kferricks

Thanks for the update. It really helps me to be able to read/hear of ppls experiences. The good/bad and the ugly. It gives me deeper insight into what is going on. What I can expect. Or is this happening to anyone else? I am new, and it is scarey just starting out and not really knowing what to expect. Heck I was in tears today over the medication. Did the pharmacy give me the right dose? etc. We just had our first LLMD appt on Wed. On the way home last night DD started to flare & crazy hit my car and home since.... I'm assuming somewhere during the 12hr drive that she picked up strep and is in the midst of a pandas flare because she has not been on meds for that in over a month. Was so happy to have Amox/clave as part of the meds so we can work two birds at the same time. Please keep us updated. I look forward to when ppl post.

Thank you so much! I was worried it was too much lol I feel so much better just hearing that, now if the panic woud just stop... our script don't even say am/pm so was going to ask that too... my pharmacy sucks! They were suppose to give her the 250 mg instead they gaver her the 500mg to cut in half and well my child already has big time issues and told the doc that she would not take the pills if they were big... so even when i go to cut these they are still going to be bigger than she is expecting. Oh the joys of Pandas/Lyme

Dr prescribed Tindamax 500mg 1/2 tablet twice a day. My DD is 11 @ 143 pds. I'm having panic attacks cause the pharmacy was having problems with our script as it ws. Anyone on 500mg a day around 140pds? just want to make sure this is the right amount....

My DD seems to run hot and she is always itchy head to toe. We are new to this but I am thinking that maybe it is the lyme in her system running crazy?

Mam2alex gave me this one: Western Blot Bands description: 9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients

Thanks Emerson, just one more question. Did your LLMD tell you what you should use? Do they usually say that you should detox? We see ours on Wednesday, and I know I'll find out then. The Biaxin that she has been on has really helped. I see that her eyes are rarely dialated and her mood is much better. I even see her slightly fighting the OCD in some areas, but then I see some of them just morph into new ones.

Thanks you guys for taking the time to respond. Everything I read helps just a little more. I have been reading, talking and absorbing every thing I can because I know the more informed I am the better for my family. Do the lyme docs usually tell you about the probiotics/cleansing etc.? Do they usally tell you how much you should be giving and what helps? LLM you are right, and I have read many posts from you and just wanted to tell you that I like your straight out approach to ppl. We just keep going because we do not have any other choice, if we want our kids back. PTCgirl, was your child already experiencing pain before hand? Suzan, momain, thank you for the suggestions, I have them written down and will be reading up on them. Jodi

Thank you Suzan. I will add the bentonite clay to my list.

charcoal should help with the gas

We see our LLMD on Wed for the first time, and I'm just terrified after talking to a few ppl and then reading here. My child is Pandas/Lyme. She has been on Biaxin since the middle of last month and the last two weeks she has seemed to be fighting the ocd a little but then I realized it was just morphing into other ocd behaviors. Anyways, is it true that my childs behaviors are going to get much worse before they get better? Does this happen to everyone? Does it last a long time? I was reading the other post and would like to know how I help her drainage? Is there anything I can do to help prevent things getting worse? I just don't know if I can deal with it getting worse. My nerves are shot, I'm just getting over shingles from my nerves, and I'm just a basketcase. I have been doing epsom salt baths and giving her culterelle (learned on here), but I really do not know how much I should be giving her. I've only been giving her one capsule a day in her juice, and about 2cups of epsom in her bath. Please help me here...

No diabetes here. Pandas/Lyme

Oh how sad. You have my prayers!

I have not seen the LLMD yet. All I know for sure is that she has Erch. I don't know what all the results mean. I posted them a little bit ago hoping to get some insight.

Told me they were calling on behalf of the CDC. They had a copy of the Igenex tests and anytime someone tests positive for it they collect the information because they want to know what the symptoms are and where it was contracted. I'm very nervous and worried. I did not tell them who would be treating her, but they said they knew who ordered the tests. They also wanted a description of her symptoms.

I'm in SW Pennsylvania, close to Pittsburgh. I will be traveling to CT. I understand about having to pay cash and am ready for it, I think..

LGg +++ Lgm + so a big yes!

Thank you Michael. I have been trying to get through to the Lyme doc. Phone is glued to me since yesterday. For the last couple weeks I have been trying to get her into epsom baths and trying to sneak culterell into her drinks. Just things I've read off of here. I know they are not enough. Also, the Pdoc has her on Biaxin or Erch until we get into the lyme doc. Any other suggestions from anyone?

Thanks for the link. Interesting read.

Our Pandas Doc referred her to an LLMD. His exact words were "I want her to go to this person because not all Lyme doctors know what they are doing." LOL He was referring to the difference between a Lyme doc and an LLMD. I really appreciate him because he is such a straight up guy with us. He was big enough to say that he does not know enough the complexities of treating lyme, but he would like to see us after our first appointment oK here is the results and if anyone can direct me to Busters post about what they all mean, I would really appreciate it. IGM 18 kda ++ 23-25 kda - 28 kda - 30 kda + 31 kda - 34 kda - 39 kda IND 41 kda + 45 kda - 58 kda + 66 kda - 83-93 kda + IgG 18 kda - 23-25 kda - 28 kda - 30 kda + 31 kda - 34 kda - 39 kda + 41 kda +++ 45 kda - 58 kda - 66 kda - 83-93 kda -

I have no symptoms left. Never took probiotics and never had problems with yeast.

As a teenager I had RF. I also had ocd, and chorea movements. My ocd was almost psychotic in nature cause I kept feeling and occasionally seeing a large cochroach on me lol. There had never been one in my mothers house (she had ocd (just right), again we did not know it. Mom would hollar at me if I let her know that I felt one on me. With the movements, my dad kept noticing it and would tell me to stop that. lol These were minor and did eventually go away completely. I was on the biacillin shots once a month for 5yrs along with pennicillan @ 3 times a day. So, I fully believe that our kids can outgrow it with the proper medicine, and vigilance on our part and on the kids part when they become older teenagers or young 20's.

Thanks for the update and I loved watching him dance. He is such a cutie~!

Anyone know if often ppl with Lyme get shingles? Just curious, I tried to look it up but not seeing too much out there about it. Last weekend I came down with shingles; never knew someone my age could get it... I'm only asking, because I've been wondering with different ailments I've suffered over the years if possibly I have lyme. I know I should spend the $ on the test, but would rather wait and get my kid on the road to health.

Thank you both.

Just wonding if this is something else to connect to the lyme..