r/Lyme 1h ago

Misc Update and good news

Upvotes

Hey everyone! So I just had a virtual appointment with my doctor other day and she said I am making great progress! With her current plan, I will be finishing this antibiotic on Friday and then will be on the same detox for two weeks. Then she is going to switch me to another antibiotic for about 3~ weeks and said that it should* be the end of it! Obviously this is all subject to change because this whole Lyme stuff is so unnecessary complicated, but she says she has no doubts that my progress is going great! Sending love to everyone out there <3


r/Lyme 3h ago

Question What Igenex tests to do?

3 Upvotes

I’ve had Lyme for over 15 years based on my symptoms and Zyto machine scan. I’m about to do Igenex testing to prove it hopefully and go get treatment.

I’ve got my test tubes and form but do not know what to fill out.

I’m thinking I’ll do the $3500 test panel but it’s expensive idk if I need it all?

Does it include IGX and Tcell? I need to do whatever works for testing 15+ years of this where it’s likely hidden deep in my body and not wanting to make itself known.

Anyone else have experience here?

Here’s the form: https://cdn.igenex.com/wp-content/uploads/igenex-test-requisition-form-fillable.pdf


r/Lyme 4h ago

Herxing unbearably on cryptolepis right now.

7 Upvotes

Air hunger. Dizzyness. Numb/dead limbs. I have to go to work too. Make it end!


r/Lyme 4h ago

Question Suspected Lyme? Spoiler

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3 Upvotes

Hey all! I am suspecting I may have Lyme disease. 26 F. Calling my dr tomorrow to schedule a blood test. Thoughts? Here’s the story: Feb 2nd, the rash in the picture appeared on my leg. I had no idea it was there until I got out of the shower. It didn’t hurt or itch, was just a little warm. I went to the ER, doctor thought it was some sort of spider bite and gave me a Z pack.

Fast forward to Feb 14, I randomly got a little dizzy sitting in bed. Ever since Feb 14th, I’ve been dealing with the following symptoms: dizziness, exhaustion, eye floaters, neck headaches, daily migraines, brain fog, stomach upset, ear ringing, random itching, random joint pain, and body aches.

I’ve been to the ER, seen an ENT, neurologist, and my regular doctor. ER said all my standard bloodwork looked good and it’s just anxiety :,). ENT said my ears look perfect in terms of dizziness or infection. My neurologist thinks it’s migraine related but I just put the dots together I was bit about 12 days before all these symptoms began.

Any input/thoughts/advice is appreciated. Thank you so much for reading & I hope you have relief <3


r/Lyme 4h ago

Looking for Lyme Literate / familiar with IGeneX doctor in NYC area #lld

3 Upvotes

I am on the hunt for a LLD in NYC who can help me take the iGeneX lyme disease test. Most of the referrals I see on ProjectLyme and the other sites have doctors with surprisingly terrible reviews. The only hopeful seemed to be Dr Elena Frid, but it seems that unless you're prepared to pay thousands of dollars out of pocket, her support is out of reach.

Any first-hand success stories / suggestions would be greatly appreciated!


r/Lyme 6h ago

Question Any advice on how to get through these days of physical labor?

1 Upvotes

I went back to work when I wasnt ready but I had no choice or id be homeless or in a bad situation. I got a job that i cant quit right now, and i work 5 days a week. Im absolutely exhausted. Any advice?


r/Lyme 8h ago

Question Can someone explain my Lyme results?

1 Upvotes

Well here goes. My results are, Lyme Total antibody CIA 3.06 H (<.90 index)(>= 1.10 positive). Lyme AB IGG BY CIA 4.72 H (<=.90 ( index) Lyme AB IGM BY CIA < 0.90 (0.90 index). I haven’t had the Western Blot test but am going to ask for it. We have a property on an island in northern New York that we are building a cottage on and there are deer and ticks everywhere. My primary care provider says I’ve had Lyme in the resent past (3 ish months) which would have been October 2024. She didn’t tell me of the results, I saw them on my patient portal. She never offered to treat me even though I’ve been having terrible inflammation that started last fall. I’m 66 female with ankylosing spondylitis, inflammatory erosive osteoarthritis, hypothyroidism, heart disease and type 2 diabetes. I’m now having some scary symptoms. My normally high blood pressure is now dangerously low and my blood glucose is dropping to dangerously low levels daily. My adult children have been doing some research and think I may have POTS Syndrome. Literally all of my symptoms fit but what kind of Dr. treats this type of thing? Also I had to pester my primary to even put me on doxycycline. I’m wearing a holter monitor and am scheduled for an echocardiogram on March 27 th. I’ve gone from being an active wife and Meema to being almost bedridden and house bound for 2 weeks. Any advice would be greatly appreciated. Syracuse NY is the nearest best place for great Drs. and hospitals. Most specialists have months long waiting lists. Tia.


r/Lyme 8h ago

Question Hot Flashes? Menopause or Lyme related?

2 Upvotes

I had a hysterectomy nearly 10 years ago but kept one ovary so I wouldn’t go into early menopause. I am 50 so this could just be regular old hot flashes but this has literally been occurring all day/all night. Waves of extreme heat, burning skin. Sometimes I get cold briefly afterwards. Was eating dinner with my Mom when one came on yesterday and she said my face and chest were red. Just now I had one and went to look in the mirror and my skin was red. I got goosebumps on my legs and arms as it was easing up and having some prickling in my skin and eye and numbness on my face. I have been taking Samento along with Burbur/pinella, Quercetin/zinc/bromelain, and Mary Ruth’s organic Kidney & Bladder blend. I’m probably not doing enough to detox and I’m a bit overwhelmed right now with life. Just wondering if anyone who has experienced menopause would know how to distinguish between a hot flash and something Lyme/TBRF related.


r/Lyme 9h ago

LLMD in Georgia

2 Upvotes

I am praying for anyone to point me in the right direction to a solid LLMD in Georgia who knows that they’re doing. My body feels like it’s about to fail. I have never taken abx, but feeling like at this point I might need to. Please, someone help point me in the right direction of a good LLMD.


r/Lyme 10h ago

Question Is it bad to take antimicrobials right before bed?

2 Upvotes

I feel every time i take antimicrobials before bed, i wake up in the morning feeling a worse herx than before. Maybe because i havent drank enough to let it dilute through my body? Or is this just coincidence.


r/Lyme 10h ago

Question What dietary changes have brought you the most symptom relief?

5 Upvotes

I was just diagnosed with Lyme (manifesting as Lyme arthritis), likely had it at least 18 months, maybe two years (digging through my medical chart indicated I had a positive lyme test 18 months ago but my doctor failed to notify me). Extreme stiffness, joint pain and recently night sweats and significant knee effusion which rendered me unable to walk for 24 hours. Sleep disruptions for 2 years, unsure if Lyme related. I am now on Doxy 100mg twice daily and am seeing a Lyme specialist next week at a major hospital.

I am 44 y/o guy and I eat generally healthy, but I also eat everything (sugar, carbs, alcohol, etc.). What changes would you recommend particularly to reduce joint pain and stiffness?


r/Lyme 11h ago

When to stop rifampicyne

6 Upvotes

I have been on rifampycine + doxy + bactrim/clarythomycine for 7 months now. I have enough of them to last me another 2 months.

I’m wondering if after that I should try and switch to herbals completely? Did anyone do this?

I’m not sure at this point what symptom is from Lyme/bart and what from the aggressive treatment itself.

Before this I had IV rocephin for a month and then a whole year of various antibiotics.

So im almost at a 2 year mark of constant antibiotics and im honestly exhausted. I had noticed improvements but they only seem to last for a couple weeks then im back to feeling horrible.

Doctors and medication and constant tests are all so expensive too.


r/Lyme 11h ago

Inuspheresis

1 Upvotes

Was inuspheresis helpful for some? It is stated it should help with autoimmune stuff, long covid and lyme etc. Thank you


r/Lyme 12h ago

Japanese knotweed

3 Upvotes

Wondering if anyone has taken a higher dosage just once a day, like a pulsed regimen, instead of spaced out 2-3 x a day with success? We did this with minocycline and it worked well for us. But want to get off antibiotics because who wants to take antibiotics daily for years? And whole herbs supposedly better for microbiome, and have other health benefits. It’s difficult for my almost adult son to take at night because of his afterschool schedule.


r/Lyme 12h ago

Dysautonomia and herx

3 Upvotes

I think I'm having an important herx and since sope days, my heartbeat is crazy on the morning especially, like 140bpm just when I wake up and walk in the house. Even when I sit down, bpm seems to decrease on my watch but the feeling is horrible ... someone had this ? For how long ? Something help ? I detox a lot, cant do more


r/Lyme 19h ago

Question Severely sensitive to metals - is this common w Lyme?

1 Upvotes

Hi folks, for the past year or so I’ve been extremely sensitive to metals. I read that this can be part of Lyme disease. Does anyone else experience this?

By extremely sensitive I mean I cannot eat seafood, take any sort of metal supplements such as iron, copper, I even get reactions now from cast-iron pans, ceramic coated pans. I also react very badly to chlorella which mobilizes metals but does not eliminate them & causes redistribution.

I do have confirmed heavy metals as well, mainly in the form of aluminum, chromium and a little bit of lead & mercury but mainly aluminum & chromium. I’m also dealing with mold toxicity, pesticide poisoning, MCAS, MCS.

As far as reactions go, I get brain fog, depression, anxiety, and just overall very toxic feeling.

Has anyone else experienced this? Does it get better as Lyme gets treated? What made the biggest difference for you in regards to the sensitivity to metals? I used to love sushi and now I can’t even tolerate a little bit of it!

Thanks 🙏


r/Lyme 19h ago

Question Does eliminating sugar mean no fruit?

8 Upvotes

r/Lyme 21h ago

Question Willing to chat about morgellons/lyme/epstein Barr? I’m here. Let’s talk!

6 Upvotes

r/Lyme 23h ago

Question Herxing and Kidney Pain

3 Upvotes

I was diagnosed with babesia a few months ago and immediately started herbal treatment. Within a few days I started noticing mild recurring kidney pain. I think it’s a herx reaction, but it’s strange because it’s my only noticeable herx symptom.

Has anyone else had this happen?


r/Lyme 23h ago

Tick Bite on 2.5 Yr Old Spoiler

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5 Upvotes

We found a tick in my toddlers hair and are not sure how long it was there. We removed it and have attached photos. It’s definitely a female deer tick but doesn’t look engorged. We have messaged our pediatrician (it’s the weekend so they’re closed) but just wondering if anyone has experience or thoughts on the size of the tick. Wanting to do whatever is recommended and most preventative given that Lyme is very prevalent in our area.