Please help me understand

[lyme_mom]

Okay, this thread is scaring me. Lyme Mom, I'd value your input on something.

 

I know there's a lot of symptom overlap between Lyme and PANDAS. The DAN doc who originally diagnosed our son happened to be a certified Lyme specialist and suspected Lyme. He did a Lyme test (sent it to a lab somewhere, but I don't recall the location or if it was one of the ones you mentioned) and it came back indeterminate. I think it was 115 and the doc said anything below 100 is definitely Lyme, but numbers above 100 don't rule it out. Then our son's ASO titer came back elevated and he diagnosed acute rheumatic fever with Sydenham's chorea, which later changed to PANDAS.

 

Our son had the joint pain you mentioned that moved from joint to joint. That "migratory polyarthritis" happens to be a classic symptom of ARF, so we always attributed it to that. And our son has finally started to improve on the Saving Sammy dose of augmentin XR, but it sounds like that is one of the abx used for Lyme (but not the co-infections)?

 

So at some point, someone told us we could be sure our son had PANDAS rather than Lyme because he had overnight symptom explosions (OCD, tics, lability, etc.), and that Lyme's neuropsych symptoms come on more gradually. (Maybe because Lyme bacteria move very slowly in the body, as you mention below?) Is this correct? Would rapid onset be (in general) a differentiator between PANDAS and Lyme disease?

 

As I was reading your post, I was second-guessing our approach, wondering if that's why our son needed such a high dose of augmentin XR for such a long duration (4 months so far) to make steady progress? The Lyme specialist who originally diagnosed our son passed away, so we don't have his expertise available locally anymore. He seemed sure that it was PANDAS rather than Lyme... but I'm very paranoid. After 3 years of this, I don't want to see our son lose the progress he's making because we didn't attack all the underlying infections!

 

I'm hoping you'll tell me to chill, and that I'm being paranoid for no good reason. Please tell me that?!?

 

 

Lyme mom - do you know if kids with lyme have exacerbations in response to illness. For example, can a child go for over half a year and be symptom free and then have a flare of symptoms following an illness such as an upset tummy or the flu? or does lyme cycle more quickly than that and flare without obvious triggers?

 

thanks

Yes it can. It varies from person to person. Lyme moves in the body very slowly-everywhere from every few weeks to years later. I met a child who is so sick and she is 11. She wasn't properly treated when she was 4 and over the years she developed all sorts of medical issues. The doctors told her mother it couldn't be lyme. They told her she was depressed, ocd, add, etc. Now she knows she has lyme and she is SO sick. It will take years to get her well. You have to kill it while it is multiplying/moving apparently, thus the long term antibiotics. They say that illness or stress can cause it to come out if it is not properly treated. Puberty, menopause can be times when it rears its ugly head they say.

Worried Dad,

 

I really don't want to scare anyone but make you aware of how hard it is to know if your child has lyme/coinfections. Did you have to pay out of pocket about 200 dollars for the test? It really sounds like he might be referring to the cd57 test by labcorp, which is covered by insurance. It is the only test I know of for which a low score is indicative of an active lyme infection. It would be good if you could find the test. A depressed cd57 count is an indication of an active lyme infection and it is used quite often to determine if someone is done with their lyme treatment. However, Dr. Jones, the pediatric lyme specialist, told me it doesn't work with kids and he does not use it. Our first lyme doc used it for my kids but even he told me it can be off by up to 50 points either way, for what that is worth. Neither lyme expert we use now uses cd57s for my kids. My son had a really high cd57 result (400) but he is still sick with lyme so I guess it doesn't mean anything. There is no set timeframe for how slowly or quickly lyme can manifest itself. It depends on so many factors. The patients health, where they were bitten (on the head can go to brain faster), what the spirochetal load is in the body, what strain of lyme it is (there are 200 known strains) and whether any other infections are present all factor in. Vitamin D levels are often low too and getting them up is important.

My son was probably bitten behind the ear and that is why he developed Bells Palsy so fast. It went right to the facial nerve and he already had a low level of lyme in his body for at least six months we think. He had a small mark behind his ear and that was where he swelled up five days before the Bells Palsy. I brought him to the pediatrician for the swelling and AGAIN they blew it off. They didn't look for a bite or ask if he had been camping. It was also in the month of June which is the peak month for lyme diagnosis. I later learned that boys ages 8 to 15 are statistically more likely to get lyme (I guess because they spend so much time outdoors).

I have read that lyme will attack the weakest link in the body sometimes. If you have an injury to your knee or your shoulder you may get joint pain there. If someone has a susceptibility to depression they can become depressed with lyme. There is so much they do not yet understand about lyme.

What is ARF?

If I had a child with what I thought was PANDAS I would do every test recommended by the lyme doctors and have my child evaluated by a lyme literate doctor and member of ilads. If they tell you there is no sign of lyme then you have done all you can do vis a vis lyme. However, I think a lyme specialist would do a trial treatment for lyme with a child with numerous lyme symptoms to see if you get a herx reaction, even if test results are negative. The strep drugs may not be the right ones-You need to have an ilads doctor give your child the right combo of antibiotics that will kill it for good. You want to get rid of the micro-organism, not just cause it to hide out in your tissues until you go off the antibiotics. Thats what lyme does when you go on antibiotics. It changes into a cyst and hides out in the tissues where certain antibiotics can't reach it, only to reemerge after cessation of the antibiotics. Azithro and ceftin kill lyme in the tissues and work synergistically with amoxicillin or doxy that kill lyme in the blood.

These are the tests that my doctors ran on my kids:

Igenex Western blots (igg and igm) and Specialty Labs Bartonella Henselae Igg and igm abs. Also dr jones tested for other coinfections with babesia fish (rna) and babesia duncani antibody panel from igenex. He also tested for mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, E chaffeenis-hme (monocytic) igg and igm and mono and epstein barr and strep tests from labcorp. It could be the key to getting him well so don't be stressed.