Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Welcome to the group, . Which part of the country do you live? My husband is from a small fishing village outside of Tromso. He never gives up on trying to persuade me that there is no tick in northern Norway because of the climate. I still have my doubts. Most of us do a trial treatment, when there is some ambiguity in the test results or before testing. We used Nutrimedix herbs for this purpose, and had already seen improvements prior to testing. My son's Lyme test was inconclusive, but he was positive for all major coinfections. There are also other natural treatments for a challenge test or treatment trial. Some in this group used antibiotics for provocation. Hope others can chime in to share their experience with you. Best of luck. Limin > Hi, > I'm new to the group and thought I'd introduce myself and take the opportunity also to ask a few questions. > I'm and am a mum to a 5yr old non verbal ASD boy and 7 yr old NT girl. We have been doing bio med for nearly two years now and am currently doing AC chelation. It's been a very long, hard road for us but the improvements spur us on. > We live in Sweden and unfortunately DD got a tick bite in August. Recent testing indicated she has the antibodies for Borrelia. At the time of the bite the area was very red and infected and she was given two weeks of antibiotics. > I have noticed over the past few months symptoms which prompted me to test her for Lyme. She has had increased muscle pain, mostly in the joints , mood swings, irritability, anxiety, complained of breathlessness and has insomnia. Even though she's exhausted she's not sleeping well and night waking now. She used to sleep so long we'd have to wake her. > I have been reading some of your wonderful files and understand that you should treat symptom based as it is hard to detect Borrelia. Here in Sweden they have advised us to do another blood test for antibodies in four weeks to see if levels have risen. That to them would indicate a current infection. > I have her well nutritionally supported with a multi/high b's, EFAs and extra D but I see from your files I should add more mag and increase exercise. We also have a dry sauna at home which DS uses every week so I now know she could also benefit from that. > I generally like to treat things naturally but was overwhelmed by your file, Quick study list to Lyme and co-infections treatments. So I'm not sure where to start and would appreciate if you could point me in the right direction. > I have this second blood test coming up soon and am wondering if I should be giving her something to provoke it, if that's possible so it shows? Or should I just be going ahead and treating the symptoms? I ask because antibiotics seem to be a apart of the picture and there is no way I'm going to get that here in Sweden unless the level of antibodies are raised. > One other concern is that I read in the files that transmission can be via bed bugs and so for those of you with a child with Lyme, have you tested or treated the entire family? > OK, sorry to write so much. I am very keen to get started on treating DD as we have enough worries with our 5yr old ASD son and we really didn't need this as well. > Lastly, thank you to the person who recommended this list who probably recognizes my name. > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 : I am trying to find the list of European doctors. When I get it, I will send it to you. It really is best to get treatment right away from a doctor who knows what he/she is doing. There are docs near you. If nothing else, realize that treatments that boost the immune system and/or anti-microbial treatments are often used. Often, the entire family is treated and is thought to be carriers even if they don't show symptoms yet. There are Youtubes about whole families on treatment and testing positive. Reportedly, antibodies show up a while after being infected. I think it's about two months. But, then of course, it's really a problem because now the bacteria are thought to have invaded deep inside the body tissues. If the infection is new, I don't think provocation is needed as much. Provocation is used when the infection has been going on awhile and the body's immune system is so over-worked that it no longer produces enough antibodies to produce a positive result. This pertains to having the infection for years. There really are no specific guidelines that all agree to, but just sharing some general notes one will learn if they research about it. I recommend trying to Google to find a Lyme doctor in your country or in a county close to you. If your child has a different infection, a Lyme doctor will usually be able to help with that as well. There are doctors in Germany and England who know all this. I may not be able to get the European referral list till next week. Love and prayers, Heidi N > > > > > > > Hi, > > > I'm new to the group and thought I'd introduce myself and take the opportunity also to ask a few questions. > > > I'm and am a mum to a 5yr old non verbal ASD boy and 7 yr old NT girl. We have been doing bio med for nearly two years now and am currently doing AC chelation. It's been a very long, hard road for us but the improvements spur us on. > > > We live in Sweden and unfortunately DD got a tick bite in August. Recent testing indicated she has the antibodies for Borrelia. At the time of the bite the area was very red and infected and she was given two weeks of antibiotics. > > > I have noticed over the past few months symptoms which prompted me to test her for Lyme. She has had increased muscle pain, mostly in the joints , mood swings, irritability, anxiety, complained of breathlessness and has insomnia. Even though she's exhausted she's not sleeping well and night waking now. She used to sleep so long we'd have to wake her. > > > I have been reading some of your wonderful files and understand that you should treat symptom based as it is hard to detect Borrelia. Here in Sweden they have advised us to do another blood test for antibodies in four weeks to see if levels have risen. That to them would indicate a current infection. > > > I have her well nutritionally supported with a multi/high b's, EFAs and extra D but I see from your files I should add more mag and increase exercise. We also have a dry sauna at home which DS uses every week so I now know she could also benefit from that. > > > I generally like to treat things naturally but was overwhelmed by your file, Quick study list to Lyme and co-infections treatments. So I'm not sure where to start and would appreciate if you could point me in the right direction. > > > I have this second blood test coming up soon and am wondering if I should be giving her something to provoke it, if that's possible so it shows? Or should I just be going ahead and treating the symptoms? I ask because antibiotics seem to be a apart of the picture and there is no way I'm going to get that here in Sweden unless the level of antibodies are raised. > > > One other concern is that I read in the files that transmission can be via bed bugs and so for those of you with a child with Lyme, have you tested or treated the entire family? > > > OK, sorry to write so much. I am very keen to get started on treating DD as we have enough worries with our 5yr old ASD son and we really didn't need this as well. > > > Lastly, thank you to the person who recommended this list who probably recognizes my name. > > > > > > > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Heidi,I would really appreciate that list, thank you! I doubt there are any here in Sweden but Norway and the UK are the best alternatives for us. I did try and google them but no luck. There were a couple hits where you leave your details with a group and then they get back to you but then thought I may as well wait until you are able to get it.Thanks again, I really appreciate it. > > > > > Hi, > > > I'm new to the group and thought I'd introduce myself and take the opportunity also to ask a few questions. > > > I'm and am a mum to a 5yr old non verbal ASD boy and 7 yr old NT girl. We have been doing bio med for nearly two years now and am currently doing AC chelation. It's been a very long, hard road for us but the improvements spur us on. > > > We live in Sweden and unfortunately DD got a tick bite in August. Recent testing indicated she has the antibodies for Borrelia. At the time of the bite the area was very red and infected and she was given two weeks of antibiotics. > > > I have noticed over the past few months symptoms which prompted me to test her for Lyme. She has had increased muscle pain, mostly in the joints , mood swings, irritability, anxiety, complained of breathlessness and has insomnia. Even though she's exhausted she's not sleeping well and night waking now. She used to sleep so long we'd have to wake her. > > > I have been reading some of your wonderful files and understand that you should treat symptom based as it is hard to detect Borrelia. Here in Sweden they have advised us to do another blood test for antibodies in four weeks to see if levels have risen. That to them would indicate a current infection. > > > I have her well nutritionally supported with a multi/high b's, EFAs and extra D but I see from your files I should add more mag and increase exercise. We also have a dry sauna at home which DS uses every week so I now know she could also benefit from that. > > > I generally like to treat things naturally but was overwhelmed by your file, Quick study list to Lyme and co-infections treatments. So I'm not sure where to start and would appreciate if you could point me in the right direction. > > > I have this second blood test coming up soon and am wondering if I should be giving her something to provoke it, if that's possible so it shows? Or should I just be going ahead and treating the symptoms? I ask because antibiotics seem to be a apart of the picture and there is no way I'm going to get that here in Sweden unless the level of antibodies are raised. > > > One other concern is that I read in the files that transmission can be via bed bugs and so for those of you with a child with Lyme, have you tested or treated the entire family? > > > OK, sorry to write so much. I am very keen to get started on treating DD as we have enough worries with our 5yr old ASD son and we really didn't need this as well. > > > Lastly, thank you to the person who recommended this list who probably recognizes my name. > > > > > > > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2012 Report Share Posted July 29, 2012 My name is Liz and I have been reading the site for a couple months. I had Chiari 1 and was decompressed with duraplasty in Jan. I am now scheduled for detethering of spinal cord Aug 6. I'm wondering what the post-op pain and laying flat on your back is like the first 24 hrs. Hopefully I will be drugged enough I won't mind being on my back. I'm dreading this one more than the decompression. I don't know why. I just don't want to experienc a lot of pain. How's it been for some of you? Blessings, Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2012 Report Share Posted July 29, 2012 Hi Liz ~ I had a detethering 4 yrs ago for a tight filum. If you did well with your decompression I would think you will do just fine with your detether. Make sure you express your concerns about pain management to your neurosurgeon or at your pre-op appt. You will likely be on a morphine drip when you first wake up. I don't remember any pain when I woke up -- it was later after I got off the strong meds the pain was really bad. I think I was on morphine for the two days and then they tried ocycodone. Due to terrible side effects of both, got off the opiates and just onto tylenol and ibuprofen -- it's all a blur now. I think the back pain really started when I got off the narcotics -- but for me, the pain was worth it. Turns out after 3 surgeries the verdict is it's the opiates that give me the severe headaches, dizziness, and other horrid feelings -- it wasn't the detether as originally thought. I do remember as soon as I got up moving and walking around, the pain decreased substantially. I think you will be drugged up enough that you won't mind being on your back the 1st 24 hours -- just like you said. If you have any other questions feel free to ask. All the best for your surgery! Dee To: tetheredspinalcord From: lcauthon1@... Date: Sun, 29 Jul 2012 03:29:00 +0000 Subject: New to group My name is Liz and I have been reading the site for a couple months. I had Chiari 1 and was decompressed with duraplasty in Jan. I am now scheduled for detethering of spinal cord Aug 6. I'm wondering what the post-op pain and laying flat on your back is like the first 24 hrs. Hopefully I will be drugged enough I won't mind being on my back. I'm dreading this one more than the decompression. I don't know why. I just don't want to experienc a lot of pain. How's it been for some of you? Blessings, Liz Quote Link to comment Share on other sites More sharing options...
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