currently taking atovaquone, azithromycin, artemisnin for babesia. My Lyme Doc is lost. Longs story short is that I research and am going to her at this point with suggestions. Can someone please post other protocols for babesia in separate order?? She doesn't know about Bactrim. How do I find dose info on this and what other med do you treat it with??? These are the things I need to bring to her. This way when I meet with her again I have some options and I'm organized. I know this is not ideal but my options are limited at this point. Thanks!
Posted by TNT (Member # 42349) on :
quote:Originally posted by goose: My Lyme Doc is lost. Longs story short is that I research and am going to her at this point with suggestions. Can someone please post other protocols for babesia in separate order?? She doesn't know about Bactrim. How do I find dose info on this and what other med do you treat it with??? These are the things I need to bring to her. This way when I meet with her again I have some options and I'm organized. I know this is not ideal but my options are limited at this point. Thanks!
The most convincing info you can bring to your doc are medical journal articles related to your questions. For instance, I learned by reading PubMed that Bactrim is a broad-spectrum anti-protozoal med. It seems most LLMDs don't understand this. Most think it only works on Bart.
Other than taking something like Dr. H's book (which has protocols listed) with you to your appointment, you are somewhat on your own with convincing your doc what meds should be used. We can make suggestions, but that is all they are, suggestions. Perhaps do Lymenet and PubMed site searches about Babesia meds/protocols. That would probably give you a good start. I have learned so much that way.
The Lyme Disease Solution book (by Dr. S) is really good! He lists protocols. I believe there is a second edition that will soon be published. The second one is supposed to be better than the first, and the first one was GREAT!
Like I said, Dr. H's book, Why Can't I Get Better is excellent, too.
Posted by Pocono Lyme (Member # 5939) on :
After trying multiple combos., I did research on malaria. The only drug that is available and will get the dormant form, in the liver, is Primaquine.
The other drugs get it from the blood stream but not the liver. Mepron, Chloroquine, Coartem,..will get it from the blood.
I did Primaquine for two weeks followed by Coartem for 3 days. I repeated just to be sure but probably didn't need to.
Primaquine is key to not relapsing.
Posted by TNT (Member # 42349) on :
quote:Originally posted by Pocono Lyme: After trying multiple combos., I did research on malaria. The only drug that is available and will get the dormant form, in the liver, is Primaquine.
The other drugs get it from the blood stream but not the liver. Mepron, Chloroquine, Coartem,..will get it from the blood.
I did Primaquine for two weeks followed by Coartem for 3 days. I repeated just to be sure but probably didn't need to.
Primaquine is key to not relapsing.
How was the Primaquine, Pocono? Was it brutal?
Posted by Jordana (Member # 45305) on :
Great info about the primaquine.
I'm looking for new options too. I can't take Buhner tinctures anymore while I take tinidazole but the CSA tincture was the only thing that helped. Once I stopped it the whole malaria complex started up within a week.
There has to be a nonprescription non-alcohol herbal option for babs -- somewhere?
Posted by willbeatthis (Member # 31111) on :
Pocono- Thank you for this information! I'll share it with my doc later this month.
Jordana- I'm on Zhang Coptis, HH and circulation- 3x a day with Crypto Plus- Researched Nutritionals- can you put in warm water or dose it earlier(leave it out) in the day to get alcohol out? I've read that somewhere. We need Keebler- maybe PM her on this. I'm very sensitive but so far so good! I also do rife.
Posted by Jordana (Member # 45305) on :
I really don't think that alcohol in water thing works; if you get the water hot enough to burn off the alcohol you're "cooking" the herb.
Posted by Pocono Lyme (Member # 5939) on :
TNT - I didn't have much of a problem with Primaquine. At the time I did it I was chair bound and in really bad shape.
I remember just being tired of so many meds. over the years, I just wanted to finish it.
Looking back, I wish I had done it early on. Two weeks for the Primaquine and three days for the Coartem was a much shorter course than months and months of Mepron w/zith , malarone, chloroquine ,...
Just be sure to check when you can take Coartem if that's the drug of choice for the blood stream as if I remember correctly, it may have to be taken away from other meds.?
Posted by TNT (Member # 42349) on :
quote:Originally posted by Pocono Lyme: Two weeks for the Primaquine and three days for the Coartem was a much shorter course than months and months of Mepron w/zith , malarone, chloroquine ,...
That's incredible!!
Why aren't more docs using this combo if that's all it took???!!! I believe the only person I've heard talk about this is you, Pocono. I remember you were in bad shape. I didn't know you eradicated it. I guess it must have been about this time that we saw less of you on the forum, so you must have been feeling better.
This protocol should be drilled into every attendee (physician) of the ILADS conferences each year!
Posted by LilaLee* (Member # 43649) on :
I bought a 2nd copy of the Dr H's book (Why Can't I Get Better) and GAVE it to my Dr. She was grateful.
**edited name of LLMD per LN rules**
[ 06-04-2016, 08:31 PM: Message edited by: Lymetoo ]
Posted by Pocono Lyme (Member # 5939) on :
TNT - I believe our LLMDs are way too busy to be doing research and taking care of patients.
I have to wonder too if the Primaquine and Coartem would have been rougher on me had I not done some prior treatment. Well, lots of prior treatment.
Yes I was in bad shape. The regimen didn't cure me by any means but it did get rid of the babs..
I hadn't been here too much due to other issues but am happy to say that now I'm not here too much because I'm spending time outside doing things!
Things I haven't been able to do in over twelve years. Addressing collateral damage/issues seems to be key for me now. And never giving up. I wanted to many many times.
Posted by LilaLee* (Member # 43649) on :
LYmetoo, i apologize for your need to edit, i didn't think referencing a book by name was a problem.
Posted by goose (Member # 45410) on :
My LLMD wants me to send her valid research for
the or dosage for the Primaquine and Coartem.
I've looked but can't find any. Can anyone help
me find this?????
Posted by Pocono Lyme (Member # 5939) on :
Hope this helps.
Posted by me (Member # 45475) on :
I found the following links. Granted, one is from quizlet, but you're right: info on using both of these drugs together is hard to find. Also, I found that most references were in books that you have to order.
I didn't find anything in primaquime in Dr. H's book and another Lyme book I have.
I will ask my LLMD when I see him tomorrow. I will let you know if I find out anything. I have a feeling he would have already put me on primaquime if he felt it would work ( I'm not saying it wouldn't work), but I could be wrong. He uses what he finds works in his clinical practice along with research. He does have me pulsing coartem along with other drugs for Babs.
Posted by Jordana (Member # 45305) on :
Hi Me- do you see Dr. H? I'd love to hear what he says. Thanks! Babs is a huge pain!
Posted by me (Member # 45475) on :
No, I do not see Dr. H. I see a different LLMD who is very good. I asked him, and he said that babesia doesn't have a liver life cycle and doesn't want me to do primaquime. He is hitting the babesia pretty hard with other meds, though.
Posted by terv (Member # 29410) on :
This is may have been mentioned above. I didn't have time to read the whole thread and found it interesting. It was posted by one of my lyme support group members.
A novel combination therapy cures an emerging infectious disease, babesiosis, which is transmitted by the same ticks that transmit the agents of Lyme disease, said Yale researchers. This “radical” therapy not only clears the infection but also prevents the recurrence that often occurs with existing treatments.
The study was published online June 6 in The Journal of Experimental Medicine.
Babesiosis (bab-e-see-oh-sis) is caused by the B. microti parasite, which is most often transmitted through tick bites. It is more common in the Northeast and northern Midwestern states, and likely is on the rise as infected ticks expand geographically. Infected individuals can be asymptomatic, or develop symptoms that range from mild and flu-like to severe and life threatening. The parasite can develop resistance to existing therapies, leading to relapses after treatment.
For their study, the Yale-led team first tested in mice with diminished immune systems four drugs that are currently used in the form of two combinations to treat human babesiosis. Only one of those drugs, atovaquone, was effective in attacking a target enzyme that, when mutated, allows the parasite to develop resistance. Using the mouse model, the team observed efficacy with a fifth drug (ELQ) that involves a similar mechanism of action as atovaquone but at a different enzyme target site. They decided to test the two drugs in combination.
The researchers found that the combination of atovaquone and ELQ-334, at low doses, cleared the infection and prevented recurrence up to 122 days after treatment.
Do you need to take an abx when treating babs or can you just use the anti malarias?
Posted by Harmony (Member # 32424) on :
you may want to take a look at the book "Healing Lyme" and the book "Insights into Lyme Disease Treatment"
the two references may serve to provide information to you and your health care provider
[ 06-18-2016, 10:28 AM: Message edited by: Harmony ]
Posted by terv (Member # 29410) on :
I have taken mepron, arteminisin, and enula. Then a host of abx with it. When I came off this protocol, neurological, brain fog and pain returned. I was on this protocol for 7 months.
Should have provided this info in my question.
I will look at your references. Thanks for the help.
Posted by TF (Member # 14183) on :
From Burrascano:
"the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses.. . . .
The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi.. . . .
Treatment failures usually are related to inadequate atovaquone levels.
Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients.
Artemesia (a nonprescription herb) should be added in all cases. Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be." (p. 24)
If your doc did NOT test your mepron levels, then perhaps you never achieved a high enough level in the blood. Many lyme docs don't know they can even order a Mepron level. They need to be told the name of the test, etc. since they have never done it.
So, perhaps you never achieved a high enough level. In addition, many have to treat for at least 1 year to get rid of babs. So, you likely did not treat long enough either.
This page of a lyme book tells you how to get the Mepron to be better absorbed:
Just some ideas for you. I got rid of babs with Bactrim DS for 11 months plus art 3 days in a row each week since I could not take any of the meds that have to be paired with Mepron.
If you want more details on my babs protocol, just let me know.
Posted by Harmony (Member # 32424) on :
I was allergic to Malarone
but I did take azithromycin (Zithromax), clarithromycin (Biaxin), and Bactrim and other abx before doing the high dose Art - and that may be very important to bring down the parasite load
a sudden die-off in someone who is very loaded with the parasite may cause the kidneys to fail or something like that
that's why one needs to have a health care professional look over one's shoulder and approve the treatment for that individual with that individual's history and health
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