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Everything posted by LindaMW

  1. I need help in understanding what is all involved with a medical excuse from school. My son is currently waiting for the Igenex WB results. We are pretty sure he is dealing with lyme, maybe bart also. He has missed the whole first month of school so far and I have a medical note explaining all this. The school keeps pushing us to get him in to school. I am confused because I thought the medical note explained all this and is excusing him from school temporarily? I have picked up work from his teachers and he has pulled things off their online school program. I have also returned the work he has finished, so they at least have some stuff to grade him on. This is just a temporary thing until we know what we are dealing with and how to treat it. Why are they pushing and what are our rights? We are in Pennsylvania Thanks
  2. I first found this board back in 2011 and it was a life saver. I have learned so much for all you awesome parents. If it wasn't for this board I would not have pursued lyme which ended up being my sons issue. After finally getting the right diagnosis in 2013 we started treating lyme in 2014. Spent at least 10 months on doxy, then mino and biaxin combo. Started Buhner's herbs half way through that treatment. I would say he is 90% better but still has not returned to school because of anxiety. At least he is able to do school work and play sports and has a happy wonderful disposition again. Then during the school year last year his older brother started getting sick every month on a cycle. Full blown cold, flu, body aches, fever. Lasted about 4 days would get better and return to school. I went to the doctor over the summer and they really did nothing. So this school year starts and he gets sick the second week, same symptoms but this timed followed with severe anxiety and he has not been back. So here we go again. First thing I did was have the doctor order the WB. We are still waiting for the results plus some other blood work. Funny thing on top of that, my husband runs into a friend of ours who teachers at the local high school were my son goes or did She said that between this year and last year they have been dealing with an overwhelming, more than usual, case of kids with anxiety in all the grades. Then on top of that the CDC has said this part of Pennsylvania has the largest number of cases of lyme disease they have ever seen. So is it coincidence or am I losing my mind? The latter is possible since I have been living this for the past 4 years and am about to go down that road again I know people have said in the past they wish those who have gotten better would come back and share their stories. Even though we are not there yet, we are close and know how to handle this with our other son now. Stay strong and keep researching, that has been what worked for us. And stick with this board, they know what they are talking about.
  3. We always saw a flare up when he was losing teeth. It was really bad for about a year when the rest of the baby teeth seemed to be falling out every couple of months. Now that he has been treating the lyme, (all the other stuff happened before we had the lyme diagnosis) he is currently getting his 12 year molars and I am not seeing any flare ups. I also heard one of the doctors mention at a conference that teeth could cause this. Just keep close watch and see if things settle down after they come in. Good luck.
  4. I have just been thinking with all the symptoms my son has, how do we know if it is really all the lyme or does he still have Pans? Initally it started suddenly with a strep infection, classic pandas but we now think he had already been exposed to lyme two months prior to that. With all the symptoms of neuro-lyme being so similar to pandas/pans, how do we know? When and if we ever get the lyme gone from his body, will we be able to see how he responds when he gets sick again? I have noticed since we have been treating the lyme, he has had two colds and I did not see that change in behavior like I did before we started treatment. That was kind of what got me thinking about this. Has it been the lyme the whole time? My brain feels like it will explode everytime I try to analyze this
  5. I hate what Pandas and Lyme has done to our children. Now that it is back to school time all the stress has returned for all of us. My son so desperately wants to attend school and is so mad that I have to put him in Cyber school. I have tried over and over to explain that he has not been getting a consistent education when he is not able to attend school. All last year he went a total of 8 days and our district put him on homebound. Unfortunately he cannot keep doing that all year, every year. This year we all agreed (school and us) that he would try to go back and if not cyber was our only option. Here we are the first week of school and he only went the first day. He said the ocd and anxiety are keeping him from going. He wants to keep trying but I told him that is not going to work. It breaks my heart because he is now mad at me. I am only trying to do what is right for him. He is 12 years old and just wants a normal life, I understand. Why is this so hard? How am I gonna keep getting through this year after year? We are now on our third year and still not seeing any improvement. He is currently taking Minocycline and Biaxin, plus multiple vitamins (B12, C, D3), fish oil, 7 of Buhner's Herbs for lyme and brain fog, plus Serrapeptse and probiotics. I don't know what else to do. Our days are already spent taking medicine three times with the herbs and twice with everything else. Plus throw in epsom salt soaks. I hate this and I and trying to research as much as I can. I read how others have gotten better and I ask why not him, what are we missing? I am sorry I had to get this out, I have no one who understands. My husband is stressed enough at work. I cannot stop crying this is so, so hard.
  6. My son has been on the Stephen Buhner lyme protocol of herbs for two months now and we also added the three additional herbs (cryptolepis, alchornea, sida) for all the brain fog issues. He is still on Minocycline and Biaxin twice a day too. So far not seeing any major changes, good or bad. I know RowingMom has had a lot of success with Buhner herbs for her daughter. Our LLMD said it takes a little longer with the herbs. The big factor will be at the end of the month if he goes back to school, he did not go all last year.
  7. Our local vitamin store is promoting this product and I looked into it. It really sounds like it could be awesome but is it too good to be true? They actually recommend using both. It also had some good reviews on Amazon. They had a better description of ingredients. https://positivepowernutrition.com/products/cell-power/ https://positivepowernutrition.com/products/super-silica/
  8. We are also dealing with Lyme and my son has the same complaint. He has stayed the same in weight or lost a pound or two over the last 9 months. I just make sure he eats all three meals a day and give him small snacks when possible. This is a very common symptom with Lyme. Our dr gave me a prescription for something called Cyproheptadine, but I have not given it to him so I don't know if it works. I do not want to add anymore prescriptions than he is already on, you know. Hope someone else can give you a better answer, good luck.
  9. Even though my son is far from getting better, dealing with lyme and activitly treating, and he feels horrible most of the time, his fellow baseball team nomiated him to play in their all-star game. No one on the team knows about him having lyme or Pandas. I know this will make him feel so good and he really needs that right now. We really need to celebrate the little moments for our children who spend most of their time suffering. Hopefully it will be a good day for him so he can enjoy his moment. Just wanted to share. Thanks for being an awesome support board.
  10. Hi Mayzoo My son is 11 and just started on 200mg of resvertral and seems to be tolerating it. I don't know if it is helping, just started 2 weeks ago. We are new to treating the lyme infection that I think he has had for almost 2 years. I hope it helps him, I have read good things about it. You may want to check out Stephen Buhner's site, he gives dosage instructions for adults and children. I have heard you should start out low and slowly increase. Here is his site, good luck. http://buhnerhealinglyme.com/
  11. Thank you everyone for all your input. I am not saying that abx have not worked, we are still in the beginning stages and have only been on doxy/biaxin for 2 months. I just was wondering if you can do Buhner while on abx and if you have to do it under the supervision of a doctor. I know rowingmom has been having great succes and appreciate all your advice. As we know, it is different for every person and how their body responds. I wish there was some standard method that we could all follow, but these stupid illness' like lyme and pandas do not follow any rules.
  12. Does anyone know if this can be done on your own? I don't know if our LLMD is familiar with this plan. I would hate to do anything that interferes with my son's treatment but was wondering if you do not have a dr to guide you, can this be done from his book and website? We are still in the early treatment stage, only 2 months on doxy and biaxin, plus I am waiting for blood work results from a nutritional panel. We see our dr next week and I was going to ask him about this. I know RowingMom is familiar with this protocol, but just wondering if anyone had any feed back. Thanks
  13. This was an interesting program on lyme if anyone is interested. http://thedianerehmshow.org/audio-player?nid=19096 Found it on this facebook page which has some good info. https://www.facebook.com/2LymeDisease.org
  14. I use this brand and they taste pretty good. I add either craisins or choc chips. If you cannot find them in a store, they sell them on amazon. I get the buckwheat pancake mix. http://123glutenfree.com/
  15. Our llmd just gave us the order for SpectraCell testing. He is only doing 15mg of zinc for now but I guess that is why the dr is testing. I know the lyme journey is long. I have been reading and researching all I can about it. Sometimes the more I find out, the more I get discouraged when I realize how far we have to go. No one understands, the school, our families, no local support groups for either pandas or lyme. They see anxiety and want to push him to do more, "you have to fight it" is all I hear. Then I am judged on how I am letting him do this and letting him stay home. If they could only live in our shoes for one week and see the extremes we have seen.
  16. Those are both very good points. He did sleep the entire day and then told us he has another loose tooth. I just wish we knew how to treat all this. He has been tested for everything and he is a little low on zinc, which we supplement. It was just so amazing how much better he was for one week, like his old self again. That just makes it hurt even more when it all crashes. He said he does not want to do half days because he just wants to go and not stand out. He misses it so bad it breaks my heart.
  17. This has been such a dicouraging journey. Long story short, 2 1/2 years ago my son had strep causing pandas, classic symptoms, but has not recovered fully. Has been off and on going to school, then last fall we tested positive for lyme. Been on doxy and biaxin since Feb of this year. Has not been to school since last Sept then this week he went back and said the anxiety and headaches were gone. Now he stopped going and all the symptoms are back. How do you explain that for one week things were that good? What this does to a person is horrible. One extreme to another, in one weeks time.
  18. Meredith, This is how I found the LLMD we are using. http://www.chroniclymedisease.com/llmd-referrals I also got a name of someone in VA, don't remember because I am in SW PA and that was too far. This site is helpful. Also research and read on the lymedisease.org page, they have lots of info. Good luck. We just started on the lyme treatment journey our selves.
  19. http://www.psychologytoday.com/blog/why-can-t-i-get-better/201402/antibiotics-found-effective-in-schizophrenia Good article, now maybe they will see the connection with Pandas/Pans a little better. Good book by Dr. Horowitz by the way. I read it in 3 days
  20. Stillhopeful My son is 11 and weighs about 69 lbs. The steroid was Prednisone for 5 days, 20 mg, twice a day, but we only did three days. I don't know what to think anymore. We see LLMD on Jan 2nd, so I guess I just have to be patient and gather up all my questions and document everything I see.
  21. Things got worse by the third day, so I stopped giving it to him. He was so pale, under his eyes got dark and red, and he just felt horrible. Now two days later, he feels a little bit better and looks so much better. But his biggest complaint is a terrible headache. We just started another course of Biaxin last week and I am wondering if it is now starting to work. They say it could take a couple of weeks to start fighting the bacteria and I am wondering if the steroid lowered his immunity. Always trying to fit the pieces together.
  22. I think the dr we are seeing, who understands pandas, is trying to confirm everything with the steroids. Like it has been said that if they respond to a sertoid burst it is pandas. Now I know not every doctor has agreed with that. Again , it is the constant battle over what each doctor believes. Unfortunately, he told me he does not know a lot about lyme, that is why I have the other appt scheduled. This is just a constant frustrating journey. I wish the doctors could uderstand this and most importantly, listen to us parents.
  23. Hopenny He has been on the Biaxin since the beginning of November and we did a month of Zith before that. He had also been on Zith since January and went off it during the summer. I am currently reading the "Cure Unknown" by Pamela Weintraub, but there is a lot of info in it and is very overwhelming. I should have taken notes as I was going along. It's about 400 pages. I also got another book called "Beating Lyme" by Constance Bean, but have not started that one yet. Thanks for any advice.
  24. My son is 11 and our whole situation started 2 years ago with strep and seemed to be constantly triggered by other things too. So I guess he would be in the PANS catagory. Anyway, things have not improved so we tetsed for lyme. He came back positive. We are currently doing Biaxin and have an appt with LLMD in January. But the dr he sees now wanted to try a steroid burst this week. I have read you should not do steroids with lyme. I just want to know what to look for. He is only on the third day and has complained about being nauseous and dizzy and has been having bad headaches. What should I be seeing? Thanks
  25. There is a topic named "Conference" from a few days ago. There are some very interesting posts on there. I think it is great that the other paerents are able to attend and pass on their notes. Sorry I don't know how to attach it to this post.
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