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Posted 8/31/2017 12:33 PM (GMT 0)
Any advice? Along with still undiagnosed chronic Lyme that my body screams...from swollen knees, ataxia, eyes that roll and freak people out, paralyzed side of mouth, dementia, and everything else...I was bitten and reinfected about 7 weeks ago. I was sick from recent iv steroids at the time...now I know bad steroids and immunosuppressant drug..but did manage to go to urgent care because I was so sick and the rash.

Nothing was done..I later told rheumo and her nurse, 3 times, nothing done ...I told PCP on phone..nothing done. Now back to bed bound completely with crazy pots, cardiac issues, fevers, and almost incomplete intolerance to light, sound..plus the meningitis type things. What do I do? Body is rejecting much food. Rheumo knows, even psych knows...I lay here. What do I do asi try to find LLMD...? Been disabled for years, isolated as you know
Posted 8/31/2017 12:47 PM (GMT 0)
Welcome. sorry to hear how badly you are suffering. Post another topic titled "seeking an LLMD in (enter city/state closest to you). Members will send you an e-mail with a referral. It may take many months to get an appointment so asked to be placed on their wait list in case of a cancellation and you may get in sooner. You might want to get appointments with a couple of LLMDs to improve your chances of a cancellation.
Posted 8/31/2017 4:30 PM (GMT 0)
Sorry you're suffering so badly, Maddie.

Yup, the steroids certainly suppressed your immune system to allow the bacteria to flourish.

I did see you started a thread to find a LLMD.
I also like tickbite's suggestion about getting appts with a couple LLMD's - and asking to be on a cancellation list.

Do you have someone to assist you getting to the appt.?
Posted 8/31/2017 7:33 PM (GMT 0)
Welcome Maddiesadie,
So sorry you are suffering through this, I am hoping you are able to find an llmd soon.

Meanwhile are you familiar with Stephen Buhners" Healing Lyme" 2nd edition and/or Dr William Rawls book "Unlocking Lyme" it may be of help to you while you are waiting to see the llmd.


You can also start detoxing, taking Epsom salt baths or Epsom salt foot baths. Eating gluten free or paleo helps some.

I wish you the best of healing and hope this helps some. Take care, Jo
Posted 8/31/2017 8:45 PM (GMT 0)
The books I will try, my reading comprehension right now is very poor...and eyes keep blurring or being hurt by light so much is hard but laying in darkened quiet room.
When I shower, I must do my hair first then rest, later return to do body in which I feel as though I'll have heart attack, I sway, etc...and after I return to bed to recover...it brings on headache, and my skin itch burns so bad...I don't know if I could do bath?
Posted 9/1/2017 1:27 AM (GMT 0)
Maddie - so sorry you're having such a rough time.


I think maybe doing a foot bath with epsom salts is something you could try.


Are you taking a binder? That's another detox agent you should incorporate.

Activated charcoal can be bought at a health food store, or online, and some grocery stores carry it.

You do need to separate it from food, meds, supplements by a couple of hours...as it will remove everything from your digestive tract.
Posted 9/1/2017 1:59 AM (GMT 0)

Maddiesadie said...
The books I will try, my reading comprehension right now is very poor...and eyes keep blurring or being hurt by light so much is hard but laying in darkened quiet room.
When I shower, I must do my hair first then rest, later return to do body in which I feel as though I'll have heart attack, I sway, etc...and after I return to bed to recover...it brings on headache, and my skin itch burns so bad...I don't know if I could do bath?

Maddiesadie,

There's also a website that has the Buhner protocols for Lyme and co-infections, sources for the herbs, and Q&A's. Buhner no longer answers questions but you can search the site to find a lot of information. It is www.buhnerhealinglyme.com

You mention swaying and burning skin. Mold toxicity can very much cause those symptoms. Are you being exposed to mold?
Posted 9/1/2017 2:04 PM (GMT 0)
Yes to mold...I puzzle over this, for the 9 yrs I've been disabled I've been..well..very disabled...income is asid, not much, and have been mostly alone...sick long enough to have no idea about Facebook, other than its there for people, a huge ordeal I dreaded was 2 mile drive to closest grocery store...I'm not in good shape imguess
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