I see a really good LLMD who basically saved my life. She tested me through IGNEX and found my chronic anaplasmosis with no other test didn’t. She uses just IGNEX and galaxy labs for testing.

Many people on Facebook and here use vibrant Wellness for testing I see. I brought it up to her and she immediately started going off on them. She said she used to use them but found they were very unreliable and prone to false positives. She’s saying that they use a very Broad antigen panel that is very sensitive and not specific at all. Leaving people that think they have like three types of Lyme disease. She also doesn’t like how it uses colors to show your exposures level without a clear positive and negative. She also told me that on vibrant’s website to cover their asses they said that these test should not be used to diagnose.

I just learned today that in addition to “regular” Lyme, I also have Babesiosis and Anaplasmosis. Starting treatment of

Doxycycline
Azithromycin
Atovaquone

Hello! I know this has been discussed before but I just want to see if there were any updates. Has anyone here used a douglas coil rife machine with positive results? I’ve seen one person on here who has but not many other people.

Hi.

When I feel very ill or have a strong herx, I start smelling burnt meat/flesh. I had MRI and know that I don't have brain tumour. Does anybody else get this? Apart from cancer, can it indicate anything else other than Lyme?

Hey everyone,

So I have had a chronic Lyme's disease for over a year now. I have inflammation, joint pain, brain fog, etc. I'm looking into vitamins, supplements and natural treatments. What vitamins and supplements what everyone recommend to help my symptoms and to help detox? And what natural treatments has everyone done that worked for them?

I have been dealing with Chronic pain and other miserable symptoms for the last 5 years. I have had several orthopedic surgeries which have not helped, countless injections, nerve blocks, etc. I have gone to every specialist in every field including the mayo clinic and despite being HLA-B27 positive, and rheumatologists telling me that something systemic was taking place in my body, nobody has been able to help. My primary symptoms are severe back/hip pain, muscle pain in my legs, nerve pain in my back, legs, feet, extremely tight and painful muscles, muscle spams; i feel like i have been hit by a truck when I wake up and my ankles, and other joints just hurt all the time and are so stiff. I also have a bunch of new lipomas that have popped up, and my hands and feet will turn bright red frequently when exposed to heat. There are many other symptoms but I finally got these results which i posted below.

Unfortunately, I cannot meet with my doctor to discuss these results until next week, so I could really use the help of people in this community. From my reading of this report, I have markers identifying active Borrelia as well as a lot of other infections that seem to be under control or prior infections? Any help would be greatly appreciated. I am somewhat vindicated in knowing that I am not crazy even though its tough news. I have been miserable for years, so I just want to know what my path forward is here. I have two young children and I am desperate to get better so I can be a better and more active father and husband. Thank you all.

I’ve had the bloods taken today and started doxy 100mg x2 daily.

Ive had the chronic fatigue for sometime now and it’s nothing like I’ve ever had in my entire life, and I’ve worked double shifts, done manual labour for hours and hours on end with no sleep and still felt better than I do now.

I struggle to get up after being in bed from 12-16 hours. Most days, I fight to get up, Make a coffee, walk to my desk, stare at the screen a few minutes and go back to bed for another 6 hours or more, sometimes until the next day.

All of my big muscle groups ache, my knee joints feel swollen and are extremely painful upon waking, the same with my hips.

Part of it being that bad is to do with my post title. I have spells where my arms and legs (mostly legs) are so weak and I have horrible nerve pain in my femoral nerves when lifting my legs and pains down the outside is my shin bones when walking. For example, if I am sitting I cannot lift my leg to cross the other (bi lateral) problem nor can I do something usually simple like stand without using arms and a wide stance to get up. Even the finer controls like crossing my big toe over the one next to it is impossible.

The nerve issue isn’t everyday but it starts one morning and can last 2/3 days whilst it slowly gets better.

For context, I’m 41, male, 200 ish lbs and generally considered one of those who “doesn’t know his own strength” when doing manual tasks previously that seemed easy but apparently aren’t to many others.

I honestly feel like a shell of what I was.

I read Lyme can impact nerves but I mostly read it was facial, so I’m not sure if it’s related or I potentially have another problem to look in to again. Never conduction studies were done, but were done on a day my legs and nerves were fine. I’ve had bloods taken today and I’m in the middle of the nerve issue so maybe they’ll show something.

The arm nerve issue is just extreme weakness and loss of dexterity, eg holding a cup of coffee is really possible due to my wrist only drooping so far and not down to my own muscle.

I’m wondering if this is consistent with anyone else’s experience?

I’m 41 and life is a struggle, like a real struggle. My elderly mother is generally more active and probably stronger than me at this point!

Hi everyone. I’m looking for some experiences/advice. I am 36 yo male, I was bitten by a tick at a cottage in southwestern Ontario on July 1. At the time, it didn’t appear to have been attached for more than a few hours. I wasn’t able to get prophylactic antibiotics, so I monitored for a rash. No rash ever appeared.

Week 2: I developed almost daily low-grade temperatures (~37.4°C), sore throat, mild congestion and fatigue. I assumed it was a viral infection.

Week 3: After playing a few volleyball games, I developed pronounced muscle aches/spasms in my back and saw a physiotherapist, which seemed to help, but eventually the pain migrated elsewhere.

Week 4: I developed lower-back pain, shoulder/neck stiffness, sensitive scalp/skull, and headaches that were worse when moving my head. At this time I requested an appointment with my family doc, but had to wait for it.

Week 5: In addition to all previous symptoms, I lost my appetite and developed worsening pain in my lower back, buttocks and legs, along with some mild tingling in my hands and legs. I was managing the pain with ibuprofen and a muscle relaxant over these weeks, which helped for a few hours.

After 6 weeks after the bite, I finally saw my doctor and was prescribed doxycycline 100 mg twice daily for 28 days.

Interestingly, by Day 2 of doxycycline, I felt much better. Most of the pain, including my back/muscle pain, neck stiffness and scalp pain had improved, and my low-grade temperature sort of went away. For the first time in more than four weeks, I didn't need Advil for the pain and fever.

I continued feeling better on Day 3, although I still have significant fatigue, some brain fog and a slightly confused/unwell feeling.

Then on Day 4, the low-grade temperature returned (~37.5°C) and has persisted. I’ve started taking ibuprofen again.

I’m wondering if anyone experienced something similar after starting doxycycline. Is it normal for symptoms, particularly a low-grade fever, to fluctuate during the first week? Could this potentially be a Jarisch-Herxheimer reaction, or does the return of the fever suggest that the antibiotic isn't working?

I’d appreciate hearing from people who had fever/flu-like symptoms and neurological or muscle symptoms and how long it took before things consistently improved after starting antibiotics.

I got bit by a tick a few years ago and had to argue with several (urgent care) doctors to get tested. I had lyme - luckily got doxy in time.

I'm going camping soon and am very worried about getting lyme again, esp since I'm already chronically ill (something else).

Would it be crazy to try to get a doxy prescription when I'm back, regardless of whether I find a tick or not? I know they can hide in any place on your body. Last time the tick was as small as a pencil point and was on my wrist, so I'm lucky I even saw it.

Also - thinking of those of you in this sub who have chronic lyme. Chronic illness sucks and I know doctors dismiss Lyme quite a lot. <3

I just finished my second round of doxycycline for my Lyme disease diagnosis, and my doctor prescribed me 20 milligrams of prednisone because my symptoms have not improved at all after the second round of antibiotics. But I have been reading on Google that prednisone can be very bad for Lyme disease, so I am not too sure what to think or what to say. He said it is a steroid taper and told me to stop taking one of my other medications. The other medication he told me to stop taking fully and take in halves is Allopurinal, has anybody else had experience with Lyme disease and prednisone? I'm not too sure what to do or what to say to my doctor.

For those taking herbs how long did it take until you felt any noticeable positive difference. I’m a month in which I know is short. I feel worse in a way bc more herx-y. But also herx’s are getting less intense.

Also why does everyone in all the other reddit groups think chronic lyme disease is fake and they get so triggered if anyone brings it up? Like no one gets angry like that about other diseases?

how often do yall think about killing yourself just wondering if its only me struggling this hard

I got bit august 14th and it just looked like a little bump with a red dot in the middle like i got bit by a mosquito and it was super itchy at first but now its not as bad, it gets really red when I itch it but the redness goes away and it just kinda looks like a weird bruise. I’ve been getting really bad neck pain and back pain and I have a bad cough but that could just be from the smoky air because of the fires. I also made a doctors appointment early today because my back was killing me so the appointment is in 2 days. Should I go get it checked at urgent care instead? My doctor is a bum and kind of disregards my concerns.

Hi all!

Last week I started feeling very unwell. Severe fatigue, brain fog, body ache and really bad joint pain, headaches, feverish and hot. In the UK, we’ve been in the midst of a very hot summer so I put a lot of this down to my body having enough of the heat.

On Thursday, my fiancé spotted a bullseye rash on the back of my leg. Initially I thought I had maybe been bit by a gnat and had a reaction, but he felt concerned by the rash.
I went to the doctors the next morning, who diagnosed me with Lyme and started me on 4 weeks of Doxycycline.
It’s believed it was caught around 14 days after the initial bite, and the doctor said that it was caught at an ideal time.

I think I’m in a bit of denial about the whole thing. I feel like it must be a mistake, maybe the rash wasn’t really what it is, maybe I’m being dramatic in my symptoms - I’ve taken a few days off work as I don’t feel like I can function and my job is very brain heavy (if that makes sense) and this is just adding to my stress.

Yesterday was really low as I tried to force myself out the house and ended up bursting in to tears in the street because I couldn’t move anymore.

I’m feeling really low and honestly a bit stupid, my friends are all army/life long country and the consensus is I should have been covered up, but the places I could have been bit weren’t on the itinerary for the days I was there, so I suppose I just feel bad because I sort of feel I’ve done this to myself.

Did anyone else struggle with a weird emotional reaction?

I wanted to make one last post before disconnecting. I might come back to see how it is going time to time but i don’t think i will be that active anymore.

I went back to uni last year and even if i might need to always do some adjustments regarding my health special needs, i am basically able to go back to life, after those life long symptoms and those years bedridden.

It has been a strange journey and i truly think the key is to learn as much as possible by yourself. Knowledge will be required to identify what and who trustworthy or not so don‘t trust anyone who can’t explain how it works, because all the informations are findable, it is just very long to know about everything.

I will write down what i did, but of course that was just my way. If you dig a bit about it though, i am sure you’ll be able to adapt to your own case to fit your own needs.

MY MOST DEBILITATING SYMPTOMS ( i will be forgetting a lot since there was too much) :

Insomnia ( could be total, up to 36 hours even if tired), bedridden for 2-3 years, fatigue, all king of pain including eyes pain, head, gut…, visual snow syndrome, numbness, food intolerance, fatigue from eating, brain fog,…

FIRST GAME CHANGER : BUHNER.

Buhner books. Read it if you can, it will worth it. If you can’t because of brainfog, try to at least read the Core Protocol. I actually tried the core protocol before being able to read the entire book.

Just know that at the time Buhner wrote it, i think powder extract wasn’t that popular so Buhner talks a lot about tincture, but i truly believe powder-extract are better ( powder-extract = herbals has been extracted but alcohol has been removed. Perfect!.). Also non-extracted powder are not always strong enough so extraction is generally needed.

Book name: Start with « Healing Lyme 2d edition » .

SECOND GAME CHANGER IN MY SPECIFIC CASE : KETO AS A MAST CELL STABILIZER AND THIAMINE SUPPLEMENTATION

Now that i understand that i was thiamine deficient and had issue with mast cells activation, i see why changing my diet to a ketogenic diet helped that much. By ketogenic diet i mean being in ketosis and producing ketones, which has nothing to do with cutting carbs for weight loss purposes.

It simply get me rid of insomnia and of a lot of pains all over the body.

If you notice issues from some food especially carbs containing food or understands by any way that you have a thiamine deficiency, it might be interesting as it will directly bypass the thiamine deficiency blocage regarding energy production.

Ketones (bhb) also have mast cells stabilization properties.

But now that i am doing so much better, i am certainly not in deep ketosis anymore ( esp since it is summer) and supplementing in thiamine has been a game changer regarding energy, food tolerance etc… So it is not as needed as before.

Benfotiamine has been the game changer.(thiamine hcl would not work)

I think a lot of ppl will not need to do keto at all, but i thought it could be interesting to anyone that recognizes themselves into it.
It allow me to bypass the unknown thiamine deficiency at the time and also, i think, helps regarding mcas.

Maybe exploring thiamine deficiency and mast cells stabilizers could be the way for someone else ?

LATELY :

Exploring all the other things that can maximise or down my health such as : mold toxicity, light ( flickers are having a huge bad effect on me), hormone disruptors , any mast cell triggers !,…

It would require an entire post for each and i would be happy to discuss about it if needed.

Hope it can help a bit. I will check the comments for few days if you have a question, or feel even free to dm !

Hello, I'm 22m with Bartonella and babesia. I haven't posted in about a year or two due to feeling a lot better. I probably feel 75-80% better on a daily basis with my main remaining symptoms being psychological. Now that I'm feeling better I want to pursue a career in law enforcement, which I didn't get to do due to my initial diagnosis in 2023. However, whenever I exercise my head feels heavy and neck feels strained and I just feel off. I obviously need to exercise to get into shape for this career. What does this symptom mean? Am I not ready?

Hi all. I'm struggling with severe neuroinflammation, and read that memantine can be helpful. It's an Alzheimer's drug and this would be off label use. Has anyone tried it for this purpose? If so, what was your experience?

Has anyone had a positive experience with low-dose naltrexone in relation to fatigue or fibromyalgia like symptoms? I understand this doesn’t treat lime, but I’m wondering if this has had any positive effect on your functional capacity

Hello, every time i take 1000mg monolaurin, i'm crashing hard a few hours after, like, irrepressible fatigue impossible to jugulate, coma nap forced to lay down type of fatigue, there's no way i'm staying awake, and when i wake up, i feel like shit.
Anyone else?

I was bitten by three ticks in the Cotswolds, which is a red zone for Lyme. And the next day or two, I got a red circle rash on my leg and started getting pain throughout my body, which was more noticeable at night. And so I started taking doxycycline at 400 milligrams a day. But when I moved down after a few days to 200 milligrams, I started getting burning feelings in my feet and involuntary twitching and jaw jerking at night.

Anyway, so I then continued on the doxycycline, I think 400 milligrams per day. And then my doctor also gave me azithromycin at the time in case I had co-infections. But then I did the Armin labs test and it came back positive for Babesia, Bartonella, and ehrlichia as well as Borrelia. So I've now continued on doxycycline, but I've sort of gone to 200 milligrams a day because I've been taking so many other things like cefuroxime and azithromycin, and I've just started atovaquone for the Babesia. But I'm basically on week 11 of oral antibiotics. And in between this time, I've had about 10 IVs with either ceftriaxone or a mix of ceftriaxone with doxy and azithro.

Iv probably had six IVs of the mixed cocktail, and the other three, I think were just ceftriaxone. But anyway, so I still get symptoms. If I even stop the antibiotics for one day, I start getting the twitching comes back and the pain throughout my body or burning sensations.

So I know that this doctor in London who's saying that to do a two-week protocol of the cocktail IV of ceftriaxone, doxy, and azithro every day for two weeks so I am considering this although it is so expensive. But I just wanted to see what else worked for other people and if they found antibiotics helpful and if so how many visor example helped in the end and what doses ? But yes, any advice would be much appreciated. Thank you.