r/Lyme

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.

After going hiking, on two separate occasions, at the beginning of July I found a tick attached to my scalp and it had been there for 4-6 days. It was engorged and slightly larger than a pencil eraser. Unfortunately I wasn't able to save the tick for testing. Symptoms started immediately after removal and I was able to get 4 weeks of doxycycline, 100 mg twice a day. The tick was removed on day 6 (with hike #1 = day 1) and I started the antibiotics on the morning of day 10.

On day 14 I started experiencing neurological pain - sharp shooting pain in my brain, hands, fingers, feet, toes, etc. I have also experienced heart fluttering, brain fog (slow cognition), cheek & lip twitching, and pain behind my left eye. Headache, head pressure, and fever all improved after a couple of weeks on doxy but the neurological symptoms persisted to varying degrees. I have been off of the doxycycline for 10 days now and am still having neurological symptoms and the headache, pressure, and brain fog have returned.

Today is day 46 - is it too late to do an additional 4-8 weeks of doxycycline at 400 mg a day (double the original dosing)?

Can I combine the doxy with herbs? I already take lumbrokinase so I am planning on doubling my dosage of that if I start herbs and resume antibiotics.

Are there any other antibiotics that would be more appropriate for these symptoms? So far I have found doctors worthless and would be ordering from an online pharmacy. I would probably use TelyRx or All Family Pharmacy, I don't think I can wait a month for an overseas pharmacy.

There aren't any reputable LLMDs in my state (Kansas). I looked into scheduling a phone appointment with Dr. Marty Ross but he can't write prescriptions for people outside of Washington state.

Can anyone recommend a competent LLMD that offers virtual or phone consultations?

I'm desperate and terrified. I live alone and don't have any help or support. I would be extremely grateful for any guidance or advice. Thank You.

I’m trying to get blood testing done. And I wish you could just walk into a blood testing center and order the blood test you want covered by insurance.

And I also wish you could do a 10 minute interview process before paying for a doctor. Because so many things could be worked out in a short conversation that let you know you shouldn’t be seeing that doctor. Yet you have to pay hundreds or thousands of dollars just to sit down and talk to these people.

Anyway …

I want to get different blood tests. A general baseline blood test, but also some added things like electrolytes. And I just want help figuring out the names for different blood tests and how to retrieve the information.

I want Lyme testing, but I don’t want the lab to just give me a generic Lyme screen. I want a copy of the actual results and the specific assays performed.

And obviously, I want something from the ILADS perspective.

Can you help me think of anything else to get tested for?
Can you help me communicate this to a physician?
Because chances are, I’ll be seeing a general physician who doesn’t even know about any of this stuff having to deal with lyme, and better yet it doesn’t believe in it.

I just wanna have some bloodwork done for myself and also before I go to specialist. Unless you think that’s a bad idea? I’m open to discussion. Tysm :)

CBC w/ differential
CMP
Magnesium
Phosphorus
Urinalysis
HbA1c
Lipid panel
Blood pressure
Lyme testing — [your requested testing approach]
Review age-appropriate cancer screening

I feel like I get dehydrated so easily.
So I wanted to get a blood test taken one day. Two days later. Then another two days later.

And then try that on three different weeks.

Just to demonstrate the different fluctuations that my body goes through in someway.

But maybe that’s going to out of my way.

I’m also trying to gather information on only for specialists for my own guidance but to build a disability case.

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.

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

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 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?

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?

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!

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

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?

Wanted to share this video for anyone interested in mind body healing and regulating the nervous system. I got very ill back in 2022 bed ridden sick with Lyme for years. Tried all the treatments and ultimately this was the only work that’s helped me. I think these 4 are the best in the space I really love this video they did. If this resonates with you and you have any questions about what program I joined and want other resources I’m happy to answer any questions.

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, 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?

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

I'm trying to decide between the BCA1 Broad coverage assay panel or
the 4IB (4 ImmunoBlots) from IGeneX.
My symptoms are fully present, so I don't see the value in FISH testing considering I know the infection is active.

I don't mind spending the money as long as it's reliable testing so I can finally start non-blind treatment.
I have Medicaid and just asked my LLMD (Dr William Rollow) to send a note to my PCP to request prior authorization for IGeneX testing. I don't trust him to help me to be frank.

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.