Comments for Lyme Link http://lymeadvocate.com News and Support for People with Lyme Disease Mon, 12 May 2008 06:58:56 +0000 http://wordpress.org/?v=2.2.1 Comment on Do You Have Flare Ups When You Push Yourself? by Drew http://lymeadvocate.com/do-you-have-flare-ups-when-you-push-yourself/#comment-183 Drew Sat, 26 Apr 2008 00:31:46 +0000 http://lymeadvocate.com/do-you-have-flare-ups-when-you-push-yourself/#comment-183 Absolutely. I cannot do what I used to without getting exhausted to the point where it takes me a few days of more than average sleep to get back. I have to take even three hours naps on the weekend now just from a regular workweek. It sucks. Absolutely. I cannot do what I used to without getting exhausted to the point where it takes me a few days of more than average sleep to get back. I have to take even three hours naps on the weekend now just from a regular workweek. It sucks.

]]> Comment on I’m Cured. No I’m Not. by admin http://lymeadvocate.com/im-cured-no-im-not/#comment-179 admin Mon, 14 Apr 2008 01:03:56 +0000 http://lymeadvocate.com/im-cured-no-im-not/#comment-179 Donald, I'm sorry to hear about all the problems you've had, but it is good to hear that you've also found that it has done some good things for you. I hope the treatments for arthritis are helping with the pain. Donald,
I’m sorry to hear about all the problems you’ve had, but it is good to hear that you’ve also found that it has done some good things for you. I hope the treatments for arthritis are helping with the pain.

]]> Comment on I’m Cured. No I’m Not. by Donald http://lymeadvocate.com/im-cured-no-im-not/#comment-159 Donald Tue, 04 Mar 2008 18:17:05 +0000 http://lymeadvocate.com/im-cured-no-im-not/#comment-159 Hello again, Now that I am thinking about this lyme I am very supprised that it is still as it was when I first got it. I am 55 years young now, and was 30 when I first got lyme. As typical no one could figure out what was wrong with me. I went to the faulk clinic in Pittsburg Pa. and they assured me that they would get to the bottom of this. I had a very positive response to asprin and was taking 24 tablets a day. With this the Faulk clinic congraduated me that I was cured!! They did find something in my bloodwork but were unable to isolate it. From there it was a spiral down the long road to were I am today. I went the route as all those in the messages written before me have gone. I must admit that because of this condition it has keep me from doing a lot of things that I know I would have done. And as one who does believe in God and the after life, has keep me from many situations that would have been a disaster for me not only in this life but also in the one to come. Hello again, Now that I am thinking about this lyme I am very supprised that it is still as it was when I first got it. I am 55 years young now, and was 30 when I first got lyme. As typical no one could figure out what was wrong with me. I went to the faulk clinic in Pittsburg Pa. and they assured me that they would get to the bottom of this. I had a very positive response to asprin and was taking 24 tablets a day. With this the Faulk clinic congraduated me that I was cured!! They did find something in my bloodwork but were unable to isolate it. From there it was a spiral down the long road to were I am today. I went the route as all those in the messages written before me have gone. I must admit that because of this condition it has keep me from doing a lot of things that I know I would have done. And as one who does believe in God and the after life, has keep me from many situations that would have been a disaster for me not only in this life but also in the one to come.

]]> Comment on Scientists Say Chronic Lyme Disease Is Not Real by Donald http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Donald Tue, 04 Mar 2008 17:54:37 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents. Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents.

]]> Comment on Lyme Disease Rates in Maryland Doubled by Drew http://lymeadvocate.com/lyme-disease-rates-in-maryland-doubled/#comment-144 Drew Fri, 25 Jan 2008 04:48:39 +0000 http://lymeadvocate.com/lyme-disease-rates-in-maryland-doubled/#comment-144 It seems that increases do have a lot to do with awareness and better diagnoses. If I had not gone to the right doctor I would be going through chronic fatigue syndrome right now to no avail! It seems that increases do have a lot to do with awareness and better diagnoses. If I had not gone to the right doctor I would be going through chronic fatigue syndrome right now to no avail!

]]> Comment on Scientists Say Chronic Lyme Disease Is Not Real by admin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-92 admin Tue, 13 Nov 2007 17:40:31 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-92 Carol, I really feel for you. I have some of the same problems with memory, hand pain, etc. I was telling my mom yesterday that it makes me feel like Polyanna (the little girl who always found good things about stuff) to say this, but I did discover a good thing about Lyme. My allergies are much less of a problem what with my immune system not functioning as well. I can sleep with my cat now and I barely had any fall allergy problems. Carol,
I really feel for you. I have some of the same problems with memory, hand pain, etc. I was telling my mom yesterday that it makes me feel like Polyanna (the little girl who always found good things about stuff) to say this, but I did discover a good thing about Lyme. My allergies are much less of a problem what with my immune system not functioning as well. I can sleep with my cat now and I barely had any fall allergy problems.

]]> Comment on There’s a Lyme Doctor Around Every Corner… by Carol http://lymeadvocate.com/theres-a-lyme-doctor-around-every-corner/#comment-91 Carol Mon, 12 Nov 2007 19:22:41 +0000 http://lymeadvocate.com/theres-a-lyme-doctor-around-every-corner/#comment-91 See only a Lyme literate doctor, and get the Rocephin IV or your brain damage will only get worse! the oral antibiotics don't cross the blood/brain barrier. I had what seemed like mild demential sxs, and 2 yrs after 6 mos (too long) on Rocephin IV, it's better, but still there. Numbers, yeah, and short term memory, and coping, confusion, disorientation, anxiety, etc. So don't wait! Get a doctor who only treats advanced Lyme, or just insist on the Rocephin IV for at least 3 months. I think I'd be dead by now without it. See only a Lyme literate doctor, and get the Rocephin IV or your brain damage will only get worse! the oral antibiotics don’t cross the blood/brain barrier. I had what seemed like mild demential sxs, and 2 yrs after 6 mos (too long) on Rocephin IV, it’s better, but still there. Numbers, yeah, and short term memory, and coping, confusion, disorientation, anxiety, etc. So don’t wait! Get a doctor who only treats advanced Lyme, or just insist on the Rocephin IV for at least 3 months. I think I’d be dead by now without it.

]]> Comment on Fatal Ehrlichiosis Case by Carol http://lymeadvocate.com/fatal-ehrlichiosis-case/#comment-90 Carol Mon, 12 Nov 2007 19:18:03 +0000 http://lymeadvocate.com/fatal-ehrlichiosis-case/#comment-90 There is a quick and accurate way: the Western Blot from Igenex Labs in CA. Don't let your doctors use anything else. It saved my life. There is a quick and accurate way: the Western Blot from Igenex Labs in CA. Don’t let your doctors use anything else. It saved my life.

]]> Comment on Scientists Say Chronic Lyme Disease Is Not Real by Carol http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-89 Carol Mon, 12 Nov 2007 19:15:55 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-89 I was on Rocephin IV for 6 months, lost my gallbladder, gained a hiatal hernia, but killed the Lyme. 2 years later, I still have Lyme cycles, so there's no way there's no such thing as Post Lyme Syndrome. The doctors simply don't know how to test for it, or how to treat it so they say it doesn't exist. I was relatively healthy pre-Lyme, now I can hardly function, altho some months are better than others. When I'm in a cycle, I have insomnia, my hands hurt, I lose all motivation and energy, I am again disoriented, and have mild demential sxs (I am 56 and was a practicing psychotherapist before Lyme...) I reverse numbers, have short term memory problems, get lost driving, start to get depressed...and then the cycle abates and most of those get better for a while, and I'm functional. Definitely a syndrome. Going to try the VCS/cholestyramine tx by Dr. Shoemaker next, since it's clear antibiotics don't work for this. Any info on Post Lyme appreciated. Thanks. I was on Rocephin IV for 6 months, lost my gallbladder, gained a hiatal hernia, but killed the Lyme. 2 years later, I still have Lyme cycles, so there’s no way there’s no such thing as Post Lyme Syndrome. The doctors simply don’t know how to test for it, or how to treat it so they say it doesn’t exist. I was relatively healthy pre-Lyme, now I can hardly function, altho some months are better than others. When I’m in a cycle, I have insomnia, my hands hurt, I lose all motivation and energy, I am again disoriented, and have mild demential sxs (I am 56 and was a practicing psychotherapist before Lyme…) I reverse numbers, have short term memory problems, get lost driving, start to get depressed…and then the cycle abates and most of those get better for a while, and I’m functional. Definitely a syndrome. Going to try the VCS/cholestyramine tx by Dr. Shoemaker next, since it’s clear antibiotics don’t work for this. Any info on Post Lyme appreciated. Thanks.

]]> Comment on Another Vote for Chronic Lyme Disease by Drew http://lymeadvocate.com/another-vote-for-chronic-lyme-disease/#comment-88 Drew Sun, 11 Nov 2007 16:06:44 +0000 http://lymeadvocate.com/another-vote-for-chronic-lyme-disease/#comment-88 The entire chronic v. post-Lyme is an odd debate to me. I really have no clue what post-Lyme is supposed to mean other than, well, you basically still have it! I hear you with the stamina. I just got over my second bout of a wonderful J-H reaction to my second round of doxy that continues onward. I was pulling open the bag in a box of cereal this morning. It revealed yet another thing that is different. I used to have unusually strong hand strength. But my fingers just are not what they used to be. My wife refreshed my memory of a bout three conversations we had recently that I had absolutely no memory of, something else that has never been the case unless I was intentionally not listening ;-). And sleep is just not coming in large enough doses - ever. So do I have early symptoms of chronic Lyme? These as well as my NK cell count test which just came back last week say yes. It was a whopping 18. Twenty is apparently dangerously low. Some research indicates that this is an effect of long-term Lyme infections. I am also worried about possible Epstein Barr since my spleen and liver are enlarged and uncomfortable since the Lyme reactivated the momo I had when I was a kid. Basically my body is a total wreck. I guess bacteria have been around longer than humans so it's no wonder why our bodies have a tought time fighting them. They just adapt better. So onward we go right?! The entire chronic v. post-Lyme is an odd debate to me. I really have no clue what post-Lyme is supposed to mean other than, well, you basically still have it!

I hear you with the stamina. I just got over my second bout of a wonderful J-H reaction to my second round of doxy that continues onward. I was pulling open the bag in a box of cereal this morning. It revealed yet another thing that is different. I used to have unusually strong hand strength. But my fingers just are not what they used to be.

My wife refreshed my memory of a bout three conversations we had recently that I had absolutely no memory of, something else that has never been the case unless I was intentionally not listening ;-).

And sleep is just not coming in large enough doses - ever.

So do I have early symptoms of chronic Lyme? These as well as my NK cell count test which just came back last week say yes. It was a whopping 18. Twenty is apparently dangerously low. Some research indicates that this is an effect of long-term Lyme infections.

I am also worried about possible Epstein Barr since my spleen and liver are enlarged and uncomfortable since the Lyme reactivated the momo I had when I was a kid.

Basically my body is a total wreck. I guess bacteria have been around longer than humans so it’s no wonder why our bodies have a tought time fighting them. They just adapt better.

So onward we go right?!

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