philamom

My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.

Mention that the research was done at UNC if that helps. He may not know about it (just like so many docs don't know about PANDAS and Lyme.) Thanks!

I'm a bit confused. Is she on a 504 or an IEP? Are you trying to get an IEP? IEP's can be written even in the absence of a learning disability (there are 7 categories, and "other health impaired" is one of them...need a doctor's note.) yes, the definitely carry over from year to year. PM me, and we can discuss more, because we are in the same state (same area of the same state), and we've been through Due Process and mediation. They shouldn't be pushing her like this. I'll pm you this evening. They actually called our LLMD yesterday and said my daughter hasn't been to school in 5 months, which is #$@@. She was out Jan- mid March completely, due to severe, severe nausea, vertigo, gerd, GI complaints, and a severe fear of vomting. After getting back on antibiotics (off since Sept) she's been doing some hours in the afternoon - but if you come in after 12:00 you are marked absent. This week she attending 3 1/2 hours day (which is an hour more listed on the doctor's note we turned in. They want her to come in the am hours - I've been bringing her in 12-3:30, since she is still having morning issues. She has a 504 (since December) and was evaluated last 7 days for an IEP.

We see a Rheumatologist next week - I'll get his take on it.

This is all great information, as my daughter just completed an evaluation for an IEP. The school psychologist met with my daughter privately for a few sessions. I'm not sure if it will be approved since my daughter was doing better while tested. She had a rough couple of months while off antibiotics, but is now back on them and improving. She currently attends 1/2 days with 3 hours wk after school tutoring. If the IEP get's appproved, will it roll-over to the next year? She will be attending the same school. Thanks.

That would be something. Off to research "HDAC inhibitors". fightingmom- can use my basement, you Mad Scientist

No testing, but we use Florasor, Culturelle, Integrative Probiotic Pearls, and Klaire Labs Ther-Biotic Detox Support. Also use Custom Probiotics at times.

Our daughter's LLMD uses Igenex to test this (in our case).

Signed.

Dr. B uses his own lab for testing now (not Quest, Labcorp, or Igenex). I can't remember their name off hand. I have a bill somewhere around here, if you want to call the lab to inquire. Let me know and I'll find it.

Your right- they pushed back. I was a little frazzled when I received the email, but I just drove to the school and handed over another copy of the letter. Apparently, there is no end date to the letter, so it was questioned how long this would take. The letter, asking for my daughter to continue attending at 2 1/2 hours day, was just written on April 10th - so I'm suprised they were trying to move forward so quickly. Overall, the school has been very supportive -- this was our first little quirk. They know I'm tring, and my daughter is moving forward faster than what was originally proposed. So, I'm exremely proud of her! Now, for the IEP - she had 4 meetings with the psychologist and 1 with a reading specialist (last Wed,Thurs, Fri, yesterday and today). She did great (go figure, right- she's back on abx now). I doubt it will be approved, unless they go by the way she was the last 5 months. She is academically where the class is and in some areas higher. The reading specialist said she didn't have a passage high enough for her. But this is all good, right? I mean she's doing better right now and hopefully will move forward with more hours in the day. Thats all that matters. So she probably won't need it anyhow for this year. Does an IEP roll over to the following year?

I would also hold off on the IVIG or push back to a later date (to give you soem time to see if it holds).

My daughter, who was so sick in January that she could barely move without experiencing some type of vertigo, had severe, severe nausea, is finally getting better since resuming antibiotics the end of February. Many days, we had to carry her up and down from her bedroom upstairs. She was off abx since end of September. We tried a couple times to get her back on them but her body rejected. We are in the process of getting her up to Amox 500mg twice a day. She started back to school 1-3:30 (twice at 12:00). She is still having physical difficulties in the morning (headache, joint pain) until she takes a motrin. Her LLMD gave us a "medically necessary" note to keep her at 2 1/2 hours a day of school while her medication is being increased, and she is recovering from this flare-up. She has a 504 and receives tutoring from her teacher 3 days a week (after school- at the school- used to be at our house). She completed an evaluation today for an IEP. Compared to Oct-Feb, she is really doing great - except in the morning hours. She's even fighting a cold right now from completing her first full week of 1/2 days last week. Anyway, they are ignoring the doctor's letter and pressuring me to bring her in more hours, and to bring her in the am. They just sent out an email to (principal, nurse, guidance counselor, psychologist, pupil services, teacher) saying that the goal is to have her in full days except lunch (she can come home for 30 minutes) by April 30th. And then have her in all day the following week. Question- Are they allowed to go against the doctor's note???

WOW - that's incredible. I really pray it last!! What do you think caused the change? Did he have a previous IVIG?

Based on my opinion, as well our LLMD, the 39 & 83-93 band are significant - even IND. It's indicating a response (not negative). Also, my daughter was negative for all co-infections through Igenex when we first tested her, but our llmd found Bartonella by testing through another lab (Specialty). Her Western Blot was positive with Igenex. In December we tested her through a new culture test, that was also positive for Bb. I would keep the July LLMD appointment. Just find out the doctor's cancellation policy - you can always cancel prior. My daughter is continuosly positive for the 83-93 band.

Nice!! Thanks for posting.

I've heard Aloe Vera juice (ST George brand -tasteless) may be helpful. I keep meaning to pick up some myself. An ounce or two daily.

I won't be able to watch until late this evening. I would love to hear some feedback or opinions after it airs, if you have the time. thx

bumping

No - def. not arguing here . I was only saying that while my dd was on a combo of antibiotics she never complained of stomach issues, gerd, vertigo, feeling like she was going to vomit, exc, exc. But off of antibiotics, these symptoms are severe for her. I'm not debating the gut/pandas/lyme autoimmunity. Wishing healing and happiness for everyone here .

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme. From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son. The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella. Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you? I am unsure. It seems like the CDC is very different than ILADS and it's confusing to me. I don't know who to believe... but I do know that all Lyme/PANDAS symptoms went away with the fecal transplant... so that leads me to believe more that inflammation is a driving factor rather than chronic infection.. How can you say your daughter had no GI problems if she has an autoimmune disease. That's like the #1 HUGE, BIG FLASHING LIGHTS indicator of a gut issues. I re-phrased to say my daughter did not complain of any GI distress while on a combo of abx for her lyme & bartonella - none. BUT, off of abx, she had (still has some minor - just resumed abx 6 weeks ago) major GI complaints. That's all I'm saying.

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme. From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son. The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella. Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

I know this is not the norm, but my daughter had no GI issues while on a combo of abx for lyme & bartonella treatment. She did have major problems the year before treatment and more recently when she stopped abx in September. I am now seeing some improvement again since resuming abx. Clearly, the bartonella is a cause for my dd's GI issues. LaurenK- you may want to read some of pandas16 posts - you seem to have a lot in common.

Happy Birthday little girl! May this be a better year for you!! Stay Strong Mama!!!