aidansmom

We had what I had thought was a rash here too last week. It was by his shoulder blade, oval shaped about 2 inches by 1 inch. His was a lot of red raised bumps and one bump toward the center seemed darker red and more prominent. My husband commented that it looked like a rug burn. But I could not think of how he would have gotten a rug burn near his shoulder blade and dh didn't offer any explanation. I took a picture to try to document and took him to the ped. (not necessarily Lyme literate) to see what she would say. I thought it could be something besides Lyme and I thought having her look at it would further document it. She also thought it looked like a rug burn. IN further talking to my husband after taking Aidan to the doctor he said that Aidan and his brother had been wrestling - but he couldn't remember when for sure. (doesn't remember details they could of wrestled the day before or the week before and he wouldn't remember the specifics). Also, I wasn't there to bathe him the night before the night I had spotted the rash and of course DH doesn't look him over like I do so I couldn't say for sure if it was there or not the day before - makes narrowing the source down (if it is a rug burn) difficult So, I don't know for sure if it was a rash or a rug burn. Aidan is not really verbal and may not indicate if it is itchy. At this point the color is fading but it is still rough to the touch now. I am a little embarrassed if it is a rub burn! Does a rash like this sound familiar to anyone?

How did the appointment with Dr. J go? I am curious what he had to say about your son. Thanks for the info. I actually asked the kid's pediatrician to sign the form to order the tests for Aidan's siblings and she said yes! I plan to do just the Western Blot on them. I told her to make sure to give me a copy of the results when they come in and then I can pursue with a specialist if needed. Now lets see what will happen when I ask my doctor about testing for me and dh.

I asked that of my LLMD's office this week (via email and the nurse that i go through when I have questions) and she replied they would not order testing if we were not patients. I guess I can see why in a way to keep it clean - they probably have their reasons. But on the flip side I know the LLMD's office knows how hard it can be to get support and you would think they would be sympathetic to this situation. Also, I do not really have the money (not covered by insurance) or travel time to bring the whole family to the LLMD for treatment (but more evidence on the Western blots might convince me to work it out however I can). We did talk about the rest of the family with our LLMD at our first appointment and their suggestion was to start with the most symptomatic person and go from there. They also listed some of the family members symptoms in their report following the appointment.

We are treating Aidan for congenital Lyme and I have been thinking of testing the rest of the family. Each person has had their own symptoms that I have worried about but nothing nearly as severe as Aidan. I finally got my nerve to ask our new pediatrician to sign the order for a Lyme test for the other 2 children and she said she would. I was planning on just doing the basic Western blot for each - any advice on this? I don't think our ped. is Lyme literate but she seems open and has not criticized what we are doing. Now I am trying to get up the nerve to schedule an appointment with my doctor who is also new to me and see if he will order for me and dh. I am still conflicted about this. Will doing the testing leave me more confused. Because a negative does not necessarily mean negative, lots of IND means maybe and if positive do you treat? But, it could provide more data - especially doing the whole family. Elizabeth

I am sorry that I can't help but this makes me think of something I went through with my eyes. 2 years ago I started seeing more floaters than normal in one eye and it felt uncomfortable. A couple of days later it started looking like pink eye. I got in with a retinal specialist who saw where the infection was and that there was scar tissue there. Pretty cool pictures were I could see the retina and the damage from the infection. The Dr. said it was toxoplasmosis and that from the scar tissue I had had it previously and that it must have been dormant and had become active again. He did not do any blood test to confirm toxo. But he prescribed me 6 weeks of antibiotics - I can't remember what kind but I know it was not one of the really common kinds like amox or azith. Now, that we think my son has congenital Lyme I am wondering if it is possible that the eye thing was Lyme instead. Or that Lyme caused the toxo to be active. Or could I have passed on toxoplasmosis to my son causing some of these issues. I think the LLMD may have tested him for Toxoplasmosis. I would love to get a hold of the retinal specialist I saw to see if he has ever heard of Lyme causing this kind of damage and I am curious what antibiotic I was on.

We are not but please report how it goes!

We were told to do decaf. (for obvious reasons!)

Can't say for sure but it is possible that it is herxing. That is very common with Lyme when you change abx. My son went downhill when he was changed from Aug. to azith - increased behaviors and got an illness. We (LLMD and I) thought it might be a herx. We ended up adding aug. back in for ear infection and things leveled out. I am not sure why but LLMD suggested we give abx only on weekdays and with this change in scheduling we had negative behaviors in a cycle which again we thought may be due to herxing. We were instructed to detox. - lots of epsom salt baths and green tea and B vitamins. He seemed to level out some after doing these. There are a lot of people on the board who have other things they use for detoxing so hopefully they will respond also. So, you might try that and see if it helps. And I am sure you are doing probiotics also, right? Elizabeth

So if it is your discipline - why did he have such a hard time at school as in your original post? Do they have an issue with discipline also? For us these behaviors wax and wane also so he can hold it together in one instance but not at another time. My son was about your son's age when I told a neurologist that I think there is something more that we are missing that was causing some of his behavior. His response was "Do they have trouble with him at school?" At the time I said "No" and that was because he seemed to be better at school and teachers seemed to be able to get him to do more than I could. But in hindsight he did have problems with the behaviors at school and they have gotten more obvious as he gets older. I think he was implying that it was my parenting. I overall liked this doctor and I don't think that he was really trying to criticize me because it was obvious that Aidan was not an easy child to parent. The thing that bothered me is that is that I had a gut feeling that I think was valid that wasn't really listened to. When we went away from this doctor my husband really liked him (and I did too) but I said that I didn't feel right about that one thing so we never went back although it was a least a year before I started looking into stuff outside of traditional medicine. Ironically I saw the same doctor on Larry King Live when Jenny McCarthy was on. He was taking the opposing side from Jenny and her doctors about vaccines. So there was Jenny's doctor, this neuro doctor, the head of the AAP speaking on vaccines and lastly there was a pediatric doctor that wasn't necessarily anti vaccine but she said we really need to listen to the mothers and what they are saying about these children and I said "Bingo!". Elizabeth

Yes Aidan was so wiggly - I think he rolled over very early but it wasn't like it was something intentional that he had done he was just so squirmy it happened. Also my 2 other kids sat up (barely) for their 6 month picture at their baptism but Aidan could not - I really thou gt he was strong enough too he just could sit still enough to hold it. It took me a while to really think about it but it is interesting about your twins with one having similar symptoms as my son from infancy (that I am thinking may be attributable to Lyme) while the other one did not have these symptoms. So, does it mean that the symptoms from infancy are not really symptoms of Lyme? Or could one of your twins have got Lyme from you congenitally but not the other? Or did they both get it and it is more actively attacking one twin over the other? Or did it make infect a certain part of the body in one twin but not the other(such as the brain since there are neurobehavioral symptoms)? It does seem to affect some people more than others. I also think that from stories I have read that it can be in your system and not really have a big affect until all of sudden you have the symptoms often brought on by some other trauma or stress (or maybe some never get much symptoms at all). Or some may have one type of symptom at one time and another at another time. I guess that is what I see in my other children - like the 2 years ago my son Sam got stomach aches and felt dizzy and it seemed to be worse once a week. He missed school every Thursday for a few weeks in a row, He also had one incident of a racing heart at that time. The doctor never found a reason for it and it eventually stopped. But now I am thinking - was that Lyme? I am curious if your twins are identical or fraternal. This could be really interesting to a researcher if these symptoms do turn out to be from Lyme! Elizabeth

These symptoms you describe here from birth also sound just like Aidan. We did not get symptoms that we were extremely worried about until he was 1 or 1.5 years old (don't a lot of babies have GERD or trouble sleeping?) At 1 or 1.5 we noticed a movement disorder and developmental delays and of course we had no clue to look at PANDAS/Lyme. But looking back there have been issues since birth that I think now were out of the norm. He had reflux almost immediately - still in the hospital and at times it seemed like spasms - not much different than a tic or an uncontrolled movement - a possible precursor to his abnormal movements?. Also the sleeping. He was my third kid and I knew about training them to go to sleep at night. usually when you train them to go to sleep on their own and they can sleep through the night you've got it made (or so I thought). With Aidan we had good sleeping for a period and then all of a sudden it was terrible. We also had frequent infections. I think it is due to all of these issues since birth that we are thinking congenital. We have only been working with the LLMD since Jan. but so far we are still on the antibiotics that we have used as a result of PANDAS but the only change is that we are using both at the same time now - azith and augmentin. We are doing a lot of testing and adding supplements before hitting harder but I do think we have had herxing. I have not been diagnosed with Lyme but I don't think it is out of the question as I have had some symptoms that I think could be Lyme and have had numerous tick bites (years ago but they were so common place for me and I never was worried about Lyme to really document when and where) I have also lived in many states and traveled to many places. I am also worried about my whole family (husband and other 2 kids) as I see symptoms that could be attributed to Lyme in all of us. I keep debating on testing the whole family and I think there are many reasons that I have not done it yet including: -trying to figure out who to ask to order the tests - I am not sure who would do it locally without thinking I am crazy, does anyone know if LLMDs will generally order tests for other family members that are not currently being seen by them. - doubt about whether the symptoms I see are actually possible Lyme or am I overreacting -We are so caught up with Aidan and taking care of his needs/treatments that I am not sure I am ready to delve into the possibility of us all possibly needing treatment -In comparison our symptoms don't seem that bad - is it worth it to think about it in the whole family or will controlling stress help us more now - the fear of positive results - will I have to go through treatment with others? will it be costly? will treatment stir things up and make something that is currently manageable worse? ...but positive results could support the possibility of congenital Lyme for Aidan.

Someone just posted a link to this publication on another thread but I thought it did a good job of explaining western blots on page 12. http://www.publichealthalert.org/pdf/2007_06.pdf

This probably won't help but these behaviors sound so much like some of my son's - there have been times I could have described the same exact behaviors. Just to let you know that you are not alone. The good thing is that you caught it and are treating it much earlier than us. I was just curious if you got a positive Lyme test and how long you think your son has had Lyme. I think I corresponded with you that we think my son's Lyme is congenital, he is 8 now and he was IGG positive by IGenex criteria. Aidan has never been able to function in a regular classroom so it sounds as if your son is much more functional then mine. I think it is possible that all or some of Aidan's behaviors/ developmental delays may be due to Lyme and it difficult to realize if he had been treated earlier for PANDAS/Lyme he might have had more of a chance. I was going to suggest that you check out the early intervention services in the your area but I reread the posts and noticed that you already did. The special ed preschool in our school district sounds like it would have been great for your son since they have special ed kids but also typical kids. Aidan got kicked out of a Mom's day out program when he was 2 or 3 for biting so we also know what it is like to have a child be kicked out of a program. Of course I couldn't argue - it just devastated me that he was hurting other children like this. The biting always seemed weird to me since it would always seem out of the blue but now I think we have an explanation. He kept doing it until he was in kindergarten and it greatly reduced when we did gluten free/casein free/soy free diet. But we still have behaviors like you are talking about that seem worse at some times than at others and they tolerate it at school since he is in a special ed classroom. I am so hoping that the Lyme treatments will eventually reduce all this. I just wonder how much of this is Lyme and how different Aidan would be if it was caught earlier! Lets hope that all these kids get the healing they deserve! Elizabeth

I want to PM you also regarding this.

This is very timely for us as Aidan is having an MRI this Tuesday. He is having the brain and pituitary gland done. I am curious if it will show anything. He has had MRI's done - one when he is 19 months which showed delayed myelination and one at age 5 which was normal (he is 8 now and we suspect congenital Lyme). I would not mind if there was something that helped confirm the Lyme diagnosis but I guess that there is a low chance of anything showing based on this article. One of the reasons that we are having this done is because some hormone levels were high amd our LLMD wanted to check pituitary gland. The endocrinologist was not that impressed with the levels of Aidan's hormones so he did not think it warranted the MRI but I since I think Aidan doesn't fit the mold on many things that I decided to go through with the MRI on the LLMD's recommendation.

My son is 8 and we think congenital. LLMD also suspects Bartonella although Igenex tested negative for it. I am sure the suspicion may be due to behavioral/neuro symptoms which he has had from an early age. The boot incident could have happened with us (then and now) and more. Doctor also thinks that this reddish mark under his eye may be due to Bartonella. It is currently on 250mg 1x day azith and 600 mg augmentnin 2 x day only on weekdays We think we had herxing when we started on azith and also when we went to antibiotics only weekdays (something about not having it on weekends brought on herxing). I also just noticed puplish reddish marks on his arm and buttocks that have showed up with the recent herxing. It seems similar to the mark under the eye to me. The herxing is behavioral for the most part. Our doctor suggested detox - epsom salt baths (maintenance once a week - more often now), decaf green tea (a cup a day maintenance - more often now) and prescribed deplin (a pharmaceutical name for methyl folatate) which I think is a B vitamin. This week seems to have been a better week since we started adding these things in. I wish we had caught this earlier! Elizabeth

Here is the link http://www.lymefamilies.com/my_articles/

I am in NE Ohio and I have not found a LLMD. I travel for it. Feel free to PM me or call - i will PM you with my phone number. I would like to hear if you find any resources here locally. I am not sure there are too many Lyme literate people or doctors around here in general around here but perhaps I just have not found them yet. I am assuming that you know about the PANDAS support group in our area? there is a meeting on Thursday at Paneras on Howe rd in cuyahoga falls. I plan to go. Elizabeth

We are still waiting to dive fully into our Lyme treatment LLMD wants us to do a couple of things to prepare Aidan first (that is for another post(s)!) But, he is on augmentin 600 mg 2x a day and azith 250 mg 1x day. He was on these more for his previous diagnosis of PANDAS and also a sinus/ear infection he had a couple of weeks ago. The PA (physician,s assistant)that we see at the LLMD thought he was doing well on both so to stay on them but to give them only on weekdays. So, Aidan has gone 2 weekends without antibiotics (Feb. 19 and 20) and (Feb 26 and 27). I have noticed in each of the 2 weeks after these weekends that he has had a trend of having a good day Mond,. Tues, and weds but when he gets home from school on Weds his behavior goes south. Thurs. and Fri. are very bad days at school behavior wise and it starts weds night. There is pinching, grabbing people, ripping things off walls, ODD, etc. (He is in a special ed room and these are behaviors that we have had in the past but they wax and wane and they seem especially bad during the end of these 2 weeks.) He seems "off" to me durng these times. I also have noticed physical symptoms of passing gas, red ears. The first Weds night I also noticed a rash in the shower that was the size of a quarter next to his inner elbow that was red and looked like he scraped it. It went away before I could snap a photo. Has anyone heard of taking weekday only antibiotics? Do you know the reason for it? I think the PA tried to explain - I don't totally grasp. Do you think the cycle is related to this antibiotic schedule? How would they be connected?

Sounds like my son a lot. He did not respond to stimulant ADHD medicine. He did have a positive response to gluten, casein, corn and soy free diet. My son was diagnosed with PANDAS (high strep titers) without the classic sudden on set - I think it was just early onset and it was not caught then - many infections including strep at an early age. But he also tested positive recently for Lyme. I would recommend looking into both Lyme and PANDAS and other infections/immune system issue before going the psych route.

Glad you bumped. I am willing to help if you want our story. We live in Ohio (Akron/Cleveland area) as far as I know we are not a top Lyme state but I think that is even more reason to get the story out - as people here may not even think of it as a possibility. Although I know a kid in our community that got the EM rash this summer after attending the local boy scout camp and was treated fairly quickly - I hope it was enough! Aidan (8 years old) was IGG positive by IGenex criteria (bands 41 and 83-93)so I guess that is my hesitation that it was negative by CDC criteria. If his IND counted he would have been IGM positive by either criteria. We are thinking congenital Lyme as we had multiple symptoms since at least 1 year old and in hindsight since he was born but I have not been tested or treated yet. But I have lived in several states and travel a lot so who knows where we picked it up. I also would be more confident to get our story out if we were further into treatment and to see if we had success. As someone said in a previous post I am a little concerned that I would appear to be a crazy Mom but I may be willing ot risk it. Just not sure if the time it right.

Isn't ANA another infection and/or a coinfection?

I am pretty sure that we also go to the same local PANDAS doctor as you Dr R., correct? (I recognize her prophylactic protocol). We were actually seeing her for neurology before the PANDAS diagnosis. She did not diagnose my son with PANDAS - a DAN doctor in the area did but she is knowledgeable about PANDAS. Now our case is very complicated and Dr. R. wasn't sure if Aidan had PANDAS since it didn't appear to be sudden onset (it was probably early onset as to why we didn't catch the sudden onset!) I felt the treatment that I was getting from her and our DAN doctor was not enough to help Aidan when we tried to stop the azith in Aug. and had a major exacerbation I felt I needed to go elsewhere. I first had a phone consult with Dr. K. but then I realized that I was really concerned about Aidan's immune system issues based on low IGG levels so we ended up taking him to Dr. B. since he was an immunologist (and he was covered on our insurance). After the first visit with Dr. B we got our IGenex Lyme results back which gave us a IGG positive by Igenex criteria. So, we ended up taking Aidan to a LLMD. Anyway I met with Dr. R.regarding all of Dr. B's recommendations and the positive IGEnex testing and she is still on board with us and in fact she is willing to collaborate with the LLMD. So, I am thinking that maybe you should ask Dr. R. if she will order the Lyme test I would recommend doing it through IGenex. I think it is possible that she might do this. Dr. R. was also very interested in the Cunningham test results that we had and seemed like she wanted to find out more about this. Feel free to PM me with more questions about all the doctors that we have been to. I will PM you and give you my phone number as that may be easier. Are you aware of a PANDAS support group in our area that I believe will be meeting on March 10th? Elizabeth

I have also wondered if could was from reflux as another possibility for my son. My son is taking all liquid medicines which I wonder if that contributes to raspiness/possible reflux. Also, we were trying the supplement NAC with Aidan - I was wondering if that caused it for him since that was something fairly new. I have since stopped giving that supplement to Aidan since I wonder if it may be causing that and a blip in negative behavior we had last week. (of course that could be a herx also.)

My son also gets a raspy voice. He got it really bad right after he started azith a few weeks ago then he went into a full blown illness with a lot of nasal drainage and ear infection. We put him back on augmentin in addition to the azith and that cleared up the drainage and ear but every once in a while I still hear a slight raspy sound in his voice. I have wondered if it is related to the azith. and if it is a herx.