mdmom

I have heard her name mentioned her multiple times. What is her specialty? How PANDAS-friendly is she?

Itching makes me think that parasites could be involved. I'm not sure how to test for these. My daughter had itching and our LLMD diagnosed her clinically with parasites. She did a 2 month parasite protocol and the itching stopped. Can anyone chime in on how to test for parasites?

Just because your doctor said that your thyroid levels are "normal," does not mean that your thyroid is working optimally. Ask your doctor what your levels are - do not take "normal" as an answer. The newest endocrinology guidelines say the TSH level should be between .25 - 2.50 according to my treating physician. And it will take a long time (as it usually does) for new guidelines to reach physicians and labs. Our LLMD says that Lyme patients seem to feel best when the TSH is at 0. My TSH was 8 when I started treatment 1.5 yrs ago (with Armour Thyroid). It is now .19 and I have never felt better. I no longer have the symptoms of fatigue, weight gain and hair loss. In fact, I have lost 20 lbs. in the last year.

Melanie, I'm hijacking this post - I have a question for you. Has the 1g/kg IVIG worked well for your son? How old is he? Yesterday a doc recommended 1g/kg IVIG for my son every 4 weeks rather than 2g/kg every 8 weeks, which is the PANDAS protocol often mentioned here. TIA.

Life is full of surprises.... I was hesitant to talk about PANDAS today with the new immunologist. But, he is not sure my son has CVID and wanted to confirm it with a vaccine challenge - which meant I had to talk about PANDAS and why he can't have vaccinations. The doc does not believe in chronic Lyme, but we agreed to disagree. However, he was most interested in the PANDAS diagnosis and is going to find us help with IVIG somehow. He's going to "call around" to some colleagues to see if they can help. I couldn't believe his humility...when he started explaining his scientific reasons for not believing in chronic Lyme, my son stormed out of the room. I then apologized for his behavior and started to cry and the doctor said to me, "it's ok - you both have clearly been through a lot." Whoa - if nothing else, it sure was nice to see some humility. So, now I do what I'm really good at: WAIT. He said it might take 6-8 weeks to find some additional help. But we have waited 11 years to get help for PANDAS, what's 2 more months? I gave the doc copies of Swedo's white paper (he used to work at NIH) and the PANDAS info from the IOCDF website. I think he might be intrigued by my son's case from a scientific perspective. Thanks for everyone's responses. Thank goodness you all understand.

Our LLMD (who is also in Washington, DC) says to take 2 Tindamax right away. Then follow-up with 300 mg of Doxycycline (or Minocycline).

PowPow - I am thinking about not mentioning PANDAS since I have to mention Lyme because of the aggressive treatment he is receiving. The CVID is valid but our policy says my son must show proof of an impaired response to vaccinations - and he cannot be vaccinated! He has a history of PANDAS exacerbations following vaccinations. Both Dr. B and Dr. T wrote letters on our behalf exempting him from vaccines, but BCBS won't take this into consideration. He has met the other two criteria for CVID outlined in the policy - history of recurrent infections and low IGG (2 standard deviations below normal).

I know that some of you have read my whining over the last few months and I appreciate you following my situation. I did 3 appeals with BCBS of Minnesota - my son has CVID (and PANDAS) and they are still denying IVIG. Please help me if you have any ideas. I cannot stop crying wondering how I am going to help my son further. And at this point I am more concerned about treating CVID than PANDAS - he cannot go anywhere without getting infected with something new. He has been at home since May 2011 and his activities are very limited because of the health issues. Just to review -- I have already solicited help from Dr. B, Dr. T. Their help made no impact on my appeals. Ironically, I found on the Immune Deficiency Foundation website today that other people have had issues getting IVIG covered for immune deficiencies through BCBS of MN. I e-mailed them to ask for more help. We will see a new immunologist today but I have to be prepared that he will either deny the existence of PANDAS or say that my son does not have CVID. Thoughts?

Thanks again 911RN - we went to family doc yesterday. He brought up IgA nephropathy before I even said anything. He already had written the referral for a ped nephrologist. My son will have an renal ultrasound today and see the specialist next week. He thinks it might be one more piece of the puzzle with all of the immune dysfunction. We were denied yesterday for our 3rd appeal for IVIG (for CVID). I guess its a blessing in disguise that we haven't done IVIG yet now that we know there are kidney issues. I'm trying to stay positive...........

I do not understand where the theory came from that kids will outgrow PANDAS/PANS. There are many children mentioned here that are well into their teens, some in their 20s who have not outgrown the disorder. Get help now - your son has a good chance of recovery because of his age.

Any Lyme or co-infection treatment we have done always involves antibiotics (Minocycline,Azithroymycin, etc) for 21 days and then breaking for 7 days, at which time we would do a week of Flagyl. I never feel great on the weeks I take Flagyl, nor does my husband, which tells me it is stirring things up - probably drawing Lyme out of it's hiding. My son takes IV Flagyl on weekends only (Mon-Fri he takes 2 other abx). He feels yucky on the weekends when taking it. Point being, my LLMD pulses Flagyl as part of our therapy.

Has anyone tested VEGF levels in blood for elevation? This is what causes the marks to be visible, I believe. My daughter's original Bartonella rash was horizontal stripes on her lower back - it looked like a large animal scratched her with its claws. Now it's moving vertically and wrapping around the sides of her hips. She has also had them on her breasts in a sunburst pattern. They sound so pretty, don't they? She is not specifically being treated for Bartonella yet (we are still working on Babesia), but the marks have clearly changed pattern with antibiotic use.

LLM- thanks - any information you can send me would be great. I cannot believe we might be adding one more diagnosis to the mix...... where does this end? The good news is that my son has been receiving school instruction at home since May 2011 to reduce his exposure to strep and anything else that puts him at risk. It is one of the best decisions we have made with his care.

911RN - OMG - the IgA nephropathy is dead-on. No surprise that if we are dealing with PANDAS (strep) we could be dealing with this too. I wonder if this is a risk for all of our PANDAS kids. You all might want to ask your docs about doing urinalysis. My son's first urinalysis was just 3 weeks ago. Why isn't this routinely done? We will see the family doctor tomorrow and will hopefully find a direction to take this.

2 weeks ago my son did a 24 hour urine test done checking for protein. He has been diagnosed with CVID and the doc's theory was that if he is dumping protein in his urine it could be further proof of CVID (low total IGG). His protein came back high at 252mg. Anything >150 is considered high. We just retested earlier this week and now the protein level is 837mg. He has been on antiobiotics since Nov 2010 and IV antibiotics since Jan 2012. Would antibiotic use cause protein to leak into urine? Worried about kidney function, which looks normal on his weekly blood work.

2 weeks ago my son did a 24 hour urine test done checking for protein. He has been diagnosed with CVID and the doc's theory was that if he is dumping protein in his urine it could be further proof of CVID (low total IGG). His protein came back high at 252mg. Anything >150 is considered high. We just retested earlier this week and now the protein level is 837mg. He has been on antiobiotics since Nov 2010 and IV antibiotics since Jan 2012. Would antibiotic use cause protein to leak into urine? Worried about kidney function, which looks normal on his weekly blood work.

Joan, Where is the OCD Institute? Always looking for information for my back pocket

We use sublingual methyl B12 liquid for my son and the rest of us take the methyl B12 injections 3x/week. We use Thorne Methyl Guard Plus 2 caps/day. Anyone else use this product?

Bordercollie, I sent you a PM.

I will send you a Personal Message.

Thanks LLM - you are one smart cookie. I had to dig deep for my pre-med undergrad brain to understand even a smidge of the diagram. But I have Lyme brain that often makes it impossible to wrap my head around anything besides dispensing pills these days In your opinion, why don't you hear more on this forum about supplementing with IV glutathione? My non-PANDAS daughter (she's Lyme and co-infections) was tested through Great Plains Lab and found to have a very low glutathione level (lowest the LLMD had ever seen) so we started supplementing with 1x/week 5ml glutathione. I cannot tell if it is helping and the doc doesn't think we should test levels again right now. My PANDAS/Lyme son is low too, but not as low as my daughter and unfortunately I had to choose only one child to try the glutathione on - it's $95 per dose. I know you posted a few weeks back about over-methylation issues. How does one know if there is too much of a good thing?

Thanks everyone for the feedback. It is really helpful! I am more hopeful now that I've heard others' stories. I spoke with Dr. Storch on the phone myself a few times - he has a wonderful demeanor and nothing seemed to surprise him about my son's obsesssions. Can anyone give me advice on where to rent a home? I know we can stay at the Ronald McDonald house, but I think we need more privacy than that would provide; also, we are counting our trip as our big vacation (we haven't taken one in 3 years). My kids are both on IV therapy (20+ infusions/week each) so we need room to spread out and relax. I found a rental in St. Pete Beach that looks good and affordable. Where did you all stay during your visits?

Looks like we are headed to All Children's in FL this fall for the intensive OCD program. My DS15 seems pretty positive about it, but I have my doubts that he will buy into it. We have done years of CBT and he hasn't responded. Anyone care to share their experience with this program, particularly with their teens? TIA.

Evergreen, I sent you a Personal Message.

We are dealing with PANDAS, Lyme and CVID too. Can you all just come over for coffee one day? :P Sometimes I feel like I'm the only one in the world dealing with this stuff.