momofgirls

If left untreated yes, symptoms can get worse with time but that does not mean you can not still get him well. I think you are right in saying that the key is finding a doctor to rule everything out. Please do visit the ILADS website and get a doctor referal. If lyme is big in your area I wouldn't rest till its properly ruled out. Even if your son does not have lyme, surely any good lyme doctor will check for strep and other suspect infections known to cause tics and OCD in children. I advise you to start there because it can be so tough to find a doctor who understands infection at this level. These doctors tend to be open minded and well versed with treating the multi-infected patient. Hi Kim Thank you for the reply. I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant. We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work. There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that. He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed. I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

We all can relate to the difficulty in getting a doctor to help but you could start by asking them to just run strep titers, a lyme western blot, and maybe check for mycoplasma pneumonia. Lyme can be tricky. My daughter's western blot via Quest was negative but we followed up with a specialty tick borne disease lab and results were positive. I have never found a tick on my daughter and was shocked when we received her results but she is now responding to treatment. I would suggest looking up Igenex and reading up on there testing. So many of these kids on the forum have turned up positive for lyme and co-infections and parents had been unsuspecting. You really need a good doctor to help with ordering these tests. I am not familiar with your area but if you are willing to travel you may find help here in the states. There may be doctor's in your area and hopefuly others will chime in here to help. Also I think it would be good to contact ILADS, international lyme and associated disease society. They can refer you to a doctor close to you. I am not saying your son has lyme but these doctors are very willing to run blood work for all types of infections and treat them appropriately. Hi Kim Thank you for the reply. I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant. We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work. There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that. He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed. I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions. Kim

Jodie, We all have these terrible low times in our lives and this illness can really bring us to our knees but I know you well enough to know that you have the fight in you to beat this for both your son and yourself and ok well for the husband too. None of us wanted to get on this crazy train. Its nuts but amazingly, through it all, one thing I have found are some treasured friendships that I would have never made had it not been for this disease. The bonds we parents share is unique and strong. You won't give up because you can't and none of us will allow it. I will be bugging you forever. Take a bath and relax once and a while because your son will recover. Dont let yourself go down in the process because he wants you well too. I will call and we will talk about getting you treatment. I am sure we will find a way. Big hug Kim

oh my gosh Laure. If your daughter is spending that much time in the woods you may want to take this lyme thing a little more seriously. Also her positive response to steroids DOES NOT rule out lyme. They may in fact give temporary relief from her symptoms but its bad, bad, bad for the lyme disease underneath. I don't know what Dr. B is thinking giving them to her before ruling out lyme.

Amy That was a great post! Thanks so much for continuing to share your updates. It brings us all a little relief to hear the good stories again and again and again!!! So happy your daughter is well. Take a deep breath once and enjoy her. Kim

Mary, I am so sad to hear you and your younger daughter are both beginning this journey BUT you are now armed with the knowledge to get her the help she needs quickly. She will get better and so will you. Getting one child well and then beginning with another is so hard but the good news is that you are better prepared this time around. This is certainly not the journey we all chose for our children but we've no choice and you can count on us all here for support. Your posts on this forum turned pages in many of our lives and I am forever grateful. Good luck to you and your little one. I know she will be fine. Kim

Love it. I think this theory makes the most sense and in my mind makes prognosis for our kids very good. Hopefuly we are able to identify the bigger bugs impacting our kids and treat them appropriately. Then perhaps they wont react to every little germ in which they are exposed.

yes I agree Elizabeth! Its all the same disease to me. Our kids present with tics/ocd and are infected with something! I really never understood why we needed a seperate lyme forum because we all freely talk about strep, viruses, vaccines, mycoplasma etc.. here on the pandas board but when one mentions lyme its like " oh you must go over to the lyme board to talk about that". We keep talking about lyme because diagnosis and treatment is tricky and very different. If a parent misses an infection like lyme or babesia a little zyth and ivig will not recover the child. We hear foot pain and think lyme. Perhaps we are skewed, traumatized by the lyme experience but tough to hold our tongues when we think what we have learned could help another child. I don't know why some are so offended. I have a lot of gratitude to some of the moms on this board who educated me on lyme disease and feel I have a better understanding of this illness and how to get my daughter well. Prior to Igenex testing, my daughter's western blot via Quest was negative. Igenex test revealed very lyme specific bands positive. Our lyme doctor also explained that the super high C3D (immune complexes) as seen in my daughter, are very common with lyme and sometimes prevent positive sereology. I now understand what was preventing my daughter from full recovery. Good luck to all and go rule out lyme.

Wow Suzan that was a refreshing post! So glad you have found an open minded physician willing to help. Kim

This is a tricky question since there does seem to be a lot of false negative's in lyme testing for many reasons. My daughter had been on abx for about 9 months prior to our lyme testing and it was positive. Maybe also it depends on which tests you are ordering. You should speak with the people at Igenex about this or a good lyme doctor for guidence because there is not a straitforwd answer for all situations. Kim

Wendy You can count on our continuous support throughout this journey. I KNOW there is an end. Wishing you and your family good health! Kim

Hi Topaz It sounds to me like the steroids were maybe doing their job in slowing down the hyper immune response our kids have and decreasing inflammation. But sometimes I think when you used them and then stop, unfortunately things come back. It is just my opinion but I think of chronic underlying infection. I look at steroids as a bandaide that indicates your child does have some sort of infection triggered autoimmune disease. We used them too and with great success but once we stopped the steroids symptoms came back. At the time we did not know our daughter had lyme disease and later she tested positive on the Igenex western blot. The other thing that comes to mind is that the children with lyme sometimes do worse when starting abx due to the herx reaction. Is this your sons first trial of abx? Anyway, has Dr. B ordered lyme testing through Igenex for your son? If not I would check into that and ask him to check co-infections, strep titers, mycoplasma etc...maybe there is still some chronic underlying infection that needs further treatment. good luck kim

bumping this up for anyone new looking to rule out lyme and tick borne diesease. I would advise any parent still searching for answers to read this paper.

Emerson, I am so happy you are getting somewhere with all of this! Good for you. Not happy to hear you have lyme disease but at least now you can begin to heal your little body. I will try to answer what your question about what seperates Igenex western blot form the western blot run by other labs like quest and lab corp. You can read up on this as well and I am sure others will chime in if I get this wrong. At some point a lyme vaccine was developed and lyme specific bands were removed from the western blot. The CDC knew that if these specific bands remained on the test that all of those vaccinated would test postitive. If you run lyme testing through Igenex, they check for all lyme specific bands. Unfortunately most physicians are unaware of this and many lyme patients go undiagnosed for this reason. Igenex also offers some confirmatory tests for lyme and co-infection panels. I cant speak to much on ART but KeithandElizabeth may add to this discussion. Her physician performs this and her children have had amazing success with treatment bases on the ART results. Good luck! Kim

Falling apart, Hope the others dont shoot me for saying this but here goes...while you were away, many, many, many of us have discovered that our children had multiple infections like lyme, bartonella, babesia, mycoplasma, and viruses that were making it next to impossible for their bodies to get rid of strep. In these situations, other parents have sought the help of lyme literate doctors for care. These doctors are very skilled at going at multiple infections with combination antibiotics. We've talked a bit about peeling away at the layers, knocking out these co-infections one at a time. Certain drugs in combination do this and it is truly an art but can be done by an experience lyme doctor. If your children cannot get rid of strep, then it is my opinion that SOMETHING else is wrong. If it were just that she was immune deficient then the ivig's would have helped with that. After a year of doing ivig and antibiotics for strep, it really sounds like it is time to look for other culprits. I am not saying your children have lyme disease, but there has been a pattern here on the forum in people dealing with issues just like you, only later to find out that their child had lyme disease which was disabling their immune system and making them vulnerable to strep, viruses, etc... In order to proplerly rule out lyme and co-infections visit the ILADS website. This is the International Lyme and Associated Disease Society. If you contact them they will refer you to a physician hopefuly close to you. Again, these doctors are very accustomed to dealing with situations like yours and will find the problem and help treat ALL microbes not just lyme, not just strep, but whatever is holding your daughter back. I don't believe that your situation is just about strep or all your efforts would have paid off. If it were me, I would have both girls evaluated so you can truly get to the source of the problem. Your non-pandas daughter should be able to beat strep too. Don't stop searching and peak over at the lyme forum. Do you remember Iowadawn from when you used to post on the board? Read through some of her posts...her son's situation has been very telling as to why her son had the crazy high strep titers that would not budge. I think you would be interested in her story. Good luck Kim

One of the hardest things about this illness is uncovering the root cause.ok actually herxing is even harder. Although I'm sorry your family will be struggling with lyme, I am relieved for you that you have found answers. Good luck and my only words of advice are to detox! Kim

I wanted to post this because I like the way it is written. It's easy to read and understand. It is Dr. Burrascano's treatment guidelines and he goes into a bit of detail on how lyme disease impacts the immune system, antibiotic treatment combinations, supplements etc... Just wanted to share. kim http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

This is a video that nicely goes over lyme disease and how autoimmunity becomes a factor. Also talks a bit about treatment success when co-infections and detox are adequately addressed. http://lymebytes.blogspot.com/ I cant figure out how to attach the video so if you go to the link and scroll through the videos (there are just a few) it is entitled "How Lyme Disease and It's Treatments Work" Sorry I am not able to post the actual video easily but if you take a minute I think it is worth watching as there has been so much debate about lyme triggering an autoimmune disease causing tics and OCD.

This is kind of funny. It is a video of Connie Strasheim in what looks like a tick infested area with another woman talking about detox. The information is good but the video is akward and sound quality is poor. Its kind of late and these are the goofy things that keep me going. http://lymedisease.medical-topics.com/toxin-binders-and-other-lyme-disease-detox-info/

This is a very interesting article regarding detox and lyme treatment. It is a little out there but it kind of made sense to me and goes along with everything Dr. Klingherdt says about lyme disease. I often ask myself why our kids have so much trouble recovering from lyme disease while really most people get by with a short course of antibiotics and recover just fine. I live in Connecticut and pretty much everyone I know has had lyme disease. Most people dont think it is such a huge deal and I sit and listen to these stories horrified wondering why our case is so extreme. I wonder if maybe our kids have more trouble detoxing than most and when faced with an illness like lyme, left untreated sometimes for years, recovering from the disease becomes very difficult and requires a combination/balance in treatment approach to address microbes, detox,etc... Anyway, I thought I would share the link. It gives perspective on the importance of detox but doesn't give a lot of suggestions! Does anyone see a llmd that addresses ammonia clearance and neurotoxins? Aside from charcoal and bentonite clay, I am still clueless. http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/pg_7/?tag=content;col1

I thought this was a good outline of TBD by Dr. Corson and worth sharing with the group as so many people are just begining their lyme journey. http://www.theig.net/yorkpalyme/pdf_files/TickBorneDisBasics.pdf

Nancy, I second Elizabeth's advice. I have heard really great things about Dr. Corosn and Dr. Horowitz. I know quite a few parents that have seen both doctors and the treatment is overwhelming and intense at first but surely you would be in good hands with either doctor. You may have just discovered the root of your daughter's problems. Good luck and dont give up. kim

Yes Peggy that is my point. I just did not word it as well. Kids can have zero strep titers and still make anti neuronal antibodies producing a high cam k. So the auto antibodies are actually a secondary response to the infection. The bacterial antibodies to lyme or strep are not attacking the brain themselves. I could however be off on some of this techy stuff maybe Buster could chime in to explain those anti-neuronal titers better. I just want people to understand that I think a child could have an elevated cam k without having raised titers to lyme or strep or whatever. If by strep titers, you mean ASO and AntiDnase, those are actually antibodies to strep exotoxins- they are not the antibodies that are causing basal ganglia malfunction.

So no strep titers no pandas?