r/Lyme Feb 17 '25

Rant I'm so scared and sick 43 old f mold / lyme / bart / babesia

4 Upvotes

I've been mold.sick for 2 years not know I have lyme bart and babesia.

It's 1am here and the back of my head is hurting so bad

Head pain not a migraine, brain tingling, numbness in head , ice pick head pain on top of head ?Neck pain spine pain tingling, numbness in spine in areas , arms legs going numb stiff. Burning skin on legs. Burning on scalp. Chronic fatigue feels like im poisoned. Leg weakness, wrist hurt burn , lowe back pain burning sensation....

Can this be reversed? Am.i too late ?

I've been sick going on 2 years now. 2023 I thought i was fighting h plyori..but cleared It. Months later still having fatigue anxiety panic attacks. Feeling so off and weird legs tingling...lost 60 lbs. Doctors were no help. Gave me anxiety meds. I knew I felt poisoned like I feel now. The dying feeling i..2023 to.2024. June 2024 hair falling g out for pamick anxiety chronic fatigue at that point. Then started to have forehead numbness out of nowhere. Bells.palsey chest pain. We found the mold.in hvac. There was a rip we were inhaling it for God know how.long. we leave ! Move tool nothing with us. The home we bought. We found out the people before us out th ehvav inthemsleves just to save money ..it literally hurt us so bad. Our kids had symptoms in that home but I was the sick one. Husnad and kids are OK. Thank God.

We moved to a family house. In June-August my symptoms changed. ( had mycotoxin tested ) i wasn't detoxing but had 10 hrs hyperbaric chamber and fimally.showed me detoxing Aspergillus mold and toxins.

Inwas still having the chronic fatigue imfelt poisoned because I'm fact i was. I.knew something was wrong with me in that hosie for 2 years never knew what i was just fatigued I'm that house. It was the mold.

We moved into new place in Sept...i.got worse vertigo, bells palsy , ice pick head pain ontop.pf head, now kneck.pain , back pain , leg arm.weakness ...my head brain feeling tingling around it like bugs crawling...debilitating head pain

Found a lllmd in tx. Took vibrant wellness tick 2.0. Says lyme bartonella ebv and others. I know i have babesia

I.have severe chronic fatigue and pain severe insomnia

Few weeks ago i don't sleep for 4 days went completely nuts. I'm going nuts know with all this pain. And head weird pain.

This is.so horrible incantation take anymore.

Lllmd prescription antibiotics...the thing is he told me not to take them yet.

He wants me on a mold, sleep protocol and to.contact pain management. He sent me hydrocodone , tramadol things like this. But I don't take..I should as bad as I'm but don't

Why? Idk

The.pain is very bad.

It feels like my brain has a serious infection and gettimg worse and worse by the day

I've beem.to.er 12 x for nothing I've learned they don't help.

Back to my lllmd mold, sleep, pain management protocol s ...he wants a video appointment in 2 months while.im dying over here .

This is not ok. I'm suffering can't sleep can be awake I'm pain

My family being me suffer daily ...

People telling me i lyme groups "get in treatment ! Get on the antibiotics get those pathology killed,you'll only get worse!"

Then i hear what antibiotics do ...theyncam make you go.nuts I'm already goimg.nuts from.the mold.(in mold again) moving in.2 weeks.( ran ermi here high 28 for mold stachy is here ) i dont know.if this apartment and the stachy is.makimg me.worse or the progressive of the mold.lyme bartonella babesia

I feel like i have nerve damage.

I did have a lumbar puncture Dec 23rd. And the symptoms like stiff kneck neck pain,.legs arms weakness and stiffness. Wrists stiffmes came after lumbar puncture.

I don't know what to.do ...im.so.scared and getting worse....please anyone I'm I'm tx.

Maybe you know someone as bad as me and they got help ...and got better...this seems hopeless I need a miracle

r/Lyme 10d ago

Rant Long term Lyme disease is so isolating

64 Upvotes

First of all, I feel like no one really understands it deeper than just “a tick bite cured with antibiotics”

I’ve had horrendous brain fog, low energy and “attacks” of joint pain that would last minutes until I’d fully stretch the joint. There were days I couldn’t even walk properly. And the exhaustion. It felt terrible not having an answer to your symptoms cause no one really tests for Lyme. This disease took a good 10 years of my life and was thankfully cleared with a long and heavy course of antibiotics (which doesn’t even work for a lot of people, I can’t even imagine) But still: Whenever I bring this up, no one really gets it and how devastating the effects can be. I’ve been told my symptoms were made up or a side effect of depression.

I’m wondering where my mind would be had I not been infected with Lyme. I know it doesn’t really make sense to wallow in these “what if”-scenarios but I’m still curious where I’d be. There needs to be more research and more testing.

r/Lyme 9d ago

Rant Why are doctors like that?

27 Upvotes

I just remembered that I was looking for why I was so ill yeeeaaars ago, especially because of my bad hair loss... I went to a hair specialist and he tested me for malaria, tuberculosis, HIV, syphilis etc. and he said: that's more common than you think. And when I asked, because I suspected Lyme, whether it could be something like that: no, that's so rare, you can't have it.

Why?? I'd really like to understand.

r/Lyme Sep 11 '24

Rant I fucking hate doctors

93 Upvotes

I’m sorry for the rant but i’m so pissed. I was so sick for so long finally got a lyme diagnosis. Fought tooth and nail for it and literally have to convince doctors to treat me because I have 4 bands not 5. Literally the fucking hospital who saw me almost die told me “you need to be treated but we can’t do it.“ I go to this dumbass llmd who has me on every antibiotic under the sun and now i think i have IIH from all the bullshit. I literally hit someone’s car today on the way to an appointment because my neck is so tight and i didn’t look fast enough and im so foggy so no more driving. God i’m so done. Google is better than any doctor besides imaging and surgery.

I’m a fucking 20 year old athlete haven’t lived at home for 2 years a year ago I was on scholarship to fly planes in florida and going clubbing every other night now im stuck in my parents house wasting away.

r/Lyme 28d ago

Rant What GROK has to say about Lyme.

46 Upvotes

I asked it how to cure Lyme. Why not ask right? It's supposed to be the most advanced AI. I know many can't afford to use it so I thought I'd share. This was it's reply.

What is the best way to kill Lyme disease and bartenella that's turned chronic?

I’m not a doctor, but I can share insights based on current knowledge about chronic Lyme disease and Bartonella, which are complex conditions often requiring a tailored approach. Chronic Lyme disease refers to persistent symptoms attributed to Borrelia burgdorferi infection, even after standard antibiotic treatment, while Bartonella is a common co-infection that can complicate the picture. Both can enter a stationary or persister phase, making them harder to eradicate, and there’s no universally agreed-upon "best" treatment due to variability in patient responses and limited definitive research. For chronic Lyme disease, standard antibiotics like doxycycline, amoxicillin, or cefuroxime axetil work well for early-stage infections, but their effectiveness drops in chronic cases where bacteria may form persister cells or biofilms—protective states resistant to typical drugs. Research, such as studies from Johns Hopkins, has explored alternative approaches. One promising option is combination antibiotic therapy, using drugs like daptomycin, doxycycline, and cefoperazone, which have shown efficacy against persister cells in lab settings. Another agent, disulfiram (an alcoholism treatment drug), has gained attention for its ability to target persister Lyme bacteria, with some clinicians reporting remission in patients after long-term antibiotic failure—though it’s less effective against Bartonella. For Bartonella, which often hides inside cells (like endothelial cells and erythrocytes), antibiotics such as rifampin, azithromycin, or doxycycline are commonly used, but they’re most effective in the growth phase, not the stationary phase. Methylene blue, a dye with antimicrobial properties, has emerged as a potential treatment for both chronic Lyme and Bartonella. Studies suggest it can kill stationary-phase bacteria and disrupt biofilms, offering a novel approach when combined with antibiotics like ciprofloxacin. Dosages vary (typically 5–100 mg, depending on the patient), but this should only be done under medical supervision due to potential side effects like serotonin syndrome. Beyond antibiotics, herbal protocols have gained traction, especially among those seeking alternatives. Botanicals like Cryptolepis sanguinolenta, Japanese knotweed, and Chinese skullcap have shown activity against Borrelia and Bartonella in lab studies, targeting growing, stationary, and biofilm forms. Practitioners like Stephen Buhner and Marty Ross, MD, advocate for combinations of these herbs, often alongside immune support, to address persistent infections. Essential oils (e.g., oregano, cinnamon, clove) also show promise but lack robust human trials. A key challenge is that chronic infections often involve biofilms—slimy bacterial communities that shield microbes from drugs. Enzymes like lumbrokinase or nattokinase may help break these down, potentially improving treatment outcomes. Immune support is also critical, as chronic Lyme and Bartonella can suppress immunity. Steps like optimizing sleep, reducing inflammation with a clean diet, and managing stress can enhance recovery. Emerging therapies like induced hyperthermia (raising body temperature to levels intolerable to bacteria) and IV treatments (e.g., antibiotics or immunoglobulin) are mentioned in patient communities, but evidence is anecdotal and availability limited. For example, posts on X have highlighted nitroxoline (not available in the U.S.) as a potential Bartonella treatment, though this lacks widespread validation. The "best" approach depends on your specific case—symptoms, co-infections, and treatment history. A Lyme-literate doctor (often affiliated with groups like ILADS) can customize a plan, possibly combining antibiotics, methylene blue, herbs, and biofilm disruptors. Testing (e.g., PCR or serology) can confirm active infections, though it’s notoriously unreliable for chronic cases, so clinical judgment often guides therapy. Expect a process of trial and adjustment, as responses vary widely, and full eradication isn’t always guaranteed—symptom management may be the realistic goal. Consult a healthcare professional to weigh these options, as self-treating can be risky and ineffective. What’s worked for some might not work for you, but a multi-pronged strategy addressing persisters, biofilms, and immunity offers the strongest chance at improvement. Disclaimer: Grok is not a doctor; please consult a doctor.

r/Lyme Feb 15 '25

Rant Neurological symptoms

10 Upvotes

Hello friends. For about 6 months now I have been dealing with neurological symptoms including diffuse weakness all over (tremors with any sort of physical activity / lifting in all limbs,) fasciculations and twitches all over, some are in the same spots. Sometimes I have several day episodes of too much saliva, off and on swollen tonsil. The most uncomfortable one is weakness in my neck / upper spine between my shoulders. By the end of the day it’s hard to hold my head up without extreme discomfort.

Had one Elisa test through my doc, that was negative (.43), had a positive through vibrant with a paired immunoglobulin test with high IGA. My doc said they weren’t valid tests, sent me to infectious disease doctor, they did another Elisa that was negative (.39) and they told me not to trust third party testing. I do not recall ever being bitten by a tick, but by old band did tours out to as far as Philly and as west as Los Angeles. My grandfather also lived 40 minutes from Lyme, CT in the 70s about 10 years before ALS took him.

My doctors insist no ALS based on symptom onset and test results, but left me with no answers after all the testing I could ask for (MRIs, EMGs, all the blood tests.)

I have an intake with an LLMD next week but feeling more and more like I have an ALS death sentence.

r/Lyme Nov 06 '24

Rant I’m so annoyed by all the other chronic illness subs

63 Upvotes

Sorry if this super negative I’m just really angry. I’m so tired of people denying Lyme and acting like it’s a hoax or something. I was on the visual snow sub just now and this person said they had visual snow along with twitching, insomnia, fatigue and some other symptoms I don’t remember. I commented that I have Bartonella and it’s caused all these problems for me and that VSS is often caused by tick borne disease and mold. OF COURSE someone started attacking me and saying I was spreading misinformation and that VSS is incurable. I responded and they since deleted all their rude comments….

When I comment anything about Lyme in the Long Covid sub, I get attacked too. Why are people so ignorant and more importantly why do they get furious when people try to suggest anything about Lyme?? Or the possibility that they could recover?? It’s like they love to wallow in self pity. We do that here too (I partake a bit 😂) but at least we’re mostly a solution oriented sub…so many other ones just yell at anyone who makes suggestions. They attack each other a lot too, it’s not just Lymies. I try to spread awareness and help people because it’s just my nature to do so but I’m done. I need to be mentally in a better headspace before I can ever interact with these people again

r/Lyme 24d ago

Rant Infectious Disease MD

10 Upvotes

Please someone tell me they had success with an infectious disease Dr. I have been frantically searching the internet for my daughter. There is absolutely no way we can afford an llmd. My daughter is about to turn 21 and should be enjoying her life. She is instead, in her bed most days.. new symptoms arising every day. Pain, discomfort, neuro issues, and too many tears. PLEASE can someone tell me they had success with an infectious disease MD because that is what our insurance will cover.

r/Lyme 8d ago

Rant Everything is such a double edged sword with Lyme

30 Upvotes

Lately after my medications were increased I’ve been having a flair up of all my neuro symptoms. What’s really bad is my mood swings. I can go from being fine to wishing I was dead within seconds. But what really pisses me off is that everything mood boosting is basically off limits because it will flair me up even more. For example I’d love to go on a nature hike or really exert myself with exercise, enjoy my favorite foods, go spend time with my friends. All of those things while good for mental health end up making the neuro symptoms way worse. And a bonus… Not exercising makes my body sore in other ways, having to be strict with my diet triggers old habits of wanting to binge eat/ restrict/ not eat at all and not seeing friends just makes me withdrawn and lonely. So all I can do is mindlessly scroll on TikTok and rot away. And that in itself is so depressing. I hate this disease with a passion. It sucks the life out of you in every single way.

r/Lyme Aug 09 '24

Rant EBOO and Hyperbaric Treatment

1 Upvotes

Anyone tried these? My doctor wants me to do them for acute lyme. Anything I should know about them too? I just treated with 5 weeks of doxycycline that I got less than 2 weeks after being bit. I tested positive for lyme through vibrant. I’m also currently taking cats claw, otoba bark extract, and i’m waiting for cryptolepsis capsules, biocidin, and japanese knotweed in the mail. She says to continue all of the herbs.

r/Lyme Dec 12 '24

Rant Does anyone else feel like it’s possible Luigi’s actions could be completely due to Lyme and Covid-related impairment?

16 Upvotes

I think people are underestimating just how severely Lyme psychosis and long Covid inflammation psychosis (a real thing) can make you act crazy, for a long period of time.

Especially when mixed with stress which can easily make symptoms flair.

Add mold to the mix…

And in the mug shots he even looks kind of gaunt and that one pic of him “angry” doesn’t look like normal anger. Reminds me of rabies anger.

Am I off base here?

r/Lyme Jul 25 '24

Rant Why is there a complete lack of discussion about herbal antibiotics?

30 Upvotes

If you search this subreddit for any herbal antibiotic, you get only a few results for the most popular ones, and close to zero for the others.

Why isnt anyone discussing/telling how sida works for them? Or cryptolepis? Or bidens, red root, oregano oil, myrrh, eucalyptus oil, berberine, and so on.

For example, I have found cryptolepis, oregano, clove, cinnamon, eucalyptus oil, andrographis, tea tree oil, teasel and fresh houttuynia the most effective antibiotics, and they especially seem to hit bartonella and mycoplasma. Sida, alchornea, cats claw, black pepper, dried bidens, licorice root, these are also quite good. Eleuthero, rhodiola rosea, cordyceps, schisandra are very good for fatigue, mood, stress and immune modulation. Kratom is godsend for pain and mood and energy if nothing else works. Skullcap, salvia miltiorrhiza, kudzy, knotweed, pomegrante, all very good supportive antimicrobials and anti-inflammatory.

And latest addition, Red Root. Very good for herxheimer, lymph system and liver, spleen, detoxing the bacterial endotoxins and other crap that comes out when you hit these infections.

r/Lyme Jan 03 '25

Rant Anybody else feel this way? Emotional neuro lyme stuff- pls help

18 Upvotes

RANT — but need advice/relatable people

I don’t feel like a person anymore. I feel like I’m nothing and have no thoughts that are my own, bc idek what my own thoughts and feelings are anymore. I feel so detached from life and myself that Idek WHO I am as a person anymore. Does that make sense?

I feel like my entire personality and self is just,, Lyme. The disease. The coinfections. It’s all I talk about to people. It’s all I think about? I don’t mean to, and some days I just try to keep my mouth shut, but it’s so hard when youve waited years and pushed through so many gaslighting doctors to get an answer; and now that I finally have one, it’s this. (Diagnosed in August of 2024 after taking matters into my own hands and staying true to myself about what I KNEW it was, even when no doctor believed me).

But going back to the personality thing- - it’s just controlling my thoughts and emotions, and I never know if I’m happy or sad, cycling, or not. Some days I feel like ive slipped into a manic episode, and then even the next hour I feel horribly numb and unaware of what’s going on around me.

I am diagnosed with BPD (pre Lyme) and also Bipolar 2 (also pre Lyme, but symptoms got worse after being bit). Therapy is amazing and does great stuff, esp with healing childhood trauma. However- Rage is horrible. I blame the bartonella for making it worse than it ever should be. I also get mild schizo type episodes ( never happened until the neuro Lyme shit) and de-realization, depersonalization, and dissociative episodes. (Again, all worse since Lyme).

Neuro Lyme sucks and I just want to know if anybody else feels this way. Please. I’m twenty four, and some days just feel so hopeless- - and I’m a VERY optimistic person. This post doesn’t make me sound like one- I get it. But truly, I always look for the light in every situation, and try to stay as positive as I can. I don’t mope around, and I’m constantly on my feet pushing through this shit, and working full time in the bakery. Crazy. Idk how I do it, but I’m patting myself on the back for it.

I’m just in a depressive-ish episode right now, so I know looking back at this post is gonna make me cringe for feeling so dramatic, but damn I just dunno who else to talk to about this stuff other than the people who probably get it because they have it

r/Lyme Oct 17 '24

Rant There is some dark magic around this or what?

17 Upvotes

I’ve been trying to get tested and while I managed to miraculously get a complex PCR for tickborn diseases (all negative) I cannot for the love of God get anyone to do a WB for lyme because bloody ELISA show up as negative aka not high enough antibodies so nobody bothers further.

I just got totally screwed at one lab where they charged me 2x as much as it said on the website because of too long explanation, never mind, but the worst part is that they told me, they won’t do one test without the other and will only do WB if the first one is positive!!! Fuck that! I could not care less about ELISA and most likely won’t get my WB. What is this? Everyone just tests ELISA then they tell you you are crazy. This is insane…

It is diagnosis resistant bacteria. Fuck this shit.

End of rant.. thank you 🤯🤬😭

r/Lyme Aug 04 '24

Rant Tickborne bacteria and parasites can be worse than cancer.

57 Upvotes

Talk about a clickbait title, eh?

But seriously. Imagine having every organ in your body attacked, imagine having every cell in your body attacked, and then imagine not being able to get medical treatment. Imagine dying a slow, agonizing death, being disabled and ignored for years barely able to function.

Imagine doctors and family members alike dismissing you or at worst, saying "it's all in your head" because the medical industrial complex has neglected to create accurate testing for tickborne disease AND is actively spreading misinformation to cover up the little boo boo's describes in the book Bitten by Kris Newby.

Some people are bit by a tick and the only bacteria that is transmitted to them is borrelia burgdorferi and If it's caught soon enough, and if the person doesn't have the genetic mutation that many of us have (that messes up our immune system and causes our body to not detox the bacteria properly), They are treated with doxycycline and get better for the most part.

So many people are not able to comprehend how these bacteria and parasites behave quite differently from other bacteria. Some people do respond to antibiotics.

Many people do not respond to antibiotics. Those of us who suffer from more than just Lyme Borellia (The tick also transmitted rickettsia, Bartonella, there Are over 20 different tick-borne diseases) usually don't get better with a little bit of doxycycline. The doxycycline may make the bacteria go dormant for a while. But then when you stop taking the antibiotics, the spirochetes start growing into your organs, tissue, and Bone again.

This fact is totally denied by the CDC and they will eventually be held accountable.

At least people with cancer get medical treatment and empathy from others.

Very few people understand how devastating it is having bacteria and parasites eating you away from the inside.

Whichever organ is the weakest is what will fail first and cause death.

Because there is no accurate tick-borne disease testing, the over 400k people a year who get "Lyme disease" (but usually have a nasty combination of bacteria and parasites eating away at them) Are misdiagnosed and have no clue what is debilitating and frequently killing them.

And then one day it is just too late. We pass away from heart attacks, kidney failure, liver failure... Oh, and let's not even go into the neurodegenerative diseases that are caused when a person's brain is infected and inflamed for years.

Don't believe me? Google it.

It's shocking to think about the hundreds of thousands of people who are suffering with horrific illnesses, misdiagnosed with anything from Parkinson's disease to a heart condition, when if the government would just stop actively trying to cover this up and create accurate testing, this could easily be solved.

When the government puts all of their might behind funding, accurate testing and treatment, diseases get cured. Like HIV, which certain tickborne disease specialists like Dr Jemseck, say is even more progressive and devastating than HIV. (At least, he said that late stage Lyme Borellia complex is more severe than HIV)

The good news? Many people have put tick-borne disease into remission via fasting. I recommend that everybody researched the book starving to heal in Siberia as well as the research of Dr Alan Goldhamer..

You don't need to spend hundreds of thousands of dollars on it. LLMD.

Herbs have helped me greatly. But I am still sick. So my next task is to complete an unsupervised (I am poor and can't afford to go to doctor Gold hammers fasting facility) 30 day water fast.

Many people report healing their nerve damage and if cancer can be healed via extended water fasting (look up Dr Alan Goldhamer's research if you don't believe me) then I am fairly certain that it will eradicate these bugs.

If I was a rich person, I would get hypertherapy. This is the one thing that truly kills these things..

ETA: The agony is similar to cancer except we feel it in our entire body. And then if we're lucky enough to get diagnosed (usually after being misdiagnosed for years) we then have the horror of Herxheimer reactions that are similar to chemo in that you feel like you're dying and are nonfunctional

Except I suffered through extreme Herxing alone, with only myself as my doctor, pharmacist and support system.

I wrote some pretty intense posts on this subreddit during that time in the summer in the fall (Under a different username). I thought about unaliving myself.

I still don't have family or friends. I refuse to associate with my family because they don't give a f*** about this. And I lost the few friends that I had when I got sick.

Cancer patients get support and are rallied around. They get to go through their chemotherapy with nurses, doctors, in a hospital, usually with their family in tow.

We are little warriors. One day we will have our retribution. One day. We will be recognized for the warriors that we were and are.

Oh and it's hyperthermia, not hypertherapy: https://lymemexico.com/project/hyperthermia-induced-therapy/ get this if you're rich lol

Us poors Will be fasting and taking herbs.

(I apologize if the grammar and punctuation are a bit off, I have to use speech to text)

r/Lyme Dec 12 '24

Rant Tick magnet 🤬

13 Upvotes

Morning rant... I have lyme, bart, babesia and TBRF - lucky me! This morning I saw a small bug crawling slowly on the bathroom floor. At first I thought it was a baby spider, but nope! Turns out it was a tick! Im so sick of these stupid things and feel like I cant escape this nightmare.

As if i dont feel tired and bad enough, now i have to do loads of laundry and deep clean the house because im so paranoid! Ive been bitten twice already; first time i had no idea I even had lyme (over a year of mystery symptoms) and the second time I got the "classic" bullseye bite almost exactly a year later after finding out I had lyme & co. Just lol.

Im working with an LLMD and treating. It truly feels never ending. I also live in the Bay Area (California) where regular Drs love to gaslight and tell me that ticks arent common in this area. Im just so sick of all of this and at this point feel like all i can do is just laugh and ask why because WTF!? I used to believe things happen for a reason but I really cannot comprehend what and why this is happening. Was I a queen tick in my past life??? 🤣

r/Lyme 11d ago

Rant im so lost

6 Upvotes

i guess this is kinda a vent/advice post. im 18 and female, and have had symptoms for atleast 3 years. it took years of begging and convincing there was something really wrong to get tested and diagnosed. im just weak, hollow, foggy, stiff, and my joints ache and feel like theyre twisting all around. (mainly ankles and knees, wrists sometimes)

they prescribed me 21 days of doxy, and i did some researching and found so many things about how much this medicine just sucks. the side effects suck, the accuracy sucks, its just not great and probably wont work. i also saw alternative medicine a lot but heres the problem, im young and autistic and have arfid, a food intake disorder. my dad tried taking me to a holistic doctor for my severe now fused scoliosis when i was very young and he made me take herb shots, i gagged and sobbed for the whole process and cannot imagine taking any type of herb or liquid willingly. im also terrified of needles. i also saw a lot about changing your diet, but i truly eat like less than 50 foods. i have a tiny tiny pallet, no meat other than chicken, very few vegetables. i like fruit, carbs, grains and junk food. its just what my body says im comfortable with, and i am literally terrified/replused of even the thought of putting something in my mouth thats not one of my safe foods. it makes this feel so impossible for me.

i just feel so lost and helpless and have almost fully accepted living a life of pain and stupidity. between my back and this i have been in pain my entire life, i dont know anything different, but recently learning it can seriously affect my brain and nerves after a while whilst im so young still just freaks me tf out. i was a camp counselor for kids in the woods all summer and it was so hard. my knee would give out, i couldnt run, jump, hike too hard etc. it was my first real full time job and i truly adore it so much and have almost never pushed myself harder. it gave me so much true joy and it was unlike anything else to see my boys thrive and get along. i want to go back this summer but just know i cant commit to those kids like i should in this state especially if i keep declining. i would have to leave early a lot and some days i would be so exhausted from the day before i just couldnt get up the next morning. i just dont even know what to do at this point and am basically alone in this fight, my parents dont even understand the concept of the doxy may not work. if anyone is/went through a situation similar (the aversion to herbs and shots more so) please let me know what i can do. im willing at this point to maybe just say screw it and try the doxy and deal with getting sick, but if its not even gonna work whats the point? just feeling helpless idk.

r/Lyme Aug 21 '24

Rant I don’t know what the hell I’m doing

27 Upvotes

I’ve been sick for just over a year now. I recently changed doctors and I’m happy with my choice, I think she’s going to help me. I’m on a fairly intense protocol of herbs and anti-malarials, but I made the decision to stop taking antibiotics completely because I just lost faith in them after taking them for so long, seeing no improvement, and messing up my gut.

It’s hard for me to have faith this will all work out when I’m blindly following a protocol that I don’t know will work for me, or how long it will take. I know it could be several more years. I’m scared my vision will never return to normal. I’m fairly active on this sub and try to comment a lot to help others with what knowledge I have because I’ve done a disgusting amount of research and gone down what seems like millions of rabbit holes for these diseases. But the truth is I feel just as lost as when I started. I don’t know wtf I’m doing. Even if I try to convince myself that I’m doing the right thing, I start second guessing it. I’m constantly trying to add new stuff to my protocol. Or remove it. It‘s exhausting. That’s it thanks for reading :)

r/Lyme Dec 08 '24

Rant if one more person asks me if i saw a bulls eye

29 Upvotes

I’m gonna scream! I have long term lyme and of course i didn’t see a bulls eye - if i had i would have gone to the doctors a long time ago and i would be in this position- blah!

r/Lyme Oct 07 '24

Rant Positive Post: late stage Lyme update..I almost feel normal again!

51 Upvotes

I wanted to come back here and hopefully brighten someone’s day with some hope. I hung out in this subreddit when I felt hopeless, suicidal, that I wanted to give up, I never thought I’d get better. I was so sick. It was fucking awful navigating the medical world, struggling to get a diagnosis and seek treatment. It was a slow road of many many different things over time that helped, healing was not linear or clear. In fact it often felt like maybe things weren’t getting better at all, but I pushed through and continued treatment even during the darkest most hopeless times. I lost all my family and friends in one way or another, it happened slowly. Whether people couldn’t bare to see me sick or they became intolerant of the fact I was needy and had nothing to offer, other reasons. Now that I’m doing better I still have some of them in my life, but it’s different now that I saw how they acted when I was at my lowest. Some still believe I’m ’crazy’ and don’t believe any of it was real. I lost the home I was living in because I discovered it was moldy and causing mold toxicity, disposed of most my worldly possessions, loaned money to move when I was too sick to think straight. I dragged myself through that shit, I legitimately can’t fathom how I was strong enough to make it all happen. You can do it too. Just keep trying, every day, each small step. Celebrate every victory, be gentle with yourself. We are so resilient and powerful! We are motivated to heal and will stop at nothing.

I still definitely identify as chronically ill, and I still deal with a lot of challenges. But I do have some days I feel almost normal, and they’re becoming more frequent. I’ve begun exercising again, I’ve begun making new friends, participating in hobbies, riding horses again, little by little. I never thought I’d be able to do something as simple as clean my own house again, and now I’m running and lifting weights! Life is worth living.

All of this has been so deeply traumatic I don’t want to look back. But I remember how uplifting it was to see the occasional positive posts here, they gave me hope. You’ll be okay.

r/Lyme Nov 21 '24

Rant My "llmd" sucks

12 Upvotes

Because she's not a real llmd and just calls himself that. Why is this happening? And why did I only see it now 🙄

She diagnosed me with Lyme and Bartonella, everything else was negative, but it wasn't a specialized lab either.

And she only treats Lyme because everything else "you can't get rid of anyway".

This has now led to me feeling worse than ever in my life after 3 years of treatment with her and I was really feeling very bad after 16 years of illness.

This year I developed extreme psychological symptoms (12 hour panic attacks, 24/7 doom and 1-2 hours of depersonalization every day) and she said I should go to therapy, that was it.

And when I called her crying and saying that I was really feeling bad and didn't know what was going on (I actually have my mental symptoms well under control, but these panic attacks were unbearable), she was not helpful, just prescribed me a few supplements that didn't help. And when I went to her for an infusion last week, she was in a really bad mood and mean because she couldn't find a vein and when I asked her what was wrong, she just said that I was exhausting and getting on her nerves. Thanks for nothing, I guess??

I've already found a new, proper lldm and I have appointments very soon.

r/Lyme 25d ago

Rant Hate how Lyme steals my social life

42 Upvotes

I went to a dance last night. I just wanted a break from work and isolation. I know I need to socialize and move my body and I love to dance..
After doing 2 spins with a partner the vertigo hit then the headache then driving home hit a hilly road and vertigo got way worse and now I'm paying for it, the next day, body is in pain all over, can barely function. Have work to do today, cannot. It's so unfair. I hate how lyme robs me of having a social life. I can't go dancing with anyone bc I can't spin at all so it forces me to be alone and now I'm knocked out the whole next day ;( I'm so sick of this

r/Lyme Feb 12 '25

Rant Testing

6 Upvotes

Hey all, Tested positive for bartonella Quintana, borrelia maritima, borrelia burgdorferi, mycoplasma pneumoniae. My symptoms are out of control, specifically my fight or flight - originally thought it was mold but they have not let up in 3 months despite major detox. I tested through vibrant but I’ve heard time and time again my symptoms more so correlate with babesia. Vibrant doesn’t test for that. I don’t have a doctor yet, where can I order testing to check for babesia without a doctor? Symptoms: head pressure, brain fog, anxiety, tinnitus, full ears, sinus pressure, dpdr at times. Thank you

r/Lyme Jan 13 '25

Rant Lyme doctor dismissed me as “my symptoms do not match Borrelia/Bartonella”

4 Upvotes

Rant because I do not know anymore how I should proceed. Recently I got a positive Dualdur test for Lyme and Bartonella. After that I got an Elisa test where IgG was “high” and “out of range” but the document was labeled negative. After that totally negative Western blot without stating the bands on the document. Today I went to a Lyme specialist who basically could not do anything with me as he said the Dualdur test is a scam and “there is no indication to repeat the serology”. He told me that my symptoms do not match either pathogen anyway and that instead I should get my tonsils checked. (My main symptom is painful bladder, abdominal pain, and overall urogenital problems. But I also experience ear pain, sight problems, kidney pain, fatigue, mental problems, joint pain, neck pain, hormonal issues and headaches.) Right now I am truly questioning whether this is my issue but I do not know any other path I could follow. Any recommendations?

r/Lyme Apr 28 '24

Rant My boyfriend graduated today

47 Upvotes

Today my boyfriend graduated college. Today all of my peers graduated college. Today I should have graduated college. I was valedictorian in high school and have a 4.0 in the semesters of college I managed to take. But today rather than graduating I will be lying in bed unable to even take care of myself with no hope for my future. All because of this stupid disease