mdmom

I'm in the same boat with insurance not likely to pay. I've been calling around to compare pharmacy prices. I purchase so much from our local pharmacy (since our entire family is treating Lyme and co-infections), that if I purchase IV immunoglobulin meds from them they are not going to upcharge the usual 30%. It's worth calling around.

PM'd you.

Some docs hit yeast with multiple antifungals, I guess to attack it in the gut and systemically. My entire family takes Nystatin (for gut) Diflucan (systemic) and Mycelex (upper GI/mouth). We are no longer yeasty because of this protocol (15 months now). We take Milk Thistle, NAC and antioxidant supplements to protect liver. Haven't had liver issues yet.

Keep in mind that different labs have different ranges, which complicates things. I'm looking a my son's labs - 1 lab has IG1 range at 315-855, the other lab has IG1 range as 347-993. My son is normal IG1, but low IG2 and IG3. Immune deficiencies seem to be common among PANS children.

Just talked to Dr. T about vaccines, and he said no more - too risky for PANS/PANDAS kids. He has patients that have had exacerbations from vaccines.

Both DD12 and DS14 took one round of it in the beginning of treatment to jump start things, I think. Then they started Babesia treatment. We had to go back to Babesia treatment after my daughter relapsed with this infection. all family members are being treated for Babesia even though she is the only one serologically positive. - Lyme docs aren't sure how Babesia is spread after one person gets it in the house. I only needed to hear that once before I started filling scripts for all of us! Anyway, when we started treating Babesia a 2nd time, my husband, daughter and I all started taking Mepron again. My son complained about the Mepron, so LLMD prescribed Alinia in it's place. My point is, I believe our doc uses it specifically for Babesia. We see the same Lyme doc, right?

Yes, I'm in MD but I'm not interested in seeing Dr. L. I need someone who participates with my insurance. Dr. Shafrir's staff assures me he diagnoses PANDAS. I am not concerned with his treatment methods either, as I already have a treating physician. I'm just building a team of docs that can be a resource to me. I've already seen Dr. T but he's not covered by insurance, so consulting with him regularly is not practical for me. Curious to know other's experiences. Thanks.

Maybe I'm missing something here, but I have read many posts where people have said that their doctors ordered IVIG for PANDAS and insurance agreed to pay. I now United HC does include PANDAS in their policy, but it seems that most plans do not. There is not even an ICD-9 code for PANDAS - how can a doctor order something for a dx that doesn't exist?

Definitely apply for a grant from LymeAid 4 Kids - you can get up to $1,000 to help with diagnosis and treatment. It's not much, but will get you started. It would be great to know of someone on this forum that will benefit from the fund. 2 months ago my 12 yr old daughter who suffers from Lyme, Babesia and Bartonella hosted a fashion show and tea to benefit LymeAid 4 Kids. She raised enough money to benefit almost 3 families. All of our kids have struggles here - but they are changing the world in their own ways You can get more information by going to wwww.lymediseaseassociation.org

Christy, if you haven't done so already, I encourage you to cut and paste your original post onto the Lyme forum. Many people there are dealing with Lyme and PANDAS - one of them being me. My son, now age 14, has a similar history to your grandson. He went undiagnosed for many years, so that has made his treatment much longer and involved. But the good news for you and your grandson is that he is still young and you have gotten the diagnosis which is the first step. Next....take a deep breath knowing you are in the right place to get more information. The best thing you can do is educate yourself. Poke around the PANDAS and Lyme forums here. Something also to keep in mind is that PANDAS now falls under a broader diagnosis of PANS - Pediatric Acute-Onset Neuropsychiatric Syndromes. PANS can have different triggers, with strep being one of them (PANDAS). PANS can also be caused by Lyme and other tick-borne illnesses, Mycoplasma, etc. You can read the scientific paper on PANS written by Susan Swedo at www.pandasnetwork.org. Something that stood out to me in your last post was the fact that your grandson didn't seem to respond to vaccinations. This is possibly a sign of an immune deficiency and actually will help you get further treatment. Google "Primary Immune Deficiency" for more information Lastly, stay on your doctor to get the help you need. There are few docs paying attention to PANDAS and Lyme, and some are overwhelmed with patients. If you aren't getting what you need, find another doctor. The internet is your best resource! Best of luck to you. Your grandson is a lucky boy to have you fighting for him.

I had to walk away from the above-mentioned practice because I could not get the response I needed. I ultimately found an out-of-the way doc that has been very responsive. There are other docs out there beyond the "name-brand" ones.

LLMD started my DS14 on LDN early into Lyme and co-infection treatment. Started with liquid and worked up slowly (every 3 days increased .5 mg) to the max dose of 4.5 mg. I did not see any negative side effects. LDN is immune-boosting and immune-modulating, I believe. My son takes it at bedtime around 9:30 each night. I also take it and it the only effect I have felt is that I am sleeping better. I take it at bedtime as well. Dosage is indicated between 9pm and midnight. I also took the liquid at first (it tastes really bad) and worked up to the 4.5 mg dose. Now I take a capsule. It has to be compounded so we order from a compounding pharmacy and have it shipped. Hope this helps.

LLMD started my DS14 on LDN early into Lyme and co-infection treatment. Started with liquid and worked up slowly (every 3 days increased .5 mg) to the max dose of 4.5 mg. I did not see any negative side effects. LDN is immune-boosting and immune-modulating, I believe. My son takes it at bedtime around 9:30 each night. I also take it and it the only effect I have felt is that I am sleeping better. I take it at bedtime as well. Dosage is indicated between 9pm and midnight. I also took the liquid at first (it tastes really bad) and worked up to the 4.5 mg dose. Now I take a capsule. It has to be compounded so we order from a compounding pharmacy and have it shipped. Hope this helps.

After treating my DS14 for 5 months with IV Rocephin, LLMD is switching him to IV Invanz. Anyone have experience with this abx?

What test are they requiring?

Still looking for someone else to chime in here. To those of you who have gotten IVIG approved for your children, did you get it based on an Immune Deficiency dx? I cannot imagine that all of our children meet the requirements of immune deficiency, so I'm wondering how your doctor proved the dx? My son's CVID dx is valid, but insurance says it's not valid enough. They will not let go of the requirement of a vaccine challenge (failure to respond to a vaccine) to prove CVID. I even have a patient advocacy service helping with the appeals. It is literally killing me to read of other families getting this treatment for their kids and my DS14 sits here waiting for the insurance company to keep denying the treatment- he went undiganosed for at least 9 years and we have been told by a few of the popular PANDAS docs that this is the only thing that will stop the autoimmune issues. Is DS14 making progress on Lyme and co-infection treatment? Absolutely. But I can see that there is still alot of clean-up that needs to happen - plus his IGG levels are down to 600, so he's not fighting infection on his own (hence the CVID dx). Would love to hear from others. This is a lonely journey.

I really wish I could go - I'm only 60 miles away. But I can't get away - my kids have 8 infusions between them tomorrow. I sent a letter to our Congressman telling him our story - 2 kids with Lyme that went undiagnosed for many years. I sent photos of them hooked up to IV's. Sob story - I figure it can't hurt. I'm praying that others will be able to attend.

We don't see Dr. L. I did get a letter today from Dr. B stating that he should no longer have vaccines (the office was kind enough to write this for me even though he hasn't been a patient there for 18 months. we see someone at NIHA in D.C. I don't have any documentation (nor do any of our present or past docs)that says he has had a bad reaction to vaccines. We know he spiraled downward quickly following the FluMist, but this is the only one that sticks out in my mind as far as reactions go. And he hasn't had a vaccine since then - he had it 6 years ago. Thanks for brainstorming with me.

I am being tortured - literally - by having to appeal my insurance company for IVIG for CVID (yes, there's PANDAS too) for my DS14. His IgG level is low as is IgA - insurance wants to see at least 2 classes of antibodies low. They are denying (but case not closed yet) on the basis that they do not have documentation that he has failed a vaccination challenge(because he hasn't been challenged). Here's the catch - Dr. B. (who we no longer see) 18 months ago said that he should no longer receive vaccines because of autoimmune issues. Has anyone been successful in circumventing this requirement with their insurance? Our policy for IVIG and CVID dx is so very specific.

I think the location says it all....Bartonella rash often appears on the trunk. My daughter has stretch marks from rapid growth/weight gain, but they never were purplish/red like her Bart marks. Her Bartonella marks are on her lower back and lower sides (love handle area). She is in month 15 of Lyme and co-infect tx and the marks are fading.

I believe Dr. M has published on this. If I remember what she told me correctly - there is a high probablitiy of iPANDAS in siblings particularly in families where there is a history of chronic strep, rheumatic fever, or other autoimmune conditions. I think it increases more when the history is on the mothers side. (I remember the mother part particularly because thats our case and it helped justify my mommy guilt over this I think there was a discussion awhile back on this forum about this, but I would love to take a poll: Of those with PANDAS kids, how many moms have autoimmune issues themselves? I myself (DS14 with PANDAS) have had autoimmune symptoms for years - was even worked up for Lupus at one point. Never had a a formal autoimmune dx until last year when I was dx with Hashimoto's Thyroiditis. Would be interested to hear of other's experiences.

I read your thorough post and my personal opinion is that you MUST have your daughter evaluated for PANDAS. But keep in mind that the name has changed to PANS - Pediatric Acute Neuropsychiatric Syndrome. Many of us here disagree with the removal of the "A" representing "Autoimmune." PANS can have infectious triggers other than strep. Read Dr. Swedo's latest paper here: http://pandasnetwork.org/2012/02/the-white-paper-is-released/ There are many symptoms of PANS that people seem to commonly report with their children - your daughter seems to have the teenage version of them. It just looks slightly different in teenagers/adults. OCD is very apparent in your daughter with some of the behaviors you have described. I encourage you to find a doctor to look for all underlying infections - Mycoplasma, Lyme and Co-infections, Viruses, etc. I will PM you the name of a doc. Hopefully others will chime in.

My DS14 is currently on IV therapy for Lyme - he takes a pulsing protocol of Rocephin, Flagyl, VFend. He has had 3 nose bleeds in the last 24 hours - very rare for him. Should I be worried? He also has PANDAS, Babesia and Bartonella and takes oral meds and lots of supplements. Thanks in advance.

Some antibioitcs can supress white blood cell count, especially when used long-term. They are probably being extra cautious, but I'm sure you would like to know if this is their new plan rather than torturing your son for no reason right now.

Our LLMD says if you are bitten take 2 Tindamax right away. I just happen to have some in my huge arsenal of meds. Not sure if you could get your doc to prescribe, but thought might others might benefit from this info.