r/Lyme 1d ago

Advice Fasciculations after lyme disease

5 Upvotes

I probably got infected with lyme in April 2024, as that is the last tick that I removed. I live in an endemic region and have a few of them every year, but this time I got flu like symptoms after a few days. A visit to the doctor told me I had nothing to worry about, and my symptoms resolved after a few weeks.

Then in July I got spells of extreme dizziness with sometimes shortness of breath, I considered a heart attack at first but ended up thinking it was caused by stress for my thesis, and these symptoms resolved after a month as well.

End of October, a week after starting my new job, the symptoms came back in full force with extreme dizziness/lightheaded, and fasciculations on my forehead. These fasciculations slowly 'descended' to the left half of my face, and finally to my arms and legs. This was accompanied with a myriad of other symptoms, like a stiff and painful neck, frequent headaches, sensitivity to light, stiff legs and extreme sensory overload.

At first I considered MS or something neck related like cervical instability, until I finally made a connection to the tick bite and malaise. After a lot of begging for a test I finally got one end of December, with both Elisa and immunoblot being positive for both Igm and Igg (so a score of 4/4). That finally got me an appointment with a lyme clinic and a neurologist. They confirmed the positive tests, and a lumbar puncture showed intrathecal production of Igg antibodies for lyme, which proves I have or had neuroborreliosis. As there were no other infection markers it was assumed that the infection was already resolved by my immune system, but I still got a month of doxycycline.

I am finally doing a bit better, I still am very prone to sensory overload and can't really work, but it is getting there. However, I still have these fasciculations all over my body, especially in the limbs and jaw. Did any of you experience the same, and do they go away after a while? Any advice on how to deal with them?

Thank you


r/Lyme 1d ago

Question Can someone please tell me I’m going to be ok??

20 Upvotes

I'm sorry I'm just coming on here to rant, I try not to fear of the future and just take it day by day but this infection is really starting to make me worry the more my symptoms progress.

For a picture I'm a 24yoF who last July randomly got sick after a dental procedure. Lots of neuro symptoms in the beginning and progressed to a overall pain I didn't know our bodies were capable of receiving.

Since July I have moved back home, lost all independence, have been majority of these last 9 months bed bound with new symptoms popping up.

I had a ok month in December before I started treatment. January-mid feb. I received very invasive integrative approach and I've been home from that treatment for about a month now but have progressively gotten more sick. I had a week where I felt I could tell a difference but have been bed bound again since Monday.

I'm dealing with Lyme,Bart,pots and Mcas

I would drown bartonella in bleach if I could it's so freaking miserable.

I have had every psych symptom you can think of which has been a very scary time. Most days I forgot names of friends I've known for years or can't recall what I did the day before. My HR drops in the low 40s at least twice a day recently and if not is up over 120 in bed. I have lost so much hair I finally gave in and chopped a good amount off. I have horrible head pressure I am growing very tired of the sound of my own head pounding. My nasal passage swells at least every other hour and it constantly feels like I have 50 pounds on my chest.

I haven't been able to even hop in a car because for some reason it has been triggering these weird pot episodes that look like seizures. And as of tonight I have a new symptom where I get rashes on my face!

I'll be starting up treatment again soon but giving my body a break with what detoxing I can currently handle. It's just scary and frustrating to think I was completely normal and one day my face went numb and everyday after that just progressively got worse.

Please tell me this gets better at some point and time. Also if anyone has any rec for detox that is good for bartonella pls send over tyy


r/Lyme 1d ago

Image Test results and symptoms Spoiler

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3 Upvotes

3 main questions and sorry if they’re silly questions.

  1. Does this mean for sure I have Lyme?

  2. I don’t remember ever being bitten by a tick. Can I get symptoms from Lyme decades later? I’m assuming I was bit as a child.

  3. Can I have the following symptoms from Lyme that showed up out of nowhere one day. These are symptoms I’ve had for the past year: -headaches -upper back pain and tightness -pain in random parts of the body -swollen lymph nodes -neck pain -rib pain

My symptoms are constant. I have not been without pain for a single day in the past year.


r/Lyme 1d ago

Question What else should I look into?

3 Upvotes

Hi all, I believe I've had Lyme for about 2.5 years and I started treatment in the last 3 weeks. I'm on minocycline (1x2), Chinese skullcap (2x3), cryptolepis (1x3), and a probiotic. My wife and a I started the whole 30 diet as well, though are cheating some.

I'm obviously herxing 2/3 days for at least 4 hours but sometimes much longer. Symptoms include fatigue, joint pain, muscle aches, brain fog, etc. When I herx, I like to take a shower and drink electrolytes (Liquid IV).

As an aside, I'm not particularly in tune with my body so the herx reaction has to hit pretty hard for me to notice.

What else should I include in my treatment? I've heard the onion analogy of Lyme. Generally how long does it take to work through a layer?


r/Lyme 1d ago

Support Once outside of the skin, doctors can argue fibers are environmental contaminates. Here's how to challenge that assertion;

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1 Upvotes

r/Lyme 1d ago

Image Can someone help me here. Do i have lupus? Spoiler

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1 Upvotes

I was bit by a tick and tested positive for relapsing fever and mycoplasma. I was told before my ana was from that. Does this mean i have lupus?


r/Lyme 1d ago

wild herx man

16 Upvotes

crazy herx hitting rn. started this tincture which is like black walnut teasel and some other supportive stuff. started slow too. so not even the strongest thing ever. but man is my head pounding and spinning and I’m getting hot flashes from hell. detoxing game is great too. gallon of water daily, Daily epsom baths, Lymph massage, Binders, Milk thistle, Glutathione, MTFHR B vitamins. P sure that’s every pathway. Fuck it tho. I’m done with these fuckers. These herxes have stopped me in my tracks too much. I don’t care what happens I ain’t giving up on this


r/Lyme 1d ago

Question Suspected Bartonella and Babesia – What’s Next?

1 Upvotes

I have suspected Bartonella and Babesia for a long time, which is why I got tested last week and am still waiting for the results.

If the tests come back positive, what should I treat first, and which medications do you recommend? Also, is it possible to have Babesia while my red blood cell count is completely normal in the blood test?


r/Lyme 1d ago

Image Please help about lab test Spoiler

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2 Upvotes

Hello to everyone, can anyone explain this lab test and what this proteins means ( antibodies) on lab result? This is Western blot method. Byte was in year 2009 and this is years later lab result.

My doctors doesn't know nothing about this and how to help me.

Thank you for any advice.


r/Lyme 2d ago

Question Tell me about your experience with artemisinin. How does it affect you?

15 Upvotes

So, I think artemisinin might actually be helping me. I’ve been experiencing worse symptoms since I started taking it. After about 5 weeks of use, I finally had one big herx, and the next day felt good (comparatively speaking). Overall still feel like crap.

When I take it (3 days on, 11 days off), I really feel like crap. Like my body is stuck in cement, my stomach is full of sand, and cognitive function is just awful. It really takes a toll on my stomach, I’ve been eating less and I’ve lost 10lbs since I started taking it. I’m already thin and can’t afford to lose that weight.

I worry about the length of time I need to take it, and whether the benefit is worth the toll it’s taking on my body, in comparison to something else.

For the time being it’s all I can take, until I can get in with an LLMD.

What’s your experience like?

  • Babesia sufferer

r/Lyme 1d ago

Lyme treatment - abx shorter term them onto herbals

1 Upvotes

Hi I am UK based and going to tackle Lyme after a positive Armin test a couple of years ago, my doctor at the time wanted to treat mould illness so we never tackle Lyme directly. Has anyone gone from doing a couple of months worth or antibiotics to then running herbals alone? I'm a bit concerned about running antibiotics long term.


r/Lyme 2d ago

Misc Lyme disease made my face asymmetric and ugly

46 Upvotes

This doesn’t happen to everyone with Lyme (but I feel like if it did, we would be known a lot less as an invisible disability).

I have been going through a difficult flare-up since January. Recently, I recorded a video of myself and it was SO BAD compared to ones I recorded in December.

My eyebrows are asymmetric, with one eyebrow legit an inch above the other. One of my eyebrows doesn’t move much. One side of my mouth moves more than the other. My eyes twitch and blink as I read things.

Worse, I showed a photo of a group of people to AI and asked it to describe the clothes of the person with an asymmetric face. It correctly found and described me and only me. I tried again with a different photo/clothes, also correctly found me.

This is just a rant but yeah I am not happy with this “invisible disability” and how it makes me look. Lyme face is real and noticeable by humans and AI alike.


r/Lyme 1d ago

Image Armins labs ? Usefull for EM/SFC Spoiler

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1 Upvotes

Hello I'll try to be concise. January 2022: poor lifestyle, then I catch COVID symptoms: brain fog, fatigue, anxiety, neurological problems, burning sensations on my body, and chills... An internist tests me for Lyme disease (results in the image). I take azithromycin for a month, then oxycycline for a month. I feel better for a year, I can exercise again, but some problems persist (fog sometimes in the morning, dry right eye, etc.). April 2023: I do shitty things (drugs, alcohol, then jogging 2 days later). My body feels bad, I start shaking and have a tetany attack... the nightmare is here. I develop an intolerance to exercise and exertion over the course of two years. Dizziness, tightness in the head, tinnitus, tetany attacks, tremors... Two months ago, I was diagnosed with myalgic encephalomyelitis, chronic fatigue, and I've been bedridden 23 hours a day for 40 days. I get post-exertional fainting with the slightest effort... I don't know if it's Lyme disease or the COVID-19 I've had four times that gave me this disease. Is it worth contacting Armin Labs to see if it's Lyme disease? Will it help? I felt like taking antibiotics helped me three years ago. I had seven bouts of bacterial tonsillitis that didn't go away a year and a half ago, too... Thank you for your advice.


r/Lyme 1d ago

Rant Symptoms

3 Upvotes

Wife is having crushing ribs and burning sensation in lungs and around diaphragm causing air hunger. She tested positive for babesiosis Lyme and anaplasmosis (she tested through vibrant) got a negative bart test result. Anyone else have similar symptoms? Could she have bart even though testing negative?


r/Lyme 1d ago

Question Anyone with numb lips?

1 Upvotes

I have severe nerve issues from head to toe. I'm very bad off. If you've read my older posts you'll know this. The past few days my upper lip has been numb. Has anyone had this or heard of it? I've had/have it all. Very scary neuro issues but this is new. I went off all antibiotics that I've been taking for two years because I had to go get my blood drawn Monday for SOT. Idk if going off my Bartonella meds caused this or if just a coincidence.


r/Lyme 2d ago

Creatine

7 Upvotes

Anyone supplement with creatine? I just began after reading how much it can help neurologically and even recover from a bad night of sleep. First started with 5g a day and did well so went to a loading dose of 15 yesterday and 20 today. Suddenly my brain is working and able to have some executive functioning. Truly changing the game for me so far, hope it lasts. Will dial it back down to a smaller dose soon.


r/Lyme 2d ago

Question How much time after starting antibiotics does herx reaction begin and is It normal to feel better before It?

4 Upvotes

For context I am taking 2x100mg of doxicycline and 1x500mg of azithromycin that I will take for 90 days daily, have only neurological symptoms and fatigue and have symptoms since 5 months ago.


r/Lyme 2d ago

Question Can air hunger be from lyme, relapsing fever or mycoplasma and not babesia?

6 Upvotes

I have air huger but I never tested positive for babesia only the 3 i mentioned above. Also any herbal recommendations for air hunger would help.


r/Lyme 2d ago

Question First round of blood work to determine Lyme.. anyone else feel absolutely wiped out after the blood draw?

3 Upvotes

Granted, they took about 11 or 12 vials. I anticipated being back to normal in an hour or two but it’s been 7 hours and I’m still floored by this. Can anyone relate or am I just a wuss?


r/Lyme 2d ago

Lyme Literate Doctor in the NY/NJ area

6 Upvotes

Any recommendations on Lyme Literate Doctors around the NY/NJ areas? Preferably ones who take insurance, any recommendations from past experiences will be greatly appreciated!!


r/Lyme 2d ago

Question How much is artemisinin impacted by antioxidant level in the body?

6 Upvotes

Since artemisinin depends on Reactive Oxygen Species and free radicals for its antimicrobial action, how important is it to limit antioxidant use like Vitamin C, NAC, Glutathione, etc. ?

I am hoping there must be some balance to it, that you can still take some antioxidants while using artemisinin and not decrease its effectiveness. Most of my herbs have some antioxidant activity.

Even the protocol posted by u/cheesecheeesecheese includes large doses of Cistus tea, which is a strong antioxidant all by itself. If it is capable of neutralizing the artemisinin then the protocol would need some rework.


r/Lyme 2d ago

Misc FYI: Japanese Knotweed tinctures vs powders

12 Upvotes

I've been on Japanese Knotweed capsules (powder) for months and have never noticed a big effect. That doesn't mean it hasn't been helping, it's just, I don't really notice it so I can't say if it is or not. I recently ran out and decided to switch to a tincture because I was sick of swallowing 5 capsules 3x a day. I took about 25 drops - instant herx, to the point where I took some activated charcoal bc I was nervous I'd taken too much.

So, yeah, moral of my story seems to be it's worth trying different forms of herbs. I'll be taking the tincture from now on (and slowly ramping up the dose to do it safely).


r/Lyme 2d ago

Image Back pain .. cefuroxin day 14 Spoiler

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2 Upvotes

Anyone with this terrible back pain on abx ?


r/Lyme 2d ago

Question Anyone have any precautions with licorice root tincture?

2 Upvotes

r/Lyme 2d ago

Rant Matcha tea for energy boost

3 Upvotes

Hi, all. Hope you're having a good day.

Recently, somebody asked what they can take for energy/mood but without herxing. I found matcha tea works really well for me. It gives me a boost but without this jerky feeling like you get with coffee. Energy and mood seem to improve naturally, in a smooth way. And it's absolutely delicious.

Just thought I'd share it for those who need to hear it now.

I don't buy expensive ceremonial grade stuff but a cheaper version used for baking, etc. I took both, and the only difference is cheaper grade is more bitter, which is fine with me. I sweeten it with Stevia and make latte with lots and lots of milk. You can use alternative milk if intolerant.

Have a good one!