Does this sound like Bartonella?

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tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/8/2018 3:54 PM (GMT -6)   
So I had my switch happen last Saturday. My llmd thinks it's Bartonella popping out but I'm not sure if it's related to a small adjustment I had in my upper back (I seem super sensitive to any type of manipulation, such as massage, cupping or adjustments). I've been having the following symptoms that keep coming and going through the day:

Headaches
Neckpain
Shaking
Panick/anxiety
Chills
Pain in spine
Achi was in legs
Super low blood pressure
Blurry vision
Lightheaded
Jitters

I'm having the hardest week it is so intense and I'm so, so scared and it's not getting any better. I've been treating Lyme for a year and a half and babesia for 9 months. I started BLT for Bartonella a month ago but have not been taking the full dose. I don't know what to do. My llmd wants to treat Bartonella with Bactrim, he wanted to do rifampin but I'm so nervous about that one. He doesn't want to start anything new until my nervous system calms down. He wants me to take kloponin to see if we can get the panic and anxiety
under control. I'm lost and scared I've never felt so out of control!

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/8/2018 4:02 PM (GMT -6)   
I don't know what to think, honestly. The stuff you've been describing sounds horrible, but those symptoms you listed here don't scream bartonella to me. You've had multiple things going on - changes in treatment, chiro visit, and possible aggravation of something in your neck/nervous system. Honestly, I think it's probably a synergistic combination of all those things.

I'm glad the doctor is not pushing you to change treatment again until this herx stops.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 3/8/2018 4:06 PM (GMT -6)   
Did you make progress when treating Babesia?


If you decide to treat Bart - Rifampin or Rifabutin are more effective than Bactrim.

I did Rifampin and ramped up slowly. I find Bactrim to be harder on me. And I can't get the risk of Stevens Johnsen syndrome out of my mind. I found a blotchy mark on my upper body and got worried.
For some reason the Bactrim increases my burning nerve pain in my back ...not sure if it's s here tho.
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 : 32672
   Posted 3/8/2018 4:11 PM (GMT -6)   
tonyaraven said...


Headaches
Neckpain
Shaking
Panick/anxiety
Chills
Pain in spine
Achi was in legs
Super low blood pressure
Blurry vision
Lightheaded
Jitters
!


Headaches, neck pain, anxiety are Bart symptoms.

And the shaking, pain in spine could be as well.

Bart is nasty on the nervous system - CNS /PNS
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
Veteran Member


Date Joined Sep 2016
Total Posts : 2123
   Posted 3/8/2018 4:42 PM (GMT -6)   
Just want to say we are thinking of you tonyaraven, and I hope you get to a more stable place soon.

These infections are a pain in the butt and it can be hard to figure out which ones are causing which symptom sometime. So many things can overlap.

Im glad also you llmd is trying to have you stabilize a bit , it can take some time to get to that point.

I understand you are scared, I remember well being in the same place, buy try to focus on moving forward and set your mind to thoughts of "I can get to a stable place, my body just has to detox, rest , take its time and I will make it to a better place".


When you do stabilize just start off slow again and see how it goes.

Take care and I hope you have a restful night, Jo

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 149
   Posted 3/8/2018 5:59 PM (GMT -6)   
Girlie said...
tonyaraven said...


Headaches
Neckpain
Shaking
Panick/anxiety
Chills
Pain in spine
Achi was in legs
Super low blood pressure
Blurry vision
Lightheaded
Jitters
!


Headaches, neck pain, anxiety are Bart symptoms.

And the shaking, pain in spine could be as well.

Bart is nasty on the nervous system - CNS /PNS


What would differentiate Bart vs Babs since these symptoms seem to overlap? How good is testing for it? I ask because I’ve only ever been tested via quest once or twice (negative) and am curious.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/8/2018 6:26 PM (GMT -6)   
I've been tested twice and Bartonella has always been negative but babesia positive, so I have no idea! My llmd still thinks I have Bartonella even though it was negative.


Thanks for all the support! I couldn't do this without the support I get from this forum!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 3/8/2018 6:45 PM (GMT -6)   
Solaris719 said...
Girlie said...
tonyaraven said...


Headaches
Neckpain
Shaking
Panick/anxiety
Chills
Pain in spine
Achi was in legs
Super low blood pressure
Blurry vision
Lightheaded
Jitters
!


Headaches, neck pain, anxiety are Bart symptoms.

And the shaking, pain in spine could be as well.

Bart is nasty on the nervous system - CNS /PNS


What would differentiate Bart vs Babs since these symptoms seem to overlap? How good is testing for it? I ask because I’ve only ever been tested via quest once or twice (negative) and am curious.


There's a lot of overlap. Testing isn't good. False negatives...but if you do get a positive..then you know you have that one.

Some LLMD"s just go ahead and treat the 3 B's. you can focus on just two of them and treat for a few years (like I did) and hope that will be enough...and sometimes it is...or you can treat all 3 - which is what I wish I had done.
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

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 149
   Posted 3/8/2018 6:49 PM (GMT -6)   
Girlie said...
Solaris719 said...
Girlie said...
tonyaraven said...


Headaches
Neckpain
Shaking
Panick/anxiety
Chills
Pain in spine
Achi was in legs
Super low blood pressure
Blurry vision
Lightheaded
Jitters
!


Headaches, neck pain, anxiety are Bart symptoms.

And the shaking, pain in spine could be as well.

Bart is nasty on the nervous system - CNS /PNS


What would differentiate Bart vs Babs since these symptoms seem to overlap? How good is testing for it? I ask because I’ve only ever been tested via quest once or twice (negative) and am curious.


There's a lot of overlap. Testing isn't good. False negatives...but if you do get a positive..then you know you have that one.

Some LLMD"s just go ahead and treat the 3 B's. you can focus on just two of them and treat for a few years (like I did) and hope that will be enough...and sometimes it is...or you can treat all 3 - which is what I wish I had done.


Don’t the typical meds for Lyme (doxy, zith) treat bart? Or are there other drugs of choice? Before babs diagnosis I was Doxy, zith, and tindamax.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 3/8/2018 7:29 PM (GMT -6)   
I've known a couple people who treated Bart without Rifampin or fluoroquinolones - one is a forum member and the other one lives in my city.
Both had lyme symptoms for months (5-7 months I think) not a year or longer. That may be why they were able to treat without the Rifampin/Rifabutin

From what I've seen...Rifampin/Rifabutin or fluoroquinolones are usually needed for longstanding Bart infections.
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) : 3/9/2018 9:02:48 PM (GMT-7)


tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/9/2018 8:40 AM (GMT -6)   
What's creepy for me is im having a lot of the symptomsthat I had in the beginning when things were really bad and scary. It makes me wonder if all the treatment I've been doing for a year and a half has been for nothing! Why do some people heal and others are on this never ending journey? There is always a small part of me that wonders if this is the right diagnosis and if there is maybe something that has been missed! My llmd yesterday did say that the problem we have is when I'm feeling good I'm scared to death of adding new treatment because I don't want to feel so bad again! So perhaps I'm just stuck in this vicious circle of treating for awhile and slowly increasing only to be hit by a massive truck and then starting all over! Do some of you just continue treating even if you are doing so bad? I'm so desperate to feel a bit better so I can regain my strength and be slightly more positive!

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 563
   Posted 3/9/2018 9:05 AM (GMT -6)   
How can we now if a symptom is more related to bartonella or lyme? Lyme is a multisystemic infection and any symptom is possible. LymeMD says that a lot of people diagnosed clinical with bartonella in fact they have lyme, but i don't know if he is truth.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/9/2018 11:09 AM (GMT -6)   
I am on day 6 of these horrible symptoms and they are not lightening up at all , in fact getting worse. Trying to decide if o should go to ER and let them scan my head and neck because the waves of dizziness and blurry vision are really scary. Don't know what to do!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 3/9/2018 11:46 AM (GMT -6)   
OriolCarol said...
How can we now if a symptom is more related to bartonella or lyme? Lyme is a multisystemic infection and any symptom is possible. LymeMD says that a lot of people diagnosed clinical with bartonella in fact they have lyme, but i don't know if he is truth.


Sometimes it is difficult to suss out which infection(s) are causing the symptoms.

If you've treated two of the B's and you're still not getting well...then it's time to look at the third one.
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 : 32672
   Posted 3/9/2018 11:49 AM (GMT -6)   
tonyaraven said...
What's creepy for me is im having a lot of the symptomsthat I had in the beginning when things were really bad and scary. It makes me wonder if all the treatment I've been doing for a year and a half has been for nothing! Why do some people heal and others are on this never ending journey? There is always a small part of me that wonders if this is the right diagnosis and if there is maybe something that has been missed! My llmd yesterday did say that the problem we have is when I'm feeling good I'm scared to death of adding new treatment because I don't want to feel so bad again! So perhaps I'm just stuck in this vicious circle of treating for awhile and slowly increasing only to be hit by a massive truck and then starting all over! Do some of you just continue treating even if you are doing so bad? I'm so desperate to feel a bit better so I can regain my strength and be slightly more positive!


If you stop temporarily (a few days or even a week or two) after treating for several weeks....that won't put you back to square one. The bacteria are slower growing than that.

I am currently on a M/W/F dosing of my antibiotics for two weeks on and one week off.
Next cycle is the same, but I take 2 weeks off.

This is with a well-known, experienced LLMD. Basically taking meds for 7 days (Flagyl is added on a extra day) one of the months. 7 days a month.
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

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/9/2018 8:13 PM (GMT -6)   
Thanks Girlie! I'm at the ER since I started having numbness and I tingling on the right side of my body. I do hope this nightmare ends soon!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 3/9/2018 10:05 PM (GMT -6)   
Aww tonyaraven - sorry to hear you’re still having a rough time,

Hope you feel better soon and can go home.
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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