Treating Lyme and Bartonella

[Santi]

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!

Excellent info here RN mom. I have 2 questions: 1. Re: skin - I always wondered about my son's cheeks. They are red with white spots in it, like there is no pigmentation. When I press on it, it becomes completely white. I believe you called it blanching. I wonder if this is the Bart?? 2. You mentioned cycling probiotics. We do 100 billion per day. My son takes 2X 50 billion a day several hours away from the abx. Is this what you mean? Andrea

[RNmom]

Hi Santi,

The rash on your son's cheeks sounds like it is vascular. Bartonella rashes are often vascular. But, red cheeks as a single symptom can't tell you if he has Bartonella. The only rash that is 100% diagnostic of Bart is the one that looks like red stretch marks. (Sometimes people think it looks like red varicose veins.)

 

What are his other symptoms? Here is a list of Bartonella symptoms:

Low grade fevers

Frequent sore throats

Dry sticky sweating day or night

Rashes that look like red stretch marks usually on the back or hips

Headaches on top of head or in front of head

Blurry vision or red or dry eyes

Ringing in ears

Swollen glands

Chest "tightness"

Stomach pain

Calf pain

Muscle twitching anywhere - especially in calves

Shin bone pain

Pain on soles of feet - especially in the morning

Bilateral join pain - always on right and left at the same time

numbness, tingling, or burning sensation of nerves

Anxiety

Difficulty falling asleep

Abnormal labs such as low white blood cell count, low platelets, high liver enzymes, elevated sed rate

Psychiatric symptoms such as agitation, mood swings, rages,

 

I highlighted in bold the ones that are most often talked about as symptoms of Bartonella.

 

Regarding your probiotic question. 100 billion units a day is really good. I use schedule of 4 tx / day to keep a steady state in the gut and improve my chances of achieving 100 billion units a day. If you are getting there in two doses that is great!

 

I hope this is helpful.

Edited November 13, 2011 by RNmom

[Santi]

Hi Santi,

The rash on your son's cheeks sounds like it is vascular. Bartonella rashes are often vascular. But, red cheeks as a single symptom can't tell you if he has Bartonella. The only rash that is 100% diagnostic of Bart is the one that looks like red stretch marks. (Sometimes people think it looks like red varicose veins.)

 

What are his other symptoms? Here is a list of Bartonella symptoms:

Low grade fevers

Frequent sore throats

Dry sticky sweating day or night

Rashes that look like red stretch marks usually on the back or hips

Headaches on top of head or in front of head

Blurry vision or red or dry eyes

Ringing in ears

Swollen glands

Chest "tightness"

Stomach pain

Calf pain

Muscle twitching anywhere - especially in calves

Shin bone pain

Pain on soles of feet - especially in the morning

Bilateral join pain - always on right and left at the same time

numbness, tingling, or burning sensation of nerves

Anxiety

Difficulty falling asleep

Abnormal labs such as low white blood cell count, low platelets, high liver enzymes, elevated sed rate

Psychiatric symptoms such as agitation, mood swings, rages,

 

I highlighted in bold the ones that are most often talked about as symptoms of Bartonella.

 

Regarding your probiotic question. 100 billion units a day is really good. I use schedule of 4 tx / day to keep a steady state in the gut and improve my chances of achieving 100 billion units a day. If you are getting there in two doses that is great!

 

I hope this is helpful.

 

With the exception of swolen glands and frequent sore throats, his symptoms are mostly psychiatric. These include: rage, anger, agitation, ocd, anxiety, adhd, sensory issues, and sleep issues. His doctor thinks that his problems are more Bartonella than Lyme. We are definetely seeing the improvements being on the Rifampin. His anxiety is down. Now we got to work on bringing his ADHD down. You have been very helpful! Andrea

[RNmom]

Santi,

Wow! Bartonella is notorious for neuro-psychiatric symptoms. I felt that I did not really emphasize that point enough when I posted the Bartonella symptoms list. Your post more than makes up for that omission. I wish you all the best.

[kmom]

RN Mom,

 

Do you find "LV-GB Complex caps by Designs for Health" better than Milk Thistle?

 

Thanks!

[tpotter]

I really appreciate your update right now for many reasons. I keep feeling like we are not truly hitting something for my son, and although we are doing IVIG every 6 weeks, he's great for the first 3 weeks, but then consistently not doing well starting week 3, and then never getting better after that.

 

So, we know for sure there's bartonella, because he clearly has the rash, and it got a lot better (but not gone) after IV cleocin over the summer. He also finally tested positive for erlichiosis, and the symptoms are pretty straight forward, so I'm quite certain it's accurate.

 

But, here's the problem. He can't take Rifampin, because of another medication that he takes (decreases the effectiveness of the other medication, and he HAS to take the other). Also, he now can't take Azith or Flaggyl, because he had an allergic reaction to both while on the IV (we tried adding each one at a time to the cleocin, and he suddenly couldn't breathe with the azith, and got a huge hive on his neck, and then had tremendous difficulty breathing.

 

He was last put on 30 days of bactrim (because of a cellulitis that both my boys keep getting this month) + cipro and pulsing tindamax (1 week on/1 week off). But, it also appears that strep is going around the house, so we tried replacing the cipro and bactrim (latter ended, anyway) with augmentin XR. We just went to the doc yesterday, because we have another infected cyst (I suspect MRSA, and it got swabbed...with great argument from the local pediatrician...believe it or not...I did a 4 hour trip to the DAN doc to get the swab done!) So, DS is now on cefprozil twice a day, and the tindamax every other week.

 

My other DS keeps getting the same kind of skin infection and sinuses were horrendous, so he got a shot of Rocephin, because he keeps getting c-diff, and can't take any more oral stuff.

 

So, I'm just so frustrated that we can't seem to get to the bottom of the whole thing, and I think a huge part are the co-infections (particularly bart) that we can't knock out, and we can't take the kind of meds. Any sugggestions? We've been treating this for a year now.

[SSS]

tpotter, I'm so sorry you are going through all this!

 

I have no idea if this will help or not, but what about the herbal tinctures?

For my own bartonella, I did about 7 weeks of Levaquin, dropped it to start combo of antibiotics for

Lyme.

But, I am taking Byron White A-Bart and Beyond Balance Bar-1.

I am up to 9 drops each 2x a day, and I feel like I am herxing Bart.

 

I put them in a little water in a shot glass and down them.

For dd6, I fill a small syringe 1/2 with water, put back in shot glass, add her drops

(only 3-4, she herxes, too) and back in syringe, directly in her mouth, followed by her favorite drink.

 

It's something, and doing 'something'...

[JuliaFaith]

 

So, I'm just so frustrated that we can't seem to get to the bottom of the whole thing, and I think a huge part are the co-infections (particularly bart) that we can't knock out, and we can't take the kind of meds. Any sugggestions? We've been treating this for a year now.

 

My Ds is seeing an ND. She uses allopathic (abx), natureopathic, & homeopathic approaches. Son has been on abx once, but has also been on Alinia which seemed to have some abx properties along with a lot of other things (i.e., anti-parasitic etc.). He is now using Berberis Formula, which from my reading appears to have abx qualities as well. It seems that the natureopathic meds (herbs) that we have used are treating many things at once, which has worked well too.

 

Have you tested for MARCons? Nasal swab?

 

Not sure what doctor you are seeing but an ND may be an option. The cost for the natureopathic is expensive which is difficult. Did just find out that our FSA savings account thru dh work allows these over-the-counter meds. but you have to have a prescription, so that saves you at least 15% or more. Our insurance only pays about 25% of doctor visits (out of network) which is not great either. It is possible to slow down treatment which would cost less but would take longer for healing.

 

On another note, my son did the DNA testing and Dr. S states that people with his halotype (per test) do not get better with Abx alone - so this was a good thing to learn, after the fact.

 

Have seen you on here for a long time so I am hoping you find some answers and healing soon. Take care.

Edited November 30, 2011 by JuliaFaith

[tpotter]

tpotter, I'm so sorry you are going through all this!

 

I have no idea if this will help or not, but what about the herbal tinctures?

For my own bartonella, I did about 7 weeks of Levaquin, dropped it to start combo of antibiotics for

Lyme.

But, I am taking Byron White A-Bart and Beyond Balance Bar-1.

I am up to 9 drops each 2x a day, and I feel like I am herxing Bart.

 

I put them in a little water in a shot glass and down them.

For dd6, I fill a small syringe 1/2 with water, put back in shot glass, add her drops

(only 3-4, she herxes, too) and back in syringe, directly in her mouth, followed by her favorite drink.

 

It's something, and doing 'something'...

 

 

I'll ask our LLMD. DS18 is doing Cat's Claw, but I never saw any herxing on his part. Although I suspect he was sick maybe his whole life (only found out when he was 15, but can now date it WAY back), the tx we've done, including IVIG seem to be mostly holding him (although we do get flares...just not quite as dramatic.)

[tpotter]

 

So, I'm just so frustrated that we can't seem to get to the bottom of the whole thing, and I think a huge part are the co-infections (particularly bart) that we can't knock out, and we can't take the kind of meds. Any sugggestions? We've been treating this for a year now.

 

My Ds is seeing an ND. She uses allopathic (abx), natureopathic, & homeopathic approaches. Son has been on abx once, but has also been on Alinia which seemed to have some abx properties along with a lot of other things (i.e., anti-parasitic etc.). He is now using Berberis Formula, which from my reading appears to have abx qualities as well. It seems that the natureopathic meds (herbs) that we have used are treating many things at once, which has worked well too.

 

Have you tested for MARCons? Nasal swab?

 

Not sure what doctor you are seeing but an ND may be an option. The cost for the natureopathic is expensive which is difficult. Did just find out that our FSA savings account thru dh work allows these over-the-counter meds. but you have to have a prescription, so that saves you at least 15% or more. Our insurance only pays about 25% of doctor visits (out of network) which is not great either. It is possible to slow down treatment which would cost less but would take longer for healing.

 

On another note, my son did the DNA testing and Dr. S states that people with his halotype (per test) do not get better with Abx alone - so this was a good thing to learn, after the fact.

 

Have seen you on here for a long time so I am hoping you find some answers and healing soon. Take care.

 

Thank you. Yes. We've been here a long time, but particularly because it took 4 years to even get a dx from sudden date of onset, and then even longer to begin organized tx. As most everyone else...we are working our way through it all. Doesn't help when allergies, c-diff and such get in the way. But, I feel lucky that we, at least, have some answers, and that we have found a good group of drs. to treat my boys. I'm am also so appreciative of this forum, because we are the ones supporting each other, and helping each other find our way through the "maze."

[Bill]

 

Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of.

 

 

 

We can relate! Fortunately (ha!) our son tested positive for Bartonella so we had clear cause for treatment.

 

This is a really good thread reinforcing that there seem to be no real shortcuts to any of this.

 

With all this talk of herx and reactions though, I'd like to throw a question out that I've thrown out a couple of times before...what does it mean when there is no real reaction to ABX or supplements? We are seeing progress but aside from some minor gains/minor losses after starting things, nothing of note. And those minor things could just as easily be "noise." We are measuring progress over months. Don't get me wrong, I'm plenty happy to be missing the strong negative reactions but it is puzzling. PANDAS + Lyme + bartonella + maybe babesia (but no proof) so much the same as many here. I've told myself that his methylation pathways must be perfect and everything else is working optimally (well, maybe not his immune system) - but - if that's true, he ain't healing any quicker than anyone else here!

 

bill

[momcap]

 

Bartonella is notorious for neuro - psychiatric symptoms which our son had an abundance of.

 

 

 

We can relate! Fortunately (ha!) our son tested positive for Bartonella so we had clear cause for treatment.

 

This is a really good thread reinforcing that there seem to be no real shortcuts to any of this.

 

With all this talk of herx and reactions though, I'd like to throw a question out that I've thrown out a couple of times before...what does it mean when there is no real reaction to ABX or supplements? We are seeing progress but aside from some minor gains/minor losses after starting things, nothing of note. And those minor things could just as easily be "noise." We are measuring progress over months. Don't get me wrong, I'm plenty happy to be missing the strong negative reactions but it is puzzling. PANDAS + Lyme + bartonella + maybe babesia (but no proof) so much the same as many here. I've told myself that his methylation pathways must be perfect and everything else is working optimally (well, maybe not his immune system) - but - if that's true, he ain't healing any quicker than anyone else here!

 

bill

 

Hi Bill, I don't know what to make of the no herxing either. All 3 of my kids tested positive for lyme. The youngest does not herx at all. I was able to get him up to full doses of 3 antibiotics all within a couple of weeks. No reaction, good or bad. My oldest DS (PANDAS) herxes like crazy. We have to work up really slowly with his meds. When we added his 2nd abx everything went completely haywire. We had to back off, double up detox and try again. Haywire again. We stuck it out and he settled after about 2 weeks. But he really "herxes" hard - return of old symptoms, feels sick, psych stuff, aches and pains, etc with every med and supplement change we try. He's improved dramatically, but had so many symptoms and was barely funtioning when we started treatment. My youngest who doesn't herx only had minor joint pains, no other symptoms that I'm aware of. He no longer has any pains, and his energy/stamina has increased very noticeably. So I guess I'll just be happy that he is getting well without going through all the herxing. It does make me wonder though.

[JuliaFaith]

We were just discussing this with DNA testing recommended by Dr. S. If your test comes back a certain way, it could mean that your body as an inability to identify and excrete mold & lyme toxins. Then, in turn, does this relate to the mythlation issue?

[debbie5846]

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.

[debbie5846]

I sent you a personal message.

I have a few questions about starting I.V.'s