mdmom

Go over to the Lyme forum and read under "Helpful Threads" SF Mom's list of Lyme and co-infections symptoms. Breathlessness after minimal exertion is a Lyme symptom Air Hunger, gasping is a Babesia symptom

Evergreen, I am right where you are and have been. My son is 15 and was just diagnosed not quite 2 years ago with PANDAS, then Lyme and co-infections 15 months ago. Lyme treatment has done wonders for him, but it's clear the autoimmune process is relenting and he tells me that he spends 60-70% of his mental activity on OCD thoughts and behaviors. He's exhausted from dealing with OCD for so long. Now he has clinical symptoms and labs of CVID. We are trying to get insurance to pay for IVIG. But then I keep reading that Plasma Exchange is the treatment of choice, followed by IVIG. It confuses me as well.....and I think it will be years before there is a standard practice of care for PANDAS/PANS. If we do get IVIG, it would be administered at home, as my son is already getting home health services because he is on IV antiobiotics (has a central line). If you would like the name of my doc in D.C. (we live North of Baltimore), let me know. our doc orders everything to be done at home. I feel your pain.....

I will send you an e-mail. When speaking of specific doctors, it has been the practice of this forum to do this through private messaging. Check the right top corner of your screen - you should see you have a message waiting.

My son went through this OCD phase as well. He would say thank you until someone would say "you're welcome". He would become quite distressed if he didn't get a response. We would often get compliments on his good manners too, but I always felt that it was a compulsion to act so mannerly - it was hard for me to see it just as extreme politeness. Your post confirms my feelings! He also would compulsively apologize and needed someone to say "it's OK" or "I forgive you."

Wondering the same about USF. I did an intake phone call last Friday and am waiting for a call back. I'm keeping my fingers crossed that it will be a good fit for my DS15. Anyone have a teenager that went through the intensive 3 week program? Would love feedback.

My two cents.... See if you can purchase tuition insurance. This really came in handy when my non-PANS (she's got Lyme) daughter could no longer go to school this year because of her illnesses. Just check policy to see if treating for medical illness before policy goes into effect is an exclusion.

On Saturday, July 28, I removed a tick from my daughter. I double-bagged it in ziplocs because I thought I might have it tested. It is still alive. No wonder so many people get Lyme....the buggers are indestructible.

I have always wondered about this. Both of my children pre-diagnosis for Lyme had weekly OT sessions for hypotonia. My daughter was (I wish I could say "is") an avid swimmer - intense practice 4x/week and still has no muscle tone. My son does not exercise much, but he is far into puberty and most boys form some muscle mass naturally at this stage. He has hardly any muscle tone - he is skin and bones. I know Lyme has so many neurological effects - is this one of them?

Thanks for replies everyone. My son is 15, so I'm not sure where that puts him - child or adult. We will see LLMD in 2 weeks, so I'll be curious of doc's opinion.

I know you said your son tested negative for co-infections, but I wanted to mention that Babesia and Rickettsia-types suppress WBC counts. My son's WBC hovers around 2.5 and has been for 1 year. We have been treating for Babesia based on clinical factors only.

Nystatin with ABX is OK. I think the rule is space antibiotics and antifungals at least 2 hours apart from probiotics. We do probiotics at lunch, and abx and antifungals at breakfast, dinner, bedtime. Some suggest probiotics at night, so they can sit in the gut alone and work their magic. We just happen to take abx/antifungals at bedtime in case of stomach upset (our docs recommendation).

I don't know much about IGG levels and how long they stay elevated, but if I'm understanding my doctor correctly, an elevated IGG could suggest an infection that's been around awhile and is not clearing. You would want a certain level of IGG around - it would provide immunity, but too high is not good. Just my understanding, but I haven't asked a lot of questions about it. Is your doc recommending an anti-viral?

I posted this another another topic today, so forgive me if you are reading it again. Our LLMD found high IGG parvovirus in my son - he said that he often finds high viral loads in PANS kids. My son started taking Valtrex (acyclovir) BID last fall. Just days after starting it, he showed improvement in behavior, mood, energy level. We call it the magical blue pill. Glad Dr. T. was a good resource - I talked to him last week and I am always impressed by his knowledge and willingness to help.

I know some docs use it, some don't. My son started with a CD57 of 13 last April 2011. His level just came back at 9. Anyone seen such a low CD57?

My son's parvovirus level was 4.3 IGG. Doc said it should be much lower. I guess this suggests an ongoing infection. He has been taking Valtrex (valcyclovir) since last fall and it has made a huge difference in him. We all call it the magical blue pill because his behavior/mood improved not long after starting it. Lots of parents on the forum report that their kids have high viral loads.

My daughter's first diagnosis (before we found Lyme) was hypothyoridism at age 8. She originally started on Synthroid, which is most commonly prescribed. But for the last 2 years she has taken Armour Thyroid, which she feels better on. Armour is "natural," as it is made from dessicated porcine (pig) thyroid hormones. Keep in mind that the newest endocrinology guidelines for TSH levels are .25 - 2.50, although most labs haven't updated their systems yet. Our Lyme doc says that Lyme often attacks the thyroid and his patients feel best when their TSH levels are below 2. I am being treated for Hypo as well and Armour has changed my life - I no longer have to take afternoon naps!

My whole family takes Nystatin 500000 4 tabs/daily. We take it at night so if there's stomach upset we sleep through it. Your son might have an adjustment period with it. Try backing off the dose and work up to the max dose slowly.

This is not an article you would want to use to educate a doctor. The word "controversy" was used way too much.

It's not okay to give probiotics with antifungals. Most probiotics contain beneficial bacteria and fungus, so you would be killing off the good fungus. Saccharomyces Boulardi is the one probiotic you can take with an antibiotic since it is a beneficial yeast (fungus), but obviously you would want to avoid an antifungal with this one.

Which lab did the test? Only LabCorp and one another lab (cannot remember the name but someone on here will) do the test correctly. You should have a value on the that reads "Abs. CD8-CD57+ Lymphs" . This is the number you are looking for. The acceptable range is 60-360, although a lot of Lyme docs say it shouldn't be below 100. We erroneously had it done through Quest and they don't list the results the way a Lyme doc wants them to read.

Thanks for everyone's input. I'm officially steering clear of this doc. I just found out he's a member of IDSA - and we are dealing with Lyme.

I contacted Dr. B's office last week(he told me the same about vaccines in 2011). They gave me a generic vaccine exemption letter that the insurance company didn't accept. I need a specific letter from Dr. B. and can't figure out how to get this other than scheduling a $500 phone consult. But having a letter from an immunologist is key, I believe.

He is from the dreaded Johns Hopkins team. Pediatric Immunologist. I was given his name from an immune deficiency foundation which has tried to find me help in advocating to my insurance company for IVIG for CVID without a vaccination challenge. I would only need this doc to consult with, not treat. But if he is a nay-sayer for PANDAS/PANS and/or Lyme, there's no point in making contact.

Please keep in mind that PANDAS is now a sub-diagnosis of PANS - Pediatric Acute-Onset Neuropsychiatric Sydromes. PANS can have one or more infectious/environmental triggers. Your daughter has an awful lot of physical symptoms, which makes me think there is something in addition to strep causing PANDAS. Just to further complicate your life, I'm going to suggest you see a Lyme Literate doc to rule out Lyme and co-infections. My son's psychiatric symptoms were so intense that we overlooked his physical symptoms. Your current doc could be part of a team of docs helping. LLMDs are very good at finding infections no one else thinks to look for, not just Lyme. When we started treating Lyme and co-infections and strep (LLMD also found high viral load), mhy son's PANS symptoms started abating. I can still see lingering PANS symptoms, mainly in the form of OCD but for us it has worked to the get infection load under control before directly addressing the autoimmune issues. Hope this helps.

It wasn't embedded, but she scratched her back and it fell off. No way to tell how long it had been on her. I saved the little bugger - it's been in a double bagged ziploc for 36 hours and is still alive. She's already being treated for Lyme, Babesia, Bartonella. After the tick incident I gave her 2 Tindamax immediately and yesterday 300 mg of Minocycline (doc said to give 300mg of doxy, but I didn't have any in my arsenal). She already takes IV Clindamycin and Meropenem daily. If I send it to IGENEX (costly at $65 per infection), does this knowledge help me in any way? For instance, would an insurance company recognize the tick test as proof of an infection. I'm guessing not.