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Posted 10/29/2018 3:12 PM (GMT -5)
I'm getting close to throwing in the towel on the basic oral Abx, herbals, supplements routine. I've been sick for over three years now. I've been on antibiotics for around 2 of the 3 years.

What have people done after their treatment failed? Did you find any success?

I tried Buhner's protocol for six months while I was taking a break from Abx last winter into this past spring. It didn't help.
Posted 10/29/2018 3:36 PM (GMT -5)
Did you test positive for Lyme in any of the tests?

Did you get tested for parasites?

Did anything work at all?
Posted 10/29/2018 3:41 PM (GMT -5)
Did you treat Babesia fully?

Or just antibiotics for Lyme/bart?
Posted 10/29/2018 5:25 PM (GMT -5)
I think Girlie is on to something with Babesia. I don't know if I have it because I ran out of money for tests but as soon as my doctor gave me ivermectin, which I believe kills Babesia? I started making major progress. Up until then no progress. You might need to ask your LLND/LLMD about this. Or switch to a stronger anti-parasite

Did Dr. Horowitz say Babesia was malaria?
Posted 10/29/2018 9:44 PM (GMT -5)

oregonhay said...
I think Girlie is on to something with Babesia. I don't know if I have it because I ran out of money for tests but as soon as my doctor gave me ivermectin, which I believe kills Babesia? I started making major progress. Up until then no progress. You might need to ask your LLND/LLMD about this. Or switch to a stronger anti-parasite

Did Dr. Horowitz say Babesia was malaria?

Yes Ivermectin kills Babesia.
For some of us, Ivermentin may not be enough - and need Mepron or malarone.

Alinia also hits Babs

Babesia isn’t malaria, but they are both parasitical (not bacterial like lyme) - so that’s why anti malarials are used.
Posted 10/31/2018 4:42 PM (GMT -5)

oregonhay said...
Did you test positive for Lyme in any of the tests?

Did you get tested for parasites?

Did anything work at all?

Positive ELISA, negative WB three years ago.

I've been on Abx and herbs for Lyme, Bart and Babs. I'm currently treating for Babs with Mepron, Zithro, Artemix and crypto. Come December I will be treating Bartonella again. Of course I am hopeful but the reality is I'm pretty sure I'm not going to magically get better after another antibiotic regimen.
Posted 10/31/2018 4:44 PM (GMT -5)

Girlie said...
Did you treat Babesia fully?

Or just antibiotics for Lyme/bart?

I'm currently treating Babesia until December and then back to Bart treatment. My confidence in an antibiotic regimen being the answer is at an all time low.
Posted 10/31/2018 4:48 PM (GMT -5)

sandyfeet said...
You're treating all three, borrelia, babesia, and bartonella right?

Did you have any response to any of the Buhner herbs? I'm thinking 6 months might not be long enough to see significant progress if you're dealing with multiple infections but if you're not seeing any improvement or reaction to some of the herbs then you may want to look into another herbal protocol if you're not keen to continue with antibiotics.

I noticed an improvement of my newest symptoms within a couple of months on Buhner but then it was a long period of plateau, and some ups and downs. I'm now 14 months in and I'm starting to feel like I'm making real progress. I did do some things beyond the basic Buhner protocol - I took higher doses on crypto as it was a good herb for me, and I experimented with other herbs and supplements. I'm starting to believe that getting Babesia down may be really important.

I'm also now looking into the possibility of mold as I think this may be part of the puzzle for me. If you're not making progress you might want to look into other things that may be a factor like thyroid, mold, nutritional deficiencies etc.

I think a lot of us have to do more exploration to figure out what else needs to be worked on.

Good luck!

Yes, I am treating all three. I wish Buhner would have worked. It's a heck of a lot cheaper than treating with a LLMD. I relapsed while I was on Buhner though. It put me out of work and I went back to my LLMD. I'm still struggling. Starting to get depressed not being able to work or get out a lot in the real world!

Everyone has their own journeys and opinions. I know mold, heavy metals, toxins etc. can be a big deal but I'm very wary going down the rabbit hole and spending thousands more on "maybe" treatments. I like my LLMD and I hope most LLMDs are respectable but I also know they are trying to make money.
Posted 10/31/2018 4:58 PM (GMT -5)
Well I got magically better after Ivermectin and antibiotic regimen.

That and detox.

Do you have mold? Are you using Epsom Salt on all your laundry in every shower? Do you have a dehumidifier to keep your house under 30-50% humidity? do you have a HEPA filter? Are you filtering your water?

After and during my 4 months of Ivermectin and Moxidectin protocol I made up a "anti biofilm" protocol. NAC, Stevia and Alinia. I check my teeth for plaque every 4 hours and take a NAC -- usually 4-6 times a day. NAC kills the plaque on my teeth so I figured it stops the formation of biofilm inside of my body, with the antibiotics. Who knows if this works.

I only used Amoxicillian, Doxycycline and Penicillin IV antibiotics. All of them are effective and known to kill lyme. That, with the antiparasites specifically ivermectin, and my made-up anti-biofilm protocol, and herbs, now I am on just NAC, Garlic extract, and Spirulina today. I am expecting lyme to come back and become symptomatic but really that hasn't happened in 8 weeks... I think my immune system has finally kicked in. So get a prescription for Ivermectin is my advice and treat your babesia, I bet in 4 months your antibiotics will start to work.

Maybe you are doing everything right and just need more time? That could be 100% the case as well. Trying to help.
Posted 10/31/2018 6:56 PM (GMT -5)
Great Plains has a mycotoxin test that is moderately expensive (not as bad as realtime labs and tests for more mycotoxins). If you continue to not have any luck with abx you may want to explore.

Have you considered viruses? What are your sx? If you have viral sx like fatigue, you could do antiviral trial (valtrex, acyclovir or famvir) or herbs like olive leaf, oregano or something like liposomal Biocidin which is a blend of oils.
Posted 11/1/2018 8:35 AM (GMT -5)
We have a local girl who was very sick for years and stopped being able to keep down any antibiotics. She got an AmpCoil and made incredible progress. I can't begin to wrap my mind around how it works and I have some concerns about it, but my daughter and I did a demo, and the app where it determines your top priorities was weirdly accurate. Keeping an eye on it for future consideration.

That is definitely a "maybe" treatment, though. I would not consider it unless I had exhausted all options that are better studied first.

There are so many different pieces to this puzzle -- please keep looking for yours.
Posted 11/6/2018 1:34 PM (GMT -5)
I just looked up Ampcoil. Close to $11,000 for one. Way out of my reach.
Posted 11/6/2018 1:38 PM (GMT -5)

WalkingbyFaith said...
I just looked up Ampcoil. Close to $11,000 for one. Way out of my reach.


Way out of most of our reach....sheesh!

Maybe there are used ones to buy.
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