Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've been treating steadily with minocycline, tindamax and Buhner herbs for two months with a ten day break in the middle to clear my blood for Igenex.
Nothing is better. I mean just nothing. I shake all day and have really upsetting weakness especially in my neck and shoulders, what seems like some motor neuropathy in my hands and fingers. I have never had a parkinsonian tremor; just the shakiness and ratchety movements.I don't really have a lot of pain but I do get occasional mild migraines.
This is basically what I started out with. The only thing that's better is I'm not bouncing around with my neck shaking like crazy when I lie down, but that had started to resolve before I started treatment.
Not even the floaters are much better.
I don't know what to think. I got my doses up successfully to more of a "killing dose" and expected things to go really slowly, but I would think that the Buhner stuff would have helped some of this by now. All the mino seems to do is make me really sleepy and depressed.
Because of that it feels like cognitively I'm worse.
How should I be feeling right now? Shouldn't I be feeling some difference?
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Gotta herx to heal ?.i dont like that deal....have you seen microscopy thread ..dudefrom ks was on mino tini and ketes were still swimming...this lady Mildred was on 4 abx and they slowed down but she could only handle it for a day...buhner helped sweating ya...do you have babs?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Member # 45305
posted
I'm not sure if I have babs. I'm waiting for my FISH test and I hope it says something.
I was just watching a talk by a lady who got well from a five year infection with rife.
It seems like a lot of people are saying this is really what is keeping them in remission.
Sucks. I'm doing everything I know to do.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
It's a matter of finding out what we respond to.
I fixed all eye symptoms, including floaters, by drinking mangosteen juice, an anti-inflammatory juice. I like the Mango-Xan version as it's the most tart. You can find mangosteen juices at healthfood stores and online.
I drink around an ounce a day to keep my eyes healthy and my intestines regular.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I tried Stephania for eye symptoms and I've been using it for about two weeks. It seemed to help in the beginning but I was just having a good eye day that day.
I bought a bottle but I didn't really give it a good try. I think mangosteen is in the latest Rosner book.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
No to be a Debbie Downer, but it took years before I saw any significant improvements. I never saw any major changes with herbals, but I still take them.
Keep trying and rotate often. From Bryan Rosner: "Just because something didn't work in the past doesn't mean it will not work in the future."
Posts: 119 | From ground zero | Registered: Mar 2014
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sutherngrl
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Member # 16270
posted
I was two years into treatment before I started to feel even slightly better. Took about 3 and 1/2 years to feel a good bit better. And 4 and 1/2 years before ending treatment.
If you have had Lyme for over a year, then I doubt you would feel better in a matter of a couple of months. That would be unusual.
Hopefully it won't be years for you, but it's not uncommon. Don't mean to bring you down. Just being straight forward. Some people feel better faster than others.
I learned pretty fast to stop judging my progress on a monthly basis, as it can be way too disappointing and frustrating. PATIENCE.... Something I learned while treating LD. A hard lesson, I know.
Also for comparison, I did not do herbs. I did antibiotics and supplements.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Hopefully the testing will bring some clarity. Are you testing for co-infections too? It could be that you have a raging co-infection that the current meds aren't hitting.
Of course, these are all clinical diagnoses as the test aren't perfect, but a positive result can be really useful.
The other things is - you may not feel much better until you repair the systems that Lyme has damaged and this is a slow process. Fixing adrenals, thyroid, dysautonomia, removing gluten, detox all took me to a new stage of wellness.
Posts: 1737 | From Virginia | Registered: Aug 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks.
You know, I don't mind if getting well takes a long time. I've read enough about this now to know that a couple years is often the best case scenario.
I just wish there was a way to be reassured that doing whatever I'm doing is actually accomplishing something. It's really nearly impossible to figure that out.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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Member # 45305
posted
That's interesting. Thanks patches.
Posts: 2057 | From Florida | Registered: Feb 2015
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Not everyone will get better. I have treated with the best of the best combos of abx & herbs. Nothing has seemed to work & I have only gotten worst with treatment.
I have spent thousands as well to much avail. Dr. Alan MacDonald's studies have also shown proof of Borrelia burgdorferi & B. miyamotoi in the tissues of various patients who have been treated for months & one for 5 years.
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