Topic: Can you really get rid of Babesia ? All I do is Herx herx herx !
lymetwister
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posted
Just finished watching Dr. H video on Babesia. It's so discouraging to listen to all the therapies many of his patients have been on at much higher doses that I can tolerate and he states, despite all of these meds for years, many of his patients stay ill with this co-infection.
I'm on my 2nd round of Coartem. I'm not Herxing nearly as bad as I did the first round, but nevertheless, I am Herxing pretty hard. Tons of flu-like stuff w low grade fevers from noon onward.
Neuro stuff in the head really kicks in and Anxiety (not a real anxiety, it's that excessive Sympathetic Activity), really gets going.
I get so sedated and feel like I could crawl out of my own skin at the same time. I have trouble with this as it makes no sense Physiologically to feel this way.
Coartem seems to give a similar Mepron blues, not as bad this 2nd round as the first, but oh boy, not an easy drug to take. I'm gonna do 3rd round in about 2 weeks.
I have to plan to be down for the count for about 5-6 straight days on this drug. I didn't feel any baseline change with the first round. The is concerning.
WA1 Duncani is what I have. You can't take Coartem with much else b/c of the Cardiac side effects.
I'm gonna get back on Salt/c in between Coartem. Still taking Immunocal too, which by itself appears to be jacking up my Immune System. I can feel that working too.
It would be nice to know if Babs can be beaten down.
I was PCR pos. for WA1 Duncani through Igenix, and had IGG titers from Labcorp. I can't find it under my Microscope, but I know I'm loaded and perhaps other parasites, thus the Salt/c.
Dr. H talks about Night sweats and chills, etc., but he never speaks about the Neuro effects of Babs in the brain and CNS. Wonder why this is ? Seems like this strain is so much different than Microti. He also talks about using Cryptolepsis herb, which I've done in the past.
Appreciate your thoughts......
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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BoxerMom
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I know you don't want to hear this, but my thought is, "Settle in for the long haul."
For me, Mepron blues had nothing to do with Mepron. It was Babs' die-off. The med was irrelevant. I get depressed, weepy, anxious on any Babs' protocol.
The neuro stuff is insane. And duncani is microti on steroids. Those patients are SO SICK.
Now for some good news: Yes, you can beat it. I put mine into remission in one year, mostly with Mepron combos. It was he!! on earth, but I got there.
I was in remission for 18 months, then relapsed. I've been treating it ever since. I keep taking med breaks cuz my GI is struggling. The breaks have not been beneficial for treatment.
Detox is crucial. Movement is crucial. If you are able to lift light weights, please do.
You must manage inflammation with diet and supps and exercise. Chronic inflammation impairs the immune system, and will not allow you to get well.
I worked all through that miserable year. Don't ask me how. I just kept showing up.
Babs can become drug resistant. Change meds. Always be on a combo. Herbs can prevent abx resistance. There is tons of research.
Small doses are fine. I started with pediatric doses. By the end of the year, I was at Mepron 2tsp BID. That's what got me to remission.
When you think you are symptom-free, increase your dose or change meds. If you herx, you're not done.
Plan to continue, at least with herbs, well beyond the point of symptom-free. Do not relapse!
You can do this. It will suck, but the alternative (not treating) is far worse.
Good luck! You are in good company. Lots of Babs' warriors here.
nefferdun
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Member # 20157
posted
I had/have babesia duncani and it is under control now, so yes, you can beat it down. Last year i was terrified it was all over for me because the drugs were no longer working and/or I could not tolerate them.
Then I tested positive for protomyxzoa which has many symptoms similar to babesia. One of the main differences for me was it causes insomnia and when babesia was dominate I overslept.
When you are treating babesia and taking massive amounts of fat with the mepron etc, you are stimulating the protomxzoa to multiply and take over.
If I was going to do this all over I would go on the low fat vegan diet right from the start. I would also take LipoPhos EDTA as the fat source instead of dietary fat.
I am close to remission. The only symptoms I have are mild headaches and dry eyes. I was very sick but when I started ivermectin I shot uphill very quickly. I started methyl cycle mutation supplements and LDN pretty much at the same time, as well as the diet.
If something is not working, you need to try something else. Don't keep doing the same thing over and over expecting different results.
-------------------- 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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BoxerMom
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Neffer - I think your advice is right on. I need a little more fat in my diet, but I don't go overboard.
I don't think lymetwister has done much treatment for his Babs yet. He's been in limbo with questionable test results and incapacitating reactions to treatment.
Ivermectin also helped me once Babs was under control. And methylation supps. Love those.
lymetwister
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Member # 19590
posted
Thanks for your comments guys..
I guess the fevers and feeling like total doo doo comes with getting better.
These are real Herx's, nothing like I've ever felt before. Def. feels like my body is fighting this crap finally.
I hear ya on the "Gonna take time" thing. I have no choice but to continue pushing forward.
Glad to see some of you getting through this...
I tend to agree that Duncani must be Microti on Steroids as I have seen the difference in suffering between the two...
Thanks again..
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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annxyzz
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My 2 cents : THe inability to eradicate Lyme, babs, bartonella , FL1953 , after applying gazillions of antimicrobials by most of us leads me to this heretic question? What do we really KNOW about this disease ? If most of us ( not all but MOST ) relapse or herx indefinitely without marked improvement , do we not have to ask if we are after the right pathogen(s) ? There is a huge missing link that most LLMDs admit exists - the cure is still unknown , which means the root cause is unknown also . I can not look at thousands of desperate people doing everything they can think of with no result and conclude that we know our enemy . And the suffering continues ( and LLMds still get paid for their therapies even if there are no results ) .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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seekhelp
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When the most prominent NY LLMD and said to be one of the top docs in the country admits 99%+ failure rate on his treatment (Abx side), it's obvious the docs know little about the pathogens. That's indisputable. A 1% success rate at best is bleak. When would a 1% success rate be considered good at anything?
I feel like they are all shooting in the dark. The studies, research and $$$ just aren't out there. We're probably 100 years away from any real answers.
quote:Originally posted by annxyzz: My 2 cents : THe inability to eradicate Lyme, babs, bartonella , FL1953 , after applying gazillions of antimicrobials by most of us leads me to this heretic question? What do we really KNOW about this disease ? If most of us ( not all but MOST ) relapse or herx indefinitely without marked improvement , do we not have to ask if we are after the right pathogen(s) ? There is a huge missing link that most LLMDs admit exists - the cure is still unknown , which means the root cause is unknown also . I can not look at thousands of desperate people doing everything they can think of with no result and conclude that we know our enemy . And the suffering continues ( and LLMds still get paid for their therapies even if there are no results ) .
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I thought that LLMD said he gets 90% of his patients better, but he just can't figure out the 10%??
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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annxyzz
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Until the answer becomes clear we can all come here and collect our wisdom and experiences , like one beggar trying to point another beggar toward bread .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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feelfit
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Perfect, annxyzz. I couldn't agree with you more. Those of us who linger in the darklands for years at some point, finally have to say: "hey, this isn't working FOR ME".
And we go on, on our own, trying to discover what may work for us. Doctors don't have the time for such complicated cases and it gets old repeating our history to specialist after specialist.
I give my doctor huge kudos for trying, for looking at other things and for having the chutzpah to continue taking insurance. All without berating me for giving up on antibiotics.
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feelfit
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BTW, Twister, I have the WA-1/Duncani strain too. I've knocked it down a lot, I did find benefit in anti-parasitic treatment as opposed to antibiotics.
As you know, there is no easy answer- I give you credit for plugging away with the Coartem. I hope that in the end, you find benefit.
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lymetwister
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The Coartem really seems to be hitting my Babs. I have Herx'd from other therapies for Lyme as well. Some of these drugs have a crossover effect if you read carefully and besides being bacterialcidal, they are also Anti-parasitic. I don't remember every Herxing like this. Coartem contains 2 drugs. One is a form of Artemesia and shorter acting. The second has a 3-6 day half life.
Dr. H talks about this drug and how it can be very effective for some. I'll continue to update as I plan on doing at least 4 more round of this med. like every 2-3 weeks.
You guys make some good points. This is why I really don't understand about some of the Rally's. They seem to be focused on Insurance covering Long Term Abx. If I were able to attend one of these Rally's, I would be after Research. After all, isn't this what we really need ?
When these Dr.'s say Chronic Lyme does NOT exist, why don't they disprove us by using their high powered Electron Microscopes ? Makes no sense to me. If I had access to these, I would be after this in a heartbeat. It would be simple to look at brain tissue on Autopsy.
I don't think the Labs lie. I think the infections are very real. Perhaps more going on then we know, but also there is alot of literature on mutations and morphologies, so we need Research on how to treat these infections properly.
A 1 % success rate, or even 10% shows us that something is missing. I have heard the 90% number before too. I certainly don't see anything close to that number from everyone I've met over the 6 years I've had this. And, I have met many.
Thanks everyone for your input. I hope to be able to tell everyone things are Improving. The Coartem for me has set off all day Low grade fevers starting early in the day. Flu like symptoms are synonymous with taking this drug. Neuro flare as well.
Please keep your comments coming... You guys are awesome !
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I don't write here a lot but I just want to comment on this thread because it strikes a cord.
I tested positive for Babesia Duncani through labcorp with a titer of 1:1024 which is kind of high I think? not sure.
Anyway, this test result came during my second year of treatment. My doctor felt it was not a "real" positive but instead a cross reaction with the Fry bug(shorter easier spelling for my brain than protom...) so he elected not to treat the Babesia Duncani.
Ok so here is the thing, for the next year we treated only Bart and the Fry Bug. The Fry Bug treatment was HIGH dose ivermectin for 9 months and continues today. I herxed in the beginning to the ivermectin treatments with joint pain, stiff neck and fatigue.
Meanwhile, I got rid of one strain of Bart(with Bart meds) while the second remained. I felt I had to try and treat for Babesia Duncani just in case. So I have now been on Mepron for two months.
At first I herxed on Mepron with some neuro blues, stiff neck, slept ALOT and for the first time had heavy night sweats. By week three all of those herx effects disappeared except the night sweats. I am now up to 2 to 3 tsp a day of Mepron and 6 Arteminisin caps. My herxes are mild just night sweats mostly.
The reason for the long story is because I DO think that the Ivermectin I took for 9 months and still am on today MAY have lessened any deep babesia herxes by killing some of it prior to Mepron. Thats just a MAYBE.
I do think parasites(or something similar) are a way bigger part of this disease than originally thought. I think the Fry Bug is a cross between a parasite and a protozoa so it MAY fit the bill. It also could be something just more parasitic in nature. Or a combination.
I am beginning to think that in order to overcome Babs Duncani one may have to incorporate some kind of long term parasite treatment in conjunction with the regular babs treatment.
Just some thoughts.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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Catgirl
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I agree with Delljen (long term parasite treatment). Babs is a parasite, so it only make sense to hit it with anti parasitics. I started feeling better as soon as I treated with ivermectin.
-------------------- --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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GiGi
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I learned not to get hung up on "nightsweats" as Babesia, because they (nightsweats) can be caused by every other pathogen or neurotoxin known to man.
Toxic metals cause nightsweats as do parasites, the lungworm, as the body is trying all avenues to get rid of the overload. The body when stressed when still neurotoxic and exposed to EMF causes the worst nightsweats ever. I went through all of it.
Our skin is a huge organ for the body to use and it uses it when desperate enough to unload. We have a very unique built-in system, but often misinterpret the why's.
The only way I could ever figure it out is by learning to energetically test myself or seeing doctors who do. I used to have Babesia years ago, but I never moved a muscle to weightlift and never took Mepron or any combination.
I got rid of and am still disposing biofilm. It is the safekeeper of most of the pathogens and toxins. I saved a lot of it in a jar - now out on my deck frozen.
Take care.
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lymetwister
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**edited out per Lymenet rules** I guess I'll try this in between Coartem doses and see what happens.
Thanks again for all of your replies. **edited out per Lymenet rules**
[ 04-19-2013, 10:41 AM: Message edited by: faithful777 ]
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annxyzz
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As for ivermectin, I ALSO suspect it hits babs . My herxes were hell for four months , taking it every other day . I still do not feel well , but I have less breathing issues / asthma.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
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Buhner says you can try sida acuta, artimisinin, and cryptolepsis together to attack babs . If you can function, that is !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
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You might check with rifers about babs . I have mostly rifed for lyme , so can not say . Some with GB4000 may have better results - I have EMEM .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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CherylSue
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I don't understand the statistics mentioned above. Isn't it 90% success rate and 10% failure?
I've achieved at least 90% with abx, but haven't gone off them yet. Is that what the statistics refer to? going off abx success rate?
Confused.
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