cynditk

Hi Michel, Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey: https://www.bluebird-botanicals.com/CONCENTRATED_CBD_Oils_2.php I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/ I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.

Steroid taper was also important or my son. We are hoping now we can handle exacerbations/flares with high CBD caps, we'll see, that's an experiment.

All I can say is, hang in there and keep trying stuff until you find what works for your body. We've been working with my son's multiple diagnosis- PANS, Late stage Lyme, immune deficiency, babesia- for 7 years now, and we just feel like we are starting to get a handle on it in the last 4 weeks, his symptoms are finally starting to improve a little bit so we feel like at this point he is not getting worse and he MAY be starting to improve. A few things I would recommend off the top of my head: make sure your methylation cycle is working correctly- your doc should know to screen you for methylation cycle defects. If this hasn't been done then you need to find someone who can help you with this. Methylation controls detox in the body. Cannabis has been extraordinarily helpful for controlling my son's discomfort as he works toward recovery. I don't think he would have made it if it weren't for the help he gets for his anxiety and pain from the cannabis. He takes both high CBD caps and vaporizes MMJ. We are in a state where MMJ is legal. I know that you can get high CBD tincture made out of hemp anywhere in the country. It can also be very helpful for pain and anxiety. Bluebird Botanicals is one source for this. IVIG takes a long time to work. My son is on it and it was months before we noticed a difference. And it was slow, and it was definitely not the only thing he needed. He has in the past 10 weeks started on IV therapy- IV antibiotics, IV chelation, and IV supplementation, and this seems like its important for him. We go to a functional medicine doc/naturopath for these treatments. Please, hang in there and KEEP SEARCHING, keep reading, keep trying everything that is recommended because you will find your way if you keep looking for answers. Its probably going to be more complicated than abx and IVIG, it certainly has been for us.

There are so many things you can do- but if the oral route is difficult, you could try an epsom salt/baking soda bath or foot bath.

DS19- immune deficient/PANS/Lyme late stage, is mostly housebound except for treatment days- 2 IV's a week and 1 therapist apt per week. Other than that he is online in his room. We are allowing him to do what he needs to do at this point to feel safe, conserve energy, and heal. He is very gradually improving.

Congrats, glad you found what worked for your family:) We tried homeopathy with Angelica Lemke, and my son did not make great strides, but he is also PANS/Lyme and vey far advanced. And 19YO, having been sick for 6 years before really treating. Now we are doing IV nutrients, IV abx, and IV chelation. We just started this approach so too soon to tell.

It totally depends on the person...my son is immune deficient so for him IVIG is a medication and not just a therapy for PANDAS. I agree that you are looking at a process of restoring the immune system and not a quick treatment.

Congrats! Glad to hear you are progressing with the iVIG!

do you want connections with other young adults? if so pm me, I have a 19 YO who is severe.

7 years of treatment. Here is some stuff I've learned: *Question and research everything your doctor tells you, understand the treatments inside and out. Just because they think it will work doesn't mean it will. *doctors love to sound authoritative and reassuring- but ultimately, you are responsible for your child's care. Not them, they get to go home at the end of the day. * Track all treatments, write down as much as you can of the day to day reactions to treatment, this will help you and doctors know if you are on the right track. *There is no one right treatment for everyone. Treatments must be customized for the individual. Different things work for different kids. * Be aggressive with treatment, and find a doctor who will as well. this is your child's life you are talking about. DO NOT let doctors minimize what your child is going through> Press for answers until you get them. *Learn about methylation and detox, genetics are really helpful in choosing the right treatments. * welcome to an alternate universe. get comfortable with living outside the box. *learn to not take anything personally. Friends and family will reject you, doctors will ignore you or let you down, you child will rage at you. Take none of it personally. * Kids with PANS and Lyme are at high risk for suicide. Take all suicidal talk very seriously. * Avoid the psych ward. * If they will tolerate it, Foot rubs, massage, and loving touch help ground the kids and feel that they are loved. These kids are incredibly isolated and need to know they are loved and cared about. Tell them the good things about them every day, touch them, reassure them. * Alka Seltzer Gold, baking soda and epsom salt foot baths or regular baths, charcoal, and ibuprofen can help with exacerbations. *medical marijuana, if its allowed where you are, can really help with anxiety and pain> It has absolutely saved my son's sanity. It does not interfere with his treatment, just allows him to tolerate the ups and downs. *have a regular outlet for your own stress. get counseling, exercise, whatever works. this is a long road and you have to keep your sanity too.

Hi Michel- Are you still on the mino? Are you on any antibiotics regularly? any anti-inflammatories regularly? If you can travel, don't know where you are, I have a good doc I can recommend who can help you as well as Dr.L, sometimes it takes more than one doc because they are all so busy. If you have one in person she can manage continuing care via phone/internet, she is very responsive and detail oriented. Please don't give up! I have a 19 YO with PANDAS and Lyme, and BTW if you are having pain and fatigue you most likely have Lyme because they aren't PANDAS symptoms. Treatment takes a long time and is very difficult. His pain was not helped by any of the regular pain medications so we finally started on medical marijuana which helps him mange the pain and anxiety as well, it has been the best thing we have done to help him mange symptoms while we go through treatment. He is severe, late stage lyme and PANS, and he was starting to get suicidal as well. Like everyone else said you definitely need face to face help if you are suicidal, not the boards. Also please tell your parents when you get that way!!! My son is on IVIG, a boatload of anti-inflammatories, daily antibiotics, IV antibiotics, and IV's to support detoxification. He is treading water at this point but is not getting worse, and we finally feel like with the MMJ we are able to help him manage symptoms. PANDAS and Lyme together are a really difficult combination, and you most likely won't get better on PANDAS treatment alone. I'm sure he would be happy to talk with you, he is housebound and is just getting through the days as well. He is always looking for people to connect with who get it.

yes, definitely. My son has PANS and Lyme and a ton of emotional lability. We have had best success with low dose citalopram- 5mg- and he also uses medical cannabis. The cannabis helps with his severe pain, which helps him be more functional and therefore less depressed. It does also seem to help improve his mood in general. He is 19 and we are in a state where MMJ is legal for patients.

Thank you! Who are you seeing to manage your care? And, how have you managed the PANDAS in concert with the Lyme? How do you keep it in remission while treating the Lyme?

Hi everyone, I want to know if anyone has had experience dealing with all 3 of these together. My son was dx PIDD when he was 12, dx with PANDAS at 16, and dx with Lyme at 16. His PIDD has progressed from subclass deficiency to more of an IgG deficiency/ borderline CVID. I have read recently that its important for people to have an intact immune system to be able to fight the infections-that the IVIG and abx assist the immune system, but if the immune system is not functioning well, its very difficult if not impossible to recover. Anyone else in this situation? At this point my son is getting IVIG replacement for his PIDD, and abx to treat PANDAS. We have not yet treated Lyme. Thanks for any feedback!

Hi all, After seeing Dr.B and having his first high dose IVIG, he prescribed two new antibiotics for my son- Augmentin XR 2000mg daily, and Doxycycline 2x a day for suspected Lyme. Previous to this my son had been on Azithromyacin 1000 mg daily and Clindamyacin on and off when he tested positive for strep.He has also been on prednisone on and off since last April, mostly on because he was non-functional off it. He had three days of being back to his normal self after IVIG and before we started the new antibiotics. Then he started to go down hill, so we started on the new abx. The first three days of the new abx we great as well- he was doing awesome. Then he began to have severe symptoms, which were similar to his initial presentation of PANDAS last April- he could not sleep at night at all, he has waves of fear and anxiety with nothing causing them, his OCD has flared greatly, he says he now can't think clearly at all-he can't even finish a thought, and now his body jerks and spasms much worse than it ever has before-the jerks don't seem like tics, they're like big waves of energy that move through parts of his body, and he just shakes that body part, but I watched him sleep and he has them in his sleep too. He also has instances of being really angry and rageful. I talked to his ped who knows PANDAS, she said try large doses of Lorazepam to help him sleep. So we've been trying that since last night, and it does seem to help him sleep, although it doesn't take any of the other stuff away. I called Dr.B's office today, haven't heard back yet. He said that since Lucas had been on steroids so much, that treating Lyme would be a lot harder and maybe this is the herxing that everyone talks about when treating Lyme? Any PANDAS/PANS people see a worsening of symptoms after hd IVIG and new antibiotics? How do you get through this? Anything help? Also, he is still on steroids, Dr.B didn't want to take him off until he was stable on the new abx. As far as his Lyme dianosis, in 2008 when he first got sick he was positive for 1 Lyme specific band, and indeterminite for 3 others on the IGM part. At that time he was not tested for any co-infections. Now he is negative for everything, according to testing at Dr.B's. Positive on IgG for Myco, negative IgM. His viral titers for EBV and other herpes viruses have been very high IgG in the past also, never IgM though. * + * -

Hi all, After seeing Dr.B and having his first high dose IVIG, he prescribed two new antibiotics for my son- Augmentin XR 2000mg daily, and Doxycycline 2x a day for suspected Lyme. Previous to this my son had been on Azithromyacin 1000 mg daily and Clindamyacin on and off when he tested positive for strep.He has also been on prednisone on and off since last April, mostly on because he was non-functional off it. He had three days of being back to his normal self after IVIG and before we started the new antibiotics. Then he started to go down hill, so we started on the new abx. The first three days of the new abx we great as well- he was doing awesome. Then he began to have severe symptoms, which were similar to his initial presentation of PANDAS last April- he could not sleep at night at all, he has waves of fear and anxiety with nothing causing them, his OCD has flared greatly, he says he now can't think clearly at all-he can't even finish a thought, and now his body jerks and spasms much worse than it ever has before-the jerks don't seem like tics, they're like big waves of energy that move through parts of his body, and he just shakes that body part, but I watched him sleep and he has them in his sleep too. He also has instances of being really angry and rageful. I talked to his ped who knows PANDAS, she said try large doses of Lorazepam to help him sleep. So we've been trying that since last night, and it does seem to help him sleep, although it doesn't take any of the other stuff away. I called Dr.B's office today, haven't heard back yet. He said that since Lucas had been on steroids so much, that treating Lyme would be a lot harder and maybe this is the herxing that everyone talks about when treating Lyme? Any PANDAS/PANS people see a worsening of symptoms after hd IVIG and new antibiotics? How do you get through this? Anything help?

What can a Rheumatologist add to your team? And how do you find one who will be sympathetic to PANDAS?

If glutamate seems to be a significant piece of your puzzle there are many supplements you can try, like GABA, L-theanine, and some others. also you might consider consulting a homeopath. We do it all- long term antibiotics, supplements, homeopathy, therapy, and now considering IVIG. we haven't yet done SSRI's but would if we needed to. We will start working on lowering glutamate and supporting methylation pathways soon as well. I think a comprehensive approach is the best way to go to give these kids the best shot. I don't think there is any one right answer or protocol- they are very complex cases. Some folks have success with only one approach or two, but I think in our case we need many different approaches. We try everything that's out there and keep what works. Most docs think they have the answer, that their magic bullet is the right one, and from our experience its just not true-they may have a piece of the puzzle, but its the parents job to put all the pieces together for their child's situation-and they're all different- as best as they can.

I have many of your same questions, though I haven't been at this as long, but before I was here I did DAN and Yasko protocol for years for neurodevelopmental issues. I am wondering how methylation defects fit into all of this from my DAN/yasko background, and since a new doctor just brought that up. My son crashed when we tried transitioning off the Yasko/DAN treatments and has never really recovered (several years ago) I am wondering at this point what happens if we try re-integrating what we are doing now (antibiotics, IVIG) with the old DAN/Yasko stuff. My son is more PITAND and suffers from chronic infections, immune deficiency, and neurodevelopmental issues. we are considering hd IVIG and are having some success with homeopathy as well. I think the energetic aspect of illness is important and that homeopathy really does have a place in our kids recovery. Re: chronic PANDAS, I just had a LLMD tell me exactly that my son's immune system has been seriously damaged from chronic infections and that hd IVIG is his only hope. So I would be curious what researchers think about this question vs. clinicians. I'm also wondering why you don't pursue more hd IVIG- financial reasons? Or fear of being dependent on it for improvement? As far as antibiotics, if suspecting Lyme/Myco why not try both Augmentin and Doxy?

In my understanding Myco can cause similar symptoms to PANDAS. My son sounds similar to yours in that he has more anxiety rather than tics/OCD-he has some mild OCD but anxiety is his main issue, and we thought is was PANDAS because he had overnight presentation of severe anxiety/personality change/ psychotic issues. Zith and pred gave him remission from the anxiety and psych stuff within a few days, and every time we have tried to go off the symptoms come right back. So in my son's case it may very well be Myco and/or lyme, because Zith treats these. My son is also IgG subclass defiecient and has been on low dose IVIG for several years, and it has helped him with OTHER issues, but he had this latest flare while on IVIG. So my thoughts are stay on the zithro, maybe even increase it. It's probably Myco or lyme. constitutional homeopathy does seem to be helping my son with emotional stability and decreasing the anxiety as well.

yep, i second everything you said. I actually was kind of hoping the LLMD, who was trained by Dr.Jones, would tell me there was Lyme and we should go after it, because clearly he doesn't fall neatly into the PANDAS box. A lot of the (physical)symptoms I've described go along with immune deficiency that's not being adequately treated- I hear about a lot of these types of symptoms on the immune deficiency boards, and the LLMD's response to that when I told her that was that all those kids probably have Lyme. She said sometimes the tests don't come back positive until a year into treatment. I just can't believe we've been treating with Zith for 5 months now and he still has an ACUTE strep infection. Clearly his immune system is not able to kick it on its own. As far as the pred, whenever we tried to lower it, and we tried several times, the neuropsych stuff came roaring back- but maybe like you suggest, that's not PANDAS but something else. Although too maybe it's more of a teenaged presentation- my son is 16 and most kids are a lot younger when they present. Anyway this doesn't feel like an easy fix either- we've been at this for so long that it is very hard for me to believe that it could be as easy as she made it sound.

Thanks so much for this feedback...this is what my gut is telling me! Also we just saw an LLMD last week, and after looking at Lucas' labs she basically told us that Dr.B was our only hope, that in her opinion, my son had Lyme- none of his Lyme/co-infection labs came back positive because the infections were too imbedded, his immune system had been wrecked, antibiotics would not be nearly enough. She sent us away by saying that dr.b was our only hope. That was last week, and this week we get this extremely confident doc saying she can treat my son and not to worry, she knows what to do. WHEW! Talk about from one extreme to the other...my head is still spinning!!! This would be our first appointment with dr.B, and it feels right to have a back up specialist on board.

So my world just got turned upside down-hopefully that's a good thing - I really need some feedback in helping me understand what happened yesterday at a new doctor visit. My 16 YO son developed what appeared to be PANDAS back in April. Sudden onset of neuro-psych symptoms after a strep infection- high ASO titers, Anti-Streptolysin titer. treated him with high dose zithromx and pred which took away his neuro psych symptoms almost immediately, although whenever we backed down on either of these interventions the symptoms would come right back. He had many other physical symptoms that were unexplained by PANDAS that got bad around this time: joint pain, heart issues including extremely low blood pressure/palpitations that were brought on by exposure to heat, severe headaches, severe fatigue, and a crazy rash that no one seemed to be able to explain. The rash has been seen by like 10 doctors. Bright red face like a sunburn, fevers that come and go, and sore throat that comes and goes. Negative for throat swab and culture. I thought a lot of these physical symptoms were due to the prednisone, because we couldn't find any other explanation for them. Previous to this he had a difficult long history- neurodevelopmental issues that started after DPT and then MMR vaccination, hyperactivity, severe food allergies, chronic constipation, chronic ear infections, sensory processing disorder, mild OCD, learning delays. To deal with all this we used supplements/Yasko protocol, DAN protocol. When he was 12 we went off Yasko protocol quickly on the advice of a homeopath and started sequential homeopathy- he crashed and didn't recover for almost a year. developed severe unrelenting fatigue, cognitive decline, other miscellaneous symtoms. testing at this time revealed highly elevated ASO and antidnase b titers, although no PANDAS symptoms, and low IgG subclasses. An immunologist diagnosed with subclass deficiency and treated with low doses of IVIG. On IVIG- For 3 years did well- recovered about 60% of his functionality, though still suffered from fatigue, joint pains, learning delays, SPD, low grade fevers that would come and go, constipation, food sensitivities. Fast forward to yesterday- met with a PANDAS specialist doc, the first we have seen. Dr.Keller in Redmod, WA. She swabbed him both orally and anally-oral was negative, anal was positive. She said the zithromax and IM bicillin we treated him with had not treated the acute infection, that he had been battling the same strep infection since April. She thought that he had been dealing with it on and off throughout his life, and that the thing that happened when he was 12 was a PANDAS episode, and that it has gotten progressively worse until this latest round with the neuropsych symptoms. She felt the IVIG had helped him cope, but did not solve the problem. She feels that methylation defects are responsible for a lot of the PANDAS she is seeing, and she has seen a lot and she says successfully resolved with treating the infections and then the methylation cycle defects due to genetic mutations, and that for patients with defects in their methylation cycles that they could heal their PANDAS by first dealing with the strep infections with antibiotics, then prophylactic antibiotics to prevent re-infection, and then treating these defects- which makes some sense to me because my son did great on the YASKO protocol, and that is at the heart of it. for kids without the methylation cycle defects antibiotics and high dose IVIG can address it. I hope I'm getting this right, I don't totally understand it yet. She wants Lucas on clindomyacin for 10 days to treat the acute strep, and then retest to see if he's negative at that point. In the meantime, off the zithro, and she thinks we can more aggressively get him off the prednisone he's been on for 4 months now that we were slowly tapering. She says that the pred has been treating the inflammation of the PANDAS, but once we treat the acute infection hopefully he can off the pred quickly. She says the rash is a strep rash and that he may have rheumatic fever, wants him to get an ECHO to rule out. She doesn't think IVIG is treating his PANDAS. We have never been on high dose IVIG, just low dose for his IgG subclass deficiency. IVIG does help him a lot. She thinks once we treat the acute infection he can go onto supps that support his methylation cycle, and eventually that will prevent him from having any more PANDA flares. Here's a question- we have an appointment to see Dr.Bouboulis in 2 weeks, she thinks we don't need to go. Its a long trip for us as we are in Seattle, and due to Lucas being so sick it would be a very hard trip on him. Should we go just to keep that door open, or should we try what she says and drop the high dose IVIG route for now? My son has been mostly housebound since April so he is severely affected, and I am loathe to give up this option, but my husband is very excited by the new doc's assurances that we don't need to go and can save our money. Thoughts/advice/ feedback???