DAN wants to test my son for LYME

[Pudgeo]

Hello all....I am happy to report that we have seen improvement in my son that last 3 weeks..woohoo

We have been doing HBOT for a month and bought a used unit, I was scared to stop it since we started to see some changes.

My son is now less spacey, is getting his personality back and wants to play again! We still have some lingering OCD/anxiety issues but I am walking on eggshells that we don't regress...we are also doing IV chelation weekly.

 

It's always been a mystery what my son had when he had his fever since Kaiser never checked him for strep! My DAN Dr Mielke had me do am extensive LYME test. It was costly...but it's symptoms can mimic PANDAS & encephalitis...plus we are trying to figure out if my son should be on long term antibiotics..She said if it comes back positive for LYME kids need IV antibiotics. She really stressed that alot of kids are positive for LYME and don't know it.

Does anyone have any experience with this? Thanks for all the support...Sarah

[kim]

Sarah,

 

Funny you posted this just about the same time I was reading article below. Thought you might want to read thru it. I'm so happy for the improvements that you're seeing. I've read good things about HBOT. Can you say what you're chelating with... DMSA, DMPS, EDTA?

 

One line discussion about lyme/antibiotics

 

http://www.neurology.org/cgi/eletters/70/13/986#17012

[peglem]

i have looked into lyme disease a bit. It is my understanding that use of antibiotics can produce false negatives for lymes tests (which are not terribly reliable anyway, unless they're positive). If my daughter does have lyme disease, she's had it for so long that likely the borrelia are no longer in the blood anyway. So, I've put off mentioning to her pediatrician, but will probably bring it up in the future. For now the prophilactic zith seems to be helping her symptoms and I suspect her treatment would not be much different for lyme disease than it is now. BUT, if a doctor brought it up to me and offered testing- I'd sure do it, but would like to be sure I didn't get a false negative, which I think would rule Lymes out for most practitioners.

 

I suspect Lymes is one of those diseases that is considered rare because its dx is seldom considered, not because its really rare...and I don't see how they can possibly determine that the only way it it spread is by one specific kind of tick. How the heck could you possibly rule out all other parasites as carriers?

 

Anyway, Lyme disease can certainly mess up the immune system and the nervous system...and normally people are treated for those symptoms and if the cause of the symptoms is not obvious, deeper investigation is not done.

 

Edited to add: I saw one of those mystery diagnosis (or was it one of those ER shows) on discovery. They initially thought the patient had MS and gave her IV antibiotics (I think- may have been IVIG, its been awhile). She did not respond to treatment so they began testing to figure out what the problem was. She tested negative for Lymes, but positive for syphillus...But, her partner did not have syphillus so they ruled out syphillus. They considered Lymes (apparently it is related to the pathogen for syphillus.), which fit the symptoms, but discarded it because of the negative tests....until the doc realized that the test (which tested for antibodies to borrelia) was likely skewed by the antibiotics. He ran a test for the actual bacteria (much more expensive than the AB test) and found that Lymes was the problem.

[Chemar]

we have a young girl at our church who has been ill for many years

 

dx with seizure disorder, MS etc

 

they finally discovered she (and the rest of family) have Lyme Disease

 

if left untreated it can do serious damage

[Worried_Dad]

The doc who finally diagnosed our son initially suspected Lyme disease, too. (He was a certified Lyme specialist.) The original Lyme blood test was "indeterminate" - slightly above the positive level. When the ASO titer came back off the scale, though, he diagnosed our son with acute rheumatic fever with Sydenham's chorea. Later, PANDAS instead of SC.

 

I remember looking at the list of symptoms associated with Lyme and going "wow, this fits perfectly with what we're seeing." There is a LOT of symptom overlap between SC / PANDAS and Lyme, for sure. But our son's OCD explosion overnight back in August seems to lock the PANDAS diagnosis. Dr. K told us that nothing else he's ever seen comes on that fast and furious with those specific symptoms.

 

Hope you get a definitive answer, Sarah!

[amy s]

My dd was just this week given a diagnosis of lyme, (plus mycoplasma, pandas, bartonella, several viruses) but the test results are questionable by other doctors standards. We were just given a prescription for the steriod burst but now I am scared to death to try it because everything I read says steriod use should NEVER take place with Lyme disease, that it causes the spirochettes to go out of control. The doctor who is expert at Lyme and knowledgable on pandas said absolutely do NOT DO a steriod burst and to wait on IVIg for 3 months.

 

What do I do? I know it is pandas, or at least I think so. The sudden and extreme onset of OCD and the tremors, after a sore throat. In speaking to Dr.K just yesterday he did recommend (and he saw all the labs) to go forward with the 5 day steriod trial. My husband and I want to do it but we are too scared about lyme...and making things worse. My dd is out of control. We are in the process of weaning her psych meds. What are we to do? I don't think school will be possible for much longer. Currently the OCD is vanished but the behaviors are so outrageous and the emotional lability is constant and the violence during meltdowns has escalated to a very difficult level.

[Pudgeo]

Thanks for the helpful comments, I wondered if others had been suspicious of this also..

My Dan said the tests the regular Dr and hospitals do for lyme is not adequate, she also said that if it is lyme you need to go see a specialist for lyme and usually ALOT of anti-biotics are given (she said sometimes 2 or 3 at the same time) and usually iv anti-biotics. She also said alot of Dr are not knowledgable to treat it and may not "believe it" that is is the cause of a childs behavior change.She went to a conference on it and said she thought of my son a few of her other patients and really stressed that I test him.

As for chelating agents the Dr decides based on what is pulled out of my son at the previous visit. We usually do a UTM (urine toxic metal) test after each chelation. He's been pulling mostly lead & arsenic and a little mercury.

So Amy S...I think you need to be looking into anti-biotics??? IVIG also treat this..

[amy s]

My dd was prescribed Zithromax 250mg daily for the next 6 months and weekly penicillin shots for 12 weeks plus she was given a shot at the office this week. We are very worried about the steriod burst making the lyme disease worse.

 

I'll write more later, gotta go now.

[Chemar]

I am *really* concerned whenever I read more of this use of steroid burst to try to differentially dx PANDAS

 

I have seen first hand the serious reaction it can cause for someone with TS

 

I realize DrK is highly respected in the field of PANDAS treatment but it troubles me that he is using steroid burst this way when it could cause serious problems for people who have other conditions