posted
After about a year of treating Lyme and Bart with improvement but not total recovery I'm trying to get my LLMD to try a different path and try treating babesia since some of my remaining symptoms overlap. I have been off abx for 3 weeks now with no increase in symptoms
Was wondering what the best babesia abx combos are so I can push my LLMD on them. I am already taking artemisinin.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
I would check insurance coverage for Mepron and Malarone to see about co-pay amount. I think they recently released a generic Mepron, but not sure if Malarone also has a generic.
Its really a flip of the coin for these two, some respond well to Mepron, and other do better on Malarone. Either one needs to be paired with a macrolide (Azith or Biaxin) to prevent resistance. I feel Biaxin is a stronger choice and it is suppose to work across all 3 B's, but some folks don't tolerate it that well.
Posts: 119 | From ground zero | Registered: Mar 2014
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posted
All my prescriptions are only $5 thankfully from insurance. Interesting about Biaxin. Il try and push for that
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Read the Burrascano Guidelines. He tells the most effective treatment for babs including proper dosages and the necessity for measuring Mepron levels. Most doctors don't even know it is possible to measure Mepron levels, but it is and it can make the difference.
And, for something more recent, below I am posting the notes I took in late 2011 when Dr. H. spoke on treating babs at a Lyme Conference.
These notes will give you some ideas of the latest thinking:
2011 ILADS Conference, Toronto, Canada
Lyme & Babesiosis: Updates on Treatment & Diagnosis 2011
Dr. H 10/28/11
He has 20 years of experience treating lyme; more than 12,000 chronic patients He was in France and China discussing babesiosis. Talked with Chinese CDC regarding parasites
Some of his patients get better with glutathione alone. It opens up the detox pathways (is an anti-oxidant)
Borrelia miyamotoi is showing up in ticks in Hyde Park, NY. This strain is in Japan. We can’t test for it.
There is a new ehrlichia species also found.
Indicators of bad outcome with babesiosis:
male sex, extremely high WBC
We see blood transfusion babesiosis in California. WA-1 is now in the Northeast U.S.. It is found along the entire eastern seaboard. It is difficult to get a positive test for it. LabCorp has a WA-1 test. The FISH through Igenex is also very useful.
He treats with clindamycin with azithromycin, also Mepron, then malarone. There is lots of Mepron resistance. So, he adds Septra (Bactrim). This works well. Also, he uses much higher doses of Mepron due to the Mepron resistance.
He uses coartem (which has Artemisinin in it) Dosage is 4 twice per day. Take at 7 a.m. and 3 p.m.; then switch to 7 a.m. and 7 p.m. It can be pulsed once per month.
You can’t combine this with any med that affects the QT interval.
Babs is spreading world-wide. Babs also suppresses the immune system (based on a study of b. microti)
Artemisinin is not as effective now as it was in the past. Use art when coartem doesn’t cure the person. He no longer uses ketek.
Beta blockers (blood pressure medicines) control these types of parasites. So, use them as an antagonist. We need a study on this. Heparin may also inhibit babs. Need a large study on this.
Curcumin (a herb)--he is now using it to treat babs. Published studies show it is useful for malaria.
Cryptolepis has been used in Africa for malaria. There is a published study in Ghana. It had a 93% cure rate (a 50% cure rate in 3 days; 90% cure rate in 7 days) You can get it at: www.woodlandessence.com
If adrenal function is low (patient has a low cortisol), they will not respond to antibiotics.
He told of a patient with intractable babs. They were treated for babs for 5 years and were not cured. Then, he gave them 1 teaspoon of cryptolepis 3 times per day with Byron White herbs. This is making the patient feel well. He hasn’t found any side effects with the cryptolepis. It may not be curative. It lowers the parasite load and strengthens the patient’s immune system.
Brucellosis also causes night sweats, so check for this in a patient with night sweats.
Use malarone for the patient who can’t clear babs. Low dose to maintain them.
We need new treatment options for babs.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
And, here is another lyme doctor's page on how to treat babesiosis, complete with dosages and special instructions:
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Coartem is another babesia drug. It's a concentrated artemisia and another drug combined. It's good. You do it with pulse therapy and malarone.
Alinia is another one to check into for babesia. It's also a cyst buster.
Biaxin is strong, but it can also cause some strong side effects. It's not good if you have a sulfa allergy.
I'm treating with malarone and mepron. I'm doing quite well with those. I never tested positive for babesia, but there are many strains. I just feel better and better on it.
I started with malarone and felt immediately better. Muscle weakness went away and energy came back. We up the dose, pulsed with coartem for a bit, then decided to do heavy doses of malarone and mepron. I did some alinia in there too.
Malarone and mepron are both generic now, but even generic mepron is $1000 a month. I hope your insurance will cover it. I think I want your insurance if all prescriptions are only $5. That's great!
Artemisia didn't even touch babesia after being on it at a strong dose for 8 months (no herx and no change).
I'm allergic to zith, so can't comment on its effectiveness.
Askapatient.com has info on side effects from patients who review drugs. I found it helpful to know what risks I'm taking when starting something new. If you aren't one to get paranoid reading the bad effects of something, it's a good read.
posted
Very torn on what to do. LLMD said she would prescribe me mepron and Biaxin or Azithromycin depending on which one I wanted to do.
Seems people are split right down the middle with recommendations
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Also the Dilemma I'm facing is we don't know if I even have babesia. We are going off a clinical diagnosis of my remaining symptoms after treating Lyme and Bart for a year.
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I've had all those symptoms along with chest tightness so bad it's hard to breath and severe muscle weakness.
No night sweats. My suspicion is I have a form of babesia that the tests don't look for and may present slightly differently.
"Also the Dilemma I'm facing is we don't know if I even have babesia."
Same with me. 10 months treating Lyme, no progress with some symptoms.
We did a trial of low-dose malarone. The first day after I started I had tons of energy like I had in high school. Energy tapered off after that, but no herx. It was the most extreme, positive reaction I've had to any med.
When we went up on the dose, I felt like I could do jumping jacks at midnight I had so much energy. Again, it leveled out after that.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Interesting. Il take that positivity anyday. Glad I'm not alone
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
I've been racking my brain all day trying to figure out which ones to chose. Still haven't made a decision ugh
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
I am on malarone, artemesinin, biaxin, tinidazole and cefdinier (omnicef). My energy level increased exponentially about 2 months in to adding the malarone. I tested low positive for Babesia Duncani and never had night sweats (although I had day sweats with the Bartonella). However, after beginning treatment - I did get some night sweats - not every night - but one time so bad that it imprinted/etched the pattern from a throw pillow that I was sleeping on ONTO my leather couch. The 12x12 marks remain today -UGH! I never realized how hot I get when I get hot at night - but apprently enough to etch designs into a leather couch. Gheesh!!!
Anyways, I am not through the Babesia yet and this is my 5th month of treating. Every few days I get the head pressure, neck pain, head symptoms, etc. that for me are classic Babesia symptoms. BUT - definately had a huge turn around in energy. I feel alive for the first time in 8 years.
Posts: 123 | From Washington State | Registered: Dec 2013
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posted
I am on malarone, artemesinin, biaxin, tinidazole and cefdinier (omnicef). My energy level increased exponentially about 2 months in to adding the malarone. I tested low positive for Babesia Duncani and never had night sweats (although I had day sweats with the Bartonella). However, after beginning treatment - I did get some night sweats - not every night - but one time so bad that it imprinted/etched the pattern from a throw pillow that I was sleeping on ONTO my leather couch. The 12x12 marks remain today -UGH! I never realized how hot I get when I get hot at night - but apprently enough to etch designs into a leather couch. Gheesh!!!
Anyways, I am not through the Babesia yet and this is my 5th month of treating. Every few days I get the head pressure, neck pain, head symptoms, etc. that for me are classic Babesia symptoms. BUT - definately had a huge turn around in energy. I feel alive for the first time in 8 years.
Posts: 123 | From Washington State | Registered: Dec 2013
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posted
Seems that everyone who is on Malarone gets more energy and feels better but I read that mepron is stronger than Malarone. I wonder if mepron would make me feel better? I'm still torn between zith and Biaxin. I read a lot more People taking Azithromycin than Biaxin but it says that are in the same drug class
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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dbpei
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posted
Mepron made me feel better, Tbone. I took it with biaxin and omnicef. Only 4 months and I think I probably should have stayed on it longer.
I am taking artemisinin now - pulsing 3 weeks on 1 week off. I am also doing a few other things (Rife, variation of BEG nasal spray, and chelating heavy metals) so it is hard to know what is causing what.
I think there are bugs of some type (surrounded by heavy metals?) that have been hanging out and reproducing in this part of my body. Posts: 2386 | From New England | Registered: Aug 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
TBrown-
I had biaxin early on in treatment in a 5 abx combo.
All I noticed is the gross metallic taste in my mouth that TickBit mentioned.
For babesia my doc gave me Mepron, azithromycin and cryptolepsis. High doses. Had done the zith and crypto before. Only the mepron was new. It was $800 a month for Mepron.
Hated it. Just had incredible stomach cramps, (bowl me over type cramps with yelling, they hurt so bad)the entire time from Mepron zith combo. Stuck with it for a month then me and my doc both said enough with the mepron.
Then doc said try Alinia and Tinidazole in combo with cryptolepsis, Lightning Pearls, A-P.
Worked like a hot dam. Within 3 weeks sweats and crippling fatigue disappeared.
Loved that combo. Favorite of all the combos so far.
Good luck deciding.
Will it help if you see which abx has less interactions? I think azithromycin and biaxin have some heavy interactions with other meds. I would pick the one that has the least interactions with other tick-borne meds, just in case your docs wants to add another abx in later.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Tbrown - You might have to try a couple different ones to see what best works for you.
My doc tries me on one thing, then adds another a week or two later so we can gauge what's doing what.
All of us seem to have so many different reactions to the same meds. I've done great on malarone and mepron from the beginning. No stomach problems, but alinia made me have the runs from hell.
You need to take malarone and mepron with fat or they don't absorb.
Posts: 2839 | From California | Registered: Jul 2012
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