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Calling all lymies with wealth of antibiotic experience.

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Calling all lymies with wealth of antibiotic experience.  
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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 126
Posted 12/21/2018 9:14 PM (GMT -7)
I am wondering if someone can tell me if the following antibiotics attack all tick borne diseases. My doctor is treating me for babesia, bartonella and lyme but I want to know if these antibiotics would help with all the other nasty tick diseases that could be hiding as well.

I am on bactrim, malarone and clindamycin along with nystatin for an anti fungal.

Thanks guys!
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 12/21/2018 9:52 PM (GMT -7)
Which ones you referring to?
Ehrlichia and Anaplasmosis? (SP?)

I believe those two are treated when you treat lyme (same abx)

Mycoplasma pneumoniae?

My LLMD told me Rifabutin is good for that. He stated that at my last appt. (and I think Rifampin is probably good for it too )

Bactrim may not be enough for the Bartonella. Sometimes other meds are needed: Rifampin or Rifabutin are often used.
And there’s the fluoroquinolones which have the fda black box warning... but are apparently effective.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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Charlie55
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Joined : Nov 2017
Posts : 268
Posted 12/21/2018 10:07 PM (GMT -7)
They look to be covering a variety of coinfections, but biofilms and persister cells?

Bactrim is listed as persister cell killer through the John Hopkins study, but an efficient one? Hard to say, but I never responded to it well, but heard others have...

Malarone I had a good experience with, pairing it up with zithromax, both these worked well against parasitic coinfections like Babesia, possibly biofilms too, as antiparasitics like Flagyl has shown to work well against biofilms and round body forms.

Clindy is another one for Babesia. I suspect your LLMD thinks you have a bad case of Babesia if he or she has you on all of those, I've also heard Bactrim might have a profound effect against Babesia.

Totally understandable your Doctor has you on all of those, a Yale study suggested that the traditional antiparasitics worked poorly against Babesia
https://news.yale.edu/2018/11/29/yale-scientists-develop-new-system-study-emerging-tickborne-disease

I've heard many LLMDs say, Babesia can extremely prolong patients treatment of Lyme Disease, for instance 5 years vs 10 years. Here's an interesting article titled "Babesia and Lyme worse thant you think"
http://danielcameronmd.com/babesia-and-lyme-its-worse-than-you-think/

Also, if I were you, I'd also be taking Stevia with those pharma drugs to combat biofilms, it's possible that even Babesia could be hiding under biofilms as well, along with other coinfections. Many LLMDs and scienstists like Dr. Sapi believe that many of these coinfections work together with borrelia to keep our immune system suppressed.

I've been having success taking Stevia Wholeleaf tincture underneath my tongue, holding for 15-30 seconds, then swallowing after taking my antibiotics. Also putting Stevia into empty capsules, along with Xylitol for better absorption, I highly recommend veggie capsules because they don't melt and break down as quickly as gelatin. There are also thicker capsules from the AromaReady brand.

Sadly, not all LLMDs are treating biofilms properly like the top ILADs LLMDs are, for instance Dr. H and Dr. J. Dr. J likes to use xylitol and lactoferrin with his antibiotic protocols.

It also might be a good idea to buy some Cryptolepsis Tincture, put that in an empty capsule and swallow it a few times a day. It tastes horrible, so I recommend capsules vs swallowing it orally. Crypto has shown to work well against Babesia. Many LLMDs and patients pair up their antiparasitic pharma drugs with antiparasitic herbals to increase the effectiveness.

I've heard some LLMDs even adding in plaquenil to increase the efficacy of clindy, just like quinine does.

https://www.treatlyme.net/guide/kills-babesia-a-brief-guide

Treatlyme.net said...
Tier Three
I call these the "if all else fails" approaches. I use these approaches for various reasons. Generally, each is effective about 75 to 85% of the time. The Nitazoxanide is in this group because if it is quite expensive and often insurance will not pay for it. Without insurance it costs around $1400 a month. And Clindamycin/Plaquenil/Quinine work, but they have many side effects that make them hard to take.

Post Edited (Charlie55) : 12/21/2018 11:12:46 PM (GMT-7)

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xpeetzax
Regular Member
Joined : May 2018
Posts : 207
Posted 12/21/2018 10:23 PM (GMT -7)
I think all of them are covered except for bartonella. Bactrim might not be enough as Girlie said.
Acutely sick 12/2017
Doxy for 1.5 months 4/2018, plateaued
Diagnosed with Bartonella/Babesia/Yersinia with MCAS
Treating with biaxin/rif since 7/2018.
Added malarone 9/2018.
Added rifabutin 11/2018. => Currently on and herxing like crazy.
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Charlie55
Regular Member
Joined : Nov 2017
Posts : 268
Posted 12/21/2018 11:16 PM (GMT -7)

xpeetzax said...
I think all of them are covered except for bartonella. Bactrim might not be enough as Girlie said.

Bactrim is said to hit Bartonella, how effective not sure, but heard quite a few LLMDs using it for Bart...

https://www.treatlyme.net/guide/kills-bartonella-a-brief-guide
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 12/22/2018 1:02 AM (GMT -7)

Charlie55 said...

xpeetzax said...
I think all of them are covered except for bartonella. Bactrim might not be enough as Girlie said.


Charlie said:
Bactrim is said to hit Bartonella, how effective not sure, but heard quite a few LLMDs using it for Bart...

https://www.treatlyme.net/guide/kills-bartonella-a-brief-guide

That's LLMD MR treatment guide. He is the LLMD that most of people in my neck of the woods go to.
And he does indeed prescribe Rifampin (not sure about Rifabutin) a lot.
He has closed his practice....was being investigated.


Perhaps for the long-standing bartonella infections Rifabutin/Rifampin is needed a high percentage of the time. Dr. J prescribes Bactrim a lot...and then he goes on to prescribe rifabutin in most cases.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/22/2018 1:06:50 AM (GMT-7)

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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 126
Posted 12/22/2018 9:16 AM (GMT -7)
Thanks for all your responses. As to everyone's rifampin statements. I was on bactrim , clindamycin and rifampin for about four months up to my doc exchanging  the rifampin for malarone.(3-4 weeks ago) And like Charlie said, it was because my babesia symptoms were still present and getting worst. My doctor dropped the rigorous bartonella fight to go after the babesia.
Charlie, thank you for the articles. I have read both of them before and they have good info. It's a little discouraging to read about the resistance of the babesia to standard treatments though. Also I have asked my doctor about parasites many times and she keeps recommending herbals. I would like to do that as well but would also like to take some medication to kickstart killing those nasty critters. I dont know why she wont prescribe me anything for parasites.
I have also been wondering about biofilms so I want to look into that more. That could definetly ne holding me back.

Girlie thanks for the info about anaplasmosis, mycoplasma and ehrlichia. That is what I was wondering if those would be covered. I would assume at some point in my 2 years of antibiotics I would have covered them anyways but just wondering what currently is being covered on these meds. Thanks.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 12/22/2018 11:54 AM (GMT -7)
FYI - you may have to treat Bart again - as untreated Babesia may have gotten in the way of bart treatment.
Keep that option open.

Dr J believes that is often the case.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 126
Posted 12/22/2018 9:46 PM (GMT -7)
Girlie thats exactly what I was thinking -that the bart may not be done with me yet. It's so difficult to tell which disease to treat first. It seems like babesia is the leader of the pack right now so hopefully after that is knocked down the others will be easier to beat down.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37403
Posted 12/23/2018 12:54 AM (GMT -7)

Wisco woman said...
Girlie thats exactly what I was thinking -that the bart may not be done with me yet. It's so difficult to tell which disease to treat first. It seems like babesia is the leader of the pack right now so hopefully after that is knocked down the others will be easier to beat down.

I think I’ve got a case of very stubborn Bartonella.
I most likely had it since childhood - had many cats - bites, scratches, flea bites...etc.

We just gotta keep at it - beat it down... and not give up!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1676
Posted 12/23/2018 6:39 AM (GMT -7)
Wisco woman, if you suspect bart is still in the mix, down the line it might be worth trying a rifabutin combo. I also found PZA helpful. Are you responding to the current (more babesia) focused protocol? If so, I'd stay on it for a little while until you plateau. Personally I do like the strategy of knocking babesia down then rotating back to the other infections.

For parasites I found alinia, ivermectin, albendazole (been on all of them) effective. Actually, I suspect I may have been hitting babesia with them. I've done plenty of herbal antiparasitics as well.

The babesia study in regards to therapeutic effectiveness is slightly daunting, but lots of people attain remission. Sometimes it takes various combos to beat the babesia back, then we do what we can with a healthy lifestyle and maybe intermittent antimicrobials to keep things in check. The good thing is that they are doing these kind of studies, which seems to corroborate much patient experience with the potential tenacity and persistence of this infection. And hopefully that will open peoples' eyes that their is a problem, and then hopefully that leads to research looking to discover better therapeutic options and combos.
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Kris Rox 33
Regular Member
Joined : Nov 2018
Posts : 53
Posted 12/23/2018 7:33 AM (GMT -7)
FWIW I think the babesia study was specifically looking at B. Ducani. It seems to be more stubborn than B. Microti.
Bite in mid-Aug 2018, no EM
Neuro symptoms/headache in late Aug 2018.
Finally saw LLMD early Nov 2018
Positive WB 11/26/18 (band 41)
CDC positive babesia 11/26/18
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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 126
Posted 12/23/2018 9:15 AM (GMT -7)
Sebreg- yes i am responding greatly. I actually herxed the first two days of starting malarone. (I have never herxed that quickly before) Then I felt decent for two weeks and now I've been herxing for the past week again. My air hunger and heart palps are crazy strong right now so I'm guessing babes is a large problem for me.

Also good poi y avout the article shedding light on our conditions. At least someone cares out there and is looking into it further. Maybe someday when we tell people we have lyme and coinfections they will actually understand the severity of our situation.
Severe symptoms started in May of 2016.
Diagnosed with lyme January of 2017.
Diagnosed with Bartonella in May of 2017.
Diagnosed and treated for Babesia in February of 2018.
Still fighting the good fight as of present.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1676
Posted 12/23/2018 9:56 AM (GMT -7)
I'd take it as a good sign that you are responding to the babesia meds. Shows you are on the right track. The herxes can be utterly brutal, I find the air hunger to be particularly difficult especially when it gets to be overwhelming and nonstop. When it gets too intense I have to take mini-breaks from treatment and pull things back a bit.
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