philamom

edit,

JT's Mom- Good luck with your appt. next week! Can you let me know how it goes...we are also on the waiting list but have decided to see Dr. J until there's an opening with her.

edit

Did you have the Streptococcus Pneumonaie Serotype test done? In my daughter's case it was the 14 Serotype. I know you said you had all testing done--but wanted to double check on this one? Also, in one of my daughter's earlier episodes, the antibiotic Duricef (ceph.) put her in remission.

Mati's Mom- it cost more money so many start with the basic lyme Western Blot. In hindsight, I wish I would have ordered the 6050, since my dd was not on any abx at the time. We did receive reimbursement of 70% from our insurance...out of network.

Yeah, I couldn't recall if it was removed or brushed away but since there was a pinpoint a week later, I'm guessing it was embedded. It wasn't my daughter's normal doctor and no abxs were prescribed

The only time my daughter had a tick on her was in 2006. I couldn't recall where on her body or whether it was embedded or not, but I remembered taking her to the doctor for knee pain shortly after. So I picked up a copy of the office visit yesterday. It appears the tick bite was on her left shoulder and the following week she had pain behind her knees, mostly when bending. Can pain be in a different location from area of bite? It also says there was a small dot pinpoint where tick was removed (this is a week later) - so sounds like it was embedded?

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it. Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!! Jill- are you seeing Dr. I? At one time, he mentioned removing my daughter's tonsils/adenoids with a recommendation from a PANDAS doctor even though they didn't appear to be very large. The ENT didn't mention her being on amox during, but she was given a dose in the hospital and the script was for 10 days following. Remember, going into the procedure, this doc thought he was basically taking out "healthy" T & A to help my other pandas dd, but then once he got in there, he saw what a mess they were...

I had a phone consult scheduled with him 13 months after her first ivig (she is currently doing ivig with Dr. B but I wanted to keep him in the loop as well). I cancelled when I received the positive lyme results, so I could figure out my next step. At the time, I informed him of the Igenex results but never heard back. I wanted to get his opinion on the Igenex testing, but could not afford the expense for that specific inquiry. edit- I just re-read my post and wanted to add that no questions were asked in my email. I just simply stated "my daughter received a positive Igenex WB lyme result and at this time I need to cancel our appt, until further evaluation". The reason why I scheduled the appointment was to get his opinion on whether my daughter should or shouldn't be on proph abx. Once I received the lyme result, she was back on abx anyhow. Dr. K has been extremely helpful to us and always answered my emails!

I would add that I do not like the name "chronic lyme" because it suggests you can never get rid of it and I am hoping this is not true. According to my llmd they are very successful in treating lyme and sometimes it comes back within a few months of stopping treatment and the patient needs to do a few more months of treatment but afterwards they are done. lyme mom- can you refresh my memory--if you don't mind posting, if your children are still being treated with abxs?

Well, I told him my daughter's results 13 months post IVIG.

SF mom- great info here. Some of the symptoms I wouldn't have thought to associate with lyme...food avoidance, bed wetting, noise and light sensitivity, sleep issues, sore throat, are familar to many of us. I don't have the fast reply on the lyme forum, so I didn't want to post the entire article again.

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

Michael- thanks for the great info! I couldn't find it listed in the website you mentioned. I noticed they carry something called LDM in liquid version, but no capsules.

That's great news! Please continue to keep us posted on your success!!

y

I don't even have anything in common with magazines!! I hate the parenting magazines (BTDT, got anything on rages??), and all the Good Housekeeping ones, please, who has time to organize, bake, diet, buy sexy underwear for their husbands!! LOL! I just sit there and dream about my old normal life and then close the magazine and go back to reality... Maybe I should have added an LOL, just trying to add a little a sense of humor...but i'm even to tired to do it correctly. Yeah, I agree, I doubt any of us have anything in common with the mags. I keep receiving my subscriptions to parenting magazines that are piling up in the corner...like who has Family Fun anymore. I was thinking more in the lines of checking out "Mc Dreamy" to go with my fantasy of being on a stranded island. Can I join you in the pity party?

Steph- when I first started reading this forum (ok lurking) over a year 1/2 ago, there was a poster "PMoreno"--I think, that believed her childs symptoms were not getting better because of all the havoc being done to the gut. She eventually stopped all abxs. I think she mentioned something about making her own coconut milk and also purchased products through body ecolgy? I vaguely remember it's been so long. You might want to check her posts through the search engine, to see if any info is of interest.

Steph- I feel for you! Wouldn't be nice if we could all rotate our kids to one another for some mommy time. I wouldn't feel so bad if my kid was tormenting y'all! I also think I might be dealing with c-diff again. It's been a real tough week and poops are smooshy & smelly. Vickie- I know that out of body experience all too well! Peglem- my heart really goes out to you!! and there's not even the good magazines at the end of the aisle!

y

You can call Igenex and they will send you the kit with paperwork to be signed by a docotr. It could be a GP, Chiropractor, exc...

That's great Jill! I'm assuming she's on abx for the procedure? Do keep us posted with the results...was it done with Chop?

Hello, I am so happy that your son is doing good are you on any abx's at all? and what is liquid silver? Our DD had IVIG in Feb with Dr.k and she is also doing great,We take one day at a time and enjoy all of the good days just incase the bad ones come back. Thank's Tracie&Doug Silver supports yeast,immune system,gastro problems. He takes 5 squirts daily. During and after IVIG he will take antibiotics again but then wean gradually. Some say it is risky but it is working for us. When it no longer works we will try something else. I am not oppossed to antibiotics but it was too hard to keep up with 6 supplements all at different times. We were taking yeast med,probiotics,antibiotics,fish oil, clay That's great news! Do you use the Mesosilver by mouth? Good luck with upcoming IVIG!

How do you move this to Lyme forum?

Fixit- I can't help with your questions but I wanted to wish you all the best on Friday! I'm praying for a fast recovery for your son!!