dabel
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Posts posted by dabel
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It is cheaper to just treat the dogs than to test them. This is what our vet told us when we looked into it.
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Oh boy! The endless debate on this issue is so hard for us parents! My son had HD IVIG in Dec 2009 with Dr.K. This doctor believes that one HD usually does the trick. My son slowly got better after this treatment. We thought we may have finally kicked this thing! The problem was when he would get a bug the symptoms would come back to one degree or another showing that his immune system was still not working properly. He started slipping again this fall after a minor bug. Now we have changed doctors and the new guy did HD about 4 1/2 weeks ago and then 1.0 g/kg 1/2 week ago and wants to continue to do the 1.0 every four weeks for a long time. My son got worse after the HD 4 1/2 weeks ago. We did not see a regression like this with the last HD. It is sooo frustrating trying to figure out what is right. I have hope reading that your son did better on the monthly 1.0 g/kg. I was told that this is not considered LD just lower than the other. There are many children that get much lower doses on a regular basis. How long did you do the lower dose and how long was he off the IVIG schedule before you saw a problem. I really wish there was a standard protocol for these kids. Sometimes I feel like everyone (including the doctors) are guessing. I have no words of wisdom for you as I am struggling with this myself. I can only share my story and let you know that you are not alone in trying to figure out what is indeed the right thing to do!
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Thanks RNmom!! This is why I find this forum so helpful!
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My ds14 had the My Lyme ID test thru Neuroscience when we consulted at the National Integrated Health Associates here in Wash. D.C. I was told that the test exposes the blood cells to the Lyme and then they measure the cytokine response. It is supposed to be very specific for Lyme. They chose it for my son because it is a good test for patients with poor immune systems who may not be able to mount an antibody response to the Lyme. He had three "equivocal" bands out of a possible five. Also, the list of cytokins had many positives that were very high.
Here are the explanations for our son's results that came with the test:
"Lyme ITT Equivocal Response / Cytokines: Elevated Response
The results of the Lyme ITT suggest possible exposure to Lyme-specific antigens. Patient results should be considered positive when multiple Lyme antigens have an equivocal stimulation index. The results of the cytokine test suggest an activated immune system (inflammatory response). Results may be suggestive of an early stage of Lyme disease. If symptoms and history are suggestive of Lyme, further testing for Lyme and co-infectious agents may be necessary. Immune support and intervention should be considered if Lyme symptoms exist. A retest is suggested in 3-4 weeks."
The following info. came as an explanation of some of the different tests included in My Lyme ID:
"BACKGROUND INFORMATION:
Lyme disease is an infectious inflammatory disorder caused by the bacterium Borrelia burgdorferi... [it's] success rests in its ability to evade or hide from a host's immune system."
"Lyme ITT
The Lyme Immune Tolerance Test (ITT) measures the body's cell mediated immune response to Lyme-specific antigens. In contrast to antibody medicated Lyme tests, including Lyme ELISA and Western Blot, Lyme ITT specifically targets the Type-IV delayed immune response to Lyme antigens. The test procedure exposes isolated white blood cells to Borrelia burgdorferi (Lyme bacteria) specific antigens. Previous Lyme infection will induce memory T-cell proliferation and /or changes in cellular morphology, which is measured as a Stimulation Index (SI).
Note: Cross-reactivity may occur with other spirochetal diseases."
"Cytokines
Cytokines are the chemical messengers of the immune system and serve as markers for inflammatory processes. An encounter with physical stimuli (i.e.: bacterial, viral, fungal, parasite infection) challenges the immune system. In response to physical stimuli, immune cells secrete cytokines as a primary defense mechanism. Elevated cytokine levels may be an indication of an active immune response to a physical stimulus."
We also consulted with a LLMD earlier this week. He is familiar with both My Lyme ID and Igenex. He dx our ds14 with Lyme and made some aggressive changes in the Lyme treatment plan. He also ordered an Igenex Western Blot. It seems appropriate in light of the equivocal bands and the fact that even My Lyme ID recommends further testing. Additionally, with the possibility of "cross reactivity" with other spirochetal diseases I think it is prudent.
Does anyone out there know what other spirochetal diseases might be at play here? Would yeast (Candida) be one of them? My ds has a big yeast problem that we are currently fighting with the help of the LLMD.
As always, I hope this is helpful...
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Here is a link to the brochure. It explains this way better than I could. From what I understand this test looks at the lyme specific inflammatory responses vs the antibody response.
Here is the link. You can just copy and paste it.
https://www.neurorelief.com/images/Testing/Specsheets/mylymeimmuneid.pdf
It appears that different levels will be elevated at different points during the infection process. Some are elevated in the early stages and some later. So this helps to estimate at what point in the process an individual is at. This is the way I understand it anyway.
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FYI - This test is part of the My Lyme Immune ID test by Neuroscience.
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I spoke to Neuroscience and they said that my son's cytokine test lit up like a Christmas tree. They are still waiting for the results of the Western Blot. I asked if this indicates that he has Lyme's and she said yes but you need the Western Blot for diagnosing Lyme's. Have any of you had this test and if so were the cytokines high along with a positive Western Blot? Or can the cytokines light up and the Western Blot still negative?
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I have also heard good things about this lab. Five of our family members just did a ton of testing with them but we are still waiting for all of the results to come in.
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I am so sorry that your son is going through this! I am also sorry that it takes so long to get these kids properly treated. I have to say your child sure sounds like PANDAS. My son had a lot of pain with his biggest exacerbations but not quite like you are describing. My child also hallucinated! It is so sad to watch your kid go down this path! Antibiotics are a must!!! I recommend you get him to one of the well known PANDAS doctors. You are lucky to have caught this early and hopefully they can get things turned around quickly. Some of us go years wondering what is wrong. As far as titers go....some kids' titers don't even go up. Your son's antiDNase b is quite elevated....I'm not sure that doctor knows what he is talking about as far as that goes! This forum is full of great people who will guide and support you on your journey. I am sorry that you are here but it is a good place to be when you need it! Hang in there and educate yourself!!
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My oldest son spent some time at my brother's house years ago. My brother commented that my son was going to have a bald spot earlier than him. At the time my son was about 8 yo and I thought my brother was full of it. It wasn't real obvious to me at that time. Then I received a call from the principal and he mentioned a bald spot on my son and that I should get it checked out since there are medical conditions that can cause this. When I looked this time sure enough there was a bald spot. I freaked out thinking he had alopecia. I took him to the doctor and they did a scraping etc. As it turns out, he was slowly and methodically tugging on the hair in this area like a nervous habit or something. As soon as we got him to break the habit it was fine. At the time he was having other issues as well. I am sure that this one also had PANDAS type stuff but was not severe and it was before anyone knew of this disorder. He changed after an illness at three. I am happy to report that he must have out grown this and is okay now! He is in his second year of college and besides some ADD he is doing well!
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I thought about you all night and I am sooo relieved to see that you are alright!! Hang in there....things are going to get better! I will continue to pray!
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I do not know you but I want to say that things WILL get better. I have pulled my son from the brink in the past. I have seen first hand how mentally devastating these infections/disorders can be. I have also seen how with the proper treatment people get better!!! You will get better too!!! I know it is hard when you are in that trough but you have got to reach for the side, hold on, and pull yourself up! Not for just you but for your family! I am praying for you!!!
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My husband's work just switched to United Healthcare on Sept 1st. My son just had hd IVIG last week and we had NO problems getting it covered! The nurse said it was the fastest turn around time she had ever pulled off... from initiation to treatment was 14 days. We did not have to try to find a way to get it covered as PANDAS is listed on their list of approved uses for IVIG! What a change! Last December we paid $15,000 and did not get any of it back! We are actually approved for monthly (don't know that we are going to do it) through the end of the year. I am happy for you! It is so nice not to have to stress over getting this covered on top of everything else!
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All three of my PANDAS kids have had years of speech therapy. The first one was classified as severe and was given the typical therapy for omissions/substitutions for two years with not a lot of progress so I told the therapist that she was nice and all but I was going to go elsewhere since we were not seeing results. At that time she decided to look into apraxia. Once his therapy was changed the progress was amazing!!!! The therapist was amazed and so was I. After another 2 years or so and he was discharged from therapy!!! My next one in age lost his speech at age three with what we believe was his first exacerbation. He lost all annunciation. His speech problem fell in the profound range. His therapy also included some stuff for apraxia. He is now 11 and still in speech therapy but doing very well. The youngest has also been in therapy for years (since age 3). His problem was considered severe. He started at age three and is now 10 and his therapy also included stuff for apraxia. He is doing well also. So...all three of my kids are apraxic. From what I understand this is quite unusual. I am just thankful that they are making progress. I missed most of that cute stuff they say when they are little because even I could not understand a lot of what they were saying. I definitely think that this is linked to PANDAS.
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Both mine are....my youngest is off the charts....and, he was the most affected by PANDAS.
That is interesting to me. All of mine are too. I have four boys. The one who is severely affected has ceiling out on a lot of the tests he has been given etc. The others are gifted but not to the degree this one is. He has been at the post high school level in many subjects for years. They wanted to advance him a full grade level this year after he was returning to school after being gone for about two years due to this debilitating illness The mind is a fascinating place.. Anyway, I found your comment interesting!
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Bless your heart! This would have saved us thousands!! I think we paid $120/gram. If I was not personally involved in the fight to get our kids treatment, I would not believe what parents have to go through to get their kids the help they so desperately need!
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I guess that is a good question. I wish we had made it to 18 months!! I have been told that it takes a full year for the brain to heal and all of the blips associated with this disorder to fade. I personally have not been told that once you make it x amount of time you are safe. I just don't think that any of the doctors truly know for sure but I would guess the longer you go the more you can relax. I was somewhat relaxed but still on alert.....he was doing so well!!! We are having our second IVIG about 11 months after the first.
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I am sooo sorry to hear this! I do want to chime in here though. My son had IVIG last December and he experienced a slow progression to better. He got an infection (suspected MRSA) in the spring and we saw the PANDAS stuff coming back. We added double strength bactrum to his 875 twice/day Augmentin and it seemed to stop the backslide in it's tracks. We had seen a couple of issues earlier due to exposure. To me this showed that My child's immune system still goes awry when it is challenged. When I asked Dr.K about this he told me that just so long as he responded to treatment he would not worry about it. My question to him was how do you treat a virus if he got one. Well sure enough after returning to school for the first time in two years My son got a little virus. Like you mentioned it was not a big deal at all. He missed one day of school because he was tired and sore. Sure enough a week later here we go downhill. My pediatrician put him on a 20 day steroid taper to keep the really bad stuff from taking hold and to buy us some time. I contacted Dr.K and he said that if a virus did this to my son then it was obvious that he needs another IVIG. I do not have the money upfront for the IVIG as we did not get any of our money back last time and no help to get it either but that is another story. I found a doctor here in SE Wisconsin that is good about getting IVIG covered and just got the call about a 1/2 hour ago that we are approved and good to go!!! So second IVIG here we come! So in short....yes we had the same thing happen here. Dr.K said if the child is going to relapse it is usually at 9 - 15 months post IVIG. It is so sad to see especially when you have finally witnessed your REAL child and how cool they are when healthy!
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Oh boy Dawn! I can read your mind from afar after reading the replies here!! I am here for you and keep in mind that your are battling REAL bugs here. You have the tests to confirm it and on the other side of this nightmare your sweet, compassionate, loving, and adorable son will thank you for being such a wonderful and determined mother!!!! The third song is absolutely beautiful by the way!!!! I love it....Thank you!
DeAnn
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My 13 yo son - 140 lbs is on a 20 day taper
60 mg 5 days
40 mg 5 days
20 mg 5 days
10 mg 5 days
This is through our pediatrician not our PANDAS doctor to try and help with his recent setback. It has taken the edge off but has not been a miracle yet - we are 10 days into it. Hope this helps.
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Amyjoy - Thanks for the lab info. I thought I recognized the name. My friend from high school actually works there. What a small world....I am going to give her a call tomorrow!
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It looks like the co infection tests are going to need to be done. I have three kids with this. My older one that I am referring to in this post does not have symptoms of Lyme's so to speak. One of my other boys is a mess right now (totally different presentation though) and he does show many signs of Lyme's or something else. It is hard to keep coming up with the money up front for all of this. I can not wait until this changes for those who come after us!!
This forum is so nice and I want to thank all of you for your input and suggestions!!!
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Doug,
I have no words of wisdom. All I can say is that after 10 months my son is now slipping too and I know just how you feel! It is so hard to watch - especially when you have seen how they CAN be and you think you had it licked. This is hard on the kids too. They now (or at least mine) know what it is like to feel good or 'normal'. I am thinking of throwing in the towel on the school thing too. My son has missed 2 1/2 years of school due to PANDAS. I have always wanted to get him back in but now I am thinking that it probably is too risky for him after seeing what a very mild virus has done to him. He did go this year but has missed the last week and a half because of his PANDAS symptoms returning. Hang in there and keep fighting. If I find a money tree I will share it with you!
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Jag - He also had a little virus in mid-August but seemed to hold his own through that one. In May he had a bad staph infection and was not reacting well to it. We put him on Bactrum along with the Augmentin and it cleared quite quickly. Dr.K does not know the titers yet.
He has never been on a different abx - always Augmentin as that is Dr.K's abx of choice but I do wonder if we should switch to Zith or something.
Mom md - That is interesting and would make sense. I will have to look into that further. I still do not understand why the ASO remains unchanged after two years though.
Wornout mom - I have been thinking about you guys too. I would like to chat. Sometimes I wonder if trying to get our kids back to 'normal' life is the right thing to so. My goal has been to get my son back to school with his friends doing the things that kids his age do. Am I just sending him into a germ pit that he can not handle at this point? Dr.K says you can not keep these kids in a bubble. Based on what I have seen with my kid maybe I have to. He was doing sooooo good and then down he goes. This bug wasn't even a bad one - some minor body aches and tired.
Elizabeth - We are thinking about doing the Igenex testing. We have to come up with a bunch of money to get all the kids tested! Atleast we have United now. I think they cover IVIG for PANDAS. The last IVIG cost $15,000 and was not covered.
Thanks for all of your input....
I HATE PANDAS/PITANDS/WHATEVER!!!!!!
medical records show strep 19 times in 36 months!
in PANS / PANDAS (Lyme included)
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I do not know a lot about Lyme yet. I am learning and it can be quite complicated. I do have one child that has it for sure with others that are suspect and we are waiting for test results. My son was in many times over years with complaints of joint pain, eye pain, etc. Now he is having central nervous system symptoms and it is frustrating that this was missed for so long! The testing through the clinic sucks! He has tested neg there twice. I recently read a thing posted on the Lyme forum that was written by Dr Ann Corson - pediatric lyme specialist - that only one species specific band needs to be present to demonstrate exposure to bb therefore confirming a clinical diagnosis of Lyme disease. The bands I noted are...18,23-25,31,34,39,83-93. The band you mentioned is one of these. There are many other mother's here that know much more than I about this since this part of our journey is new. I am sure some of these other parents will chime in as well but I just wanted to share this info as I found it helpful.