Clindamyacin worked for me for three years before it stopped working. Ketek worked for a year but is no longer available. Alpha lipoic acid and zinc, seperately, works well for me during flares. Still, I have been out of a job for a year. I got rid of my night sweats with famciclovir. I am going to try Valcyte soon. I got bit by a tic bite 5 years ago and my symptoms have escalated since then. I used to be so healthy.
Hey there, I just posted a reply to you on my recent video, so check it out. By the way, I love your "jail scene" in your video. Ain't it the truth!!!!!! Hugs! Suzanne
I can relate to how you feel. I have Fibromyalgia and CFIDS.
Thanks for posting the videos. Its nice to know I'm not alone with the symptoms. The way you described your illness, symptoms, the way it affects your life...that's exactly how I feel.
I was tested for Lyme, and my test was negative. Sometimes I wonder if the test was wrong because I know I was bit by a tic when I was a child.
The Lyme tests are not accurate. Mine was borderline, meaning I was exposed but wasn't showing active infection in the test. But I definitely had the tick bites and the rash and I'm a hundred percent disabled from it.
Thanks for sharing your story. I sympathize with you. People that don't have Lyme really don't get it. The documentary : UNDER OUR SKIN is one of the best communication tools out there. If you can order this DVD, it would be well worth it. Invite your friends and relatives over to view it with you. Wrote a Lyme disease brochure with the help of 2 Lyme specialists. Will email to anyone. One Lyme doctor that was kind enough to review my brochure is in the film: Under Our Skin.
Thank you so much for posting these videos! Although I don't have Lyme disease, I can relate to the Auditory Processing Disorder and not understanding what the hell people are saying half the time (I do a lot of guessing), feeling really sick a lot, and people not understanding and calling you crazy. Even with medication, life is a real struggle. I really feel for you.
Hugs :) I find the Audio Processing to be just as disabling as all the other symptoms. If you can't understand what's being said to you, it really affects your life and relationships. And it destroys your ability to work since you can't take orders and your boss will freak out if you do the wrong thing because you didn't understand what you were told to do.
I end up having to function like I am hard of hearing or deaf, which is weird because I can hear tones fine in a sound-proof booth. Oh, and I also have functional vision issues, which is why I am a student of Hadley School for the Blind, due to things like lack of depth perception and other functional things going on as stated on a failed functional vision test. It's hard enough having CAPD, but combined with vision issues, it's REALLY hard. I am functionally deaf-blind.
It's interesting that you mentioned the depth perception. With me, I have trouble parking the car. I can't judge distances anymore. Like I can't tell if I'm too close or too far.
Most people don't realize that there is much more to hearing and vision than hearing tones in a soundproof booth and seeing letters on an eye chart. My problem is not with my eyes and ears but with my brain.
My problems exactly, my brain can't make sense of all the incoming stimuli, it is just overwhelming when there is too much going on, my brain crashes like a computer.
I know exactly what you mean. The problem is,. everyone around me doesn't understand, and so therefore they keep thinking that I am just being crazy in the head, lazy, hypochondriac, or melodramatic. Daily life is a real challenge with this.
Me, too. And it's something I didn't get to talk about in the vids. The sensory overload nearly kills me. It's yet another reason I stay away from people and going out too much. A movie theater would probably kill me. I can't take alot of noise and light and too many things going on.
Thank you so much for sharing this... I remember chatting to you by email.. this was an excellent post... I am now seeing a private neurologist in the UK.. and am being finally tested for Lyme disease etc.. you will remember I said i have had this since I was 13.. encephalitis etc.. and am now 36.. its taken such a long time.. God Bless you.. and thankyou for making the effort to post this xxxx
Great videos! Thanks for sharing your story with us. What a long road huh? I can really relate to you about just being "too damn sick" to do anything. I also only do one thing a day. I have turned energy conservation into an art form. Hang in there and keep the hope.
I think what drives me crazy is that my neighbors are in their seventies and they have a hundred times the energy that I do. They walk their dog about six or seven times a day. They don't like to take the elevator, so they take the stairs and we are on the sixth floor. They have an active social life. And here I am in my late 30's and I can barely do my laundry. It's just unreal.
Hugs :D I think it's a combo of bad press and just people who want to be evil and ignorant. My relatives want to believe the disease doesn't exist. They want to live in ignorance. It doesn't affect their lives, so they just don't care. And the press has done alot of damage to us. They still make fun of us on talk shows.
Clindamyacin worked for me for three years before it stopped working. Ketek worked for a year but is no longer available. Alpha lipoic acid and zinc, seperately, works well for me during flares. Still, I have been out of a job for a year. I got rid of my night sweats with famciclovir. I am going to try Valcyte soon. I got bit by a tic bite 5 years ago and my symptoms have escalated since then. I used to be so healthy.
Holypikeman 2 years ago
I think we can't get well because it's not just Lyme. Ticks carry a whole soup full of pathogens.
Carrigon 2 years ago
Hey there, I just posted a reply to you on my recent video, so check it out. By the way, I love your "jail scene" in your video. Ain't it the truth!!!!!! Hugs! Suzanne
Suzanne42 2 years ago
I can relate to how you feel. I have Fibromyalgia and CFIDS.
Thanks for posting the videos. Its nice to know I'm not alone with the symptoms. The way you described your illness, symptoms, the way it affects your life...that's exactly how I feel.
I was tested for Lyme, and my test was negative. Sometimes I wonder if the test was wrong because I know I was bit by a tic when I was a child.
stac1126 2 years ago 2
The Lyme tests are not accurate. Mine was borderline, meaning I was exposed but wasn't showing active infection in the test. But I definitely had the tick bites and the rash and I'm a hundred percent disabled from it.
Carrigon 2 years ago
Carrigon you are in our prayers. I will pray for you every night I hope you get better.
-Winter
Wintermuteai1 2 years ago
thank you for sharing. im sick to so I can't wright alot just wanted to say thanks :)
mitchbguitars 2 years ago
Thanks for sharing your story. I sympathize with you. People that don't have Lyme really don't get it. The documentary : UNDER OUR SKIN is one of the best communication tools out there. If you can order this DVD, it would be well worth it. Invite your friends and relatives over to view it with you. Wrote a Lyme disease brochure with the help of 2 Lyme specialists. Will email to anyone. One Lyme doctor that was kind enough to review my brochure is in the film: Under Our Skin.
ecftube 2 years ago
Thank you so much for posting these videos! Although I don't have Lyme disease, I can relate to the Auditory Processing Disorder and not understanding what the hell people are saying half the time (I do a lot of guessing), feeling really sick a lot, and people not understanding and calling you crazy. Even with medication, life is a real struggle. I really feel for you.
nonew3 2 years ago
Hugs :) I find the Audio Processing to be just as disabling as all the other symptoms. If you can't understand what's being said to you, it really affects your life and relationships. And it destroys your ability to work since you can't take orders and your boss will freak out if you do the wrong thing because you didn't understand what you were told to do.
Carrigon 2 years ago
I end up having to function like I am hard of hearing or deaf, which is weird because I can hear tones fine in a sound-proof booth. Oh, and I also have functional vision issues, which is why I am a student of Hadley School for the Blind, due to things like lack of depth perception and other functional things going on as stated on a failed functional vision test. It's hard enough having CAPD, but combined with vision issues, it's REALLY hard. I am functionally deaf-blind.
nonew3 2 years ago
It's interesting that you mentioned the depth perception. With me, I have trouble parking the car. I can't judge distances anymore. Like I can't tell if I'm too close or too far.
Carrigon 2 years ago
Same here. My disabilities, all put together, is one of the many reasons why I don't drive, and I take the bus and walk everywhere instead.
nonew3 2 years ago
Most people don't realize that there is much more to hearing and vision than hearing tones in a soundproof booth and seeing letters on an eye chart. My problem is not with my eyes and ears but with my brain.
nonew3 2 years ago
It basically amounts to processing issues in both vision and hearing, for me.
nonew3 2 years ago
My problems exactly, my brain can't make sense of all the incoming stimuli, it is just overwhelming when there is too much going on, my brain crashes like a computer.
thane17 2 years ago
I know exactly what you mean. The problem is,. everyone around me doesn't understand, and so therefore they keep thinking that I am just being crazy in the head, lazy, hypochondriac, or melodramatic. Daily life is a real challenge with this.
nonew3 2 years ago
Me, too. And it's something I didn't get to talk about in the vids. The sensory overload nearly kills me. It's yet another reason I stay away from people and going out too much. A movie theater would probably kill me. I can't take alot of noise and light and too many things going on.
Carrigon 2 years ago
Thank you so much for sharing this... I remember chatting to you by email.. this was an excellent post... I am now seeing a private neurologist in the UK.. and am being finally tested for Lyme disease etc.. you will remember I said i have had this since I was 13.. encephalitis etc.. and am now 36.. its taken such a long time.. God Bless you.. and thankyou for making the effort to post this xxxx
poppymoone 2 years ago
Keep fighting :D One of these days there will be things out to really help us.
Carrigon 2 years ago
Great videos! Thanks for sharing your story with us. What a long road huh? I can really relate to you about just being "too damn sick" to do anything. I also only do one thing a day. I have turned energy conservation into an art form. Hang in there and keep the hope.
thane17 2 years ago
I think what drives me crazy is that my neighbors are in their seventies and they have a hundred times the energy that I do. They walk their dog about six or seven times a day. They don't like to take the elevator, so they take the stairs and we are on the sixth floor. They have an active social life. And here I am in my late 30's and I can barely do my laundry. It's just unreal.
Carrigon 2 years ago
Hugs :D I think it's a combo of bad press and just people who want to be evil and ignorant. My relatives want to believe the disease doesn't exist. They want to live in ignorance. It doesn't affect their lives, so they just don't care. And the press has done alot of damage to us. They still make fun of us on talk shows.
Carrigon 2 years ago