Anyone's child tested positive for Bartonella?

[EAMom]

hi mama2alex, I don't know if you get the SJ mercury news?...there was this article about a guy with lyme dz in it today. Interesting story.

 

http://www.mercurynews.com/search/ci_14241...mercurynews.com

[faith]

Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?

 

I am talking with my cousin a lot about this sort of thing. Her family had Lyme - one of her sons was very severe, but they all had it. THe symptoms he displayed very much resembled the PANDAS symptoms. They Lyme symptoms are very familiar. Bartonella and Babesia apparently are worse than having Lyme - so yes, I think you should see a lyme specialist and have him treated for lyme. I am looking at this now.... as I am beginning to suspect that Lyme, not strep, are at the root of our problem. The treatments for Lyme are more agressive, so even if Lyme wasn't at the root, I am thinking you could kill two birds wtih one stone. It is VERY hard to find a Lyme expert in this country. Most doctors who treat lyme are black-balled from the insurance companies (who don't want to pay for these expensive treatments) and so they report the docs to the state medical boards who then have to investigate them. It's a pretty ugly scene. If you need a doctor name, I am getting some from my cousin.

 

Also, my cousin suggested that I read the book "Cure Unknown" and watch the movie "Under Our Skin." I just ordered the book on-line (none of my local bookstores had it) and I also just ordered the movie, which you can get at www.underourskin.com Curious - has anyone read this book or seen this movie?

 

For those considering testing their child, FYI the standard tests DO NOT WORK. They may detect Lyme for some, but not reliable. Also you don't want just the result positive or negative - you need the levels/bands or something like that. The best test for Lyme cost $200 - you order it from Ingenectics - you want the IgG and the IgM. They also have Bartonella and Babesia test, but they are more expensive and from what I understand these are best diagnosed with symptoms, becasue even the Igenectics test isn't good enough to detect these reliably.... meaning you could test negative and still have it. Igenectics number is 800-832-3200. I ordered mine and we are tesing my whole family next week. Anyone else currently seeking Lyme treatements?

 

Charlotte mom,

We're not exactly treating for lyme, and I don't even know if I suspect it, but I did get our DAN doc (also an immunologist) to order some immuno work up and being that I mentioned lyme, he did put that on there.

I don't see the word Bartonella, but I see Babesia. It says lyme antibodies, Erlechia? Babesia, Western Blot, and then other things and then the IGG stuff. Is this sufficient? So Bartonella and Babesia are types of lyme, is that it?

 

Faith

[EAMom]

 

Charlotte mom,

We're not exactly treating for lyme, and I don't even know if I suspect it, but I did get our DAN doc (also an immunologist) to order some immuno work up and being that I mentioned lyme, he did put that on there.

I don't see the word Bartonella, but I see Babesia. It says lyme antibodies, Erlechia? Babesia, Western Blot, and then other things and then the IGG stuff. Is this sufficient? So Bartonella and Babesia are types of lyme, is that it?

 

Faith

 

Lyme is borrelia. Babesia, Erlichia (sp?), Bartonella are other tick born diseases that can be co-infections with lyme.

 

There is also a form of bartonella that is carried by fleas (cat scratch fever). http://en.wikipedia.org/wiki/Cat-scratch_disease

[KeithandElizabeth]

I suspect that my son may have recently contacted Bartonella. Our dog was infected with some type of critters in December and our son developed the weirdest rash down his back. It looked exactly like the pictures for Bartonella. I am hoping that his current antibiotic of zithromycin will help with this possible case of Bartonella. I will ask that he be tested during his next MD visit.

 

Yikes.... as if having PANDAS wasn't enough!

 

Elizabeth

[mama2alex]

Thanks! Good article. I wonder who the Lyme specialist in Redwood City is...

 

hi mama2alex, I don't know if you get the SJ mercury news?...there was this article about a guy with lyme dz in it today. Interesting story.

 

http://www.mercurynews.com/search/ci_14241...mercurynews.com

[mama2alex]

Our DAN doc told me Zithromycin doesn't treat Bartonella. He said he'd use either Levaquin or Cipro to specifically target the Bartonella (it would be some other antibiotic for Lyme).

 

I suspect that my son may have recently contacted Bartonella. Our dog was infected with some type of critters in December and our son developed the weirdest rash down his back. It looked exactly like the pictures for Bartonella. I am hoping that his current antibiotic of zithromycin will help with this possible case of Bartonella. I will ask that he be tested during his next MD visit.

 

Yikes.... as if having PANDAS wasn't enough!

 

Elizabeth

[sf_mom]

Do you plan to try any of the other antibiotics more appropriate to Bartonella to see if it helps?

 

Our DAN doc told me Zithromycin doesn't treat Bartonella. He said he'd use either Levaquin or Cipro to specifically target the Bartonella (it would be some other antibiotic for Lyme).

 

I suspect that my son may have recently contacted Bartonella. Our dog was infected with some type of critters in December and our son developed the weirdest rash down his back. It looked exactly like the pictures for Bartonella. I am hoping that his current antibiotic of zithromycin will help with this possible case of Bartonella. I will ask that he be tested during his next MD visit.

 

Yikes.... as if having PANDAS wasn't enough!

 

Elizabeth

[lyme_mom]

Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?

 

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

[lyme_mom]

I'm curious as to why the DAN dr didn't treat for this infection, when he tested positive?

 

Yes, I would give it a try.

 

Which antibiotic is it, and what is the normal length and dose given?

 

Because unfortunately my husband and I, armed with our business degrees, are making all the decisions, because there isn't one doctor who seems to understand all of this. As I'm sure many here have, we've gotten a lot of conflicting advice. My son had positive strep titers and high Cam Kinase, so we wanted to pursue that. The DAN doc said we'd have to go off the Azith and do the other antibiotic for several months. Also, he was saying he didn't think Alex has PANDAS, but actually has Lyme Disease, which didn't seem right. I think P.Mom is right, Bartonella is treated with Doxycycline, although I'd have to check my notes.

 

At this point, given the lack of success with Azith, we may do this next.

 

Bartonella is usually treated with Rifampin and another antibiotic like doxy or azithro but it varies, depending on what symptoms the patient has. Bactrim may also kill Bartonella.

[lyme_mom]

I suspect that my son may have recently contacted Bartonella. Our dog was infected with some type of critters in December and our son developed the weirdest rash down his back. It looked exactly like the pictures for Bartonella. I am hoping that his current antibiotic of zithromycin will help with this possible case of Bartonella. I will ask that he be tested during his next MD visit.

 

Yikes.... as if having PANDAS wasn't enough!

 

Elizabeth

 

In another post I mentioned that Bartonella can cause symptoms that look like PANDAS. The top lyme pediatrician in the country told me this. You need multiple antibiotics to kill Bartonella and/or lyme. THere is no one treatment b/c it depends on the symptoms that the patient has. Our lyme docs used rifampin and azithro initially for lyme and bartonella but now my son is on doryx (slow release doxy) and azithro and a homeopathic remedy called sprio (that kills lyme and coinfections). You need a qualified lyme specialist to go over all his symptoms and I personally would never see an infectious disease doctor for lyme given the legal battle between ISDA and the CN Attorney General over the Infectious Disease Society's financial conflicts of interest vis a vis lyme protocols. (google Attorney General Blumenthal and Lyme Disease). I would go to an ilads trained doctor asap. (ilads.org) b/c these docs meet each year to go over lyme treatments (what works, what doesn't, what the symptoms of each infection look like, etc.) They know the latest thinking on how to attack these bugs. I read something about them not using levaquin anymore for lyme so you really want to seek an opinion from an ilads doc so you don't get the wrong or outdated treatment.

[KeithandElizabeth]

I saw this rash on my son while we had (dog lice/fleas maybe) in our house. He had the distinct rash a month ago and he was already on Augmentin 250/day and doing monthly IVIG. Does the rash definitely mean that he was infected? I am hoping that his current treatment for PANDAS would help to protect him from Bartonella. What test should I ask for next week?

 

Thanks for your help.

 

Elizabeth

[lyme_mom]

I saw this rash on my son while we had (dog lice/fleas maybe) in our house. He had the distinct rash a month ago and he was already on Augmentin 250/day and doing monthly IVIG. Does the rash definitely mean that he was infected? I am hoping that his current treatment for PANDAS would help to protect him from Bartonella. What test should I ask for next week?

 

Thanks for your help.

 

Elizabeth

 

It really depends on what the rash looks like. My son's rash looked like a cat had scratched him (7 red lines running diagonally on his chest). You can find them on the back and hips too. Any rash plus PANDAS symptoms would make me suspicious for lyme or bartonella, especially if it appears while taking azithro. The azithro could be killing Bartonella or it could be killing lyme. It would be better to have azithro AND rifampin if Bartonella is suspected. I believe that some PANDAS patients could actually have an undiagnosed Bartonella infection mistaken for PANDAS. The difference is that Bartonella is an active infection that will get worse without antibiotics, not necessarily an overactive immune system. Do you have a picture of the rash to show your doctor? What did it look like? The Lyme Disease Association has pictures of rashes. They come in all shapes and sizes. Dr. Jones in CN uses Igenex for the Lyme Western blot (both igg and igm-costs 200) and specialty laboratories in CA (800-421-7110.) My bill says it costs 135 but insurance paid for most of it. He and the other lyme mds (ilads) do not rely on the test results but the symptoms. For a full list of symptoms of lyme and coinfections go to ilads.org. You may see your son's symptoms in a different light if you read through that list. It is very hard to treat Bartonella. We r 18 months into my son's treatment and we probably have another six months to go. The treat for two months past the last symptom to be sure it is gone.

[mama2alex]

Lyme Mom,

 

Thanks for all your posts on this topic! Our tests were run at IGeneX in Palo Alto, so I guess that's good. The doctor is first and foremost a DAN doc, but he gave me an ILADS brochure about Lyme, so I know he's aware of them and possibly following their protocols.

 

I have a few questions for you:

 

- Is your son 100% better and you're just doing the last two months of treatment to make sure you got it all?

- Is there always a rash with Bartonella? My son has never had any type of rash.

- Can Bartonella actually be caused by a cat scratch? I was scratched and bitten by a cat before I got pregnant. Could I have given Bartonella to my ds in utero? I have had health problems including mercury poisoning, which were treated by this doctor - he has believed for a while that I may have Lyme, but all tests were negative and my health improved dramatically with chelation, so we didn't go through with Lyme treatment.

- How soon did you see the Lyme/Bartonella treatment working? How long was he worse (Herxheimer reaction)?

 

Thanks again!

 

 

Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?

 

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

[lyme_mom]

Lyme Mom,

 

Thanks for all your posts on this topic! Our tests were run at IGeneX in Palo Alto, so I guess that's good. The doctor is first and foremost a DAN doc, but he gave me an ILADS brochure about Lyme, so I know he's aware of them and possibly following their protocols.

 

I have a few questions for you:

 

- Is your son 100% better and you're just doing the last two months of treatment to make sure you got it all?

- Is there always a rash with Bartonella? My son has never had any type of rash.

- Can Bartonella actually be caused by a cat scratch? I was scratched and bitten by a cat before I got pregnant. Could I have given Bartonella to my ds in utero? I have had health problems including mercury poisoning, which were treated by this doctor - he has believed for a while that I may have Lyme, but all tests were negative and my health improved dramatically with chelation, so we didn't go through with Lyme treatment.

- How soon did you see the Lyme/Bartonella treatment working? How long was he worse (Herxheimer reaction)?

 

Thanks again!

 

mama2alex,

 

It sounds like you have a good DAN doctor if he knew to give you ilads info. Is he the one who thinks your son has lyme? I was reading your posts and those headaches post ivig could have been from Bartonella or a die off of Bartonella after the ivig. Bartonella causes extremely bad headaches. Also, Dr. Jones told me that IVIG can be used to treat lyme. I was asking him about this for my cousin. I don't know when it is called for with Lyme b/c he didn't use it for my kids but they didn't have PANDAS symptoms. There is no harm in treating for lyme/bartonella as long as you take the probiotics. Then you can see if his symptoms worsen temporarily (good sign) and if he does better. You would probably see something happening within weeks as long as you are on the right drugs for his symptoms. Your child will likely need amoxicillin AND Azithro (250 is what the lyme docs order) (can't remember how old your child is?). A lyme doc knows best and its not always the same combo. All three of my kids were on antibiotics for at least 8 months and they didn't have any yeast problems b/c they also took probiotics everyday (the kind you can take with antibiotics). ("Integrative Therapeutics Probiotic Pearls") I would do it again in a second if their lyme symptoms return because I want to get rid of it for good. I don't want lyme to haunt them and ruin their health the rest of their lives.

 

If your doctor thinks you might have lyme I would definitely try a lyme treatment and see how you feel, but you need the right doses of drugs. I'm taking 400 mg of doxy a day (which is high), and 500 mg of azithro a day. I can't tell you how awesome it is to be well and to have my usual energy back.

 

In answer to your questions, there isn't always a rash with Bartonella or Lyme and in fact, you could miss it anyway. If it were on your head or some place you don't see. My son's rash faded within a day so we could have missed it.

 

As for my son, he is not 100 percent better yet. Dr. Jones told me that my other two have "no sign of lyme" and if he says that I can relax. My other son has been doing better recently but still has a number of symptoms. He regressed last Spring after a medication change from doryx to bactrim. I also have this great local holistic MD who is a lyme expert who has my son detoxing mercury/other heavy metals with this pill and we have brought his d levels up to 70 something, much better than where they were. He had silver amalgams and he had them removed during his treatment the wrong way (I didn't know better). Lyme can hide behind mercury and evade the antibiotics so it is important to get rid of it. I'm doing the same thing. I wish my son would get the vitamin ivs that I got during treatment (they helped immensely) but he refuses to do it (hates needles after the picc line). My holistic doc also has him on low dose naltrexone, which is an old drug put to new use as an immune booster. It is really helping all kinds of very sick people (with cancer, ms, lyme etc). One weird thing seems to have made a difference in his treatment recently and it may have something to do with his recent bartonella rash. I turned off the power to his room. It sounds crazy but my holistic doc lent me a instrument that measures emfs (called a body voltage meter). I measured everyone's bed for emfs and my son who is still being treated for lyme had off the chart readings, really high emfs. When I turned off the circuit to his room it went down to a more acceptable level. He has been doing really well ever since. Turns out lyme loves high emfs and multiplies like crazy in the lab when exposed to high emfs. If true this means he has been sleeping in a lyme incubator for 18 months! The worst part was the first few months of his treatment when he was feeling awful and on the picc line. After the first few months he has been able to go to school and play sports. It varies a lot from patient to patient depending on how long they have been sick. It took me 9 months to feel as good as I feel now and I am still on the antibiotics.

I think you can get Bartonella from the scratch of a cat (thats what it says on-line). I know you can give lyme to your baby in utero or through breastmilk so you may also be able to give Bartonella. I know they think Bartonella is harder to get rid of than lyme so it must be a sneaky organism. Dr. Jones is an authority on congenital lyme and has treated many children born with lyme disease.

 

 

Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?

 

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

[MichaelTampa]

lyme mom,

 

Interesting to hear about the EMF's. Fungus loves EMF's too, by the way. I get bad headaches and inability to concentrate and remember when exposed to the EMF's. I have treated for fungus and enormous improvement in a lot of symptoms, but no improvement in sensitivity to the EMF's. My worst problem these days are the wireless devices. Besides the cellphones, the wireless networks are starting to show up everywhere these days. Just recently was in Cedar Key for what turned out to be a one-day trip, literally could not find a hotel without a wireless network. Even the very small rinky dink cottages had them! Dr.K. is believes my PANDAS problem comes from mycoplasma pneumonia, and we are about to try clarithromycin for it. If that doesn't pan out, maybe I'll look at the lyme. It does seem the EMF's bother me more than most PANDAS patients. (Either that, or, they are kids and the parents haven't noticed the correlation, which is going to get harder to notice as the wireless devices spread further.) Fluorescent lights used to be my worst problem, and they are still just as bad, except that wireless usage has grown to be more of a problem.

 

Have you ever noticed how the wireless affects your son?

 

Michael