Jump to content
ACN Latitudes Forums

Treating Lyme and Bartonella


Recommended Posts

We began treating our ds (now 15) for Lyme in the fall of 2010. The oral antibiotics kept him from getting worse (and triggered a lot of Herxing). However, he was still in bad shape by Spring of 2011 so we got a PICC line into him and he had 12 weeks of IV Ceftriaxone. He made a miraculous recovery of his cognitive abilities, communication, muscle control, feeling of well being, and quality of life.

 

After the Lyme treatment we tackled the Bartonella. We are using a combination of Rifampin and Azithromycin. We "pulse" the Rifampin 5 days a week (Mon. through Fri.) and switch to Azithromycin on weekends. He also gets Tindamax on weekends to protect the gut from c-difficile. Of course we use many different types of probiotics daily as well as Vit D, Calcium, Vit C, Magnesium, Folic Acid, Vitamin A, Curcumin, and Qucertin Bromelaid. This week we will also add TMG (lots of B vitamins).

 

Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of. These really flared up badly when we first began the Rifampin / Azithromycin. We understood it to be Herxing. Initially, the Herxing was almost constant with a few really awful days followed by a few "less awful" days cycling over and over without end. Eventually though he began to have a few good days every week or two. These brief periods of improvement would be followed by the return of the terrible herxing and neuro-psych symptoms. Gradually, the cycle lessened in intensity and the good stretches lengthened. Now, when he Herxes and has a flare up of neuro-psych symptoms they are significantly milder. It has now been 6 months of treatment with Rifampin / Azithromycin for Bartonella. We are aiming for a full year of treatment.

 

This note is especially written for Wilma Jenks (whose posts really pull at my heart). Treating Bartonella is not for the "faint of heart." It is very difficult, the Herxing is horrible, the patient needs tremendous support, and (worse of all) it takes a really long time to successfully treat it.

 

Bartonella looks like PANDAS. And, to make things even more difficult, if your child has PANDAS (as our does) the Herxing will flare up the PANDAS symptoms. The treatment process is a juggling act between managing the PANDAS and the Bartonella symptoms and Herxing.

 

We tried Bactrim for our ds15 in January 2010 ... thinking it would help for the strep. It had no effect on him except to give him a rash (we did not know about Lyme back them and possibly that was a Herx). We have found the Rifampin / Azithromycin combination to be excellent for Bartonella. It is most often used for Bartonella by many LLMD's. Another combination that is used is Rifampin / Doxycycline (although some clinicians feel that the Doxy interferes with the action of the Rifampin a bit). Other good antibiotics for Bartonella are Cipro and Levaquin. I agree with the other parents who are encouraging you to talk with your LLMD about your child's response to Bactrim. Try doing some reading about treatments for Bartonella (easy to find on the net). Consider discussing a change in antibiotic protocol for the Bartonella. The good news is that many of the Bartonella treatments also address Lyme (which is still highly suspect in your child's case in my humble opinion.) I will keep you in my prayers. God's grace and goodness will sustain you and your child every step of the way - even when things seem bleak He is always there.

Link to post
Share on other sites
  • Replies 32
  • Created
  • Last Reply

Top Posters In This Topic

Thank you for posting this - really uplifted my spirits today. Since being off of antibiotics for elevated liver enzymes (except for 7 days of keflex for possible staph infection) my daughter seems to be slowly trending downwards. I'm so happy for you!

 

Can you explain to me how Tindamax helps protoect from c-diff. I did not know that. thx

Link to post
Share on other sites

Tindamax, like Flagyl, is used to treat antibiotic related diarrhea. They are also both good "cyst busters" and that is what we most often talk about when using either Flagyl or Tindamax to treat Lyme. However, the other important benefit of either Flagyl or Tindamax is to help manage / prevent antibiotic related diarrhea (which is most often caused by c-difficile).

Link to post
Share on other sites

Tindamax, like Flagyl, is used to treat antibiotic related diarrhea. They are also both good "cyst busters" and that is what we most often talk about when using either Flagyl or Tindamax to treat Lyme. However, the other important benefit of either Flagyl or Tindamax is to help manage / prevent antibiotic related diarrhea (which is most often caused by c-difficile).

Yes, thanks, figured it out right after I pushed the post button. Again, so glad to hear of your success - may it continue!

Link to post
Share on other sites

Yes, thank you for writing- we seem to be prepping my daughter at this point

to be ready for the deep bartonella treatment- of course I am nervous, but I feel

this is where her neuro issues lay- and it is the only way out left.

 

My treatment of Bartonella/Lyme is being handled very different than hers-

I hope she will be okay.

Link to post
Share on other sites

Yes, thank you for writing- we seem to be prepping my daughter at this point

to be ready for the deep bartonella treatment- of course I am nervous, but I feel

this is where her neuro issues lay- and it is the only way out left.

 

My treatment of Bartonella/Lyme is being handled very different than hers-

I hope she will be okay.

 

Remember that you can always adjust the treatment medications in terms of dosage or frequency if she has a serious Herxheimer that is too strong for her. Also, we added in a psych med for support as his agitation was almost unbearable. For our ds15 Topamax settled down the excitability in his brain and, while it did not eradicate his symptoms, it brought the symptoms into a more manageable range. We titrated from one pill a day to his current level of three a day. We titrated according to his needs. A few months into Bartonella treatment we also added something for sleep (Lyrica). He remains on these additional medications to this day and we have no plans to wean them off until he is well for a very long time and/or he so clearly does not need them that the signs are obvious.

 

I hope that you and your daughter find relief very soon. Do not give up hope. Bartonella is a beast - but so far we are seeing that it can be tamed - maybe even beaten.

Link to post
Share on other sites

Thanks so much for thinking of me...

Knowing I am in your thoughts has given me a little boost out of this mini depression i am in lately. Seeing this little girl suffer and then look like there is hope is a roller coaster for the emotions, ya know? i am sick over not being able to stop her misery. you have given me hope again.

Link to post
Share on other sites

Thanks for the post. We are dealing with the up and down of Bart as well. Nice to know that it's butt can be kicked. Ds is taking Rifampin and Minocin and the herxes are not pretty. You wonder how someone could be so sick after a year of treatment.

 

Wilma, there are lots of us saying little prayers for you. A year ago, I was writing posts that sounded just like yours. Unfortunately, there is no quick fix for any of us. We just have to hang in there. Hugs to you.

Link to post
Share on other sites

We began treating our ds (now 15) for Lyme in the fall of 2010. The oral antibiotics kept him from getting worse (and triggered a lot of Herxing). However, he was still in bad shape by Spring of 2011 so we got a PICC line into him and he had 12 weeks of IV Ceftriaxone. He made a miraculous recovery of his cognitive abilities, communication, muscle control, feeling of well being, and quality of life.

 

After the Lyme treatment we tackled the Bartonella. We are using a combination of Rifampin and Azithromycin. We "pulse" the Rifampin 5 days a week (Mon. through Fri.) and switch to Azithromycin on weekends. He also gets Tindamax on weekends to protect the gut from c-difficile. Of course we use many different types of probiotics daily as well as Vit D, Calcium, Vit C, Magnesium, Folic Acid, Vitamin A, Curcumin, and Qucertin Bromelaid. This week we will also add TMG (lots of B vitamins).

 

Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of. These really flared up badly when we first began the Rifampin / Azithromycin. We understood it to be Herxing. Initially, the Herxing was almost constant with a few really awful days followed by a few "less awful" days cycling over and over without end. Eventually though he began to have a few good days every week or two. These brief periods of improvement would be followed by the return of the terrible herxing and neuro-psych symptoms. Gradually, the cycle lessened in intensity and the good stretches lengthened. Now, when he Herxes and has a flare up of neuro-psych symptoms they are significantly milder. It has now been 6 months of treatment with Rifampin / Azithromycin for Bartonella. We are aiming for a full year of treatment.

 

This note is especially written for Wilma Jenks (whose posts really pull at my heart). Treating Bartonella is not for the "faint of heart." It is very difficult, the Herxing is horrible, the patient needs tremendous support, and (worse of all) it takes a really long time to successfully treat it.

 

Bartonella looks like PANDAS. And, to make things even more difficult, if your child has PANDAS (as our does) the Herxing will flare up the PANDAS symptoms. The treatment process is a juggling act between managing the PANDAS and the Bartonella symptoms and Herxing.

 

We tried Bactrim for our ds15 in January 2010 ... thinking it would help for the strep. It had no effect on him except to give him a rash (we did not know about Lyme back them and possibly that was a Herx). We have found the Rifampin / Azithromycin combination to be excellent for Bartonella. It is most often used for Bartonella by many LLMD's. Another combination that is used is Rifampin / Doxycycline (although some clinicians feel that the Doxy interferes with the action of the Rifampin a bit). Other good antibiotics for Bartonella are Cipro and Levaquin. I agree with the other parents who are encouraging you to talk with your LLMD about your child's response to Bactrim. Try doing some reading about treatments for Bartonella (easy to find on the net). Consider discussing a change in antibiotic protocol for the Bartonella. The good news is that many of the Bartonella treatments also address Lyme (which is still highly suspect in your child's case in my humble opinion.) I will keep you in my prayers. God's grace and goodness will sustain you and your child every step of the way - even when things seem bleak He is always there.

Thanks so much for posting this. It is very encouraging. My son will be 9 and he is also on Rifampin/Azith. I agree, it has helped with the Bartonella because his anxiety/anger/rages/OCD has decreased significantly. But, he is very hyperactive which has me worried. His eosiniphil count is elevated. His doc initially thought it was the Rifampin, and now we are leaning towards the Azith. I think the next step is to switch the Azith to Doxycycline. I've heard that not to many people can tolerate this because of stomach upset. May I ask what types of behaviors you were dealing with due to Bartonella? Andrea

Link to post
Share on other sites

To Santi and others who have contacted me,

The Bartonella symptoms (for my ds15) include:

1) Agitation and anxiety that makes it difficult for him to "live in his own skin." These psychiatric symptoms come in brief cycles (lasting a day or two and sometimes longer). Often, he could tell when he was starting to feel agitated - he is not crazy and he knows it is not normal. It is certainly not something he wants to be happening. There is a seizure like quality to it as it is often independent of events in his life.

2) OCD that also "cycles" with the agitation and anxiety.

3) Red glove rash - it really looks like a glove and is a vascular kind of rash. You can press on the skin and it will blanch. Often this occurs hours before his agitation starts.

4) Red cheek rash that has the texture of sandpaper. This is another symptom that appears just before the psychiatric symptoms emerge - it is a very reliable warning sign.

5) The soles of his feet are painful.

6) A red rash that looks like red stretch marks on his hips. This rash was our first clue that he had Bartonella. This rash is considered to be 100% diagnostic for Bartonella. This rash can look like spider veins as well. You can tell they are not spider veins because some will grow horizontally or cluster in little "nests" or line up side by side - spider veins (varicose veins) do not do this. Other rashes are deep vascular bruises that do not go away over time (as a real bruise would). This rash does not cycle in and out - it is fairly stable but we hope eventually it will go away.

 

I hope this helps.

 

Bartonella takes 6 months to a year to treat successfully. Herxing during treatment can be difficult to manage.

 

Rifampin is a very good antibiotic for Bartonella. You need to combine Rifampin with another antibiotic to offset the high incidence of drug resistant organisms to Rifampin. Azithromycin, Cipro, and Doxycycline are three good antibiotics to combine with Rifampin. Doxycyline is hard on the stomach so take with food! Take Rifampin at night and preferably on an empty stomach otherwise the food will decrease the absorption of the Rifampin.

 

Do not stop and "restart" Rifampin!!! This will increase the possibility of certain side effects such as thrombocytopenic purpura, kidney problems, and flu like symptoms upon restarting the Rifampin. Also, there is an increased potential for developing organisms resistant to Rifampin when restarting after a long break. (The presumption is that if you need to restart you stopped it too early and the organisms left behind had a chance to develop a resistance to the Rifampin.) This thought process is well established in the treatment of TB with Rifampin. It is very possible that this could happen with Bartonella. Some practitioners like to "pulse" Rifampin and have patients take weekends off or some variation of that. That is o.k. (as far as I understand it) as long as the break is a short one and you remain on the other antibiotic (Azith or Doxy or Cipro) while breaking from the Rifampin. That said, our doc is not having us pulse our Rifampin - just monitoring us closely and we are dong fine.

 

Yes, several family members have Bartonella and are receiving Rifampin and Azithromycin. One may also be treated with IV Levaquin or Cipro if she does not improve.

 

Monitor liver and kidney labs at least monthly.

 

Take LV-GB Complex caps (by Designs for Health) or some supplement that helps detox the liver and support the gallbladder.

 

Maintain a strict daily probiotic replacement regimen: probiotics 4 tx a day. Cycle your probiotics.

 

Fight inflammation with Curcumin and Quercetin Bromelaid 3 tx a day. Also, Vitamin C and Vitamin D.

 

Hope this helps.

 

I do not post on-line, or discuss by phone or e-mail, the names of the doctors we are seeing at their request. However, I encourage everyone to read the Lyme Treatment Guidelines by Dr. Burrascano that he has posted on line. They are made available on the ILADS website. They are his 2008 guidelines. He has sections on Bartonella and other coinfections as well. Our doctors follow a lot of those guidelines:

 

Advanced Topics in Lyme Disease. Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illness. By Joseph J. Burrascano <http://www.ilads.org>

 

Good Luck to everyone and stay the course!

Edited by RNmom
Link to post
Share on other sites

Hi Philamom,

"LV-GB Complex caps by Designs for Health" can be bought on-line. It is a good product that supports liver and gallbladder function. It aids in the clearance of fats and is protective of the gallbladder. Good for folks taking Rifampin or on any medication that is hard on the liver or gallbladder.

Link to post
Share on other sites

Hi Philamom,

"LV-GB Complex caps by Designs for Health" can be bought on-line. It is a good product that supports liver and gallbladder function. It aids in the clearance of fats and is protective of the gallbladder. Good for folks taking Rifampin or on any medication that is hard on the liver or gallbladder.

Thank you.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...