posted
I guess I'm herxing from my rife treatment last night.
Just feeling so overwhelmed and weepy. Saw my LLMD recently and I feel like she doesn't truly hear me.
I've been wanting to go an entirely herbal route for treatment, but she continues to talk me into staying on the antibiotics.
She does incorporate plant tinctures, and now added some artimisinin into the protocol.
However, this month I'm supposed to start yet agian with another new antibiotic, rifampin-type one thrown into the mix of already too many abx.
It's so overwhelming keeping up with this schedule.
I want to focus on rife and herbals but for some reason the switch never occurs; too unmotivated to do more research in finding another dr. who might be more receptive to herbals/rife.
I don't have the confidence or time to set up a protocol myself, although I have looked into a few Buhner books.
Really not looking forward to getting another new drug from the pharmacy that'll lilkely give me diarrhea or worse.
This is the first time I've had such an emotional reaction from a rife treatment; usually I get more aches or nasal discharge from it.
I can't let myself get this emotional when I have a life to live and don't want to become such an invalid!! Tired of it!
If anyone knows of a high-quality LLND in the mid-atlanitc area, please message me about it. Thanks!
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
It sounds like you need a doctor change if you want to change to an herbal protocol.
It also sounds like the rife might have hit something to make you feel this way. Perhaps just take care of yourself for a couple days so your body can catch up to the work the rife did?
Go with your instincts on what your body needs. You can get better, hang in there!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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poppy
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Member # 5355
posted
If you don't want the type of treatment the doctor is prescribing, you need to leave, not ask her to change to a different type of treatment entirely. She evidently has reasons for what she is doing. Find a different doctor who goes an alternative route.
It does not sound like you are taking probiotics correctly if you are getting diarrhea. Take them two hours after every dose of antibiotic. If too soon, they will be killed by the antibiotics. Taken too late, and it will not be stopped in time. Also, the type and strength of the probiotics matters.
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lpkayak
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posted
Six and poppy have a lot of experience and know what they are talking about
In my experience however i see ppl do better when they hit everything hard with abx first and then switch to alternatuve
Does your doc know you are rifing with the abx? I could never have done both at the same time
The emotional stuff sounds like somethingvhit bart hard...but rifampin is supposed to do that. I know many who had a really hard time with rufampin but then got huge posituve results from.it...myself included
Ive been doing this a long time and know many who have gone thru tx and unless you are allergic i would encourage you to finish a year doing what the llmd says and then decide ifvyou want to switch
I have seen much better results when organized abx are used correctly first...and then a switch to herbs or rife
Much better than the other way around
I know abx is not the one and only answer for chronuc lyme...but i think it knocks down a lot of bugs so aternative can work better
Its important that you like and respect your doc and you are on the same page tho.
Ppl put down abx but there is a place for them and then a time to stop
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks for the responses and advice. It's helpful to hear others' experiences.
I'm sure my doc has a good grasp of effective treatment, but I was hoping she would come up with a whole new alternative protocol after I'd discussed my interests in herbals and she had seemed receptive to pursuing such a course.
Yes, she knows that I'm doing the rife along with the abx and she seemed to think it will prove helpful.
I'd heard that the rife works best off the abx, too. However, she'd explained the life cycle of the different forms of lyme; from what i gathered, it seems like rife can work just about any time.
On my "off" week, i do tend to concentrate on the rife then.
I've been doing some more self-care, today, after such a difficult morning; it's important to do that for sure.
And i definitely take probiotics regularly; that is standard for me. They work very well, ususally.
Perhaps I don't always take them at the most optimal times, though.
Gastro side effects haven't been a problem for me up until this very latest round of multiple abx at higher doses. At the end of that course, things went downhill in that dept.
Have recovered, now, from that; don't want it to happen again, esp. since talking with someone recently about C. Difficile and how she had to deal with those sorts of compplications; hard times for her!
I'll take these things into consideration. I respect my doctor, just not sure if I can keep on with the current protocol.
I've met several people who do like being on the abx for great lengths to target the lyme/bart/etc. So maybe i need to focus on changing my mind concerning it all.
Thanks for bearing with my complaints. Will see what happens with the new drugs.
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
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poppy
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posted
I agree with kayak, who said it well.
If your registration date is close to the time you started treatment, then it is too soon to give up on a treatment that appears to have some action. And hitting it with everything, abx and rife, herbal at once is liable to overwhelm you.
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lpkayak
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posted
Usually with high dose abx you will take good quality probiotics away from the abx and sbc. The abc prevents c-diff
If diarhea is still a problem you can take anti fungals-usually nystatun and/or diflucan
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does your doctor actually have the required training / study for the kind of treatment you want?
Just because one doctor may know some things about some herbs, does not mean they really have the education in this very complex area, especially if a LLMD and not a LL ND.
An ND has four full years of medical college that is devoted to herbal medicine. I hope you can find a good ILADS educated LL ND who will be able to offer you what you need.
As for rife, a MD is not allowed to really discuss it with a patient.
They can mention a few general things in passing such as what others might have found but they are not ALLOWED to get technical and certain not allowed to guide any rife treatment for a patient. This is by (bad) law. To cross these bounds could put them in jeopardy.
A LL ND can, however. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In this time of agency watchdogs that don't know all they think they are watching out for, some MDs may feel restricted to stick with only the most basic herbs that have the most PubMed abstracts and can be evaluated point by point as an Rx.
Artemisinin actually comes very close to that Rx model. But most herbs just do not work that way.
Because it would be the very, very rare LLMD who would be able to fully grasp how herbs work differently than the Rx concept,
how to combine, rotate
- how to "translate" into the world of lyme, too, in our day and age
- how to combine with Rx when or if appropriate -
and have the necessary background that the four years' training in plant medicine provides, do look to find a LL ND.
Many LL NDs have a good working relationship with LLMDs, too, and some patients incorporate both on their team (of course, if in the financial position to do so, few are, though).
I'm not sure but ILADS might be able to tell you which NDs in your region have progressed through their ILADS physician training programs. Worth a call.
posted
"If your registration date is close to the time you started treatment, then it is too soon to give up on a treatment that appears to have some action. And hitting it with everything, abx and rife, herbal at once is liable to overwhelm you."
I'm not sure what you mean by "registration date". I've been on abx for about a year if that helps.
My current doc thinks I can handle all the treatments at once, I suppose.
Ipkayak, I'm sorry but I don't know what sbc and abc stand for.
Thank you, Keebler, for the info. on the LL ND list affiliated with ILADS; I will check that out.
BTW, I brought up the rife with my LLMD; she waits for me to discuss it first. She just is open to it, which I appreciate.
Reading more in Buehner's book "Healing Lyme Disease Coinfections"...what a lot of info., extremely useful I'm sure. Probably would need some guidance from an LLND to implement that Bartonella protocol.
Maybe I could do the herbs on my own; however. I'd miss the human interaction of seeing a caring physician.
I think that helps me, that is, when my doc actually seems to want to help and not just treat me like a clinical specimen. Sometimes I feel like they're too busy, actually mentally overloaded, which I guess they are oftentimes.
They're possibly always feeling some stress being under the radar and thinking they'll be shut down any time, now, with the politics surrounding the TBD's so out of control.
What a crazy situation the whole Lyme debacle is for the people really dealing with it!!
Oh, I just remembered that my doc told me about a physical therpaist who does certain kinds of massage for Lyme patients; now THAT is something I really must look into!
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
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poppy
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posted
Your registration date is when you signed up for lymenet forum, and is down at the bottom of your posts...says Feb 2015. But apparently you have been in treatment a lot longer than that.
It is hard to tell how long to stay on any treatment. Sometimes it is just what one individual can tolerate. Maybe a switch works for them, maybe it doesn't. There is a lot about lyme treatment that is a crapshoot. Some people get better without much treatment, some need treatment forever evidently. Gives me a headache to think about this and cope with it.
Best of luck in whatever you decide.
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lpkayak
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Sbc is really important to prevent c diff...and you are correct. C diff is bad and you do want to prevent it
I cant spell what sbc is...can someone else help?
Its sorta s boulardes
I ll try to look it up
When someone doesnt respond to tx it can mean something elseis going on that needs to be dealt with first...like heavy metals, mold,parasites
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks Poppy, Ipkayak. Even tho I'm registered here, my brain doesn't always register!
Lyme & Co. is so complex; amazing how it can affect every system in the body and everybody somewhat differently and yet similarly, also.
Ok, I think it's the saccro... boulardii that you mentioned, a good yeast. Yes, I'm taking that again and it does make a difference.
One thing that would be really nice for the doctors to do is give more direction on exactly when to take all the stuff they want people to take. Maybe that's too much to ask of them who already have such a full plate of trying to heal these diseases.
Posts: 35 | From Eastern U.S.A. | Registered: Feb 2015
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lpkayak
Honored Contributor (10K+ posts)
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posted
Florastor .. saccromyces boulardii
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
my llmd insisted i stay on the sbc a long time after stopping abx
but you can take too many ...
it helps to get to know your body when i was on abx i had to take enough of a combo of good probiotics(i liked theralac-but there are other good ones), anti fungals...(nystatin works in gut and diflucan in the rest of body) so that my diarhea was controlled...i was teaching...minimal bathroom time
i took a huge amt of nystatin with no side effects but diflucan is know to be hard on liver-i think-so u dont want to take more than you have to
its a balancing act for sure
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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