posted
Hello, Just a little background here. I've been sick since 2003. Have tried numerous antibiotics, cow den protocol, AL Byron White herb, and am currently on AL again with detox 2 and NT detox.
I seemed to do OK on the last two I mentioned but eventually symptoms return and I need to go back on an antibiotic. Last year I did iv rocephin for 8 weeks but had to stop b/c I developed gallstones, I then did iv vancomycin for 9 weeks and felt good on both of these but when stopped symptoms return.
I've tried treating bartonella b/c I think I have it although I never tested positive. I couldn't tolerate rifampin. I took only 2 doses and thought I was going to die. Factive and levaquin caused tendonitis. I had a lot of nerve pain and tingling from flagyl and had to stop.
My LlMd doesn't want to do if again even though my gallstones are now gone after taking actigal ( which I should have been taking while I was on iv rocephin but was not)
I hate the idea of having to keep going back on antibiotics but in the past that is what has helped.Anything non antibiotic did not last. And the problem now is I am so much more sensitive to antibiotics that I cannot handle the herxes, I have a 3 year old to care for and cannot be in bed all day. They are now talking about Burner protocol. Which I need to do some reading on. Anyway I'm just feeling that I am running out of options and don't know what to do anymore.....
Posts: 79 | From Maine | Registered: Sep 2011
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posted
Read up on Buhner. His mycoplasma/bartonella book is great.
My daughter and I have been having good improvement with knotweed, houttuynia, sida actua, and for me cordyceps.
The dosages we can handle are usually lower than what he suggests. His associate said it will take at least a year of these protocols for healing, and he has mentioned on his site that some need to stay on indefinately.
We also intend to add ByronWhite to the mixture. If you have bart, A-Bart can send you for a loop with one drop. It does for us. A-L does pretty much nothing.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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gmb
Unregistered
posted
I took IV Rocephin for 14 months straight, then switched to IV Doxy for 2 more months. It took a good 8 to 9 months before I was feeling better.
If only I could knock down the Babs and keep it down.
Burner is pushing Sida Acuta and Cryptoleptis tintures, which I've been on since March along with Bactrim, Mino, and TindaMax. Neither of his herbs seem to be doing much.
His latest book is on Bart and Micoplazma (sp? lymebrain. It is a real good read and reasonably priced.
posted
Buhner yahoo discussion site: lyme_aid_buhner. A lot of these folks can't take abx.
Posts: 13171 | From San Francisco | Registered: May 2006
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lpkayak
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posted
when that happened to me i switched to buhner teas
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Have you considered biophoton or chiren treatment?
Posts: 486 | From USA | Registered: Jan 2012
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CherylSue
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Member # 13077
posted
There are other abx you may tolerate. Ceftin is a good one for Lyme. Flagyl has to worked up to gradually and pulsed. Take a lot of Vit B with Flagyl to reduce the tingling.
There are so many abx out there, you need to vary them.
Byron White Formulas and Buhner's herbs may be helpful to try with abx and when you are off them. Don't stay too long off abx if you need them, IMO.
Keep trying and good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Razzle
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Member # 30398
posted
Consider antiparasitics. I think Lyme seems to have aspects of parasitic organisms...and those who seem to be getting well are those who are tackling parasites in addition to Lyme.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Sounds like Bartonella is a major issue for you. You could start slow on the Rifampin so you don't herx too hard and work your way up to a full dose.
Posts: 845 | From Northeast | Registered: May 2011
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Catgirl
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posted
I agree with Razzle, I would treat for parasites.
Parasites are a big part of what is keeping us all sick, IMO. I wouldn't believe it for the longest time, but something just clicked in me one day after reading Gaels, Tammy's and other people's posts/experiences. I treated for a whole year before worms finally started exiting. They are there, even if you don't see them. They like their habitat and don't want to let go of it.
Also, what are your symptoms?
I was surprised to find out that my recurring babs, bart, lyme and more were also due to proto (protomyxzoa). It produces tons of biofilm so the other bugs can survive and flourish. It was difficult for me to identify (overlapping sympoms). I just thought I had bart, babs, lyme, etc. I do, but they were not going away because of the proto. IMO, until you address proto, they won't leave for good (they will just hide out under some biofilm). IMO, this is the most overlooked co infection out there, right next to parasites.
Check out THE PARASITE WARRIOR'S THREAD. Also, there are several threads on protomyxzoa (FL1953).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I would strongly advise looking at these : Sovereign colloidal silver ( Dr Burgdorfer thought silver was BEST for borellia) or Argentyn Silver - both are nano silvers and dissolve biofilm . Read about Dr Bob Becker and colloidal Silver studies. Colloidal silver even improved outcomes with cancer patients on chemo ! Probably because of its action on biofilms. You can google studies on silver and cancer done in England at Motley Fool .
I would also advise the parasite protocol rotation- esp IVERMECTIN ( every OTHER day to avoid side effects ) and albenzadole. Most of us here were in shock with the herxes that came with parasite drugs. That says a lot !
Posts: 153 | From Huntsville Al | Registered: Jun 2013
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Rivendell
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posted
Along with Buhner protocal, there are Beyond Balance herbs, since you mentioned that Byron While didn't help.
Maybe combining the two protocals would work.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Judie
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nefferdun
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posted
I got to the point that I couldn't tolerate the ABX either. Sometimes I thought I was herxing, or in a relapse that had developed resistance to drugs or having side effects to the drugs. I was really scared.
I used massive amounts of herbs; Cowden, Zhang, Buhner, Rain tree.. . . Nothing worked. I bought the PE1 and used it for hours and hours. Nothing.
Like you, I thought I had recurring bartonella and babesia as well as borellia. Finally I tested positive for protomyxzoa. I began treatment with stromectol/ivermectin and within a few months I felt better than I had in years.
I would get tested if I were you - any of you out there, as they are finding 80% of us have it. It is preventing us from getting into remission.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Wow, I haven't been able to get online for a couple of days. Thanks for all of the responses! I do have a couple of questions and comment, hopefully some will get them.
Rowingmom, I also reacted very strongly to Abart but I think I also tried to increase it too quickly, I would like to try it again. I herx from AL too, have to go slow. I will read up more on Buhner and check out his book thanks.
GMB, wow you did iv for that long! And it sounds like you are still having issues even after such a long time on iv. That's why my llmd doesn't really want to try iv again b/c he thinks it will not cure me and that it will not be worth it.
Keebler thank you for the link, I have some reading to do, I know very little about rife. Have you done this and is it helping?
Birdie67, what are biophoton and chiren treatment? I will do a search to see if I can find some info. Is this something you have tried and if so has it helped?
Thanks razzle I will ask my doctor about parasites, sound like it may be a factor too.
RC1, when I took rifampin my llmd said that I have to start at full dose b/c of high risk of resistance so I couldn't start at a low dose. I really do think I have Bart but I can't take the antbiotics to treat it, its very discourageing.
Wow thanks cat girl, I have never heard of protomyxzoa! I will ask my llmd about this too!
Nefferdun, what is the test for protomyxzoa?
Posts: 79 | From Maine | Registered: Sep 2011
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CD57
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posted
Nefferdun, did you herx with Ivermectin, I forget, or just feel better?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
Nefferdun, did you herx with Ivermectin, I forget, or just feel better?
Posts: 3528 | From US | Registered: Apr 2007
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Phoiph
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posted
BBinme...
You have many suggestions here, but I just wanted to add something for you to consider that was the answer for me.
I, too, became intolerant to antibiotics, and was becoming more and more ill, to the point where I became housebound for 5 years, unable to take anything, as I had become so toxic and environmentally sensitized.
Please read this thread from the beginning...it describes how I became well with home hyperbaric without antibiotics, and now have my life back, drug free:
You mention Byron White...I know someone who just consulted with him, and he also regularly uses a home hyperbaric chamber and has for some time...
Posts: 2072 | From Earth | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LL Naturopathic links here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
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posted
I am in the same boat. ANY treatment that kills causes my blood sugars to become uncontrollable and inflammation/pain to go wild. I am a poor detoxifier. Methylation, biotoxins (HLA), intracellular toxins, heavy metals etc..
I *think* the key is detoxification. I have signs of heavy metal toxicity lately which makes sense because apparently when some of these bacteria, parasits etc. are killed they release heavy metals into our system. I also need binders for biotoxins. I figure I'll be on slower treatment with heavy detox from now on.
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