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dabel

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Posts posted by dabel

  1. It is funny that you posted this question because I just logged on to ask the exact same thing. My 11 yo son has tested positive for HHV6 virus and the doctor has recommended that he take Transfer Factors to help fight this and boost his immune system. What I read does say that it will cause an exacerbation in symptoms. I am anxious to see what people say about this.

  2. I know of two people whose kids reacted very poorly to the steroids. It did cause their kids to go in to a psychotic state. The one child kept repeating "Packers Suck" for a week straight. He said nothing else and was absolutely checked out. He came around after the steroid was stopped. And FYI - I am from Wisconsin and the Packers DO NOT suck!!!

  3. One of my children has had heart palpitations. He has also complained about balance issues. Maybe he means he is lightheaded. He tests negative for Babesia but since he is getting some night sweats the doctor is scratching his head on this bug. I guess night sweats are very common with Babesia. The doctor never said that the palpitations were due to anything other than Lyme and they are gone after three months of treatment. Oh, this boy is 11 and has PANDAS too.

  4. Thanks everyone! I know that you all know how nice it is to have people out there (even if it is in cyberspace) that can relate to you! Wornoutmom....You got me! I read that in tears. I know that you know what I feel. Not that the rest of you don't. It is just that I have personally spoke with wornoutmom. Your suggestion is what I did when we first went down the PANDAS path. At that time explaining to him what was happening and that I understood that he was sick etc etc worked. This time he is really out of reach on this subject. He does not care anymore. He will not acknowledge that there is any thing wrong with him. I wish he was five again (that is when he really crashed) and I could force cooperation. Now I will have to resort to bribery as suggested by one of you. I am willing to open my checkbook. Heck I am willing to sell my house to help him if need be. I might have to do that if the medical bills don't stop rolling in. :o) The problem is he is not too open to bribery right now because he is tired of the whole thing. Literally. I am not going to give up though!!! I will fight with all I am and all I have to help this child! I wish that there was a hospital for this! There is a hospital about 2 hours north of me that is actually going to be opening a Lyme's wing! I need that now! Where there is a will..there is a way. I have got the will, now I just have to find the way....

     

    I LOVE the brown blob of paint analogy! I will never think of all this without seeing that blob....it looks a lot like a big pile of sh*t....and it feels like I am digging my way through a big pile of sh*t and have been for years. It really stinks after a while!!! Hope I didn't offend anyone.

  5. *

    I have been on the fence whether to share this on the Pandas board as I did on the Lyme board. After speaking to someone from this forum today I have decided to post it here also. This is not to start a debate as we have seen take place on the forum from time to time. This is just to share our story in hopes that it can help others so they can find answers sooner than we have. Our quest to "cure" our child started eight and a half long years ago. He has been in and out of the psych ward, to more specialists than I can count, had every type of test run on him that we could think of, been put on psych med's, etc After all of that our son was still debilitated. Seven years in to it we met with one of the big PANDAS doctors who told me that my son's case was so clearly a PANDAS case that it was boring. As it turns out, this is not quite correct. Does he have PANDAS? Yes, he sure does but what is keeping him from making a full and lasting recovery? Please read our experience as it may help you to help your children. Again, this is not to start a debate. I am just sharing to help. This forum is made up of a lot of wonderful people who share a common goal....to heal our children.

     

     

    * Group: Members

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    * Joined: 21-October 09

     

    Posted Yesterday, 02:55 PM

     

    Okay. We have all read the rather lengthy thread on all the positive Igenex tests etc. I have to admit that I too have thought about how all of these people can be coming up positive and hopping from the PANDAS board to the Lymes. I think we have to keep in mind that the people who are sending their blood in for testing are not just Joe Blow off of the street. These are people (kids and adults) who are struggling and searching for answers and most have not responded properly or for long term to typical PANDAS treatment. We all want to know what it is that we or our children are battling. Most of us thought we had it figured out. When we got a PANDAS diagnosis we thought....well, it is about time the mystery is finally solved after years of watching our child suffer terribly! So we ventured in to this new world with new found hope for our childs future. Before this there was not much hope as we thought he would not live through his teenage years and we were desperate to help him. We started high dose long term abx, and high dose IVIG. Over about a six month period following hd IVIG God returned our beautiful child to us! He started school this fall for the first time in two years. He even joined the cross country team which was HUGE! He had not been involved in anything for years. His first meet I sat and watched with tears streaming down my face. He was interacting with his team mates, cheering them on, and just being a normal thirteen year old boy. This is what we have wanted. This was all we had wanted. We just wanted him to be able to function as a normal boy. He was doing well in school. There was no fighting every morning to get him there ... heck he was up getting ready in the morning before I went to wake him up. Life was good!!! Then he got a little virus.... nothing major. He missed one day of school but a week later here comes the black cloud again. I quickly panicked and we threw him on a steroid burst to try to head this monster off before it took hold. This did perk him up to a degree but still not good and very temporary. Then we got approved for monthly IVIG and thought this would pull him out....he got worse. I lost my son again! He has had to go stay somewhere else because he can't function within the family and was not here for Thanksgiving or Christmas.

     

     

    A specialty lab decided to do a case study on my family because I have four children who have had illness induced changes. This child comes up with chronic gram negative bacterial infection, chronic gram positive bacterial infection, chronic fungal infection, and chronic viral infection. I am a true believer in the fact that at the end of the day it is nice to know what you are battling but the bottom line is most of these kids are battling chronic multiple infections that tax their immune systems. Each bug makes it all the easier for the next bug to set up shop. He has strep that we have not be able to eradicate with long term high dose abx and three IVIG's. Mycoplasma. Lyme. Candida. Etc... We have not tested for co infections yet but I will guarantee you he has those too. My point with all of this is the reason that a lot of these kids are coming up positive is because they are the kids that have not gotten better or did not stay better. Why? Because so much more was going on that needs to be addressed before there is complete healing. I thought I had three and possibly four PANDAS kids. What I have is three possibly four kids with chronic multiple infections....Lyme being one of them. Oh yeah....and I just found out that I have it too. We all present differently.....some can function and some can not. What I know is that all need to be treated with a combination of things to rid them of the combination of bugs that are assaulting their systems. This can be a very serious situation and can be without a doubt in my mind life threatening as is the case with my one son. I pray I can get him better before I loose him!

     

    Sorry for the rant or pouring out of thought. Maybe I just had to write.

  6. I want to thank you all for your kind and encouraging words! I hate the fight too. The goal for us all is the same and that is to heal our suffering children! If any of you have dealt with an older non compliant (due to depression and just plain does not want to be here) child I would love to hear any suggestions to get him on board long enough to lift the black cloud so he wants to get better. We have been down so many roads with him and he is sick of it and I really don't blame him. He is tired of putting all of this stuff into his body and it doesn't work anyway. I need him to hang on long enough to give this new approach a try in order to give him back his life. I am seeing a Lymes doc on Wed for one of my other boys I am going to talk to him about this other child. What concerns me is that the medicine will not help him if he does not swallow it. I am also nervous about the whole get worse before you better thing. If he gets worse we have some REAL problems and I worry that he will jump ship as soon as he feels worse if I can get him to do it at all. I wish this was easy....but it's not.

  7. Okay. We have all read the rather lengthy thread on all the positive Igenex tests etc. I have to admit that I too have thought about how all of these people can be coming up positive and hopping from the PANDAS board to the Lymes. I think we have to keep in mind that the people who are sending their blood in for testing are not just Joe Blow off of the street. These are people (kids and adults) who are struggling and searching for answers and most have not responded properly or for long term to typical PANDAS treatment. We all want to know what it is that we or our children are battling. Most of us thought we had it figured out. When we got a PANDAS diagnosis we thought....well, it is about time the mystery is finally solved after years of watching our child suffer terribly! So we ventured in to this new world with new found hope for our childs future. Before this there was not much hope as we thought he would not live through his teenage years and we were desperate to help him. We started high dose long term abx, and high dose IVIG. Over about a six month period following hd IVIG God returned our beautiful child to us! He started school this fall for the first time in two years. He even joined the cross country team which was HUGE! He had not been involved in anything for years. His first meet I sat and watched with tears streaming down my face. He was interacting with his team mates, cheering them on, and just being a normal thirteen year old boy. This is what we have wanted. This was all we had wanted. We just wanted him to be able to function as a normal boy. He was doing well in school. There was no fighting every morning to get him there ... heck he was up getting ready in the morning before I went to wake him up. Life was good!!! Then he got a little virus.... nothing major. He missed one day of school but a week later here comes the black cloud again. I quickly panicked and we threw him on a steroid burst to try to head this monster off before it took hold. This did perk him up to a degree but still not good and very temporary. Then we got approved for monthly IVIG and thought this would pull him out....he got worse. I lost my son again! He has had to go stay somewhere else because he can't function within the family and was not here for Thanksgiving or Christmas.

     

     

    A specialty lab decided to do a case study on my family because I have four children who have had illness induced changes. This child comes up with chronic gram negative bacterial infection, chronic gram positive bacterial infection, chronic fungal infection, and chronic viral infection. I am a true believer in the fact that at the end of the day it is nice to know what you are battling but the bottom line is most of these kids are battling chronic multiple infections that tax their immune systems. Each bug makes it all the easier for the next bug to set up shop. He has strep that we have not be able to eradicate with long term high dose abx and three IVIG's. Mycoplasma. Lyme. Candida. Etc... We have not tested for co infections yet but I will guarantee you he has those too. My point with all of this is the reason that a lot of these kids are coming up positive is because they are the kids that have not gotten better or did not stay better. Why? Because so much more was going on that needs to be addressed before there is complete healing. I thought I had three and possibly four PANDAS kids. What I have is three possibly four kids with chronic multiple infections....Lyme being one of them. Oh yeah....and I just found out that I have it too. We all present differently.....some can function and some can not. What I know is that all need to be treated with a combination of things to rid them of the combination of bugs that are assaulting their systems. This can be a very serious situation and can be without a doubt in my mind life threatening as is the case with my one son. I pray I can get him better before I loose him!

     

    Sorry for the rant or pouring out of thought. Maybe I just had to write.

  8. HI - I came across this site called "Advocacy for Patients With Chronic Illnesses". It looks very interesting and they have some good ideas for advocacy in general...

     

    http://www.advocacyforpatients.org/index.html

     

     

     

    They also have a specific section on IVIG and appealing IVIG denials. They do not have examples for PANDAS, but perhaps someone from this forum would be interested in working with them to do that Amyjoy - could this fit in with what you are doing?

     

    http://www.advocacyforpatients.org/hi_ivig.html

  9. HI - I came across this site called "Advocacy for Patients With Chronic Illnesses". It looks very interesting and they have some good ideas for advocacy in general...

     

    http://www.advocacyforpatients.org/index.html

     

     

     

    They also have a specific section on IVIG and appealing IVIG denials. They do not have examples for PANDAS, but perhaps someone from this forum would be interested in working with them to do that Amyjoy - could this fit in with what you are doing?

     

    http://www.advocacyforpatients.org/hi_ivig.html

  10. All of these ranges on all of the various blood tests, keep in mind they are just made by some number-crunchers looking at ranges of what is typically seen. It is not good to assume that inside the range is healthy and outside the range is unhealthy, and everyone's view of healthy is different anyway.

     

    Things I have heard about the numbers, from people who focus on lyme disease:

     

    - when a score increases to 100 or more following treatment, it is a good sign that you may not relapse if you stop treatment, versus lower may indicate likelihood of relapse (I personally stopped treatment below 100, saw it go up the next month, but then way way down the following month, so it can lag as the buggies may take time to grow and weaken you)

     

    - a score of around 200 is more an indication of being healthy, at least with respect to lyme

     

    - a score below 60 may indicate you also have mycoplasma pneumonia

     

    - a score below 60 indicates you are particularly struggling healthwise

     

     

    Thanks Michael. What you wrote is interesting ...... both of these kids have recently tested positive for myco. Hmmmm

  11. Okay - I have also had to hop over from the PANDAS forum. I am trying to understand cd57 levels. So far two of my three PANDAS boys have been tested and I have been told that their results are low. One of these guys is now being treated for Lyme and I pray to God that the other does not have it! To treat him would be a nightmare! The one has cd57 of 63 and the other 60. Initially I was told that the 60 kid was in normal range and now after seeing a Lyme doc I am told this is low. He said they want it at 150 at the end of treatment. Based on the expected range they are both within the normal limits which is 60 -366, they are low end but still in range. Can someone explain this to me. I have researched it and still have not found the answer that I am looking for.

    I PM'd an article that I saved on my computer. Hopefully it goes through. I believe it has test result information that was interesting and surprising. It said that a low score can mean Lyme (Borrelia), Chlamydia pneu., or herzing. My ds # was 25! The Dr. said she had never seen one so low, but my son had been off abx for 1 week so not sure if he might have been herzing. She also said "she had never heard of chlamydia" causing low #'s. She had just diagnosed him with chlamydia and mico. right before we discussed his test results - go figure! Let me know if you do not get that article and I can try to send it another way.

     

    Best wishes.

     

     

    Thanks - I got it! Hopefully it will clear this up for me.

  12. Okay - I have also had to hop over from the PANDAS forum. I am trying to understand cd57 levels. So far two of my three PANDAS boys have been tested and I have been told that their results are low. One of these guys is now being treated for Lyme and I pray to God that the other does not have it! To treat him would be a nightmare! The one has cd57 of 63 and the other 60. Initially I was told that the 60 kid was in normal range and now after seeing a Lyme doc I am told this is low. He said they want it at 150 at the end of treatment. Based on the expected range they are both within the normal limits which is 60 -366, they are low end but still in range. Can someone explain this to me. I have researched it and still have not found the answer that I am looking for.

  13. It IS so hard on THEM! And I forget that sometimes because I am so confused and angry and tired of being yelled at, and tired of not knowing/understanding the rules of her OCD. But one day she told me how, if she has a saxophone lesson, which happens after lunch in school, she has to remember to buy lunch because that is faster, and line up early to go to the bathroom to wash her hands, which takes 10 minutes because of OCD, then hurry straight to her lesson without going to her classroom first, because by then she is always late, etc. etc. It's so much for a 9 year old to have to worry about, and that is just one small part of her day. She hates to talk about being sick, or hear about it, or think about it. And there are others so much more ill than she is. My prayers go out to all of these helpless, innocent kids. They are so undeserving of their plight.

     

     

    It is hard to keep in mind what they are going through when they are trying to physically and verbally destroy you. In a recent conversation I had with a dear friend, who has children with this also, I told her that it helps me to picture them with a big gapping wound in thier forehead. Otherwise, on the outside they can look normal but the brain is so wounded!

  14. I just had my son in to see a LLMD yesterday. He has PANDAS, Lyme, and we are waiting for the results of the coinfection tests. This doctor wants my son to have IVIG ASAP. This doctors assistant is getting monthly IVIG as well. He really believes it helps. My other son (has PANDAS and we are waiting on the test to come back for Lyme) got HD IVIG a year ago and slowly got better. He got a little sick this fall and and went down hill quickly. He had HD IVIG six weeks ago and then a lower dose (1.0 g/kg) four weeks later. He got worse after this last high dose and seems to be doing a bit better after the lower one. Although, he is at a relatives right now so it is hard to tell how he would be doing if he was with his family as his YUCK is usually directed at us (especially me). So...I guess the question remains unanswered but I thought I would share our experience.

  15. Oh, to address your second question we did see regression that far out and farther. It was due to exposure a couple of times and was short lived. Then he got what they believe was MRSA 5 months out and the regression was more but went away by adding double strength Bactrum to his 875 2x's/day Augmentin. Then at 9 months he got a mild virus and that's all she wrote. This was in September and with IVIG and change in abx etc we are still trying to get back to where we were.

  16. We have been treated by Dr.K and just recently (in the last two months) he said that my son obviously needed another IVIG. He did not say booster and we did get another at the 1.5 dosage. This is the second time I have heard of this booster IVIG ...... another mother mentioned it recently. I am curious what this is also. It must be something somewhat new to the approach that he is taking.

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