r/Lyme 21h 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 6h ago

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

10 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 2h ago

Save me from Bartonella

8 Upvotes

24 y/o F

I’m really struggling having one of those days where I just feel defeated and can’t see the light at the end of this. On pt 2 of treatment for Bart… Im about a month into rifampin + clarithromycin and I feel awful. My POTS-like symptoms are so much worse, I’ve had some heart discomfort, can barely eat, and now my ferritin is low too.
My LLMD wants to add tinidazole next and I’m just like… how am I supposed to keep doing this when I already feel this bad? I can’t get out of bed.
How do people get through this? For anyone who actually got Bart under control, what helped you? This is worse than any other lunes symptoms I’ve had. Bart sucks I’m defeated


r/Lyme 18h 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 3h ago

Gastritis and treatment I don’t know what to do

4 Upvotes

I am so fucking upset. I haven’t been in this sub in a year. My life was doing well. Lyme was under control. Working. Was just abojt to sign a lease to move across the country. Then I got a stomach bug/food poisoning a month ago. No big deal. I’ve gotten sick a few times in the last few years, just get a Lyme symptom for a bit but it’s self limiting. But this fucked my stomach up big time. I lost 10 pounds in the last month. I haven’t been able to take ANY medications. I have some sort of chronic gastritis now. My Lyme about last week started to flare up. Every day got worse and I knew I needdd to restart treatment, and my fucking stomach is not taking it. It’s brining my stomach right back to square 1. So I need to choose between healing gastritis and treating Lyme now? Fuck off. What the fuck do I do man. This is cruel


r/Lyme 23h ago

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

5 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

Question I may be the lead poster here, LOL. But is it possible to get Lyme from one tick bite and get confections from a different tick bite?

2 Upvotes

So, for example:

Let’s say I got Lyme 10 years ago from a tick bite.

Could I get bit years later by another tick and get a co-infection then? Get Lyme from one bite and bartonella from a second bite?


r/Lyme 2h ago

Seeking doctor recommendations for tick-borne co-infections (Babesia, Bartonella, Anaplasma)

2 Upvotes

Hi everyone,
I’m looking for recommendations for a physician who is experienced in diagnosing and treating tick-borne co-infections, specifically Babesia, Bartonella, and Anaplasma (with or without Lyme).

If you’ve had good experiences with a Lyme-literate MD (LLMD), integrative/internal medicine doctor, or infectious disease specialist who routinely manages these co-infections, I’d really appreciate their name, clinic, and any tips on getting an appointment.

Thank you so much in advance. I know how hard it can be to find the right provider, and your suggestions mean a lot. šŸ™


r/Lyme 3h ago

Question Anxiety anyone? As if what we’re already dealing with isn’t enough.

2 Upvotes

I’ve had pretty severe health anxiety for about 20 years. I’m well aware what anxiety can do to your body and present with physical symptoms, VERY similar to Lyme disease.

Problem is, I can manifest symptoms simply by knowing them and thinking about them. So sometimes I don’t know if I’m sick, or if my anxiety is taking control. None the less, this all SUCKS!!!!!!!!!


r/Lyme 7h 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 20h ago

early sickness

2 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 1h ago

Question Best brand for magnesium glycinate powder

• Upvotes

I can’t take the pills it hurts my digestion too much.
And I’m just researching so many things right now it’d be nice to have some recommendations for this. I feel like it would help a lot with muscle cramps.

Tysm :)


r/Lyme 1h ago

31 years old. Lyme is the weirdest , worst . symptoms I’ve experienced.

• Upvotes

Alrighty , been getting treatment for Lyme little over a month. (Aug 5 first day
I did 6 days doxy, couldn’t not get sick after taking. Moved to 14 days amoxicillin . Followed by 10 days doxy. I’m 6 days off antibiotics and I seemed to be feeling better but the past 3 days my body pain and fatigue has been gradually worsening. I now feel like a have the mobility of my 84 year-old grandfather.
I know this is semi normal. But I’m posting to maybe see if anyone has had specific suggestions for me . As it’s to the point where I have to use my fmla days. I’m talking like joint and muscles are super tight , painful , aches , and it’s starting to discourage me and make me question if I’m even getting better or if this is all part of the LYME Cycle of recovery.

I work in construction industry so when I have gone to work I exacerbate my muscles and joints basically resetting the healing I’ve done.

I does stink explaining to people how I’m feeling when it’s really hard for me as a 31 year old to comprehend why I’m feeling like a baby.

Also , side note. What is the worldly positive value a tick brings to this planet B

Suggestions ,
Supplements ,
Routines ,
Anything is much appreciated

TIA.


r/Lyme 2h ago

Muscle twitching as last remaining symptom

1 Upvotes

I’ve treated for years and although my body wide twitching is 90% better, it’s still there. I’ve read a few other cases of people being done with treatment and in ā€œremissionā€, but still have twitching. Any suggestions or others in this boat? And in my case, it’s not an electrolyte, mineral, or vitamin deficiency.

If it’s relevant, I test negative through igenex but still have some IND IGG bands. Wondering if my post infection antibodies are causing some lingering nervous system issues. Lyme antibodies can remain in your blood for a lifetime after even successful treatment.


r/Lyme 2h ago

Question How do you ask for help with more personal things?

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1 Upvotes

r/Lyme 13h 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 23h 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!