philamom

just fyi -- may not be the same -- about 4 months into treatment for TBI including bartonella, i got a small bartonella rash on my upper leg. around that time, my inner elbow was very itchy when i went to bed. after a week or so, a rash came out in that same area, not due to scratching. dr said he believed due to TBI treatment. it lasted for a long time - maybe 4-6 weeks and at time was very itchy. then it just went away. a few days ago, it's come back -- now just a few small bumps but is itchy. i didn't want to put cortizone on it so used a homeopathic stingstop -- not really the most appropriate -- a calendula cream would probably be better if you wanted to use something natural. i think TBI can include many types of rashes. I missed this post...must've been typing at the same time. I've been putting cortizone cream on an underarm rash my daughter has. Today it's a bright red 3" ring. I forgot that cortizone cream is a steroid, right? Is that why you shouldn't use it? I'll pick up some calendula cream and see if it brings her some relief. My daughter is being treated for Bartonella.

Thanks susie, you are probably right, dd8 is much smaller than dd9 too so maybe this makes a difference but I better follow up and make sure it's OK for dd9 longterm. dd8 yesterday was crying that she hates her life because she has to take too much medicine and she has an itchy rash with bumps that have appeard on her arm and torso. Now I have to figure out what that rash all about. Susan Oh Susan...it's been a bumpy, bumpy ride here as well...ever since strep wen't through my daughter's classroom and then she caught a cold that went into her sinusus. Beginning of the week things seemed to be turning around, but since starting an after-school program on Wednesday she's been falling apart again. She's so emotional with lots of tears. And now she has a 3 inch circle rash under her armpit thats itchy, so like you, need to figure that out as well. When I took a picture of it this morning, she was crying that she hates her life and me too Hang in there My daughter's llmd told me to take a picture of it (without flash) and forward it to him. Of course, I used a flash with the pictures I took earlier, now I'll have to struggle to take a few more

Thanks susie, you are probably right, dd8 is much smaller than dd9 too so maybe this makes a difference but I better follow up and make sure it's OK for dd9 longterm. dd8 yesterday was crying that she hates her life because she has to take too much medicine and she has an itchy rash with bumps that have appeard on her arm and torso. Now I have to figure out what that rash all about. Susan Oh Susan...it's been a bumpy, bumpy ride here as well...ever since strep wen't through my daughter's classroom and then she caught a cold that went into her sinusus. Beginning of the week things seemed to be turning around, but since starting an after-school program on Wednesday she's been falling apart again. She's so emotional with lots of tears. And now she has a 3 inch circle rash under her armpit thats itchy, so like you, need to figure that out as well. When I took a picture of it this morning, she was crying that she hates her life and me too Hang in there

She mentioned on the Tourette's forum that she would not be posting for a while to allow time for personal family business. I hope all is well!

Exactly...like I did 1000 lunges...very, very, very painful. My legs are so wobbly I can barely stand. Oh, I sure hope it doesn't extend to the back. I'll try some alleve. I've been taking Advil...nothin. I'll ice as well. Thanks!

Thats it...really, really deep bone pain in the thighs. It's SO painful! I'm having exreme difficulty sitting & standing...what did you take for the pain???

Hi All, I am taking Doxy (100mg 2X day) for a positive lyme WB result and for Rosacia. About 3 weeks into treatment I started having severe pain in both legs...all over soreness...day & night. I haven't done anything different and no exercising. Could this be herxing?

I also emailed the PANDAS doctors we have seen in the past, as well as Cunningham's office.

sending you a pm

I know, I know! We've come along way to be able to use the emla cream. I use to never be able to tell my daughter in advance about her blood draws. I would have to go to the lab the day before to take care of all paperwork, schedule a time where they would take her immediately, tell her right before we left the house, and hold her down why she trembled through the entire ordeal. And that was a good day...if it was successful! I think it was not only about the anxiety of the blood draw, but also the fear of losing part of her, even if was just blood. It goes along with the hoarding. Then for months she would ask me daily if she was getting a needle today. As she got better, we were able to make an arrangement that I would tell her first thing in the morning (so I scheduled them in the am even if she had school). We still had to force her into the car though. But she was no longer asking me every day if she was scheduled for a blood test. Then one morning I pretended to be putting moisturizer on her arms, but instead used the emla cream in the one area. Then I told her she was going for a blood test and that I used a special cream to numb the area. It did really help with the pain. Then it got to the point where she was able to tolerate getting them as long as we used the cream. Last month, we were able to tell her a week in advance that she had a doctors appt. and they would have to take blood...she helped me pack the emla BTW- we tried benadryl, ativan, calming drinks...nothing helped the anxiety. We did use rewards though...I think most of the webkinz she owns she received from getting blood draws and ivig.

Place it on the arm and cover with small piece of saran wrap. Don't rub it in. If the blood is being drawn at the doctor's office, they may have it, or you will need a prescription for it.

Our llmd also feels a positive 31 band indicates its been present for at least a year.

I also remember your story. I was following your blog, but recently lost your info. My daughter always went into remission (90-95%) with antibiotics with each episode until March of 2009. At that time we moved forward with daily abx and IVIG. While this helped at times, we couldn't get her back in remission. In July 2010 she was diagnosed with lyme, and in September co-infections. She is currently on a combination of abx, and even though she still reacts to strep/viruses, she is getting better. I'm amazed at the progress she is making. I pray you find the answers to true healing! I would be interested in hearing more details of the homeopathy you're currently doing, when you have the time. Thanks!

will pm you.

It sounds like you're in better hands now. It is also a similar protocol that my dd9 (60lbs) started on...1000 mg Amox & 250mg Zith daily. We then went on to add a cyst buster on the weekends, and are currently treating co-infections as well. Good Luck!

Susan- We use Burbur "Detox" from Nutramedix in the morning and evening. We mix it in flavored water. You work your way up to 15 drops am/pm. Can you give some more info. on the bile binder? What is it prescribed for? Melinda edit- we sometimes use bentonite clay mixed in applesauce topped with cinnamon.

Fantastic!!!!

If you go the the websites that are treating with IVIG (CVID, PID), you will find resources stating not to vaccinate within 3,6 months to a year within IVIG.

I thought I read here in a medical paper (can't remember when) that vaccines should not be given within 6 months of ivig. You should be able to declare a medical exemption...right??

In my comments of "or at least severe chronic infection", I was just referring to the short list of exceptions that some think can also depress the CD57. As far as I can remember, it is the ones you've listed here. Michael- Has your number gone up since treatment? Melinda

Ok...this is where I get a little confused (doesn't take much ), I thought someone mentioned that only chronic Lyme and HIV (and possibly Mycoplasma) can lower the number. Can other chronic infections lower it as well? Thanks!

The Custom Probiotics does not have the S Therm strain. We use Custom Probiotics and/or Klaire Thera-biotic Detox (my favorite), Florastor for kids, Cullturelle for kids, and integrative Probiotic Pearls. None of these have the S Therm strain. My daughter has a history of GI issues and I find the probiotics to be very beneficial, especially while on abxs. I did see some herxing initially with some of the products, but then it wen't away.

I think a short trial of abx is a smart idea, while checking other avenues. This is where my dd was this time last year, and it eventually led to her not being able to leave the house (3 months). She had a fear of choking & vomiting. Since she had physical symptoms (severe heartburn, GI issues, weight loss), I didn't realize much the ocd was playing a part. It grew into a major issue very quickly!

We seem to be getting back on track. Dd was out of school sick this week...returned for half day yesterday. Monday, I received a call from the school nurse...3 reported strep cases in her class & class next door, which they share afternoon recess with (inside, due to snow). Now I just need to rule out the possibility of sitting next to a strep carrier, since her recent desk rearrangement. I should know by tonight/tomorrow. I didn't call for an abx change--waiting to see if she can pull out of this completely. She didn't give me a hard time on returning to school today, so I take that as a great sign.