Topic: I don't mean to be Debbie Downer, but reality is reality...
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am still working on it.... feeling way better from my herbal treatments from Monastery of Herbs.
I eat pretty healthy most of the time. no wheat. no cow milk products.
I have had this (tick deseases) forever it seems, but I am still such a baby when it comes to knowing anything and that is mostly because now that I know what is wrong with me but I cannot read and retain much any more so it is a very slow process.
I am looking into 23andme possibly, and heavy metals have been suggested by one test result, and I am planning other testing for that soon.
after my herbal tx my lingering sx that bother me the *most* are (besides my brain stuff that may be the HM)joint pain, overall muscle weakness and fatigue, and "gastritis" that comes and goes.
I am right now agreeing with what tincup says above- no cure. so I am starting to work on my immune system and how to build that up.
I am not saying I know for sure there is no one that gets cured after having it forever, but that is what I am thinking about my own case for sure. to me, that would be a miracle.
for me- would I do things different from beginning? yes. rememebr when it was all over the news to say "no" to ABX? that they were being over prescribed? that was like 11 years ago when I had one very smart rheumatologist suggest I take abx just to see if it would help and I declined.
I found this when I read through all my med papers while applying for disability.
He tested me for lyme and the good ol girl Elisa was neg. and he wanted to try abx anyway and I said no.
boy , if I could do it all over I sure would.
and I wish I would have listened to all the healthy food experts I spoke to in my 20s about eating healthy, and to the dr that knew everything about what my body needed to get right, but I was stuck on searching for a dx and while nothing is wrong with that,
but if I had listened to her and kept on the rd. at least I would have been more healthy and had a better immune system all along.
I am not ready to give up, but I sure have come to the crossroads (for me). not sure where I will go, but I am sure it will never be boring.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
What is frustrating for me and others on this Board is that often the posts in the Success Stories are too vague regarding what worked...what didn't...supplement lists...what was the main thing that helped them turn the corner...
I wish more people who post their success stories would take the time to be more specific
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's also of help to search the poster's recent history to see what all is going on with them since any success post. Sometimes, the follow-up should also be considered. Success is not always clear and can have caveats. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Bugg: What is frustrating for me and others on this Board is that often the posts in the Success Stories are too vague regarding what worked...what didn't...supplement lists...what was the main thing that helped them turn the corner...
I wish more people who post their success stories would take the time to be more specific
Bugg...
Some of us do try.
I posted regarding my success with mild hyperbaric on this thread (about 14 posts up), but it was deleted. (You can still read the reactive commentary...)
I have put many hours into posting specifics regarding my recovery, as have others who are doing this therapy. You can read more on this thread:
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Hi Tri -
I've been on oral abx for 7 years. The past 5 have been buggered by C.diff, so staying on comprehensive protocols has been rough. I have to stop abx when C.diff flares and get that under control.
But I am still making progress. Babesia has been a bear, and I have the (somewhat less virulent) microti strain.
I am always treating Babesia. If I come off meds, I relapse. And I've become resistant to some of the meds.
I'm currently on Mepron, Zith, Rifampin, Tindamax. Full doses. Daily. And Cholestyramine for detox.
I'm actually doing well on this program and many symptoms are improving.
But my doc's office is now offering Dr. J style IV treatment and I'm going to do it.
I exercise and eat a clean diet. I work very little and manage my stress the best I can. I sauna and skin brush.
And I still need abx. Lots of them.
I remember you saying you had Babesia duncani. It can take many, many years of aggressive treatment to get that under control.
New tick-borne viruses are showing up in the Midwest. I think ticks are carrying more than ever.
All of these pathogens swap DNA and find ways to resist treatment. I know this paints a grim picture, but it also shows why we need years of comprehensive treatment. (I'm not even mentioning the cytokine cascades and organ dysfunction.)
My heart goes out to you. I know you've done lots of treatment. I hope you can keep going, even in the face of uncertainty.
What I'm finding is that my pathogens respond best to drugs they haven't seen before. I've been rotating the same ones for a long time. I think new meds by IV will pack a wallop, but I'm trying not to have high expectations.
People are still getting well. Abx, herbs, Rife, hyperbaric, detox, diet, exercise, traveling to Germany...we all try different things. Most of us find a way to at least manage our illness and many continue to make gains.
I am ALWAYS learning on Lymenet. And reading and posting here keep me motivated, even on my most awful days.
I hope you'll stick around. There are always options.
Much love, BoxerMom
P.S. If I were you, I would blast Babesia with both barrels.
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Clostridium difficile, an intestinal infection. The hallmark symptom is watery diarrhea. If it gets out of control, you can end up with an inflamed colon that's actually called Megacolon. It can be dangerous if left untreated.
It's often picked up in hospitals and nursing homes. It's also called Antibiotic Associated Diarrhea. When your healthy gut flora is diminished, the C.diff can flourish.
Oral meds are Flagyl or Tindamax. IV meds are Flagyl or Vancomycin. Cholestyramine will bind and neutralize the C.diff toxin that causes the diarrhea.
The best defense is a healthy gut, so I take lots of probiotics. Sacchromyces boulardi is good, too.
posted
Be sure to protect yourself from c.diff, catwoman!
Take probiotics, s.boulardii and watch your diet while on antibiotics... No sugar or white foods!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: Clostridium difficile
Proton Pump Inhibitors (prevacid, Prilosec, nexium, and others of this Rx class) should also be avoided as they can destroy good gut bacteria and their use can set the stage for &/or make c.diff all the more dangerous. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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