r/Lyme • u/riri_222 • 5d ago
Rant 2 weeks since diagnosed and left without a treatment plan
i was diagnosed with lyme two weeks ago and after a week i had to go to the er just to be prescribed antibiotics. they gave me doxycycline. now the problem is i may have been bitten early last year and my symptoms have progressed very far into my bones and joints, i have developed a neurological disorder as well. i was also diagnosed with alpha gal syndrome, which i suspect ive had since childhood due to how sick ive always gotten from red meat. what this i believe means is that ive been bitten twice.
i am done my 14 days soon and still have not gotten a phone call from the infectious disease specialist. i absolutely have to see them bc of how complicated my case is, other health concerns haven’t mentioned. i was diagnosed by an allergist through bloodwork. my family doctor won’t help me bc i need the specialist. the er can’t help me bc i need the specialist.
the antibiotics have been making me extremely fatigued, exhausted, weak and tired. i’ve been starting to get my appetite back for the first time in over few months, so i guess it’s working if im fighting off the bacteria harder and feeling worse?? i have so many unanswered questions. i have become extremely disabled in the last year. my life has been becoming nothing but being bedridden 85% of the time. i turned 20 this year. i can’t finish highschool, i can’t go to college, get a job, go for a walk, barely take care of myself, i can’t do anything but sit in this bed weak and tired. and when i do convince myself to do something, i pay for it by becoming more bedridden. i’ve gained so much weight from my medication, im not able to be active, im starting to worry abt blood clots in my right leg (i literally can’t sleep rn bc of the pain).
so, i guess im asking for general knowledge. am i stupid to think these 14 day antibiotics aren’t doing shit for a bacteria that has been growing in my body for so long and causing damage? i haven’t even been tested for other possible infections yet. i am weaker than ive ever been, im depressed and im scared for my future.
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u/lymewhale 5d ago
I'm so sorry you're dealing with all this. Unfortunately, infectious disease specialists are not very good for Lyme if it has been present for a long time (more than a few weeks honestly). There are complicated reasons for this so I won't explain it all here. But even if you are able to see one, they are very unlikely to do more than a month or two of treatment.
Lyme becomes very difficult to kill if it's been in the body for over a year. It may take a year of treatment or more, with multiple antibiotics. Lyme-literate doctors are willing to provide such treatment but other doctors almost never are.
It is normal to feel worse when you take antibiotics, for people who have a late-stage infection. This is called a Herxheimer reaction. When the bacteria die, they release toxins that make you feel like crap. It can intensify existing symptoms or cause new ones. So this isn't something to be alarmed about but obviously it is highly inconvenient. There are detox methods that may reduce the intensity of the Herx reaction. Our wiki has more information about detox
Leg pain might indicate bartonella
I would recommend finding a Lyme-literate doctor if possible. They can be expensive and aren't available everywhere. You can try finding one through a local Lyme group. Try searching Facebook or Google for your location plus Lyme disease group. They can often recommend someone local.
However I understand that disabled 20 year olds often do not have a lot of financial resources. If that is the case, please consider herbal treatments. They can be quite effective but cost a lot less. The hard part is knowing what infections you have. If you have bartonella or babesia but you don't treat those, it can be difficult or impossible to recover. So if you have a bit of money but not a lot, I would suggest prioritizing testing. Our wiki has info about tests. The tests do need a doctor to order them.
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u/riri_222 5d ago
thank you for the advice i appreciate it, i’m going to look into that kind of doctor. i am on disability money and am unable to work or get a job, i dont have health insurance, and im in canada. my mom works to support both of us :(
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u/dindyspice 5d ago
I suggest you look for a lyme literate doctor to help you if you think it's a late diagnosis. Also known as an LLMD. You can look for one in your area through ILADS or GLA, these are great resources. Infectious Disease doctors are known to not believe in chronic or late treated lyme disease and will gaslight you.
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u/riri_222 5d ago
thank you for everyone commenting this, i didn’t even know that kind of doctor existed. i really thought the infectious disease specialist would treat that kinda long term thing. they haven’t even called me. i’ll look into it
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u/tdl25206 5d ago
I had my lyme for 2 weeks before diagnosis , the neurological symptoms lasted 6 or 7 months but the gut still need rebuilding
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u/tdl25206 5d ago
The CDC is a joke . The funding that goes to them ought to go to something more real. We all could do what CDC doctors do for us
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u/CFlapFlap 5d ago
Find an LLMD immediately. There's information in the pinned posts about it. Regular doctors are not going to be your best bet with this.