aidansmom

We go to Jemsek clinic and I will PM you info

She is Aidan's neurologist. Are you in Ohio or nearby? Will talk with you via PM = probably tomorrow I am sure there is one other on the forum who sees her.

Yes we are still pulsing. I talked to LLMD last night on the phone and right now we are going to stick with current antibiotic/babesia treatment schedule. I think I am conflicted at viewing this from a PANDAS treatment point of view vs. a Lyme/co point of view. Let us know what the Dr. says about the purple bump.

So, not back on antibiotics yet? I have been thinking about you and wondering if your dd was still off antibiotics and wondering how her liver enzymes and d-nase are. I hope you don't mind if I compare notes with you. I had posted on your thread on the PANDAS board about dnase rising. We just got labs back again and dnase is even higher than last post. Taken every month and they have gone like this (late in the month): July 165, August 487, Sept 598, October 742, ASO has gone up slightly but still barely below the upper range of normal. ALT just above normal. I keep thinking he needs to be on different antibiotics and/or more frequently. Treating for Lyme, Bartonella and Babesia. That is the focus instead of strep. But I really keep wondering if he needs augmentin for strep - when he went on in Dec - his dnase finally went down in Jan., then he went off mid June and you his dnase is elevated in mid july To me behavior seems PANDAS-like for him no illness symptoms behaviorial stuff (not as extreme but not as good either) that led us down the PANDAS trail in the first place in 2010 before pursuing Lyme in 2011. Defiance, random acts of throwing, ripping up objects some aggression (not a fluently verbal kid but that is actually improving). I wish their weren't so many variables Philamom - Let us know what your doctor says for your DD. Thinking about you guys. Also input of anyone who has insight of the interplay of treatment for Lyme and coinfections and strep. I have call into LLMD

My local Lyme support group passed this on to me. Here is a link to the full article and excerpts from the beginning and the part that talks about lyme http://ngm.nationalgeographic.com/2011/11/iceman-autopsy/hall-text Iceman Autopsy By Stephen S. Hall Photograph by Robert Clark Shortly after 6 p.m. on a drizzling, dreary November day in 2010, two men dressed in green surgical scrubs opened the door of the Iceman's chamber in the South Tyrol Museum of Archaeology in Bolzano, Italy. They slid the frozen body onto a stainless steel gurney. One of the men was a young scientist named Marco Samadelli. Normally, it was his job to keep the famous Neolithic mummy frozen under the precise conditions that had preserved it for 5,300 years, following an attack that had left the Iceman dead, high on a nearby mountain. On this day, however, Samadelli had raised the temperature in the museum's tiny laboratory room to 18°C—64°F. ..................................................................................................................................... The autopsy had taken about nine hours; analysis of the material gleaned will take years. The first revelations were disclosed in June, when Zink and his colleagues presented some of their initial findings at a scientific meeting. Thanks to the DNA in a tiny speck of pelvic bone culled during the autopsy, the Iceman has joined the company of renowned biologists James D. Watson and J. Craig Venter as one of a handful of humans whose genomes have been sequenced in exquisite detail. The genetic results add both information and intrigue. From his genes, we now know that the Iceman had brown hair and brown eyes and that he was probably lactose intolerant and thus could not digest milk—somewhat ironic, given theories that he was a shepherd. Not surprisingly, he is more related to people living in southern Europe today than to those in North Africa or the Middle East, with close connections to geographically isolated modern populations in Sardinia, Sicily, and the Iberian Peninsula. The DNA analysis also revealed several genetic variants that placed the Iceman at high risk for hardening of the arteries. ("If he hadn't been shot," Zink remarked, "he probably would have died of a heart attack or stroke in ten years.") Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNA—making the Iceman the earliest known human infected by the bug that causes Lyme disease. .....................................................

Here is one artilcle I found. A little old. http://www.lymenet.de/literatur/steroids.htm

I feel funny writing this because it could be just a 10 year old boy being careless but I am wondering if anyone has had a similar experience. Since we think Aidan has congenital Lyme I have often wondered about his siblings. If it weren't for $ and uncertainty I would have probably have taken Aidan's brother to the LLMD already due to some symptoms (stomach aches and sore heels that could be explained by growth, etc) but the symptoms are not severe especially compared to Aidan's symptoms. Aidan has pretty severe cognitive impairment but his brother seems to comprehend things very well and is extremely intelligent. I am concerned because on several tests since the school year started Aidan's brother has left answers blank or not circled a choice on multiple choice causing him to miss the problem even though he knows the answer or could make a good guess. So he is getting B's or C's on tests that he could get A's. This has happened multiple times and in different subjects. I have pointed it out to him and asked him to be careful but it still happened after that. So, is this just carelessness or could it be something else?

I don't really having any help but we are having a similar experience so I don't know if comparing notes would be helpful for either one of us. For Aidan we have these numbers: in June ASO was 123 and dnase was 165 july ASO was 126 and dnase was 166 Aug ASO was 122 and Dnase was 487 Sept ASO was 138 and dnase was 598 ASO are all in normal range (<150) I think we have had an increase of symptoms but Aidan's baseline behavior is not normal so sometimes it is hard to tell if there is increase in symptoms especiall when it probably started when it was summer and we are out of the routine of going to school it is harder for me to tell if there are any changes. And then there are all of the variables for us - going back to school, herxing, etc. There were a couple of outburts that he had especially in Aug and Sept - maybe even some in June/July and some sleeping issues that I have wondered might be attibuted to strep. IN 2010 his dnase was elevated all year and finally went down beginnning of 2011. I keep wondering if augmentin kept that in check which he went on in Dec and off of in June. He is in lyme treatment and is on multiple antibiotics (ominicef, bactrim and flagyl) that are pulsed (not daily) and he started babesia treatment last week - mepron and artemisnin - also pulsed. I think prior to this they were tageting Bartonella (red spot under eye disapeared after being there for years!) I keep wondering if he needs to go back on augmentin for strep though. We will keep tracking ours and I am sure the LLMD will help us figure out. So far LLMD says (via phone nurse)that dnase is high due to issues with immune system regarding Lyme/coinfections (if I am understanding correctly). Philamom - So you can't do antibiotics at all? Are there more natural treatments that target strep? and would she be able to take them with the elevated LFTs?

Here is a link: http://www.irs.gov/taxtopics/tc502.html Note: "You may deduct only the amount by which your total medical care expenses for the year exceed 7.5% of your adjusted gross income" Also for specifics items: http://www.irs.gov/publications/p502/index.html This is info for 2010 so you will need to look to see if anything changes for 2011. My interpretation (and I am not a tax expert) is that the doctor's visits not covered by insurance and mileage on cars (I think it will be 19 cents per mile in 2011) are definetly deductible For supplements under items not deductible click on nutrional supplements and it reads: "Nutritional Supplements You cannot include in medical expenses the cost of nutritional supplements, vitamins, herbal supplements, “natural medicines,” etc. unless they are recommended by a medical practitioner as treatment for a specific medical condition diagnosed by a physician. Otherwise, these items are taken to maintain your ordinary good health, and are not for medical care." Most of ours have been recomended by a MD or DO for Lyme or PANDAS so i think I can deduct. Don't forget other expenses that may not be realated to Lyme like eye glasses, contacts, dentist visits, I believe that anything that you paid in 2011 for 2010 expenses can be added on for 2011 (but not what you pay 2012 for 2011).

I posted a response on the Lyme board but I thought this was a good read about how LLMD's might interpret the western blot and explaining why a negative Lyme test doesn't necessarily mean there is no Lyme. http://lindaslymediseasejournal.blogspot.com/2008/08/western-blots-made-easy-by-dr-james.html

We did an augmentin, azith combo at first. I think augmentin partially because Aidan did have high ASO and anti-dnase b.

Is the Igenex mainly all components of Lyme? Or does it test some co-infections? I realize I need to understand this more. Sounds like I should also ask Dr. B about co-infections in more detail, though I believe he did a whole bunch of that testing in the beginning?? I should likely ask this over on the PANDAS board too. The results you give above are the western blot which has tested for Lyme. For a western blot they seperate the Lyme bacteria into parts and see if the blood has antibodies in it that react to the each of the parts. I just found this explanation and I thought possibly it could help you: http://lindaslymediseasejournal.blogspot.com/2008/08/western-blots-made-easy-by-dr-james.html I think technically your tests are negative but you have so many IND to Lyme specific (which are 18, 23, 31, 34, 37, 39, 83 and 93) bands that a Lyme doctor would take these very seriously if you have clinical symptoms, Igenex can also test for the coinfections but it is expensive, may not be covered by insurance and you may be just as well off testing for these though another lab (but I am not knowledgeable about this). Based on clinical history and these results I would go to a LLMD and let them determine if they think there are symptoms of coinfections and have them help you decide whether to run tests for coinfections and from which lab.

I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense. We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there. Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it. Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was: "even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis." When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach. But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option. You are a great Mom and you will figure this out for your child – whichever direction it will lead. No offense taken by me. I can relate to all of your concerns and I think they are valid. Want to write more but no time right now.

I notice you keep using the words "rule out" for Lyme and Bartonella and there is no test at this time that will do that. (It would be awesome if there was.) A negative test does not mean no lyme or Bartonella. Further testing might just bring up more questions than answers. If you think Lyme might be an issue than I think you would get more for your money to go to a LLMD rather than order more tests at this time. Let the LLMD look at what in your child’s history could possibly be attributed to Lyme. They would also know what tests would be the best to run. Then let your Mom instinct take over as to whether it makes sense. We get a full write up from the LLMD after each of Aidan's appointments After the first appointment the write up included all of the findings in Aidan's history supporting the Lyme diagnosis - his IGenex results were just one of many things listed there. Also, Aidan was neg. for Bartonella but LLMD thought he had it. Probably mostly based on behavioral symptoms. They also thought a red spot in the crease under Aidan’s eye was from Bartonella. It has been there for years but it just went away about a week ago – I think due to Bartonella treatment – weeks of it. Since we believe Aidan was congenital Lyme I decided to have me, dh and siblings tested (local doctor ordered). Dh and I came back IGG and IGM positive by Igenex criteria (more positive than Aidan), other son was IGM positive (band 31 AND 41) and sister had IND on ** bands. When I told Aidan's LLMD the response (in the write up we got after visit) was: "even with IGenx testing, it is necessary to review these results with clinical presentation. Western Blot screening evaluates for immunological response to various proteins or simply potential for exposure. Certainly, many patient's with Lyme do not have positive tests and the diagnosis is made on evaluating history, subjective and objective findings. Supportive serologies are often utilized to support the diagnosis as opposed to confirming the diagnosis." When I read your posts on the PANDAS board I can totally relate. You seem to feel frustrated with your PANDAS doctor and I think that it is less about the doctor's abilities and more about your gut feeling about your child's fit with the doctor and treatment plan, especially since your child does not fit the PANDAS mold exactly – that there might be something more. We have “ Been there done that” even though many parts of Aidan’s history supported PANDAS diagnosis. (Also with other doctors in Aidan’s long medical history) It seems to me that you are having some gut feelings that the PANDAs-only path may not be the one for your child. There are LLMDs that are aware of PANDAS and will look at that too. Ours checks Aidan’s strep titers every month. Our LLMD was the first that I felt looked at the entire history and did not treat us with a cookie cutter approach. But, another option might be be to go ahead and do the steroids once and see what happens. I know Dr. K uses the steroids as a tool to try to see if IVIG was likely to work. We tried that (before thinking about Lyme) and for us it did not show an improvement. Just another option. You are a great Mom and you will figure this out for your child – whichever direction it will lead.

Do you know what ADHD medication? I don't beleive a stimulant medication would be good for the kids suffereing from Lyme/Bartonella. We had tried one for Aidan 3 years ago for Aidan and it was a disaster. (We believe he has congenital Lyme but this was before we had found the PANDAS?Lyme trail.) I also believe our LLMD would NOT recomend a stimulant. He did recomend using other things that would help like Lamictal which we did not do as we were already taking a med that was supposed to be similar according to our neurologist. Along with our neurologist we decided to try tenex (also comes in a time release form called Intuniv which Aidan can't take because I crush the pills to dose as he does not swallow pills yet). We tried in the spring and I did not see results in behavior but a possible improvement in speech ability (is severely delayed) but no negative effects were dicerned either. We have kept him on it at that level thourgh the summer due to the need to change other meds but just this week we are upping the amount we give with another step up in 2 weeks to get him at a more optimal dose. We shall see if it helps! I know of some kids that this has helped. It can make them sleepy especially if they get too much = our neuro says that if he is sleepy past the first day of an increase to give her a call.

Aidan's LLMD has him on nattokinase for biofilms.

Aidan (8) had ear infections starting at 6 months - about every 3 weeks. He would go on antibiotics and he would be better - then after going off it would come right back until he got tubes at 10 months. When those tubes fell out the next year we started the cycle again until he got tubes again 20 months. Those tubes stayed in a long time so we only had a couuple of them after that. (Then it was strep several times when he was 3 until he had his tonsils out.)

Just curious, what you are treating her with?

Dr. Neveda Reed at Kidslink (you can google it) in Twinsburg is a ped neurologist that has seen many PANDAS cases and believes in it. Depending on your situation this may be a good place to start. She tends to serve children with autism a lot but will I know she has seen others on this board some without autism. She is out of network and does not take insurance but she is well worth it to me. PM me if you want more info. We have since gone on to get a Lyme diagnosis and it is great to have her on our team.

http://www.nytimes.com/2011/06/21/health/21ticks.html?_r=1&ref=health

I feel the need to apologize as I did not notice that this article was dated this week (thats what happens when you skim something). I did not realize how current it was so it is really good that it was posted since it appears to be current and it is an update on Dr. Jones ongoing legal saga as I think anyone on either side of the Lyme debate might be interested in. I also don't want this thread to turn into a debate between you and I as that was not the purpose of my post. If I am being defensive it is of Dr J and of the other doctors who take a step out of the box to help us - not myself. Wilma is finally getting the help for her child that she needs. I also not aiming my comments at you in particular but at all the people reading this forum who may not have read the book including/especially Wilma and also anyone who is new here not familiar to the controversy regarding Lyme. As I stated when I was new here I had a different impression of Dr. J then I do now. There is nothing in the article I disagree with - it seems to be factual talking about the controversy and the legal battle.

Wilma- You were not being disrespectful. It's good to ask questions - don't stop - it's how we move forward. Your a great Mom...can't wear to hear of your daughter's progress I agree I don't think you were being disrespectful either. I have never even met Dr J but I felt like I got to know his character through the book I mentioned and other's experiences. I realized how much he has a great intuition about these sick kids and what to do for them and practices the "art" of medicine rather than just blindly following some protocol that doesn't fit and doesn't make sense - what most kids with such unique challenges on this forum and the PANDAS forum need but don't often get. I joined the ACN forum thinking PANDAS. Back then people were debating Lyme and talking about the action against Dr. J. That was before I knew much about Lyme and it confused me. I do remember thinking negative of Dr J back then because there was an action against him but I didn't understand. Now I get it! So, I thought the background was important to anyone reading this. I have been following your story, tried to PM you a couple of times a while back when your box was full and I am really glad that you have a direction to follow. I think the diagnosis of Bartonella makes sense for the symptoms you describe. (I have been researching it a lot since we think Aidan has it.) I can relate to your situation as my child has always been a huge challenge in some interesting ways - we are thinking congenital Bartonella and Lyme. I am glad to hear that you are getting some positive results! I think you are amazing how you are going to the ends of the earth to help your child. Hang in there!!

Basically he helped a family who was desperate. How many of us PANDAS/Lyme Moms so long for that when we can't find the help we need - especially locally. I also would suggest reading "Cure Unknown" as it talks about this case and gives good insight into Dr. J and who he is. The documentary "Under Our Skin" also addresses this. Before Wilma mentioned something about legal action and doctor jones which is the only reason why I posted the article. In order to answer a question that she previously asked......She asked a question about legal action. I found an article on legal action against it and posted it. Period. Yes, I think that was very helpful for you to provide this info for Wilma. Although i just skimmed the articles I think the article was factual and informational. But I also think it is important to know the situation of the family he helped - the bigger picture. Here is a link to a chapter from Cure unknown but unfortunately one of the pages (p 332) that really describes what is happening with the family he helped with the treatment under question is missing. http://books.google.com/books?id=n8_3VeO07sgC&pg=PA330&lpg=PA330&dq=Dr.+jones+cure+unknown&source=bl&ots=U5D3_HGisi&sig=RYCUamTKvj7rovNr3cT-dhHsvEQ&hl=en&ei=06X3TaPtDpGp0AGWod3CCw&sa=X&oi=book_result&ct=result&resnum=1&ved=0CBwQ6AEwAA#v=onepage&q&f=false I am sure that most PANDAS and Lyme parents would be grateful to get the help they need like this family did. This Dr is mentioned throughout in other parts of the book and further insight into him can be achieved from reading it.

Nystatin can be taken with antibiotics. Aidan has been on it for a while. But do not take probiotics with antibiotics as the antibiotics will kill the good bacteria in the probiotics. We have also have had it suggested by our LLMD to take sacch boulardii as it is a good kind of yeast which will crowd out the bad but the Nystatin will kill sacch boulardii so we have not started it. There is bit of sacch boulardii in Aidan's probiotic. I debate if we should keep Aidan on the Nystatin or go to something else.

Basically he helped a family who was desperate. How many of us PANDAS/Lyme Moms so long for that when we can't find the help we need - especially locally. I also would suggest reading "Cure Unknown" as it talks about this case and gives good insight into Dr. J and who he is. The documentary "Under Our Skin" also addresses this.