log, noting my progress, symptoms, and various data points.

I am risking my life, but with proper precautions, I am pretty certain I will survive this... but, at least any suffering experienced during this time will be my own doing as opposed to Lyme's.

...

[[DO NOT TRY THIS!!]]

I am not a doctor. I do not know if this will work for Lyme. I do have other reasons why I want to go to such an extreme... So, with whatever you do, know and get to better know yourself, make educated decisions, and drink more water.

EDIT: I have also been overcoming mold toxicity (~6 years). I believe my diet changes have also helped with this affliction.

In July I went to urgent care with what I now know was a Mast Cell Activation Disorder/ histamine flare. They happened to test me for Lyme using a line blot. It came back with 3 bands present P58, P41, P23. The doctor at urgent care said that while it wasn’t a typical positive it could show a past infection or a long term infection.

I few weeks later I followed up with my family doctor and have him that test to look at. He told me he had no clue how to read it but not to be worried that he would do further testing. Fast forward 6 months later I had to push him to test me bc he “forgot” to add it to my bloodwork last time. He ran a total antibody EIA and it came back negative. So of course he’s happy about that, I also had many abnormal results from my blood and urine tests that suggest kidney issues, inflammation and possible autoimmune activity…but “my labs look great”.

My question is based on the line blot should I peruse this further? I want to find a different family doctor but is there a specific type of specialist I should be looking for to look into Lyme if I need be? I’m so frustrated because I’m chronically ill and things are obviously not okay. Sometimes it’s so hard to keep advocating for yourself (thankfully I have an amazing partner and mom and dad who are willing to support me in any way I need) but completely being dismissed by a doctor again, it just really got to me. I need some suggestions for next steps so I can take the weekend and come back with a renewed spirit. I appreciate all advice in advance :)

Are there any telehealth providers that can order an IGenex test?

Hello friends, (Lyme, Babesia, Bartonella, & Anaplasmosis)

Do any of you struggle with extreme reactive hypoglycemia? After I take certain supplements like milk thistle, I become like really shaky and filled with adrenaline. I also become ravenously hungry. It feels like an adrenaline pump/ blood sugar crash at the same time. Almost like going into a panic because I’m so starving. “Hangry” feeling times 1000.

Does anyone know what’s causing this or a workaround? Because I need to take milk thistle and dandelion root to support my liver during the die off, but they both cause that extreme adrenaline/ blood sugar crash. It seems like some weird adrenal insulin resistance, because I tested my blood sugar during the adrenaline/ shaky/ panicked/ starving episode, and my blood sugar was 105.

Does anyone have an insight into this?

Thank you!

Is it even lyme at this point most my issues are weird pulling on the head dizzy sensations, eds type symptoms etc vertigo, what do i do now?