Could use your knowledge!

[adkmom]

I'm so new to this I'm getting completely confused and exhausted. I would appreciate anyones knowledge! This is what I'm trying to figure out:

 

My ds4 pandas/lyme started omnicef was doing well, then switched to Zithro. 250mg since Lyme diagnosis. It's been 2 weeks and he seems to be backsliding. Since the Zithro (and stopping Omnicef), he's become aggressive again, hyper, unable to focus, whiny, some tics returning and extremely impulsive (he actually jumped into a garbage man's truck when the driver door was opened!) I feel I need to keep my hands on him at all times in public because I don't know what he'll do next. He can't focus enought to get dressed alone or even complete his meal.

 

Not sure what to think. Is this a typical Lyme protocol? What are the cysts busters? Why are some of your kids on 2 antibiotics? How do I know this is Lyme symptoms or is it PANDAS symptoms?

 

I was feeling hopeful and am now getting confused on what to do next. We haven't yet seen a LLMD, but a Pandas doc.

 

Thanks so much for any insight.

 

adkmom

[laure]

I'm so new to this I'm getting completely confused and exhausted. I would appreciate anyones knowledge! This is what I'm trying to figure out:

 

My ds4 pandas/lyme started omnicef was doing well, then switched to Zithro. 250mg since Lyme diagnosis. It's been 2 weeks and he seems to be backsliding. Since the Zithro (and stopping Omnicef), he's become aggressive again, hyper, unable to focus, whiny, some tics returning and extremely impulsive (he actually jumped into a garbage man's truck when the driver door was opened!) I feel I need to keep my hands on him at all times in public because I don't know what he'll do next. He can't focus enought to get dressed alone or even complete his meal.

 

Not sure what to think. Is this a typical Lyme protocol? What are the cysts busters? Why are some of your kids on 2 antibiotics? How do I know this is Lyme symptoms or is it PANDAS symptoms?

 

I was feeling hopeful and am now getting confused on what to do next. We haven't yet seen a LLMD, but a Pandas doc.

 

Thanks so much for any insight.

 

adkmom

[laure]

I would call Dr. B right away...(think that is who you are seeing...) He added Augmentin to my daughter's zith. The zith gets at intracellular, the Augmentin tackles a different area. If it is lyme, it probably takes more than one antibiotic to get at it in it's different stages. The cyst buster was added by our lyme doc, that will be important, but not as immediate as getting the right mix at the start.

[sf_mom]

I would highly recommend seeing an ILADS trained LLMD as soon as possible. Although Dr. B has been very helpful to those that have PANDAS 'only' and been willing to investigate Lyme in advance of formal diagnoses..... he does not yet understand how to appropriately treat or investigate co-infections properly for your child. Most LLMDs treat Lyme with combo'd antibiotics to attack both the inner/outer structure of the cell wall and eventually use a cyst buster to draw it out of its dormant cyst form.

 

It seems as if your son is having a herxheimer response to the azithromycin but I also suspect it is not enough to treat active Lyme phase. I would also call Dr. B to get an additional combo'd antibiotic to hold you over until you can get to someone properly train in treating/investigating Lyme.

 

Where do you live? Perhaps some of us can point you in the direction of a few good Dr.'s.

 

-Wendy

[adkmom]

Thanks so much Laure and Wendy. Laure has passed on one doc's name. I'm in upstate NY (Plattsburgh). What is herxing? He went to bed tonight and had started complaining about the bug sensation on him He hasn't said that in weeks. He actually seemed to be doing better when he was on Omnicef.

 

thanks again soooo much.

[kmom]

Adkmom,

 

Poor little guy..I feel your pain and worry. My two kids were PANDAS then Lyme and yes, Dr. B was great helping w/ PANDAS but a good LLMD is so important if Lyme is playing a role here. Dr. B ruled out Lyme a month before my kids' first HD IVIg and it was after the fact that I got a copy of the labs, saw more Lyme-like symptoms and more than one LLMD said, "Your kids had a past exposure to Bartonella (an infection ticks can transmit along w/ Lyme Borrelia bacteria)." This positive past exposure was apparent in their Igenex test results when Dr. B read the results but as you have probably read or heard in the documentary, my kids nor I looked positive for Lyme initially in the eyes of the CDC or IDSA doctors. But, the testing is so insensitive. You need a good LLMD to really sift thru symptoms, test outside the box and work with the individual. I wish we had started w/ our LLMD when this whole mess started w/ chronic strep in my DD. I believe it would have saved a lot missed school, bizarre cycles of behavior, heartache, etc. had we seen whole picture from the beginning. Who knows???

 

The bug sensation you described happened here. My DD said it felt like bugs were crawling on her skin and a couple times like it was biting her nose and brain. It sounds like your son is herxing which is just a slang term for a Herxheimer Reaction. It occurs when large quanities of toxins are released into the body as bacteria dies off during abx treatment. Typically the bacteria die off and release of endotoxins occurs faster than the body can remove them and you see symptoms ramp up. It's not fun to watch but it's usually a good sign. When I returned to my follow up appt after my initial Lyme treatment, I told the LLMD that I felt just awful after starting Doxycycline. He said, "Good! I wanted you to leave here and feel awful, worse than you had b/f abx treatment, and then start to feel better! It assures me we're on the right track!"

 

All of this is really confusing when you add in Lyme treatment to the PANDAS hunt you've been on. I remember thinking, "And what if this isn't the right path either?" But a good LLMD knows a lot about infections in general and from what I have encountered and many others on this forum, we're getting good results. So just hang in there and ask away b/c there's great sound advice and happy ending stories to be found here.

[adkmom]

Kmom,

 

Thanks for all your advice. I'll make an appt with an LLMD today. I always thought the bug sensation thing was related to Pandas (some sort of sensation tic). It's scary to think we could have easily missed Lyme all together without the right testing.

 

many, many thanks again.

 

adkmom

[sf_mom]

I also had the same 'bug' sensation on the front end of treatment. It lasted about two weeks and went away.

 

Kmom described a herxheimer response wonderfully. Its a hard concept because they do appear worse at first but it is an indication that the antibiotic is working. We still experience a herx response with every rotation or addition to regimen. Once you are further into treatment you'll be able to pick up on cycles probably indicative of specific infection. The bacteria is killed when it multiples/growth cycle. These are the typical growth cycles: Bartonella 1 to 2 weeks (inner red blood cell parasite), Babesia 2 to 3 weeks (inner red blood cell parasite), lyme days (bacteria) 28 to 34, etc.

 

Laure has made a wonderful recommendation and I look forward to what this new Dr. unravels and progress of your son's recovery.

 

Hang in there.... Its a lot to learn but we are around to help you sort it all out.

 

-Wendy

[adkmom]

So, today he's now throat clearing. Has never done that before. In addition to a lot of eye blinking. He moved non-stop!, abrupt, aggressive, moves allll day and finally collapsed at 9:30! He also developed a rash around his mouth and rosy cheeks. I'm waiting to see if it's from something he ate. Dr. B is suppose to be suggesting our next move. Will keep you posted ;(

 

Thanks for all the support. I'm starting to think of everyone here as my FFs (forum friends )) God, never thought I'd be here!! But glad I found you all.

[kmom]

I was in disbelief too when I switched over to this forum after just lurking. Interesting about the throat clearing. I have had a ton of that myself as I've started abx's for Lyme. Maybe part of herxing. It's rather annoying. Did you find an LLMD and get an appt yet?

[adkmom]

We see a pediatric Lyme doc tomorrow afternoon. I'll keep you posted. thanks for asking.

[Priscilla]

my dd 8 did well on omnicef too at first, then the effect faded after about 2 mos. switched to zith, it hurt her stomach sooo bad she wouldn't take it, and she was getting worse too. didn't have a lyme test at the time, maybe it was herxing, dont' know. for now, she has been pretty good on augmentin xr 1000mg bid, but new lyme diagnosis. not sure if dr will add zith but I am a little afraid of using it because she doesn't tolerate it well. he said he would probably add something to augmentin. if your ds does well on omnicef like my dd did, then maybe augmentin will be better than zith for now. i plan to be conservative adding in other meds, will try to update.