Those that treated for lyme along with PANDAS

[Iowadawn]

We were warned, and it was very true, all h*** broke loose when we started treating the lyme. We started out PANDAS and are still treating lyme. Just added Flagyl back because ds14 is in a safe facilty to do it.

[Hopeny]

Hopeny, I have some ordered. DS's doc recommended it in case he has a herx. She gave me a herx handout of things to do. We gave him the doxy today. How do you give it for rage?

Our integrative MD told us 5 drops Burbur in water, up to every four hours, DD is 9/65 pounds. I also bought some of their parsley for the same thing. I find the Burbur extremely effective. Integrative also suggested two charcoal capsules but its hard for me to imagine DD ever agreeing to take this so I have not used. I also found I was giving too much MTHF, I have cut the dose/frequency way down and this has helped.

I was giving Burbur daily but we don't seem to need anymore, I just use on ocassion.

Another thing you may want to look into is Enhansa (Tumeric) - it helps with inflammation and I believe detox too, maybe yeast as well. We get ours by Rx from Lee Silsby. Good luck with the doxy.

When all else fails I find a (monitored) bath with Ahava dead sea salts is also very calming for DD (lol maybe I need to do that myself).

Edited March 18, 2013 by Hopeny

[mimip]

 

Forgot to add, in the beginning he had a lot of fatigue. He could not go on hikes, could not snow ski more than an hr or two at a time and could no longer keep up in soccer. This was a huge change for him. Also, the bottoms of his feet hurt frequently and I would rub them. After starting abx for PANS, these symptoms disappeared.

 

Was he ever tested for Bartonella? Pain on the soles of the feet is classic Bartonella.

[Hopeny]

That's a good point in regards to the feet, Bart can commonly cause rages and foot sole pain. My DD tested negative but we decided to treat anyway and 4 days after starting Rifampin, stretch marks appeared in the crook of her arm - I took that as pretty compelling proof of Bart which commonly causes stretch marks. You may have been hitting some of the symptoms/bacteria with the PANDAS treatment which is why you saw some alleviation but not all.

[mimip]

When my dd10 (9 at PANDAS onset) came down with PANDAS last year, I first thought it was Lyme (and I *still* don't know if Lyme/co-infections are a factor). She had had an embedded deer tick several years earlier, and 7 months prior to her onset of severe symptoms my husband suddenly became severely ill with what ended up being Lyme and 3-4 other TBI. He has lab confirmation on Lyme, Mycoplasma, Anaplasmosis, and Bartonella, and had very strong symptoms of Babesia (especially horrible, malaria-like drenching sweats) but no lab confirmation on Babs. We were also in a highly endemic area.

 

When my dd's symptoms first started they seemed very similar to my husband's. I had asked her ped for a Lyme test when she first had the embedded tick but was told that unless she got a rash or flu-like symptoms, she was fine (I cringe now even writing that). She had symptoms over the years that I now know are TBI related. I asked 2 different pediatricians for a WB on several occasions after PANDAS symptoms and strep + confirmation, but was denied. They did give her an ELISA, but it is an absolutely useless test.

 

So, the Lyme/TBI and PANDAS symptoms were very similar. Bartonella is an infection to really pay attention to as it causes a lot of swelling (my husband's was *tremendous* in his legs,and his c-reactive protein and sed rate were sky high), and it causes a lot of neurological symptoms.

 

It is very important to investigate co-infections because the treatment is different for each infection. My husband was on 4 antibiotics and an anti-malarial, plus supplements. Also, sometimes IV antibiotics are necessary. BTW, my husband had a very strong reaction to steroids he was given before he was diagnosed with tick-borne illnesses.

 

Basically, it seems like it is difficult to impossible to distinguish between PANS and Lyme/TBI only. You can have PANS symptoms from any number of things as the trigger, and you can have the same or similar symptoms from Lyme/TBI alone, and you can have Lyme/TBI in someone with PANS and have the Lyme/TBI trigger onset or flare while additionally having the infection itself causing symptoms.

 

I'm still trying to sort it all out. I have 6 kids and I'm suspicious that 4 more of them have PANDAS/PANS and/or Lyme/TBI. I believe I have Lyme and Bartonella, as well as having PANDAS/PANS as a child. I'm wondering if congenital Lyme is possibly a factor as well.

[nicklemama]

Well, interestingly, he also had drenching sweats before we started PANS treatment. When I would wake him up in the morning, his head/hair and pj's would be totally wet. Same if he woke during the night, which he was doing nearly every night and getting in our bed. I complain because I'm so tired of all this but really, it was so horrific before his PANS diagnosis. We live a fairly normal life now. At least, its more normal than it was and it so much better but I really just want normal like all my friends.

 

I went to check out a new vitamin shop and bought myself some lemon balm. Started that last night. I'm trying to avoid ssri's.

 

He did test negative for bartonella. We will probably retest down the road.

 

I'm going to be getting myself tested.

 

How long before I might see herxing? His doctor gave me a handout on what to do in case of herx. I hope the burbur comes soon.

Edited March 18, 2013 by nicklemama