Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Hey everyone I just wanted to share this story. As with all lyme cases it is stranger than fiction. My friend who believes she has lyme and has tried unsucessfully to treat it with abx has a mother who was dxed with MS in the 1970's. She got mad at docs and refused to go to anymore. That was in 1970 - something!!! She little by little became crippled and then soon was no longer able to walk or even feed herself. She still refused to go to a doctor. She is now in her 50's and her husband was dxed with colon cancer and had to have surgery which sent my friend who doesn't walk too well herself back home to care for Mom and Dad. She knew she couldn't do it and started the process of disability and doctors and physical therapy for her mother with the help of the MS society. So she gets to the Neuro doc who does the MRI thoroughly expecting to find many lesions and some " brain shrinkage ??? " and guess what? Only 1 or 2 lesions!!!! The neuro doc was speechless. (now that is a blessing in disguise - the speechless doc I mean and of course the low lesions. So how come a woman with MS who can't walk has no lesions to speak of on her brain???!!! My theory: even though she has had " something " all these years she did not go to docs and get put on steroids or any other crap medicine. The neuro doc says that she thinks that the " virus " just ran it's course and this is what she was left with? Just wanted to share. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Kathleen, I'm confused. So what are they going to do to help her? Can she walk better now? Vicki Re: [Lyme-aid] MS/Lyme >From: Fyikat@... > >Hey everyone I just wanted to share this story. As with all lyme cases it is >stranger than fiction. > >My friend who believes she has lyme and has tried unsucessfully to treat it >with abx has a mother who was dxed with MS in the 1970's. She got mad at >docs and refused to go to anymore. That was in 1970 - something!!! > >She little by little became crippled and then soon was no longer able to walk >or even feed herself. She still refused to go to a doctor. > >She is now in her 50's and her husband was dxed with colon cancer and had to >have surgery which sent my friend who doesn't walk too well herself back home >to care for Mom and Dad. She knew she couldn't do it and started the process >of disability and doctors and physical therapy for her mother with the help >of the MS society. > >So she gets to the Neuro doc who does the MRI thoroughly expecting to find >many lesions and some " brain shrinkage ??? " and guess what? Only 1 or 2 >lesions!!!! The neuro doc was speechless. (now that is a blessing in >disguise - the speechless doc I mean and of course the low lesions. > >So how come a woman with MS who can't walk has no lesions to speak of on her >brain???!!! My theory: even though she has had " something " all these years >she did not go to docs and get put on steroids or any other crap medicine. >The neuro doc says that she thinks that the " virus " just ran it's course and >this is what she was left with? > >Just wanted to share. > >Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Kathleen, I think this lady should get herself thoroughly tested from an LLMD, pronto. I believe my mother was misdiagnosed with MS in the 70s. She went on steroids, went right downhill, and eventually died. I am convinced she had misdiagnosed Lyme Disease, since it all started with a mysterious bout of arthritis of the knee (big swelling) which went away but then big neuro problems flared up when she was given steroids after a car accident. I have been going over her medical records, and every detail is consistent with my theory. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Vicki, Well physical therapy is about it. What else can they do? She seems to be improving with the physical therapy. She can help herself to pivot and move a bit but is still bedridden. A sorry shame. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 >What an awful way to live your life. Now wonder so many people think about suicide. I used to be confused about my feeling of Dr. Kervorkian (sp?), not any more. I think he is a wonderful man, and God is a forgiving God. Vicki Vicki, I couldn't agree more. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 What an awful way to live your life. Now wonder so many people think about suicide. I used to be confused about my feeling of Dr. Kervorkian (sp?), not any more. I think he is a wonderful man, and God is a forgiving God. Vicki Re: [Lyme-aid] MS/Lyme >From: Fyikat@... > >Vicki, > >Well physical therapy is about it. What else can they do? She seems to be >improving with the physical therapy. She can help herself to pivot and move >a bit but is still bedridden. A sorry shame. > >Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Hi , I have been on the same road, after ten years with " MS. " After being involved with 4 different neurologists in that time, I have never had ONE of them even mention this as a possibility! I am 13 weeks on antibiotics to kill the co-infections first and will then go after the Lyme. Just keep in mind that your new direction will not be fun...days of Herxing but gradual glimmers of improvement. I might recommend keeping a journal or a video journal so you can see the changes. Good luck and hit the Fish oils in a big way! I am so glad you found out the truth! Brynn > > I have been on LDN for more than a year. After being told that I had MS 24 years ago, I just found out yesterday that I have Lyme. My LLMD(Lyme literate medical doctor) has me on long termn antibiotics, along with large quantities of probiotics. I urge all of you MSers to check with an LLMD, so that you do not go through life with untreated Lyme as I have. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Thanks Brynn From: brynn2068 <brynn2068@...>Subject: [low dose naltrexone] Re: MS/LYMElow dose naltrexone Date: Wednesday, May 6, 2009, 7:00 PM Hi , I have been on the same road, after ten years with "MS." After being involved with 4 different neurologists in that time, I have never had ONE of them even mention this as a possibility! I am 13 weeks on antibiotics to kill the co-infections first and will then go after the Lyme. Just keep in mind that your new direction will not be fun...days of Herxing but gradual glimmers of improvement. I might recommend keeping a journal or a video journal so you can see the changes. Good luck and hit the Fish oils in a big way! I am so glad you found out the truth! Brynn>> I have been on LDN for more than a year. After being told that I had MS 24 years ago, I just found out yesterday that I have Lyme. My LLMD(Lyme literate medical doctor) has me on long termn antibiotics, along with large quantities of probiotics. I urge all of you MSers to check with an LLMD, so that you do not go through life with untreated Lyme as I have.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 It took me eight years to figure out my sickness was Lyme and NOT MS ! The critical portion of this is hiring a competent Lyme Literate Medical Doctor (LLMD). NONE of the Lyme tests, not even the trendy ones, are accurate. Once we've had Lyme for a while is hides even from our immune systems. The change in diagnoses has been grim. One year later I'm really glad to have made the change. 20 minute video on Lyme misdiagnosed as MS http://vimeo.com/2354218 > > Hi , I have been on the same road, after ten years with " MS. " After being involved with 4 different neurologists in that time, I have never had ONE of them even mention this as a possibility! ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Do we know where a LLDM is and or how to find one for test? I have had rocky mtn spotted tick fever....tick bites when small and now MS... Thanks a bunch Matt [low dose naltrexone] Re: MS/LYME It took me eight years to figure out my sickness was Lyme and NOT MS ! The critical portion of this is hiring a competent Lyme Literate Medical Doctor (LLMD). NONE of the Lyme tests, not even the trendy ones, are accurate. Once we've had Lyme for a while is hides even from our immune systems. The change in diagnoses has been grim. One year later I'm really glad to have made the change. 20 minute video on Lyme misdiagnosed as MS http://vimeo.com/2354218 > > Hi , I have been on the same road, after ten years with "MS." After being involved with 4 different neurologists in that time, I have never had ONE of them even mention this as a possibility! ....... ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 The ILADS website either has or recently had a link to find LLMDs. What I did was find Lyme Awareness organizations and contact them via email and telephone. Just pulled this link up: http://www.lymediseaseassociation.org/referral/LogIn.php?setcookie=yes Treating Lyme disease threatens physicians licenses and therefore their living. This has driven many of them into a nearly clandestine world. We just have to accept this is part of the world and keep moving towards our goals. > > > > Hi , I have been on the same road, after ten years with " MS. " After > being involved with 4 different neurologists in that time, I have never had ONE > of them even mention this as a possibility! ....... > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Good news for Lyme disease sufferers. The Connecticut House of Representatives has unanimously approved a bill designed to give doctors a freer hand in prescribing for Lyme disease. This should set a Precedence with other states following suit. http://www.wtnh.com/dpp/news/news_wtnh_hartford_housepasseslymediseasebill_200904301610 From: alrightguy123 <alrightguy123@...>Subject: [low dose naltrexone] Re: MS/LYMElow dose naltrexone Date: Thursday, May 7, 2009, 4:36 PM The ILADS website either has or recently had a link to find LLMDs. What I did was find Lyme Awareness organizations and contact them via email and telephone. Just pulled this link up:http://www.lymedise aseassociation. org/referral/ LogIn.php? setcookie= yesTreating Lyme disease threatens physicians licenses and therefore their living. This has driven many of them into a nearly clandestine world. We just have to accept this is part of the world and keep moving towards our goals.> >> > Hi , I have been on the same road, after ten years with "MS." After > being involved with 4 different neurologists in that time, I have never had ONE > of them even mention this as a possibility! .......> > > > ------------ --------- --------- ------> > Links> Quote Link to comment Share on other sites More sharing options...
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