Bartonella or Babesia? - Update from LLMD

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NicHostetler
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Date Joined Mar 2017
Total Posts : 647
   Posted 2/11/2018 5:18 AM (GMT -6)   
Hey everyone, I am planning a call with my LLMD when I get back from Italy at the end of next week (Friday) and I am trying to figure out which path I should take next, and I need your help.

I hit babesia with mepron and zithromax for two months and then my LLMD wanted me to stop since I had lots of head pressure and was going to be traveling. I have now been off babesia treatment for a full month and it's been up and down. Some days I dont feel too bad and other days I feel terrible.

I have NEVER hit bartonella with anything throughout my year of treating Lyme so part of me wants to try to knock that out of the way and see what happens. Does anyone know how long bartonella treatment usually is? I assume it isn't as long as babesia treatment?

I feel that a lot of my remaining symptoms could be bartonella, but so many things overlap, its hard to tell.. here are my main remaining symptoms:

Dizzyness
Brain fog/Blurred vision
Fatigue
Heart palpitations (high blood pressure/pounding heart)
Foot pain when getting out of bed in the morning that only lasts about 1 minute
Anxiety
Stomach issues - IBS, loose stools, stomach aches

So I just need your help.. Should I start back up babesia treatment since I did two months straight already? Or should I try to hit bart to make babesia treatment more manageable if bart is the cause of some/all of my remaining symptoms?

I guess I am leaning towards bart because I think the treatment time is much less, something more like 2-3 months of rifampin w/ another drug, whereas babesia is more like 8 months. I could be wrong about bart treatment though.. but if it is quick then I feel I should knock it out then focus on babesia..

Let me know what you all think!

Post Edited (NicHostetler) : 2/12/2018 1:03:08 PM (GMT-7)


goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 2/11/2018 5:37 AM (GMT -6)   
Hi I believe that 2 months is not long enough to treat Babesia. It has to be treated for at the least 4 months and sometimes for much much longer.

Yes some of your symptoms sound like bart, and I would think the llmd could continue to treat the Babesia and add in another ABX to help cover the Bart.

When I was on ABX they gave me Malarone, Azith and Bactrim to treat the Bart and Babesia. But I have heard the Rifampin is much better for bart but I am unsure if it can be combined with the other two your are taking.


These two infections can be difficult and take some time to eradicate.

Others should be along soon and give their input too.

Glad your almost home from your work in Italy and take care, Jo

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 2/11/2018 7:06 AM (GMT -6)   
goshawk said...
Hi I believe that 2 months is not long enough to treat Babesia. It has to be treated for at the least 4 months and sometimes for much much longer.

Yes some of your symptoms sound like bart, and I would think the llmd could continue to treat the Babesia and add in another ABX to help cover the Bart.

When I was on ABX they gave me Malarone, Azith and Bactrim to treat the Bart and Babesia. But I have heard the Rifampin is much better for bart but I am unsure if it can be combined with the other two your are taking.


These two infections can be difficult and take some time to eradicate.

Others should be along soon and give their input too.

Glad your almost home from your work in Italy and take care, Jo


Yes, only few more days. It hasn’t been too bad but today not feeling well and ready to head back home.

Just to clarify a couple things -

I tried bactrim in the past for other stuff when I was younger and got really nauseous every time I started it, so that’s why I didn’t take that with the mepron and Zithromax.

I also understand that two months isn’t nearly enough time, but since I’ve been off treatment for a month I feel like I’d have to start over from square one on babesia treatment anyway. So, it doesn’t matter if I waited a couple months. Correct me if I’m wrong though, becuase if one month off isn’t long enough to be back at square one then I’d definitely like to just start babesia treatment from where I left off.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 2/11/2018 9:08 AM (GMT -6)   
Nic,

I'm not doing abx, so I have no knowledge of how to respond to that. When I first saw my Lyme doctor, I mentioned that bartonella was the hardest to get rid of. She said no, babesia was. I'm not sure aI believe that though. For me, bartonella is the one that gives me the most grief. Buhner did not seem entirely satisfied with his herbal protocol for bartonella, and I believe I've heard it takes a combination of 3 abx to knock out bartonella. Those are the reasons I still feel bartonella is the hardest to get rid of.

I believe others on here have said some of the big LLMDs say that babesia can prevent clearance of the other infections. If that's true, then it would make sense to finish out your babesia abx stint before moving on to abx for bartonella.

I know you're taking some herbs. You said you've done nothing to treat bartonella, but if you are taking Japanese knotweed, sida acuta, or houttynia, you ARE treating bartonella herbally. All those herbs can bring out bart symptoms.

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 2/11/2018 3:29 PM (GMT -6)   
WalkingbyFaith said...
Nic,

I'm not doing abx, so I have no knowledge of how to respond to that. When I first saw my Lyme doctor, I mentioned that bartonella was the hardest to get rid of. She said no, babesia was. I'm not sure aI believe that though. For me, bartonella is the one that gives me the most grief. Buhner did not seem entirely satisfied with his herbal protocol for bartonella, and I believe I've heard it takes a combination of 3 abx to knock out bartonella. Those are the reasons I still feel bartonella is the hardest to get rid of.

I believe others on here have said some of the big LLMDs say that babesia can prevent clearance of the other infections. If that's true, then it would make sense to finish out your babesia abx stint before moving on to abx for bartonella.

I know you're taking some herbs. You said you've done nothing to treat bartonella, but if you are taking Japanese knotweed, sida acuta, or houttynia, you ARE treating bartonella herbally. All those herbs can bring out bart symptoms.


I should have been more clear I guess, sorry - I have done nothing to hit bart as far as prescriptions go.. I have taken CSA, JK and have houttynia but haven't really added it in yet. It gave me some terrible herxing if I remember correctly.

I know doctor J says that babesia needs to be hit first, but if all my symptoms are bartonella, then I might not even be needing babesia treatment and I may only be hurting myself by doing it.. Although I do have night sweats from time to time, especially when I added in mepron a few months ago.. so that could be key for babesia.. so hard to tell what is what..

The reason I am reaching out to all of you is because my LLMD just isn't up to speed on coinfections in my opinon. And, after my negative DNA connexions results, she's been even worse with me.. I may end up going to DC like Girlie did.

Post Edited (NicHostetler) : 2/11/2018 1:33:01 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 3:39 PM (GMT -6)   
NicHostetler said...
goshawk said...
Hi I believe that 2 months is not long enough to treat Babesia. It has to be treated for at the least 4 months and sometimes for much much longer.

Yes some of your symptoms sound like bart, and I would think the llmd could continue to treat the Babesia and add in another ABX to help cover the Bart.

When I was on ABX they gave me Malarone, Azith and Bactrim to treat the Bart and Babesia. But I have heard the Rifampin is much better for bart but I am unsure if it can be combined with the other two your are taking.


These two infections can be difficult and take some time to eradicate.

Others should be along soon and give their input too.

Glad your almost home from your work in Italy and take care, Jo


Yes, only few more days. It hasn’t been too bad but today not feeling well and ready to head back home.

Just to clarify a couple things -

I tried bactrim in the past for other stuff when I was younger and got really nauseous every time I started it, so that’s why I didn’t take that with the mepron and Zithromax.

I also understand that two months isn’t nearly enough time, but since I’ve been off treatment for a month I feel like I’d have to start over from square one on babesia treatment anyway. So, it doesn’t matter if I waited a couple months. Correct me if I’m wrong though, becuase if one month off isn’t long enough to be back at square one then I’d definitely like to just start babesia treatment from where I left off.


With only a month off, you won't be back to square on with babesia. You could go right back on babesia treatment.
And...Dr. J. feels that Babesia is often preventing people from healing...that you need to knock it down first.

Dizzyness
Brain fog/Blurred vision
Fatigue
Heart palpitations (high blood pressure/pounding heart)
Foot pain when getting out of bed in the morning that only lasts about 1 minute
Anxiety
Stomach issues - IBS, loose stools, stomach aches

Those in particular could be from Babesia. When I treated Babesia for several months last year....I had head symptoms flare badly.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 3:43 PM (GMT -6)   
NicHostetler said...

I guess I am leaning towards bart because I think the treatment time is much less, something more like 2-3 months of rifampin w/ another drug, whereas babesia is more like 8 months. I could be wrong about bart treatment though.. but if it is quick then I feel I should knock it out then focus on babesia..

Let me know what you all think!


Bartonella is often much longer than 2-3 months.
And..if it turns out Babesia is holding you back...then you'd be better off continuing to treat Babesia before doing bart.

Many different opinions (by LLMD's) on how to treat these infections...unfortunately it causes worry/concern for the patients.

my opinion is to treat the babesia first.
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

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 174
   Posted 2/11/2018 4:28 PM (GMT -6)   
NicHostetler did your heart problems exist before starting azithromycin treatment?
I'm asking because while azithromycin and other macrolides may be very efficient and powerful antibiotics, they do have a tendency to mess with the heart, hence the FDA warning.

I'm also about to start treating my persistent bartonella infection. I'll probably do minocycline, rifampin and eventually bactrim if I can handle it. Can these abx be pulsed? What pulsing pattern would you recommend? Thanks.

Post Edited (insomniaaa) : 2/11/2018 2:35:19 PM (GMT-7)


NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 2/11/2018 4:41 PM (GMT -6)   
Girlie - Thanks so much for your feedback! All really great points! So you think that I could still count those two months? Like treat for a minimum of 2-3 more months and that would count as 4-5 total? Or did I take a step back and I really should do at least 3-4 months? Maybe that is a dumb question...

insomniaaa - I had TERRIBLE heart palpitations before I started treating and after I started treating but it actually completely went away after about 4 months of treatment and now its creeping back. It isn't nearly as bad as it was though. It sent me to the ER twice and doctors scratching their heads. I did an echocardiogram and a stress test that both were "fine". They told me I had tachycardia and sent me on my way.



Oh - another symptom I forgot is twitching! This just started coming back after stopping everything for travel. Now my left eye is twitching again. I haven't had this since before starting treatment. It was the first thing to go, seems like the first to come back too.
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 5:30 PM (GMT -6)   
insomniaaa said...
NicHostetler did your heart problems exist before starting azithromycin treatment?
I'm asking because while azithromycin and other macrolides may be very efficient and powerful antibiotics, they do have a tendency to mess with the heart, hence the FDA warning.

I'm also about to start treating my persistent bartonella infection. I'll probably do minocycline, rifampin and eventually bactrim if I can handle it. Can these abx be pulsed? What pulsing pattern would you recommend? Thanks.


I haven't seen azithromycin coming with the highest warning - ie. Black box warning....(which is what the fluoroquinolones have)
Or am I incorrect and that has changed?

- Not downplaying the Long QT syndrome risks...just wanted to ask if you've seen that it has the BB warning.


The problem is that the Long QT sometimes doesn't present with symptoms before there's an 'event'.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 5:44 PM (GMT -6)   
insomniaaa said...
NicHostetler did your heart problems exist before starting azithromycin treatment?
I'm asking because while azithromycin and other macrolides may be very efficient and powerful antibiotics, they do have a tendency to mess with the heart, hence the FDA warning.

I'm also about to start treating my persistent bartonella infection. I'll probably do minocycline, rifampin and eventually bactrim if I can handle it. Can these abx be pulsed? What pulsing pattern would you recommend? Thanks.


They can be pulsed.
I think taking both Rifampin and bactrim together with mino should be okay..
I did plug them into the Drug Interaction checker and it did say that Riffy and bactrim together could be hard on the liver.
But, I've seen a few LLMD's prescribe them together. Pulsing would help - for the liver.

There's also Rifampin, mino and ceftin (or omnicef) that you could do.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 5:47 PM (GMT -6)   
NicHostetler said...
Girlie - Thanks so much for your feedback! All really great points! So you think that I could still count those two months? Like treat for a minimum of 2-3 more months and that would count as 4-5 total? Or did I take a step back and I really should do at least 3-4 months? Maybe that is a dumb question...

.


Honestly, I don't know how long you'll need to treat. I haven't figured that out for myself...lol.

I don't think you've 'lost' everything from the previous treatment...but sometimes Babesia can take many, many months. (more than 4-5 months)
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 2/11/2018 5:48 PM (GMT -6)   
Re: twitching. Mine has been gone for a long time...BUT every now and then it comes back for a visit.
It doesn't last long and it's gone again...not sure why that happens.
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

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 2/11/2018 6:18 PM (GMT -6)   
Same here with the twitching, was gone for months but then came back. Gone some days and then just one or two twitches happen.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 2/12/2018 9:36 AM (GMT -6)   
If you treated for two months you may have reduced the infection load. Taking a month off shouldn't mean you lost any gains, but to be safe treat for another 120 day to cover the life cycle of your red blood cells.

My 2 cents would be to continue babs for another four months, then switch to bart treatment.

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 2/12/2018 3:02 PM (GMT -6)   
UPDATE:

So my LLMD just called me and told me we need to switch to Bartonella treatment. I asked if maybe we could continue babesia treatment and she said that since I wasn't feeling better after 2 months of treatment then she thinks it was time to switch to something else.

I mentioned that I think it could've been a herx for babesia die off and she said its hard to tell but she agreed to do whatever I wanted to do. I told her I have read that people feel really crappy when hitting babesia until after a few months on the meds.

I suggested that maybe we add in Bactium with Mepron and Zithromax. She said she is worried about my stomach doing all three but said we could. She then said that if I feel like it isn't working and I want to switch to bartonella treatment then I can whenever I am ready.

Think it was a good move on my part? Or maybe I should've stuck with what she suggested?

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 2/12/2018 3:21 PM (GMT -6)   
Best to follow your instincts. We all second guess ourselves, but there is no one answer to Lyme and Co treatment .

When I first started to treat Babs my weeks 4 through week 9 were the worse. Then I saw gradual improvement.

During my second bout with Babs at one time I took the following:

10/29/12 to 1/20/13: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2, Bactrim DS, Tindamax.

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 2/13/2018 3:29 AM (GMT -6)   
I also asked my doctor to send in a lab order for Babesia and bartonella antibody and PCR test for both. I am doing this through LabCorp because my insurance covers it 90%.

I know labs for these infections are extremely inaccurate but I figured why not? Since insurance basically covers it I might as well give it a shot and hope for a hit!

I actually have heard quite a few people get positive bartonella tests through labcorp, so it may not be all that bad..
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 174
   Posted 2/13/2018 2:55 PM (GMT -6)   
Girlie said...

I haven't seen azithromycin coming with the highest warning - ie. Black box warning....(which is what the fluoroquinolones have)
Or am I incorrect and that has changed?

- Not downplaying the Long QT syndrome risks...just wanted to ask if you've seen that it has the BB warning.


The problem is that the Long QT sometimes doesn't present with symptoms before there's an 'event'.


Apparently the FDA didn't issue a 'black box warning' for Azithromycin per se but they did issue a so called 'communication' on it saying that it may lead to potentially fatal heart rhythms.

It's a very powerful drug and it can definitely cause massive herxheimer reactions. So it looks like it works.
It would be the perfect drug if only it didn't mess with the heart so much for some people.
Some people on the other hand seem to tolerate it quite well. I take my hats off to these people. They've got a strong heart for sure.
I've got huge respect for Azithromycin.

Post Edited (insomniaaa) : 2/14/2018 4:11:20 AM (GMT-7)


cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 723
   Posted 2/13/2018 6:13 PM (GMT -6)   
Two months isn't long enough. My babesia didn't show up until 9 months after treatment started then it didn't go away until I treated it for 9 months with Desbios Borrelia/babesia homoepathic in conjuction with Buhner herbs. Cryptopsis is was what got it to go away for good (I hope, fingers crossed, it's been 5 months).

I know other people have been on Bartonella drugs for a long time, but I never did and I feel like I kicked it also. I did some major biofilm busting in October and it came back so I did a month of Rifampin and the Desbios Bartonella remedy and the Buhner herbs religiously and now I'm okay again...

I guess everyone is different in how they react to treatment (but y'all know that!!)

I also requested the Labcorp babesia which came back negative and so that didn't help my "diagnosis" for those family members who don't believe in the whole lyme thing...
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals, multiple co-infections
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.
Oct 2017 Dx Bartonella - @95%
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