posted
I've had a rash on my neck several times in the past that was HELLACIOUS. Did I say ***HELLACIOUS***??
Looking back, I've probably had Lyme for 25 years, with symptoms here and there that I didn't put together and recognize as such.
It's just been in the last 6 months that symptoms have kicked up enough all at the same time for me to figure out that they're all related and = Lyme.
In the past, steroids were the only thing that made the rash go away. I've taken a course of the steroids within the last year with no obvious negative side effects.
Sooo...do you think it's safe to take them again if the HELLACIOUS rash comes back? Or does taking them in the past with no apparent side effects not indicate how they might work out in the future?
Idk what I would do instead, and I'm not all that confident that my PCP would have a clue. (I can't afford any other docs, so no LLMD to go to.) She would most likely send me to an ID doc, and I doubt they'd have a clue either.
Thoughts?
Posts: 112 | From USA | Registered: May 2016
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Keebler
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posted
- No.
You posted only 3 days ago for: Question re: prepping for initial testing
so you are obviously not yet formally diagnosed and not treating.
So, no. It is not safe to take steroids in any form if there might be a systemic infection, especially untreated. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You say: "taken a course of the steroids within the last year with no obvious negative side effects."
Well, how are you feeling these days? If you are so ill as to inquire about lyme, the steroid cream most certainly could have had an effect. Sorry.
You say that you "Idk what I would do instead" . . . there are many options, safer options for topical relief.
Of course, determining if you have lyme, other chronic infection, etc. is important and as you say "can't afford any other docs, so no LLMD to go to" it appears your PCP is in charge. But, still, you can take the reigns on much of this and do what you can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It was actually oral steroids that I took...and the timing is indeed curious relative to my amped up symptoms. Thanks for that awareness.
Given the number of false negatives with the tests, and the fact that I won't be able to afford additional testing if that's the case, I've decided to treat it as Lyme however the testing comes back. I've got faaaar too many Lyme symptoms for it to just be coincidence.
The only thing I can afford to do treatment-wise is BVT, and I'm assuming that as long as I'm not allergic to bees the treatment shouldn't actually hurt me? I haven't done any googling on that yet.
I'm waiting on treatment until I've got some liver/kidney/adrenal support on board as well as a cleaner diet for a little while.
Fortunately my PCP believes in chronic Lyme, but that's about all she knows from what I can tell so far. She prefers that I get tested at LabCorp, but she's willing to let me do IGeneX, so she was willing to listen to me on that at least.
She recommended an ID doc and a neurologist (since the majority of my symptoms are neuro), but I see no point in going to either one. Their names are just pulled out of a hat through the referral system at the insurance company, so I can't imagine they would know much about Lyme either.
My point in all that is just that My PCP's not going to be "in charge" of much, since the BVT is something I'll do on my own and she wouldn't know how to treat me anyway. I'm pretty much flying blind here.
I'm scared to not have a doctor guiding this...more scared than I think I've been letting myself know, if my tears right now are any indication.
Ok, terrified. That's what I really am...terrified.
Posts: 112 | From USA | Registered: May 2016
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Keebler
Honored Contributor (25K+ posts)
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posted
- Yeah, I get it. I guess I left terrified a long time ago and shock just wore me out. It's okay to be terrified, though, but that freezes one in so many ways - and being frozen in place out of fear can't work for very long.
You have to breathe, move your body to allow some positive energy to propel you.
I'm not saying you have to be all yippy skippy happy or fake but try to allow for the possibility that things can work out, somehow, even if you don't know how.
There is no way I'd do bee sting therapy without first exploring other ways that don't pose such a risk of reaction & there are other concerns I have about that, too. That's my opinion. And not worth expanding upon it as my energy is very limited.
But expand your view. Open your windows a bit wider.
You might connect with your local lyme groups and get a sense of what's working for others who many not have access to a LL doctor.
Ask for the in person support groups, too. Ask about the non-LL doctors that are on your insurance plan just in case they may serve your needs in some ways. Don't make any assumptions. It's always worth asking the lyme groups if they know details.
Get the basic books by Stephen Buhner. The lyme groups may have a lending library if money is tight, yet these books are very reasonable in price for such great research detail in them.
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