tpotter

I am just curious if you have tried doing supplementation/homeopathy, ART, etc? The reason I am asking is that I feel like these are the things that have helped my children "turn the corner" if you will. They are not cured by any means, but I do feel like (and so do they) that things have gotten better. Also, diet is a huge thing (one that my children...17 and 20...know they should be doing, but aren't willing to at this time (like an anti-inflammatory diet, such as no gluten, dairy, yeast or sugar.) IVIG and PEX certainly helped...A LOT! But, then they basically got "stuck" until we added in the alternative things. We no longer do IVIG, because insurance stopped paying for it, but I also feel like it wasn't needed anymore once we added in the other things. Interestingly, we just did a viral panel...one that we have done before, and many of my children's and my IgG titers, which were extremely high in the past (and going up), have actually gone back to normal! We are still dealing with HHV-6 (DS20), Parvo (looks like I've been re-infected), and coxsackie (DS-17 and me), but other than those, the rest went back to normal. I asked our holistic chiropractor today if she had any idea what would have helped to make the viruses go down like they did, since we only started targeting viruses within the past 2 weeks, and she said that dealing with the immune system would have helped. Makes sense to me. To deal with the immune system, we are doing ART (my 17 yo, and getting ready to start with the 20 yo), plus regular holistic chiropractics, and some additional supplementation. I have been having good luck with supplementation and acupuncture. I don't know if you can afford these, but it's certainly something to consider. At any rate, I truly believe that the immune system has to be supported, as does the gut (we are using a lot of probiotics.)

My opinion...go for it if they approve you. I had the exact same issue come up about 3 years ago...we had just found out that we were dealing with lyme and co-infections when 1 year worth of fighting insurance company resulted in approval. OK...I knew I had to get the infections dealt with, but I didn't know if I wanted to turn down IVIG at that point. Fast forward. I agree that IVIG and PEX can help reset and calm things down tremendously. That being said, unless you find out what all the infections are (and I truly no longer believe there is just one infection or trigger for it to become PANS), the problems will not completely go away. So, if it was me...I would definitely participate in the study, AND I would also find a good LLMD and immunologist to look into what other infections, environmental and/or metabolic disorders exist. LLMD's typically look at more than just lyme and co-infections. Ours, for instance, treats also for mold, which we found out we had been exposed to, heavy metals, etc, because they affect the lyme. Also LLMD's can look past the inaccurate test that may or may not exist. If I could do it all over again with what I know now...I would do it all...and that also goes for dealing with the immune system. PM me, and I can give you more information about all that. For the record, we have done PEX and IVIG, abx, vitamins, homeopathy, acupuncture, ART, and chiropractics. For us...it was all needed.

Seconded! And, I would also highly recommend that you test for Lyme and co-infections. Many people on this forum have found that they and their children have it, and wasted a lot of time not treating it. The smartest idea is to do the Labcorp or Quest WB (NOT THE ELISA), and if it comes back CDC positive, then definitely get an LLMD on board. But, even if it comes back negative, that may just mean you are not making antibodies. It is not the most accurate of tests, but if positive, then you are positive. If negative, go see the LLMD anyway, and make certain you are not dealing with both. Just my personal opinion. Good luck.

Yes. Dr. Cunningham said that it could. BTW...anyone know how release of the Cunningham test is coming along?

I received this from Beth Maloney today, and thought it important enough to forward on: It’s been a beautiful, soft, snowy day here in Maine, and my house is resting in the middle of a winter wonderland. But it is with a heavy heart that I tell you Boston Children's Hospital has snatched two more children from their medically attentive and appropriate parents. The hospital had them taken into the state's "emergency" custody because it does not agree with the children's diagnoses made by physicians at Tufts. This time it is Mitochondrial Disease. Both children - one five years old and the other fourteen - were under the care of a team at Tuft's Floating Hospital. The children are not related, but they share the same diagnosis and the same doctors. Both children were having GI issues. Both children went to BCH upon advice of their Tuft's physician who wanted the children seen by a GI doctor there. The children’s GI doctor had left Tufts for BCH with promises of a research team and money. Tuft's new GI team is not arriving until June 1st, and the children needed immediate help. The parents followed the advice of their Tufts physician and brought their children to the BCH emergency room. The GI doctor was not permitted to see either child. The families were told he was being kept at arm's length because others within Children's do not agree with the diagnosis. The five years old's mother was essentially accused of Munchausen's by Proxy. The fourteen year old's family was told it's all psychological, that the girl has anorexia, and that she belongs in the locked psych unit. All of the fourteen year old's medication was stopped. The parents are permitted to visit their child for one hour, once a week, supervised by BCH staff. Guards were called to surround the family and friends and remove them from the hospital. Non-family members witnessed the fourteen year old's abduction...the parents were not even permitted to say goodbye. Meetings were held this past week with U.S. Congressman Stephen Lynch's office regarding the situation at BCH. His office has taken an interest in the fact that a hospital in his district is causing the parents of very sick children, who seek help in good faith, to lose custody of their children. Attached is a list of the towns in Congressman Lynch's district. If you live within one of these towns, will you please contact his office to share your own BCH horror story. The number is 617-428-2000. I know many of you are terrified to speak up because of the threat of BCH/DCF, but unless you begin to speak out publicly this travesty will not stop. When powerful institutions secretly collaborate and then act without public accountability the result is always abuse. Do NOT go to Boston Children's. You have no civil rights once you do. You are not entitled to a second opinion. If you challenge their opinion or seek to take your child to a different hospital, you risk that Children's will have your child taken by DCF. I cannot overemphasize the seriousness of the situation at BCH. No child, ever, should be taken there for ANY reason. If you have managed to escape from BCH with your child, I recommend that you immediately notify the hospital in writing that you withdraw any consents you signed when your child was admitted. This is not legal advice. I am simply telling you what I, as a parent, would do for my own child - knowing what I know now. Generally, those medical consents remain outstanding for at least six months, often longer, and enable BCH to continue to probe all of your child's providers, teachers, and so forth for months. Believe me: they do it long after you've left the hospital. Do you want BCH in your life after you leave? If not, send your letter to Stuart Novick, the hospital's general counsel informing him in writing that any and all consents you signed are hereby immediately revoked and void. Make sure the letter states your child's name and date of birth and that you are the child's parent or legal guardian. Keep a copy. Give one to your child's providers. If BCH then continues to try to get information, it will be a HIPAA violation. For those of you who have already lost custody, I would immediately notify the child's DCF social worker in writing, with a copy to the hospital's general counsel, that your child is not to be a participant in any medical or psychological research. You do have that right even when the state has custody. Write that your notice is being delivered pursuant to 110: CMR Department of Children and Families § 11:23. Make certain you keep a copy. I thank God every day that we never made it to that place when Sammy was desperately ill. I believe in my heart they would have taken him from me. I am asking the thousands of people on this email blast list to please tell everyone you know to stay away from BCH unless they are willing to risk losing their child. We have succeeded in stopping PANDAS parents from going there. We need to cast a wider net. I can only imagine how extensive this problem is because - obviously - not every child's parent who is in this situation manages to reach me. Beth

Received from Beth Maloney today: It’s been a beautiful, soft, snowy day here in Maine, and my house is resting in the middle of a winter wonderland. But it is with a heavy heart that I tell you Boston Children's Hospital has snatched two more children from their medically attentive and appropriate parents. The hospital had them taken into the state's "emergency" custody because it does not agree with the children's diagnoses made by physicians at Tufts. This time it is Mitochondrial Disease. Both children - one five years old and the other fourteen - were under the care of a team at Tuft's Floating Hospital. The children are not related, but they share the same diagnosis and the same doctors. Both children were having GI issues. Both children went to BCH upon advice of their Tuft's physician who wanted the children seen by a GI doctor there. The children’s GI doctor had left Tufts for BCH with promises of a research team and money. Tuft's new GI team is not arriving until June 1st, and the children needed immediate help. The parents followed the advice of their Tufts physician and brought their children to the BCH emergency room. The GI doctor was not permitted to see either child. The families were told he was being kept at arm's length because others within Children's do not agree with the diagnosis. The five years old's mother was essentially accused of Munchausen's by Proxy. The fourteen year old's family was told it's all psychological, that the girl has anorexia, and that she belongs in the locked psych unit. All of the fourteen year old's medication was stopped. The parents are permitted to visit their child for one hour, once a week, supervised by BCH staff. Guards were called to surround the family and friends and remove them from the hospital. Non-family members witnessed the fourteen year old's abduction...the parents were not even permitted to say goodbye. Meetings were held this past week with U.S. Congressman Stephen Lynch's office regarding the situation at BCH. His office has taken an interest in the fact that a hospital in his district is causing the parents of very sick children, who seek help in good faith, to lose custody of their children. Attached is a list of the towns in Congressman Lynch's district. If you live within one of these towns, will you please contact his office to share your own BCH horror story. The number is 617-428-2000. I know many of you are terrified to speak up because of the threat of BCH/DCF, but unless you begin to speak out publicly this travesty will not stop. When powerful institutions secretly collaborate and then act without public accountability the result is always abuse. Do NOT go to Boston Children's. You have no civil rights once you do. You are not entitled to a second opinion. If you challenge their opinion or seek to take your child to a different hospital, you risk that Children's will have your child taken by DCF. I cannot overemphasize the seriousness of the situation at BCH. No child, ever, should be taken there for ANY reason. If you have managed to escape from BCH with your child, I recommend that you immediately notify the hospital in writing that you withdraw any consents you signed when your child was admitted. This is not legal advice. I am simply telling you what I, as a parent, would do for my own child - knowing what I know now. Generally, those medical consents remain outstanding for at least six months, often longer, and enable BCH to continue to probe all of your child's providers, teachers, and so forth for months. Believe me: they do it long after you've left the hospital. Do you want BCH in your life after you leave? If not, send your letter to Stuart Novick, the hospital's general counsel informing him in writing that any and all consents you signed are hereby immediately revoked and void. Make sure the letter states your child's name and date of birth and that you are the child's parent or legal guardian. Keep a copy. Give one to your child's providers. If BCH then continues to try to get information, it will be a HIPAA violation. For those of you who have already lost custody, I would immediately notify the child's DCF social worker in writing, with a copy to the hospital's general counsel, that your child is not to be a participant in any medical or psychological research. You do have that right even when the state has custody. Write that your notice is being delivered pursuant to 110: CMR Department of Children and Families § 11:23. Make certain you keep a copy. I thank God every day that we never made it to that place when Sammy was desperately ill. I believe in my heart they would have taken him from me. I am asking the thousands of people on this email blast list to please tell everyone you know to stay away from BCH unless they are willing to risk losing their child. We have succeeded in stopping PANDAS parents from going there. We need to cast a wider net. I can only imagine how extensive this problem is because - obviously - not every child's parent who is in this situation manages to reach me. Beth

I, too really appreciate this followup. We are also at our 2.5 year mark, and starting to work down the abx. We are still doing supplements, ART, chiropractics, and I have been doing accupuncture, too (both DS's said it didn't help them, but I actually had a period of feeling 100% for about 2 months until we got hit by an improperly remediated mold job...I'm back to doing the acupuncture.) When your LLMD told you that you were done, did you stop abx cold turkey, or did you ease down. Our LLMD (and I think it might be the same one) is having us eliminate one at a time, which makes me feel a little more secure. Also, did you and your children have anything else besides lyme? Did you have any other co-infections and/or viruses, other bacteria, etc?

Definitely don't feel stupid. Personally, I think the parents on this forum are brilliant with everything we have hypothesized, figured out ,and are figuring out. And, the only way for us to figure it out for our own kids is by asking questions and sharing as much as possible. I thank God everyday for this forum, given how much better my children are doing as a result of everything I've learned from it.

True...it doesn't have to mean that, but my suggestion is that if it is being caused by abx and/or a supplement, the first thing I would question is whether or not it is a herx reaction, which lyme and co-infections can cause. I had air hunger (it was a really strange feeling of asthma, that didn't quite feel like asthma, and my inhalers did nothing for it) after I had been on azith for about 3 weeks (treating mycoP). I did have lyme and bartonella, and possibly babesis. That being said, I would wonder why the sacch b levels are high in your dd case.

Thank you Bill. My DS also had dilated pupils...I used to say (before I knew they were dilated): "It's in his eyes...they look like a tiger ready to pounce", as he would simulataneously become extremely ragey, and things would start being thrown. Also diagnosed with Bartonella, along with mycoP (can also cause rages), strep, babesia, erlichiosis, lyme, mold, and we suspect viruses, too. But, what helped with the dx of bartonella was that he also had "stretch marks" (for several years) that were deep reddish/purple and looked like cat scratches. They went away 50% when he was put on IV abx for strep that wouldn't clear, an enlarged spleen, and elevated liver enzymes. Today, he's doing extremely well, since being treated for it. Occasionally, when he's not feeling well, he gets semi-ragey (not as bad as he was), but he runs to his room. Yes, his eyes get dilated at those times. The Bartonella is significantly better, but not completely gone.

Yes - you can "upset the applecart" in different areas. For example, one theory of schizophrenia that is due to too much dopamine in the limbic system... so they give the individual meds to block dopamine, which does reduce hallucinations. The meds are better now, but the older dopamine blockers often produced some parkinson symptoms early on due to decreasing dopamine in the basal ganglia. Additionally the brain has plasticity and changes over time. The number of receptors actually change over time. So, people with schizophrenia who are on dopamine blockers for a long period of time actually can develop MORE dopamine receptors to try to accommodate for this. As they develop more dopamine receptors in the basal ganglia, they can start having unusual muscle movements called tardive dyskinesia. I believe this is seen less often now than in the past as I think newer drugs are better and controlling for this. However, that is why we need to be carful with meds that mess with these levels. It is not as simple as it looks on the surface. And, back to my "viral" discussion...there is research also showing the possible connection between schizophrenia and viruses. So, is a virus changing the level of dopamine, and if so, if we treat the viruses, will the dopamine levels become more normalized?

OK... you guys mention amantidine. I just looked up it's use, and it mentions antiviral, and also sometimes helps Parkinson's, ADHD and some others. Here's another thought. We know that Parkinson's affects the basal ganglia, and we also know that PANS is caused by dysfunction, inflammation, etc. in the basal ganglia. There is also some research that is showing a possible viral link to these disorders. What if, it's not only treating the dopamine levels, but also treating an underlying virus that is causing the symptoms of all of these disorders?

You ask if it's PANS or Lyme. Lyme can be your trigger for PANS, as PANS includes any infection, environmental trigger and/or metabolic disorder (and most of us have found that there are multiple triggers, not just one.) This is the definition of PANS proposed by Swedo, et al.

Thank you so much for the update. I have a few questions: 1) How did you know that you were cured from the lyme tx, and could stop? 2) Do you still take supplements, chiropractics, reiki, etc?

Try Enhansa for the turmeric

DS hates the taste of coconut oil, but we found it in capsule form. We've been giving it to both DS's for about 1 1/2 years. Stopped for several weeks as a trial, and during that time he started getting depressed, and having more neuro symptoms. Just started him back on it 2 days ago. Seems to be happier. I don't know for sure that it's related, but for now, at least, I'm going to assume that it is.

My son did not get a major treatment, several years ago, because although he had insurance approval, the hospital wanted verbal approval by the insurance company. By the time the hospital called insurance to get it, and the insurance company kept telling them that it was "in writing" in their system, it was "too late" to allow my son to go that week for his treatment. There was a "line" of children waiting for this treatment, and my son's appointment was put off for TWO more weeks, by which something major had happened to another child, and all treatments for future kids was stopped! Through a series of problems after that, my son got NO treatment for 9 more months! It was a complete nightmare. And, all because the hospital wouldn't accept any kind of verification other than the one that THEY decided needed to be done!

Maybe a lyme specialist can interpret, as they tend to understand the role that mold can play in making lyme worse. Good luck.

Yeah...I know pediatricians who even deny their own kids have PANS...even in full-on flair, and even when given NIMH and IOCDF info! Thank goodness for all us parents!

It is physically impossible to make a clean room in a house and then move things into that room. 1. you cannot clean a table, move it through a moldy area without re-contaminating it. 2. The moment you open the door to the "clean room" it is no longer a clean room. Spores are in the air all the time and especially when one is moving around. Everything has to leave the house, clean it and then bring it back into a clean house. I was NOT laundering clothes in a moldy location. All laundering was done out of the house. All contaminated bags were not reused for clean clothes. They became garbage bags that were kept outside the house in a shed. The house was virtually empty. After remediation the house was fogged 3 TIMES, yes 3 times with sporicidin and cleaned after each fogging. Remember the HVAC system is a huge monster when cleaning a house. The square footage in the duct work and the air handler is enough to give me the shivers. One has to deal with that if they have had a major mold problem. Red And, I will add to the HVAC issue...make sure you get someone who really knows how to work with mold, And I would not let them spray anything in afterwards (total waste of money.) In the end, we had our HVAC system cleaned 4 times, but that was because we kept getting recontaminated...the cleaning job was not done right, new mold, etc. Also, when you have the house cleaned afterwards, make sure it is with a company that really, really knows how to clean for mold remediation. The first time, they didn't even move the furniture. We moved back in, and I won't even go there. Then, we did it again...moved out of the house for 5 days, and a team of 4 spent 5 solid days cleaning every single surface (including all boxes and items in the basement, floors, ceilings, walls, etc.)

I agree with everything you have said. Definitely get hold of your doc ASAP, and get her back on that azith daily. I would hope your doc would listen to you about these symptoms, and possibly be willing to try upping her dose to see if the symptoms decrease. FYI, Azith is used to treat bartonella. Another thing to do in the meantime (and during the ragey types of behavior) is to try a handful of peanuts and/or 1 - 2 T of peanutbutter. We stumbled on this purely by chance, and it took about 2 years before I found out that pb is full of tryptophan (precursor to seratonin) and also being high in fat, may take the tryptophan straight to her brain (this is all my theory, incidentally...not based on an research...just my personal observation. But, when my son would get that way (and he would get violent, too), the pb (which, he hated, so it certainly wasn't a placebo effect, because I had to fight him to take it) would kick in within 1 - 5 minutes! I would also suggest that you give her 5-htp (available from vitamin shoppe and other places. Do you have an LLMD? She very well may have bartonella and others, as well...just may not test positive yet. Does she have any stretch marks anywhere on her body? These can actually be a rash from bartonella (if she does...look online for pictures to see if they look similar.) DS had them for several years, and of course we thought it was only because he had gained weight. The decreased 50% when he was put on IV abx for an enlarged spleen, elevated liver enzymes and high ASO (the first 2 were symptoms of babesia.) If you don't have an LLMD, and want the name of one, let me know. I'll PM it to you. Good luck. We've been there, and it's very scary.

Bump

Have you checked for viruses like Epstein Barr? They can cause terrible headaches, and many of our kids don't clear them easily. One of my kids gets terrible headaches, and the other doesn't. But, since tx, the headaches aren't as bad.

and lots of symptoms for years (I'm sure it's more than just lyme and co-infections, but certainly looks like bart rash. Please PM me with names of LLMD's and ART and anyone else who you think can help dx and tx. I told her not to bother with "regular" docs for this. Thanks.

We also have experience, having had mold "accidentally" released into the house by a company that was supposed to be remediating properly. My son tested positive for hypersensitivity pneumononitis to mold, and the doc said that meant that we had to avoid mold. I have been having terribly symptoms, although tested negative. Never did the MOAT TEST. Our LLMD put us on cholestyramine, which binds the mold and pulls it out of the body. My son couldn't handle it as long as I did, but I think it did help me. He also sees an ART provider, who did muscle testing as well, and she has put him on several protocols for mold, as well as lots of other things she found. He's really improving, but keep in mind that we are dealing with a lot more than just mold. Just curious why you suspect mold? Did you find it in your house? If so, have you completely remediated (that can include getting rid of all furniture that is made with pourous material. We have replaced all mattresses, except my husband's and mine (I didn't think it was as badly affected, but now I'm positive it's causing my hand to get swollen and numb at night, because I slept on my son's bed last night (he's away at college), and it didn't happen. I also still have to get rid of all my antique furniture, and in the meantime, just haven't been using it (I'm having such a hard time parting with it...it was my grandparent's furniture.) But, I know it's necessary, because you can't get that out. You can also get more information on this subject from the lyme forum, as people there have discussed it in the past.