momaine

Thanks for your well thought out and lengthy response. I'm exhausted for you just reading it. I'm also a little overwhelmed at the idea of coming up against such brick wall. (even though it turned out ok in the end) I did talk to Dr. B about Plasmapherisis and he really didn't think we were at a time and place where we need to consider it yet. He said it's more invasive than IVIG and it cannot be done as a stand alone, but needs to be followed up with IVIG to replace the good antibodies. Not sure what the heck we are going to now. Have an apt. with our family physician on Tuesday. She's been helpful in the past. I'll see what she can offer.

I realize you said you stopped the Doxy, but I just wanted to tell you what I learned. I was in Dr. J's office on Wednesday, talking about my dd, and as I was talking to him, I didn't even realize I was scratching. He noticed and said it was from Doxy (makes you photosensitive, I believe) He told me to call my lyme dr. and get taken off Doxy and on something else like Minocycline because it would only get worse. Not sure how long it takes to reverse once you stop the Doxy though. Minocycline can also be photosensitizing, but he said its rare, maybe 1 in 100 people.

I am so frustrated. Here is our situation. Dd diagnosed with OCD 4.5 years ago. Did ERP and eventually added Zoloft through family doctor, later switched to Celexa during exacerbation. Dd diagnosed with PANDAS a year and a half ago. Antibiotics (which helped at first then not as much) then eventually hdIVIG. Great improvement (70-80%)in first two ivig's. Successfully reduced Celexa from 40mg to 20mg 7 months ago. Next few IVIG's not so obvious benefits. (throw in a couple sinus infections for good measure) Lyme/Bartonllla diagnosis end of January. First month, much better, next two months worsening of symptoms due to toxicity from die off. (still fluctuates with Tindamax) Not doing so well with the OCD. Lyme Dr. wants a psychiatrist on board for psych meds and suggested we look into plasmapherisis to clean her blood of all the toxins. I have a newish friend who is a psychiatrist and I asked her opinion. (ask and you shall recieve) I have explained that she has lab evidence of anti-neuronal antibodies as well as other labs that show an autoimmune process going on, etc. I asked if she would take her on as a patient, thinking it would be easier than re-explaining the whole situation again to another psychiatrist. I told her of the suggestion to pursue Plasmapherisis and she wrote back telling me I should contact the NIMH to get there opinion if I were considering yet another invasive medical proceedure. Clearly, she agrees with the NIMH, which says that it has not been shown that antibiotics or IVIG or Plasmapherisis help PANDAS. (which didn't exist to them till a few months ago) So, long story short, my question is this, Has anyone worked successfully with a psychiatrist who believes in the medical aspects of PANDAS/LYME initiated OCD? Is this a hopeless task? We see our family physician on Tuesday who prescribed the Celexa and I want to talk to her about it first and see if she can't help us. I'm a little worried about that apt. because when I was looking into a lyme diagnosis for myself, I called the office and left multiple messages asking if she would order Igenex testing on me (after dd's lyme diagnosis) and she never returned my calls so I don't know what she is thinking wrt Lyme. What is your experience? BTW, I know ssri's sometimes are activating in PANDAS/Lyme kids but in the past they have helped my dd. The psychiatyrist friend mentioned adding in something to boost the ssri if it didn't work on its own.

The length of duration of antibiotics will really depend on how your child does post ivig and then after eventually going off antibiotics. For the next week following IVIG, really push the fluids into your son so that he doesn't get the headache that can result from IVIG. My dd has had 5 HDIVIG (#6 tomorrow and the next day)and the times she has the migraines is when we stopped being dilligent about how much she drank. We'd be careful for a few days then forget and she'd get a horrible headache on day 5 or 6 post ivig. Good luck.

Healing thoughts and prayers coming your way. I hope you are on the right path.

So sorry! Thoughts and prayers headed your way. My heart breaks for you.

I'm so happy when I read that someone has been pushed to test for lyme and finally finds out what is wrong. I hope to get my older dd tested, but she's in denial and my hands are so full I can't imagine physically dragging her at this point. We also had a Herxy Easter. Dd was struggling so badly that we stopped antibiotics for a day and a half. (which helped but Dr. J said don't make a habit of it.) I feel like she just can't detox fast enough. We do 10 charcoal, glutathione, Inositol, Alka Seltzer Gold, Epsom salt showers, etc. Dr. J suggested we get a psychiatrist on board. She is on 20 mg Celexa and we just raised it to 40 hoping to get some relief. Maybe it'll help. Thinking about the psychiatist, but really hoping that she turns a corner soon. Dr. J said she must have a high spirochetal load. I also had a shitty herx on Easter(restarted Augmentin that day) I had a fever and was so cold and could not get warm. My body just started crying and shivering....its not like I wanted to cry, but I think it helped me to warm up. It was weird. That has happened twice. I just started bawling and couldn't stop and I was so cold. Heading to CT Tuesday to see Dr. J and Wed. Thurs. to do IVIG with DR. B. Lots of questions this time. Hoping for a miracle.

I wonder if Pepto would help. It might negate some of the benefits of the medicine but I'm not sure that would be a big deal for one dose. Feel better soon!

My dd has similar issues with sinus infections. SHe doesn't seem sick when she has them. Only she knows when she has one and she can tell because the phlegm that had always been in her throat thickens. BUT, my dd has now been on lyme treatment for 11 weeks and the one thing that has resolved (well, almost) is that she no longer has a sinus drainage issues. She has finally, after a year of not being able to, gotten off daily musinex and sinus rinses. She does have to use it if she gets a cold now, but not regularly. I think the Lyme can cause sinus issues that have mostly resolved. Hang in there. Dr. J has told me that a short course of steroids is okay. He also said that the kids (like mine) that are taking a long time to see positive changes probably have a high spirochetal load. My dd struggles with herxing daily. Trying hard to get enough detox into her. It's a tough situation.

Best of luck Michael. Your story gives me such hope.

Just agreeing with Susan and SFMom. Find an LLMD that uses the Ilads.org guidelines and get an apt. as soon as possible. You can got to www.ilads.org and find a Lyme Literate Physician. Good luck! If it is Lyme, the sooner you get treatment, the more likely you are to get well.

So far its the cloudiness in my head that is the worst on a higher dose of Doxy. Will keep you guys updated. Heels are already feeling better and I'm not sleeping like the dead anymore. Waking with a normal amount of sleep and not feeling like I need to go back to sleep, just a heavy cloudy head.

Well, I finally had my apt. with an LLMD today. Just as I thought, she is treating me for Lyme and Bartonella. She was very thorough and kind. She had a lot of knowledge about supplements. She believes, based on my trial with Augmentin, that I should feel better pretty quickly. She upped my Doxy dose to 200mg twice per day and in about 5 days, as long as the herx isn't too bad, I'll add in Augmentin 875 twice per day. About a month later, she'll add Flagyl as a cyst buster. I cannot wait to feel better. If you have any questions, please ask. Met a kind mom in the waiting room whose son has PANDAS and LYME as well. We are planning to chat soon. P.S. That is Dr. H in Newton, MA. I forgot to say which state.

Wow, great video. I'm going to post it on Facebook. Is that number really accurate? That 20% of people diagnosed with late stage Lyme never get well? Does that also apply to children, I wonder? That is very bad news. The only thing that makes me think my dd can get to 100% is that at times in her treatment, I've seen glimpses of that girl I used to know. Whether for a few hours or a day...and it makes me KNOW she can get well. The girl with the profound memory loss is where I think I was headed before starting treatment. My memory has just gotten worse and worse, esp. escalating over the last few months. I'm 2.5 weeks into Doxy and I'm happy to say it's already much better. (worse at first) I was really starting to worry there.

Naturopathic Dr.

Dr j prescribed my dd Minocin for Bartonella, BUT, she was already on Augmentin and Zith and he added that in. ALSO, when only diagnosed with PANDAS, whenever she tried to go off Augmentin, she would have a huge relapse in OCD, so I know its connected. I'll go to a LLMD for me tomorrow. can't wait.

That is why a good LLMD is needed, to help sort it out. It's pretty complicated. I do believe that Doxy treats both B.b and Bartonella though. I have read that Bartonella responds quickly to antibiotics and quickly worsens once they are stopped if it isn't eradicated.

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=313 A lot of the symptoms over lap but if you scroll down on this page, you can see the symptoms listed out.

Bartonella is typically the bacteria that causes neuropsych symptoms. I know heel pain is also associated with Bartonella. And I've also read that Bartonella is more difficult to eradicate. Erhilrichia is easier. Not sure about the others. I'll look around and see if I can't find a list somewhere.

SF MOM, Thanks for pointing this out. I have read this too. (I tested negative for Bartonella but then again so did my dd and Dr. J still thinks she has it) One of our dr.'s said LD can also cause foot pain but everything I've read about foot pain seems to be connected to Bartonella. I am seeing an LLMD on Wednesday. I am pretty sure that Doxy treats both Lyme and Bartonella but we'll see what the LLMD thinks. Right now I'm on 100mg of Doxy that will likely be raised to 200mg BID starting tomorrow when the dr. is back in his office. I took 3 days worth of Augmentin (on my own) on top of the Doxy and the first day I HURT everywhere. Every joint and most muscles hurt by the end of the first 24 hours. The two days, however, I was able to walk down my stairs in the morning putting one foot in front of the other instead of hanging on both wall and railing and babystepping down the steps like I've had to do for over a year and a half. I was exstatic! But I have also been more exhausted than usual.

My dd's liver enzymes were also slightly abnormal this last time. We decided to try having her go off Fluconazole and see if she could manage it. So far, she's been off it a week and is doing okay. I've upped the probiotics hoping to prevent yeast. I've also started giving her Inositol becasue it's liver detoxifying. Not sure if that should help or not but I'm hoping it will at least help with detox. I just read that CoQ10 can possibly raise liver enzymes, but we just started giving that, so its not the culprit. My dd also tested positive for Lupus at her visit with Dr. J. We need to do more testing at her next visit to rule it in or rule it out. I believe I've read that Lupus can also cause Liver enzymes to be elevated.

We're treating Bartonella in my dd too and she really herxes from the Tindamax. (worse ocd and anger/frustration) The worst two days for her are the two days following the two days that she takes it. She's been being treated for 10 weeks and the first four showed improvement but the last six have been very difficult. Hangning in there hoping we see positive changes soon. Doing lots of detox which has helped a little too.

We travel to CT for both PANDAS doc and LYME doc. But thankfully, we've managed to line up appointments now so we can hit both offices in one trip. Ilads.org can help you see if there is a LLMD closer to you. Doesn't Dr. Ann C practice in Pennsylvania? That would be very cool.

I'm sorry I can't keep track of who is who on this forum. I'm beginning to think its from Lyme brain and might get better though. But I wanted to ask. Is the the first time you've gone to daily Zith while also on other antibiotics for Lyme? If so, it could be a herx. Plus, lyme cycles and the most die off happens when its in its reproductive state, I think. Could it be a cycle of a worsening herx? Have you noticed a pattern of sorts? My dd is still stuggling ten weeks into lyme treatment. I keep hoping she'll come out the other side of this, but as the weeks drag on, its hard to keep thinking positive. I can't wait for our next visit with Dr. J. If for no other reason than to hear him say that she WILL get well.

OMG, doctors never fail to shock me. THe evidence is right in front of him/her and yet they choose to ignore it. This WILL get better, but you need a LLMD on board as soon as possible. You have made the right decision. At this point, I'd probably be trying to buy drugs on-line from another country or asking relatives for old prescriptions they didn't finish. I'm never one to sit back and wait. Best of luck to you! Hang in there.