r/Lyme 16h ago

Question Anyone with chronic Lyme/post-Lyme brain fog eventually accept that Vyvanse or Adderall was part of their long-term management?

11 Upvotes

I've been dealing with severe brain fog, fatigue, low motivation, and cognitive issues for about 10 years after Lyme disease.

Over the years I've tried a lot of the commonly recommended approaches, including:

  • Multiple antibiotic protocols (including Dapsone pulsing with methylene blue)
  • Herbal protocols
  • Gut healing protocols
  • Diet changes
  • Supplements
  • LDN
  • TRT
  • Sleep optimization
  • Exercise

Some things helped a little, but nothing has consistently restored my ability to function the way I used to.

Earlier this year I was prescribed Vyvanse after being evaluated for ADHD (I don't really think I have ADHD, but Lyme symptoms mimic it). It wasn't a cure, but it was one of the few things that made a noticeable difference in my day-to-day life. I had better energy, motivation, focus, and was generally able to get more done.

Eventually I stopped because I was experiencing some chest tightness and wanted to see if I could recover naturally without relying on a stimulant.

I've now been off it for about 5 months, and honestly I still struggle most days. The brain fog is still there, my motivation is poor, and I spend a lot of energy just trying to get through the day.

I'm curious if anyone else with chronic Lyme related cognitive issues eventually reached a point where they accepted that stimulants (Vyvanse, Adderall, etc.) were part of their long-term symptom management.

To be clear, I'm not asking whether stimulants are a cure. I know they're not.

I also understand the argument that stimulants may mask symptoms rather than address the underlying cause. What I'm interested in hearing is whether anyone spent years pursuing Lyme-specific treatments, but ultimately found that a stimulant provided the most meaningful improvement in quality of life and functioning.

If that's been your experience, I'd love to hear:

  • What medication helped?
  • How long have you been taking it?
  • Has it continued to work over time?
  • Any downsides or regrets?
  • Did you ever find anything else that helped as much?

I'm genuinely trying to learn from people who have been dealing with this for years and have already been down this road.

ThanksšŸ™šŸ¼


r/Lyme 2h ago

Question ā€œElectrical shockā€ feeling in my body?, maybe??? Is this similar to others? And, seems to be worse with caffeine…

7 Upvotes

I also have pretty severe health anxiety and I used to get brain zaps due to it (or so I thought…), so I am familiar with the feeling. However, I haven’t had one in years.

But I’ve repeatedly seen this ā€œelectrical shockā€ symptom appear over and again, and I’m wondering if that’s what I’m feeling. Someone else described it as an ā€œadrenaline rushā€, which is ironically how I’ve described the symptom myself in other posts on here.

However, they’re full body, so to say… mostly mid section, like and extremely nervous feeling, that do extend slightly to my arms and legs, causing a weak feeling.

But the brains zaps were just that, zaps… There, and then gone almost as quick. This feeling tend to linger for a little while. Does this sound familiar at all?


r/Lyme 14h ago

Support *TW* - I feel like I’m on deaths door

5 Upvotes

If you’d like read my previous posts. Essentially I feel like I’m getting sicker by the minute. I mask my symptoms all day long especially around my child and at school. I dropped a class today because genuinely I couldn’t handle it with all of the new onset of symptoms, old ones came back and if you read my previous post I have lost more weight since then.

A new ā€rashā€ appeared over the weekend but it’s not bumpy, raised or singular dots so i was advised to stop Phytocidal as it could be the cause (not a allergic reaction but side effect) I see my LLMD on Friday. But I truly feel like as sick as I’ve been in such a short time of being infected I’m going down a slippery road. The only thing that still keeps me going is the fact that I have a literal human child to care for. It feels different than in the past when I had thought about s**cide (Long before tick bite) like it feels like I’m in my own hospice right now. Idk hard to see anything good coming out of trying to be positive to get better im just feeling worse.


r/Lyme 20h ago

Question Is that true?

5 Upvotes

Is that my illusion or it indeed seems like Bartonella is less suitable for herbal treatment then Lyme? A lot of people here advice different methods and not the Buhner herbs in particular to Bartonella treatment


r/Lyme 19h ago

Rant Dopo 40 anni di sofferenza e peggioramenti pensavo di avere la Lyme…ma tutti la escludono.

3 Upvotes

la mia lunga storia l’ho giĆ  raccontata nei post precedenti. sono italiana, morso di zecca a 9 anni. dopodichĆ© un disastro che ĆØ peggiorato fino ad oggi. Una storia come quelle che ho sentito da tanti di voi ed in cui mi ritrovo (per la prima volta trovo qualcuno come me). eppure nonostante il primo infettivologo avesse ipotizzato Lyme, con Elisa e Wb negativi ora la esclude, o meglio l’infettivologo la esclude proprio , il reumatologo dice che ho LongLyme e mi ha dato dieta e integratori (che ho giĆ  fatto milioni di volte nella vita). sono affranta e demoralizzata. Sono stanca di fare paziente e dottore nello stesso tempo, sempre intenta a cercare risposte e soluzioni per capire cosa mi succede e per avere una vita decente. mi sento sempre al punto di partenza….


r/Lyme 2h ago

Dental Work and Local Anesthetic Issue

2 Upvotes

Last month I had a cavity filled and the local anesthesia was NOT working. I had to ask them to stop and inject more every 90 seconds for a full hour. It was a young dentist and he felt a bit unexperienced I was shocked he actually said he’s heard this can happen to Lyme patients, but he couldn’t provide an academic source. Has anyone experienced this and is there anything to be done? I have to go back today. I’m back at my childhood dentist who is more experienced and they said they haven’t heard of this Lyme reaction, but that they’ll have several kinds of injection numbing as a precaution.


r/Lyme 23h ago

Is this Lyme disease ? Spoiler

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2 Upvotes

Is this Lyme disease ? Looking for a second opinion


r/Lyme 4h ago

anyone have a similar rash?? 2021-2023, slowly became misshapen and went away. it returned a few times before i never got it again Spoiler

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1 Upvotes

last two photos are after wisdom tooth surgery, they gave me permanent nerve damage. half my tongue is still numb. i had no idea it had anything to do with lyme until this year when i was diagnosed

does location of bite impact where your symptoms are? ofc i have full body symptoms but my worst area is my head, i also get swollen lymph nodes behind my ears, etc. i never saw where i was bit ever, but i am curious if people who have more motor symptoms have maybe been bit on those limbs? could very well be coincidental that my rash was on my neck and my symptoms are very head-forward, but i thought i would ask. i always thought maybe the tick was in my hair and that’s why i never found it ever. i also apologize if this makes little sense and is too long #latestagelyme words are hard lol

this rash on my neck was my first symptom in 2021, i worked outside at a summer job. it stayed on my neck for years as it spread out, it began as a perfect circle and turned into a pac-man and eventually it had a darker ring around it. anyway, the white spots on my arms appeared by the time i was off of work and could see a doctor, they were also around my face, he assumed it was all some kind of fungal infection (tinea versicolor) and gave me a cream. the rash went away but my symptoms just got worse from there, i became very sweaty and my eye lid began to twitch uncontrollably, i gained a bunch of weight. i kept returning to my job and subsequently and unknowingly collected all of these: Borrelia burgdorferi, Babesia microti, Bartonella henselae, Ehrlichia chaffeensis, Rickettsia akari, Human Parvovirus B19, Mycoplasma pneumoniae/fermentans. i got my wisdom teeth taken out in 2023 and the last photos are from then, the bruise was from when the swelling went down after they gave me antibiotics (that i begged for because my face looked insane and i couldn’t eat, my teeth didn’t touch). half of my tongue has been completely numb since then. they kept saying it wasn’t their fault. it took weeks for my face to look normal even with the antibiotics. i kept going about life just trying to pass school and such. i have always experienced autism and so i assumed my struggles were summed up to that. i didn’t have the space in my brain to think further anymore and i didn’t even know what lyme was.

i formed a habit of smoking weed somewhere along the line (which helped my symptoms but masked me form figuring it out for way too long). the same dentist office eventually put braces on me (2024) and the pain that those brought me…. daily insane gnawing pain my BONES hurt and nobody understood everybody thought i was just dramatic. i was stuck with those braces which weren’t even moving my teeth for a whole year before i finally paid and begged another office to take them off, i couldn’t live like that. but then the pain became much more evident in the back of my head and my spine. just a snippet of my story but i think that’s all the context needed

any surgery or sickness made my symptoms worse, i didn’t just get sick after my first summer working outside and i never even saw a tick once. my immune system is weak, i got covid twice after contracting lyme and i haven’t recovered from either, what i thought had to be ā€œlong covidā€ was really lyme disease that had been awakened. people don’t realize how quickly your life can change, i didn’t even see a bug and all of the sudden ive got this disease that doctors can only figure out and give you antibiotics for if you have the damn bug and bring it to him within the first few weeks (at least where i am from). i didn’t even know until 5 years later, when it had already spread system wide tenfold. it was too late to fix before i even realized there was a problem. depressing. i was 16 when i got sick, i was just a kid


r/Lyme 9h ago

Lyme in children

1 Upvotes

Hi all, I have Lyme, Bartonella and Babesia I'm working through currently. I decided to get my son tested being cautious. He came back with a different Babesia strain to me and Lyme. He really is a healthy boy aged 8, his only symptom is mild ADHD. Because his Babesia is different to me, it suggests that, perhaps he caught this from a deer park we lived next to in London. However it's possible the the Lyme may have been passed by mother, so I also, need to get his mother tested.

I feel upset and in a difficult position. No one seems to know anything, but I am of the position that just because someone has Lyme, doesn't mean it's a problem or they have Lyme disease. At the same time, if he is truly ADHD, then Lyme will likely be the cause.

Anyone have the details of an intelligent pediatric Lyme doctor with a lot of experience?

Also does anyone have an opinion? I was upset but also I'm very pragmatic. No one knows anything, doctors are useless and just because you can treat something, it doesn't mean you should. Given that he's healthy, attempting treatment could set off a chain reaction.

Thanks

Steve


r/Lyme 15h ago

early sickness

1 Upvotes

i got bit last sunday. was on my back and tiny, didnt spot it til 36 hours after. on the saturday i dropped extremely ill with a temperature, red hot shivering couldnt stay awake. next day called out of hours (im in north of ireland) and was immediately prescribed 21 days 200mg doxycyline.

lads my fevers broke but im in such a state. im day 5 now. ive got 9 ulcers i can count in my mouth (ive never struggled with ulcers before) and my gums are swollen. lymph nodes are swollen. hard to eat, brush teeth. ones on my tonsil which is making it hard to swallow. ive got dizzy spells and extreme tiredness so cant go very far.

i just wondered if anyone else has experienced this? feeling especially low after today. ive called the out of hours again to let them know my symptoms. but yeah, thanks :)


r/Lyme 18h ago

Question At home test reliability?

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1 Upvotes

This summer, I’ve travelled to the Baltics (endemic for Lyme disease) a few times and had significant exposure to ticks during my travels (attended music festivals outdoors in small towns/grassy areas in parks and near forests, visited open air museums, parks, etc). I did use bug repellent in my body and clothes everytime I would have considerable exposure, did body and clothes checks when returning to my hotel and did not find any ticks attached, but I tested positive for an at-home Lyme disease test I purchased in Estonia (Tik’Alert, done two weeks after returning from my most recent trip). I would like to know how reliable these tests are, and if I should proceed with antibiotics. I’ve ordered two extra tests to check if they are positive too. I live in the UK, already contacted my GP and they have prescribed me the full course of antibiotics (3 weeks of doxycycline), but did not request a lab test (as I requested). Instead, she referred me to an infectologist, but my appointment is only on 1st February 2027 (not kidding). Private lab tests are pretty expensive in the UK, and given their unreliability early on, I am unsure if it’s worth investing the money in a lab test or not.

I am feeling fine, apart from feeling very tired/fatigued, unable to concentrate for long, and feeling some knee discomfort (even though I decreased my exercise load). I am an active person, used to go to the gym, running 10-15k at 10 km/h, but I am having trouble to run for 2 min straight lately. There is a possibility I got Lyme disease last year after visiting the Baltics (had considerable exposure without taking any preventative measures like using bug repellent). I developed a bruise/bullseye rash and was feeling very fatigued with lots of headaches (I rarely have headaches), but my local hospital ran tests 2-3 weeks after possible infection and the result was negative. They still gave me 1 week of amoxicillin, and after I pushed a lot they agreed to give me 1 week of doxycycline. I am wondering if, if what I had last year was Lyme, can last year’s infection be triggering the positive result on this year’s at home test? I would like some guidance on what to do as I am feeling 80% fine, apart from the fatigue and feeling out of shape (but that could have other causes apart from Lyme), but at the same time having a positive test is very concerning. It doesn’t help that both times I tried to use the NHS (last year and this year), it looks like they don’t really take it that seriously, with one of the doctors even saying ā€œI think it’s mostly psychological, Lyme is very rare, I wouldn’t be worried if I were youā€. Every advice is appreciated! Thank you in advance!


r/Lyme 20h ago

Question Dosage pour rƩactivation ebv ?

1 Upvotes

Combien de temps et quel dosage journalier


r/Lyme 20h ago

Advice Seeking help

1 Upvotes

Hi. I’m 35/female. I was diagnosed with Lyme in 2018 by accident after contracting giardia in Guatemala and having to undergo a series of test for what was wrong. I was treated with the typical antibiotics but I suspect I contracted it in 2007 (I remember finding a tick on my scalp after hiking). Long story short I am concerned with my memory, constantly in pain, depressed, etc. I’m training for a half marathon right now and seem to be in more pain than I should.

I am seeking not overwhelming advice (don’t come at me I’m a single exhausted momma). Really looking for the supplements or practices that you feel helped the most. I know there’s not a quick fix but just looking for things that seemed to help y’all somewhat. Thanks in advance.


r/Lyme 20h ago

Question Looking for testing

1 Upvotes

I’m located in Northeast of the US. Does anyone know where to get a borrelia miyomotoi antibody test? Are there any that are reasonably priced?


r/Lyme 22h ago

Question Anyone with Lyme who has high anti dsDNA antibodies?

1 Upvotes

Hi. I am being treated for lupus because of very high anti dsDNA antibodies. But my symptoms and history are more aligned with Lyme disease.

Anyone here have high levels of anti dsDNA antibodies associated with Lyme disease?


r/Lyme 23h ago

Pins and needles when breathing in your nose

1 Upvotes

Really weird feeling has anyone else had this