Bartonella neurological problems.

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lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 4:33 PM (GMT -6)   
I was wondering if anyone has any advice on what treatment they use to keep the

extreme bartonella neurological symptoms at bay?

I was diagnosed with Lyme and bartonella clinically (negative blood test results)

and my worst symptoms are neurological symptoms.

These symptoms are headache, neck ache, lower back pain, and a shooting pain

that goes through my spine like my nerve is inflamed.

I am currently taking doxy, rifampin, samento, banderol, cumanda, houttyunia

We
burbur, pinella, magnesium, multi vitamin, turmeric, liposomal vitamin c, milk

thistle, vitamin d, vitamin b12, oreganol p73, and frequent Epsom salt baths.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 5:42 PM (GMT -6)   
so sorry to hear!!

I was clinically diagnosed with lyme and bart also - it looks like you are missing another medicine? I do not recall doxy and rifampin alone being a protocol for bart.

I took doxy and Zithromax for bart and then switched to Bactrim and Zithromax.

I do recall rifampin and doxy as a combo, but I think there is a third drug that needs to be a part of the mix, if I am not mistaken. I am going to check it out and get back to you, if nobody else has any thoughts!!

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 5:44 PM (GMT -6)   
also, are you detoxing?? how long have you been on this treatment? if you are on the right meds, the pain will subside as the bart gets knocked out.
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 5:46 PM (GMT -6)   
My llmd actually had me on rifampin by itself and I added doxycyline that I

Had left over on my own because I heard rifampin can get resistant easily

When not paired with another antibiotic. I do have another prescription for

Clarithromycin available but I was unsure if I should do doxy or

clarithromycin. I have asked my doctor for zithromax but she has yet to

Get back to me. All responses are appreciated.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 6:11 PM (GMT -6)   
Hmmmm only rifampin?? This is an LLMD?? Sounds like you may need to find a better Dr - you should not be put in the situation where you are trying to figure out the treatment yourself, you need to be in the care of a Dr who knows what to do!! This is only my opinion, of course, we all need be careful on here of how we make suggestions! How long have you been on the antibiotics for? Have you made any improvements?
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 6:39 PM (GMT -6)   
I agree. My doctor is definately starting to worry me. They claim to be llmd and they are also homeopathic. The concern I have with her is that she is always in a rush and she sometimes acts unknowledgeable about antibiotics. My main worry is that other llmds have super long waiting lists and are 500-700 dollars each first visit and don't accept insurance.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 10/20/2014 6:51 PM (GMT -6)   
Doxy and rifampin is a protocol for bart according to Dr. M. R.

Dr. M.R. protocol is combining rifampin with mino, zithro, or bactrim.
He says you can substitute doxy, or biaxin but the rifampin will decrease the blood levels of both of them.

But, I don't remember what the dosage of each is.

And, for the lyme...you may need a cyst buster.
Symptoms started Sept, 2013 (maybe sooner?)
Buhner's protocol May 15/14 to July24/14
Igenex positive July 3, 2014; Doxy: July 4-Aug.24/14
Zithro July26-Aug.24/14
Amox 1000mg x3 + Probencid started Aug. 29/14; added biaxin 500X2 Sept. 26/14
Probiotics, Gaba, Psy-stabil, milk thistle, VitC, B12,D, Cal/Mag, extra mag, Ashwaganda, Curcumin

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 6:59 PM (GMT -6)   
Thanks for the info girlie! Lymebarthiker - wherabouts e do u live? May I ask?
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 7:01 PM (GMT -6)   
I live in Charleston, sc. I don't mind you asking. I am thankful for you help and support.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 7:07 PM (GMT -6)   
Ok glad to help! In the meantime why don't you ask your llmd (upposedly) about a-bart. It is a byron white formula that is specifically for bartonella. It is practically an antibiotic on its own. Also if you take it and get zero results it may. Be a hint that you don't have bart, but If you do, you would herx initially and then see improvements. What symptoms do you have that leads the dr to believe you have bart? The nerve pain? Do you have any pain in your feet or ribs? Any GI probs? Bc bart is know to target the brain, stomach, feet and nerves.
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 7:17 PM (GMT -6)   
Tons of neurological symptoms. Foot pain in morning. Rifampin made me herx my brains out also. My worst symptom is spinal pain shoulder neck ane head pain. These symptoms came on all of a sudden while hiking the Appalachian trail thru the tick infested north east.

Its a shame because the trail is so beautiful but ticks are everywhere and so hard to spot.

how is there not a cure for this?

I have seen the movie under our skin but I am still baffled at why the cdc and idsa want us to suffer. All of us lymies need to get together and sue those guys.

I will ask about getting a-bart as ive read alot about it. Does a-bart work for BLO (bartonella like organisms)?
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 7:25 PM (GMT -6)   
I believe A Bart does work for BLO, but I am not entirely sure. Bear in mind that there are plenty of success stories out there in which case people get thru this, and put lyme/bart into permanent remission. And I plan to be one of them!!!

I still have to see that movie - heck if there is a movement against the CDC, I am in!!!

My whole family got lyme - including my kids! My husband never got symptoms, and I caught it in my kids early enough that they are all fine now (thank God). But those tiny darn bugs are not stopping us from hiking!! =)
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 10/20/2014 7:30 PM (GMT -6)   
Chapelle - you must see that movie...omg...it is sooo good. It gives me shivers just thinking about it. (That's not saying much...I shiver all the time these days...lol)

It's an eye-opener...I can't wait to see the sequel to find out how everyone is doing from the first movie.

The quote of the second movie: "The lie is too big to confess".
And that's about it - how do they back-peddle now??? They are compelled to deny....right? Lives have been ruined...people have died...
Symptoms started Sept, 2013 (maybe sooner?)
Buhner's protocol May 15/14 to July24/14
Igenex positive July 3, 2014; Doxy: July 4-Aug.24/14
Zithro July26-Aug.24/14
Amox 1000mg x3 + Probencid started Aug. 29/14; added biaxin 500X2 Sept. 26/14
Probiotics, Gaba, Psy-stabil, milk thistle, VitC, B12,D, Cal/Mag, extra mag, Ashwaganda, Curcumin

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 7:31 PM (GMT -6)   
Chapelle that inspires me. I fully plan to beat this thing and thru hike again. I am a hiking junkie and the physical limitations of this disease are hurting my ability to enjoy anything.

I am so happy your kids have beaten this thing and I hope for a speedy and FULL recovery for you and anyone else battling this illness.

It says you are 99% symptom free so you are so close. How long did it take before you noticed substantial improvement?
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 7:43 PM (GMT -6)   
lymebarthiker - gotta stay positive! success stories are so important to share on here, because too many people that get better just don't bother coming back, but I don't ever plan to leave this forum especially once I am fully recovered! geez, I can't believe I have posted over a thousand comments on here, Girlie - you are way ahead of me!! LOL

thanks so much for your kind words - well, in short, I got bitten in October 2013, started treatment in February 2014 and really started notice a big improvement I would say in July. So it took a good 5 months. But I was still having issues in July - believe me, I am very active, and I was completely a mess. I couldn't even pick up my 3 year old this past winter. It was aweful. I think I preferred pain over the muscle weakness!!!

hang in there, we are all in this and will all get out of this together!

say, how do I see this movie? it isn't available to rent on Netflix??
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 7:50 PM (GMT -6)   
Thanks chapelle I have been treating ever since my first symptom and I believe I did catch it very early. My symptoms hit me like a ton of bricks. I was in the middle of maine with no doctor around. I actually had to hike 26 miles out to a road and 10000 feet of elevation gain and hitch hike into town to get help.

I am thankful you are willing to share your success story and it gives me and others hope.

You can actually watch the movie free on YouTube. Search under our skin.

Also chapelle besides antibitoics did you use any herbs or supplements to help you beat this thing?
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 10/20/2014 7:57 PM (GMT -6)   
I know, I post way too much...I'm a chatterbox...and I'm alone a lot...so it's post here or talk to myself.

You can google Under Our skin. I'll go see if I can get a link for you.

It's over an hour long, maybe close to two hours...you can pause part way through....and go get a kleenex.



topdocumentaryfilms.com/under-our-skin/

hope that link works.
Let us know if you see it...and what you think. I made my husband watch it..and he was glued to the screen.
Symptoms started Sept, 2013 (maybe sooner?)
Buhner's protocol May 15/14 to July24/14
Igenex positive July 3, 2014; Doxy: July 4-Aug.24/14
Zithro July26-Aug.24/14
Amox 1000mg x3 + Probencid started Aug. 29/14; added biaxin 500X2 Sept. 26/14
Probiotics, Gaba, Psy-stabil, milk thistle, VitC, B12,D, Cal/Mag, extra mag, Ashwaganda, Curcumin

wellbeautifulspirit
Veteran Member


Date Joined Sep 2012
Total Posts : 671
   Posted 10/20/2014 7:59 PM (GMT -6)   
i have major neuor challenges, what use to be automatic, isnt, i have to write notes down all the time

or i wont remember

I have several bulletin boards up on my wall

so not normal, but it helps, i keep hoping my brain will eventually heal

it has too...

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 8:02 PM (GMT -6)   
oh, yes, plenty. I was on doxy alone until I reached 400mg/day. then I added Zithromax. then when the summer came, I switched doxy to Bactrim. I took Bactrim until the end of august, and stopped Zithromax last month.

all the while, I was on the following herbs: Teasel root, and Serrazymes. They are both excellent for lyme. I started AL complex and A-Bart when I started coming off antibiotics.

I was on nystatin tabs and diflucan (only on occasion) to control the yeast due to the antibiotics.

I was also on tons of nutritionals to boost my immune system, including magnesium, vitamin c, Vitamin D, Vitamin B12, probiotics, fish oil, coenzyme Q (excellent for the muscles - I took that on my own). And for detoxing I take alkaseltzer gold and charcoal tabs. I think there is more, but I am going blank. LOL

thanks for the info on the movie, I will take the time to watch it soon enough!!
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/20/2014 8:04 PM (GMT -6)   
girlie - awe, its ok that you post a lot!! I didn't mean it that way!
Registered Pharmacist in NY
Tick Bite in October 2013 (didn't realize it at the time)
Started with Flu Symptoms November 2013 then Muscle/Nerve Symptoms
January 2014. Clinical Self Diagnosis (lyme test was negative) in Feb 2014.....started doxy February 8th. Battled lyme and bartonella for over 7 months. Almost finished with antibiotic treatment. 99% symptom free. Looking forward to recovering!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 10/20/2014 8:04 PM (GMT -6)   
wellbeautifulspirit - you're definitely not alone. I worry so much about my brain...it was my best feature...my husband could never win an argument...in the old days...but now...I don't even bother...lol.

I believe we will heal with time...including our brains.

We gotta just keep going, fighting...we'll beat this...and remember, we have each other.
Symptoms started Sept, 2013 (maybe sooner?)
Buhner's protocol May 15/14 to July24/14
Igenex positive July 3, 2014; Doxy: July 4-Aug.24/14
Zithro July26-Aug.24/14
Amox 1000mg x3 + Probencid started Aug. 29/14; added biaxin 500X2 Sept. 26/14
Probiotics, Gaba, Psy-stabil, milk thistle, VitC, B12,D, Cal/Mag, extra mag, Ashwaganda, Curcumin

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/20/2014 9:40 PM (GMT -6)   
I did hear that bactrim does work fairly well for bartonella. One more question.

I am concerned about yeast. I take 100 billion probiotics a day and one florastor. Is this enough to prevent a candidates overgrowth.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

Chapelle
Veteran Member


Date Joined Feb 2014
Total Posts : 2604
   Posted 10/21/2014 4:51 AM (GMT -6)   
that's fine for a probiotic dose, but are you taking any antifungals? is your tongue white?

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/21/2014 6:45 AM (GMT -6)   
My tongue is not fully white but it has a partially white film on it occasionally. I don't have full on thrush I know that and I've been trying to keep yeast under control the entire time. I also eat a paleo diet.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.

lymebarthiker
Regular Member


Date Joined Oct 2014
Total Posts : 95
   Posted 10/21/2014 6:47 AM (GMT -6)   
And no I'm not on any antifungals. My doctor doesn't seem too concerned with this. Like I said I might be switching doctors soon but I have to stay put until I can find another one.
I thru hiked the Appalachian trail and believe I got a tick, flea, or mosquito bite transmission of bartonella in June 2014

Symptoms started July 27, 2014

Treatment started July 29, 2014 doxycyline only

Saw LLMD Sept 07, 2014

Diagnosed with Lyme and bartonella clinically currently treating.
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