I went to see the Rheumatologist today and he is so Lyme literate. Thank God!!!!! He was at Yale back in the 70’s during the early break outs in kids in CT. They had no clue back the what they were dealing with and he has followed the findings up through the history of Lyme.
So many things he said made so much sense to me, I felt so incredible hopeful when I left there. He said the initial blood work showed that my body is still fighting a disease of some sort but he is not yet sure if it is still Lyme or a syndrome that happens in people with a certain gene that get Lyme and then even after treatment their body does not remember how to get well so it keeps fighting with things like pain, inflammation and fatigue even though the Lyme is gone. He said the Lyme test my LLMD did a year ago was overwhelmingly positive in my case even showing many extra bands. So he said there is no doubt that I had Lyme at one point. As to whether it is still Lyme of something else at this point he is not sure.
He is very concerned that my D level was so very low last summer when Carr tested it especially because it was during the summer, and he wants to run more tests to investigate that. There are some other diseases that can be side by side with Lyme and he said many Doctors get way too attached to the ongoing Lyme treatment and do not see them. There is another disease that is fairly rare but it is also in people with a certain gene and it fits my symptoms exactly so he said he just can’t resist testing me for that. He is also testing me for a type of arthritis that is similar to Lupus and Rheumatoid arthritis but is much less well known. Also he thinks that there is a possibility that the diagnosis I got as a teen and through my 20’s of Celiac disease may have been correct and gave a long very interesting explanation as to why everything the doctors who in my 30’s and 40’s said about my not having it may have been wrong. So he is doing tow different tests for that.
He got me into the hospital today to have a bunch of x-rays and more blood work done and I just got home from that. I walked to his office this morning, stopped at Subway and got a sandwich for Don and I, came home for lunch, then walked across the street to the hospital for the tests! I love living in town verses being in the boonies!!!!
My appointment with him lasted over 2 hours and I am trying to condense it into short blurbs but basically he is rerunning some Lyme tests one of which is Western Blot he said the ELISA would be worthless at this point as well as a slew of other tests and after he analyses all of the info he said he will put together a treatment plan appropriate for which ever disease process shows up. He is confident it is one of the 4 options he mentioned. This guy really listens to every word you say and every fact about your medical history interests him, like when I broke my back. He wanted to know every detail about that whole story and what kind of work the Chiropractor was doing on me at the time and how I hurt my back doing Hospice work when I was in my 20’s.
I am soooo glad I trusted my gut and after a year on the antibiotics went for a second opinion and I also am thanking God that I landed in this particular Doctors office instead of yet another Lyme ignorant Dr.
Tuesday, July 15, 2008
Thursday, July 10, 2008
4th of July, Art Show, Fatigue
We were really busy over the fourth of July and I think all the activity set me back a bit. I have been really fatigued and emotional so I know that I need to rest but I had 2 art galleries come to the house to pick up good sized orders of my artwork and I am getting ready for a show tomorrow. In other words I did not obey my body and get the rest I needed so no I am paying for it. My pain level is quite high again. Next week I go see the Rheumatologist to see if he has anything different to offer me for the pain because my LLMD does not really offer me anything that relieves the pain and I end up getting really sleep deprived.
My husband Don went to the LLMD today and he is starting the Donta Protocol for advanced Lyme. That is the same protocol I was on for the last year but I eventually had to stop prematurely because it was causing me too much stomach distress.
Well that’s it for now I am so exhausted I think I need a nap.
My husband Don went to the LLMD today and he is starting the Donta Protocol for advanced Lyme. That is the same protocol I was on for the last year but I eventually had to stop prematurely because it was causing me too much stomach distress.
Well that’s it for now I am so exhausted I think I need a nap.
Thursday, July 3, 2008
Invitation to Link my Blog with Wellsphere.com
Below is a letter I got inviting me to link my blog with Wellsphere.
Hi Linda,
I was searching for the best medical bloggers when I discovered your blog at lindaslymediseasejournal.blogspot.com/. I want to tell you I think your writing is fantastic -- I really liked your post on : “"Our Lady of Exhaustion" by Carol Hechtenthal”. My name is Dr. Geoff Rutledge, and I've taught and practiced Internal and Emergency Medicine for over 25 years at Harvard and Stanford medical schools. I'm also the Chief Medical Information Officer at Wellsphere (http://www.wellsphere.com/), where we are building a network of the web’s leading health bloggers, and I think you would be a great addition.
Wellsphere is a fast growing, next-generation online platform that is revolutionizing the way people find and share health and healthy living information and services. Our platform connects millions of users with the valuable insights and knowledge from health leaders and knowledgeable writers like you.
We are now launching a new health community on Lyme Disease, and I would like to invite you to be a featured blogger for this community. By joining our network of hundreds of leading health and healthy living bloggers, you will be in great company, and will benefit from exposure to the expanded audience of the Wellsphere community. When you join, we also will feature you on our very popular WellBlog (http://www.wellsphere.com/blog.s), with a link back to your blog.
We will republish the postings you’ve already written for you (through your RSS feed), and feature them not only on the Lyme Disease community pages of the site, but also within a new dynamic magazine-like Wellsphere360 section, where we give users a comprehensive view of expert information, news, videos, local resources, and member postings on topics you write about. Your profile page on the site will give you special status as a featured blogger in the Lyme Disease community. If you are an active contributor, we also will feature you on our homepage at http://www.wellsphere.com/.
By connecting to the Wellsphere platform, you will greatly expand the audience for your postings and attract additional readers to your blog. Also, your posts will link back to your blog, so you will benefit from Wellsphere's high ranking and large readership interested in your topic, which will give you more traffic, additional relevant audience, and a higher ranking for your blog.
If you would like to be a featured blogger in the Lyme Disease community, just send me an email to Dr.Rutledge@wellsphere.com. You can see a sample of a Wellsphere360 special section at http://www.wellsphere.com/Wellsphere360/diabetes-type-2.htm
Good health,
Geoff
--
Geoffrey W. Rutledge MD, PhD
Chief Medical Information Officer
Wellsphere, Inc.
http://www.wellsphere.com/
Hi Linda,
I was searching for the best medical bloggers when I discovered your blog at lindaslymediseasejournal.blogspot.com/. I want to tell you I think your writing is fantastic -- I really liked your post on : “"Our Lady of Exhaustion" by Carol Hechtenthal”. My name is Dr. Geoff Rutledge, and I've taught and practiced Internal and Emergency Medicine for over 25 years at Harvard and Stanford medical schools. I'm also the Chief Medical Information Officer at Wellsphere (http://www.wellsphere.com/), where we are building a network of the web’s leading health bloggers, and I think you would be a great addition.
Wellsphere is a fast growing, next-generation online platform that is revolutionizing the way people find and share health and healthy living information and services. Our platform connects millions of users with the valuable insights and knowledge from health leaders and knowledgeable writers like you.
We are now launching a new health community on Lyme Disease, and I would like to invite you to be a featured blogger for this community. By joining our network of hundreds of leading health and healthy living bloggers, you will be in great company, and will benefit from exposure to the expanded audience of the Wellsphere community. When you join, we also will feature you on our very popular WellBlog (http://www.wellsphere.com/blog.s), with a link back to your blog.
We will republish the postings you’ve already written for you (through your RSS feed), and feature them not only on the Lyme Disease community pages of the site, but also within a new dynamic magazine-like Wellsphere360 section, where we give users a comprehensive view of expert information, news, videos, local resources, and member postings on topics you write about. Your profile page on the site will give you special status as a featured blogger in the Lyme Disease community. If you are an active contributor, we also will feature you on our homepage at http://www.wellsphere.com/.
By connecting to the Wellsphere platform, you will greatly expand the audience for your postings and attract additional readers to your blog. Also, your posts will link back to your blog, so you will benefit from Wellsphere's high ranking and large readership interested in your topic, which will give you more traffic, additional relevant audience, and a higher ranking for your blog.
If you would like to be a featured blogger in the Lyme Disease community, just send me an email to Dr.Rutledge@wellsphere.com. You can see a sample of a Wellsphere360 special section at http://www.wellsphere.com/Wellsphere360/diabetes-type-2.htm
Good health,
Geoff
--
Geoffrey W. Rutledge MD, PhD
Chief Medical Information Officer
Wellsphere, Inc.
http://www.wellsphere.com/
"A Piece of Me" by Susan Chacon & Photograph by Chris Burgess
Below is a new poem that was submitted to the Lyme Awareness Art Project by Susan Chacon. Susan also submitted the Photograph which was taken by Chris Burgess.
A Piece of Me
Sometimes I am terrified
Seeing pieces disappearing
Trying to refocus
But seeing is believing
Crying for a lost life
Unsure of what is left
Refusing to believe
That this is for the best
Birds looking in my window
With curiosity
Wondering why I’m lying here
Unable to be free
The pain I’ve come accustomed to
Has taken most of me
My soul cries out for someone
To grant serenity
By Susan Chacon
April 10, 2008
Apple Valley California
You can view all of the LAAP Art/Photos & Poetry at: http://www.crowhousestudio.com/Lyme_Awareness_Art_Project_2.html
Send me your Lyme related poems and art and I will post it on the LAAP site for you.
Tuesday, July 1, 2008
LAAP Website Facelift, Weight loss, Staying off Sugar
I have been working on the Lyme Awareness Art Projects website for the last two days giving it a facelift. It is still piggybacked to my art website, someday I would like to have it on its own website but for right now I can’t afford the monthly payments to have two websites up and running. I still have a few pages left to change over to the new format but it is very close to done.
You can view the new and improved site at this link: http://www.crowhousestudio.com/Lyme_Awareness_Art_Project_2.html
Public Health Alert had an article on obesity and Lyme last month and they were saying how difficult it can be for Lyme sufferers to lose weight. I am happy to tell you that if you are one of the many people that gained tons of weight from Lyme (some people actually lose tons of weight) then there is hope. I have lost 16 pounds over the last month and a half on Weight Watchers so weight loss is possible.
Sugar is a real no-no for Lyme sufferers, it feeds the spirochetes and also yeast over growth. It can also cause yucky funguses on your feet and in moist areas of your body such as groin, underarms, and under breasts. It also will make you more tired and gain more weight. I was on abx for so long that I now take Diflucan once a month to combat my yeast problems. When I am bad about eating sugar I have flare ups so I have to try to really avoid sugar. I do notice that when I eat sugar the Lyme and Yeast make my cravings even worse, but when I stay away from sugar eventually my cravings go away.
You can view the new and improved site at this link: http://www.crowhousestudio.com/Lyme_Awareness_Art_Project_2.html
Public Health Alert had an article on obesity and Lyme last month and they were saying how difficult it can be for Lyme sufferers to lose weight. I am happy to tell you that if you are one of the many people that gained tons of weight from Lyme (some people actually lose tons of weight) then there is hope. I have lost 16 pounds over the last month and a half on Weight Watchers so weight loss is possible.
Sugar is a real no-no for Lyme sufferers, it feeds the spirochetes and also yeast over growth. It can also cause yucky funguses on your feet and in moist areas of your body such as groin, underarms, and under breasts. It also will make you more tired and gain more weight. I was on abx for so long that I now take Diflucan once a month to combat my yeast problems. When I am bad about eating sugar I have flare ups so I have to try to really avoid sugar. I do notice that when I eat sugar the Lyme and Yeast make my cravings even worse, but when I stay away from sugar eventually my cravings go away.
Sunday, June 29, 2008
Exploring New Options
It is really nice to be getting back to my creative work and the new studio is coming along nicely but the Lyme arthritis has really been flaring up and my pain levels have been really high so I am afraid I will have to take it much slower than I would normally like to. I finally got a referral to the rheumatologist I have been trying to get in to see, it took a month to get that referral for no good reason that I can understand. I am hoping he can come up with a treatment plan that will heal my very swollen and painful joints.
My Lyme Dr. fired me as his patient because I started taking herbs and he only wants you to take medications that are on the Donta protocol. I felt there was no harm in experimenting however since I was off the abx anyway do to digestive problems and stomach pain caused by the abx. Right now I am seeing an Osteopathic MD once a month and he has prescribed some herbs and I have added some vitamins. It really feels right to me to be able to take these herbs and supplements to build my body and immune system back up so in a way I am relieved to not be on the Donta protocol right now.
I have started a new blog that relates more to the “Art” side of my life. I have put a link on the right of this page by my website link. You can visit the site and see photos of the progress we are making on my new studio by clicking this link: http://brattleboromuse.blogspot.com
My Lyme Dr. fired me as his patient because I started taking herbs and he only wants you to take medications that are on the Donta protocol. I felt there was no harm in experimenting however since I was off the abx anyway do to digestive problems and stomach pain caused by the abx. Right now I am seeing an Osteopathic MD once a month and he has prescribed some herbs and I have added some vitamins. It really feels right to me to be able to take these herbs and supplements to build my body and immune system back up so in a way I am relieved to not be on the Donta protocol right now.
I have started a new blog that relates more to the “Art” side of my life. I have put a link on the right of this page by my website link. You can visit the site and see photos of the progress we are making on my new studio by clicking this link: http://brattleboromuse.blogspot.com
Monday, June 23, 2008
Still off Abx Due to Stomach Problems
I have been off the antibiotics for quite a while now because of my stomach problems. My leg, knee and hip pain has been very bad at times, keeping me awake at night. I still have really bad fatigue but many of the symptoms I had before I started the abx and anti-malaria drugs have cleared up completely (thank God!!). My LLMD is very upset that I cannot tolerate the abx, he says all of my symptoms will return and that I will once again get worse.
My neighbor says the Doctor she works for uses IV abx, mine uses oral, so I am wondering if I should try to find a Dr. in Brattleboro that will put me on the IV abx. I guess her Dr. says the oral abx does not cross the brain-blood barrier and that it is too hard on the digestive tract. The problem is that Dr’s here are so busy that many practices are closed and even when I found one that was still taking patients I could not get in until September! So until them I am just taking things one day at a time. I am resting a lot, trying to get exercise when my legs are not too painful and trying to get some work done to get some much needed income.
My neighbor says the Doctor she works for uses IV abx, mine uses oral, so I am wondering if I should try to find a Dr. in Brattleboro that will put me on the IV abx. I guess her Dr. says the oral abx does not cross the brain-blood barrier and that it is too hard on the digestive tract. The problem is that Dr’s here are so busy that many practices are closed and even when I found one that was still taking patients I could not get in until September! So until them I am just taking things one day at a time. I am resting a lot, trying to get exercise when my legs are not too painful and trying to get some work done to get some much needed income.
Subscribe to:
Posts (Atom)
