Okay, some good news at last. Motrin helping but why?

[trintiybella]

Saw Dr. T. - He is doing tons more testing. My child is very sick and NOTHING puts her to sleep. Hallucintations, distorted thinking etc...around the clock. We are really not sure what it is. We have a Cam Kinase of 166, but no other indicators of PANDAS. We also had a possitive for bartonella, but then months after that we had a negative (she was on bactrim and minocycline for awhile.) Psychiatric symptoms were still there with bartonella treatment. Anyway....Dr. T. put her on 600mg of motrin 3x's p/d and she is starting to sleep. THANKS GOD!!! So it's helping inflammation, but what is inflammation from???? Right now she's on bactrim and minocycline for the bartonella and she is on the azith. for the PANDAS. (Neithere were helping with sleep, but Dr. T. said if they are not making her worse, keep her on them) My question is: what do I treat for?? Bart. or PANDAS? I don't want to keep her on all these antibiotics if I don't have to, ya know???? Hope I am makeing sense. We also had her on bactrim and doryx for awhile and when she came off of it,....her insomnia was ten times worse. That tells me that perhaps we were treating bartonella, but perhaps we were wrong and should have treated PANDAS. Not sure what to do.

[rowingmom]

In our case the LLMD told us that bartonella was causing DD's PANS/PANDAS/Tourette's/autistic reactions. After 2 years of combination bartonella treatment including: biaxin, rifampin, azithromycin, minocycline, tindamax, plaquinel, malarone, A-Bart, and A-L (not all at the same time), her bartonella IgG titers have decreased from 160 to 80 (so still there). Her PANS/PANDAS symptoms have almost totally resolved. She has been off abx for almost 3 months now, but we are still treating with herbals.

 

If you are treating PANDAS you are treating strep infection and it's resulting inflammation. If you are treating PANS you are treating other bacterial/viral infections and their resulting inflammation.

 

Inflammation is the result of the cytokine cascade produced by the bacterial/viral infections.

 

Glad to hear Dr T is still treating her for bartonella.

[lfran]

Did you ever do the mthfr test on her?

[trintiybella]

Yes. did the mthfr test. It said C677T Single mutation (C677T) identified and she needs folate. Is that what your talking about? Also...

 

Rowingmom...you treated the bartonella first? It seems like the abx. that your used for bart. also work on the pandas too, right? Also, my girls test just says "positive" for bartonella. I don't see anything about titers. Dr. T. is not treating her for bartonella. She was already on the minocyline and bactrim before she got to him. He never mentioned the bartonella. He thinks it PANDAS, but I am not sure how he knows, since we only have Cam kinase of 166 to go by, and no other signs pointing to PANDAS. I also mentioned that bartonella shows up possitve sometimes and negatives other times. Does that happen to you?

[Dedee]

Dr. T is an awesome doctor and has helped many kids. However, he is not a lyme doctor. Bartonella tests are not 100%, meaning they frequently show negative even when the person is positive. So if you ever had a positive you should consider your child positive. PANDAS / PANS cause similiar reactions so don't get all caught up in the name. This is an infection triggered issue. Figure out the infection or infections, and aggressively treat them. This is not a time to be squimish. Especially with bartonella. You need to find an LLMD who is used to treating bartonella so you can get the right treatment path. If your child also has strep issues, then that will be covered with the antibiotics used to treat the bartonella. I am currently reading the book by Buhner called "Lyme Co Infections". It was recommended by our LLMD. It is all about Mycoplasma and Bartonella. You should get it. Very interesting.

 

Dedee

[rowingmom]

If I understand correctly, your daughter was being treated by Dr J for bartonella and lyme, right? Did you ever use rifampin? I know you have seen several experts in the field of lyme/coinfections.

 

Our daughter always had flares with strep infections, but Dedee is right, that all cleared up with bartonella treatment and has not resurfaced. We didn't treat specifically for strep (or PANDAS) because the treatment is not offered through the Canadian Healthcare System, and we could not afford out-of-pocket treatment in the US. We treated bartonella-induced PANS by treating the infection with antibiotics. We did not do any immune modulation treatments (ie IVIG or PEX).

 

I am not saying that IVIG or PEX would not help your daughter, as she seems to have a large amount of brain inflammation. But DD's PANDAS (strep)/PANS (other bacteria/virus) symptoms resolved with bartonella treatment alone.

 

@ Dedee - The new Buhner book on mycoplasma/bartonella coinfections is wonderful. The best book he has written yet, IMO. If I am understanding correctly, he states his premise that the cytokine reactions (produced by bacterial infection) which are responsible for symptom etiology, are produced by the bacteria for a specific reason. These bacteria are parasitic. They scavange nutrients from cytokine-damaged tissues/cells/nerves to aid their own growth and reproduction. Buhner feels that probably the most important step in healing is to stop the cytokine cascade (inflammation reaction of the body), depriving the bacteria of nutrients. At that point immune enhancement and herbal antibiotics can be used to clear the remaining infection.

 

What an interesting concept!

 

Some LLMDs suggest withdrawl of certain minerals/nutrients from the diet in an attempt to starve or weaken the bacteria, ie magnesium, fat, etc. Buhner says this will not work, as our own tissues require the same nutrients, and cellular integrity and function will be compromised without them. A nutient dense diet is necessary. So instead of depriving the whole body of nutrients, deprive only the parasitic bacteria of nutrients by decreasing the inflammatory cytokine cascades with herbs that specifically address the different cascade pathways.

 

In the case of bird flu which appears to be more lethal in people with healthy, functioning immune systems, the immune response produced by the bacteria and the subsequent cytokine cascade are responsible for tissue damage. In people with under-functioning immune systems, the response is less drastic and also less lethal.

 

So this leads me to wonder whether lyme/bartonella decrease immune function to gain a foothold, or whether it is simply our body's attempt at decreasing the cytokine cascade (inflammation) and resulting destruction.

 

Sorry, off on a tangent !

Edited July 5, 2013 by rowingmom

[Dedee]

Yes, that is correct about Buhners theory on the cytokine cascade. My LLMD had this discussion with me at our last visit. She wants to work on this with my dd as she has so many neurologic issues. I have ordered one of the herbs he discusses in his book for this and we had already started Nettle which another physician suggested for inflammation and OCD. My daughter seems to be doing better on the nettle and the change in antibiotics. It all makes sense. Just hoping it works. Sorry to high jack your thread.

 

Dedee

[trintiybella]

Rowingmom...regarding: the "bacteria being parasitic"

Could that be why my child started to sleep a little when I added black walnut oil in for parasites?

Edited July 7, 2013 by trintiybella