Scientists Say Chronic Lyme Disease Is Not Real
There is an uproar in the Lyme disease patient community over a new report by a group of scientists and doctors that says chronic Lyme disease does not exist:
A prestigious group of physicians and scientists says there is no evidence that chronic Lyme disease exists, and that patients may be doing themselves more harm than good by undergoing prolonged antibiotic therapy.
They prefer to call the problems of people with long term symptoms post Lyme disease syndrome and compare it to fibromylagia. Frankly, I don’t care what they call it. I want them to come up with a way to fix it!
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November 2nd, 2007 at 1:38 am
Hi!
Nice to find your blog online. I recently started treatment myself. Just woke up from a fantastic Herx induced coma I used to call a nap. I started a blog on the issue myself and am logging my progress. I will tap into yours to see how you are doing as well.
Here’s the scoop with the chronic Lyme semantics. Before EM, Drew felt awake enough to do yardwork and go for walks with the kids. A few months after EM, Drew can barely walk in the evening sometimes and hits a wall of exhaustion at 2 pm.
So yes, who cares what you call it, jsut don’t tell me that I have something that I do not after I am positive that none of this was ever a remote problem with my perfectly healthy self before … the rash!
But I am not bitter at my PCP…
November 2nd, 2007 at 2:01 am
Drew,
My doctor is willing to try things, she just doesn’t know what to try. We’ve been looking at all the research and so much of it is conflicting. I’ll keep an eye on your blog and I hope you begin to improve soon.
November 12th, 2007 at 7:15 pm
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.
November 13th, 2007 at 5:40 pm
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.
March 4th, 2008 at 5:54 pm
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.
May 13th, 2008 at 9:07 pm
Thank you for shining the spotlight on Lyme related issues. I’d love to invite you to share your experiences with Lyme on Trusera.com, an online health network where you can find and share real-world experiences with others who’ve been there. Trusera was born out of our founder, Keith Schorsch’s experience with Lyme disease, which took eleven doctors and finally one email from a friend to diagnose (http://www.trusera.com/users/storyguy/stories/the-bite-that-changed-my-life). The heart of our business is that it is way too hard for ordinary people to find relevant firsthand health insight online. Second, we believe people are more than their diagnosis; we want to create a place where people of a wide variety of health interests, attitudes, and perspectives can come together.
Please let me know if I can send you an invitation to the site – would love to talk to you more about some meaningful programs to help build this resource.
Warm Regards,
Tara.holahan@trusera.com
http://www.trusera.com
Trusera username: teh4
August 25th, 2008 at 1:46 am
Right. Does not exist. Went from being, a hiking, biking, skiing, kayaking, you name it athletic person…to a couch potatoe. Something which I detest, so please do not tell me I am making it up. Such absolute asses. May they all get Lyme and enjoy the ride.
October 2nd, 2008 at 6:51 pm
All I can say is Lyme sucks just as much as the moronic doctors who say 10 days of doxy is enough.
Maybe there’s no cure or treatment or anything. Someone will find it some day some where. Most likely someone who has it or who has a spouse, child, sibling or parent who has it.
Why is it the only doctors who treat this are the one’s who’ve had it?
October 3rd, 2008 at 10:19 am
Our whole family (me, husband, 2 kids were just diagnosed in the the last few months. I am a nurse and do tons of research and reading–have all you people been tested and seriously clinically assessed for co-infections (ie: HME, bartonella, babesia, etc.)? The lyme treatment it appears does not work if the co-infections are not addressed–it comes back inits cycles (which means you still have it) if the co-infections are not also treated–Dr. Ernie Murakami says some co-infections MUST be addressed first. Get tested by IGENEX, go to drerniemurakami’s website, and read Burrascano’s treatment guidelines for co-infections (and lyme) from the canlyme website (Canadian lyme website). Our daughters each had/have 4 and 3 co-infections and I have at least one. Good luck, keep plugging, and search for doctors who will consult with Dr. Murakami, or who at least read and use Dr. Joseph Burrascano’s guidelines.
March 6th, 2009 at 7:32 am
Lyme Disease has truly ruined my life. Ever since I was diagnosed in the fourth grade (one of the first peds. cases in MD.), I have slowly been deteriorating… I’m turning 23 next week and I feel like I’m 60. Doctors don’t understand, and the other half who ‘kind of’ understand STILL wont help with at least treating all of the pain…. I can’t even get out of bed in the mornings because it’s so painful… my life is just, well, I make the best out of it & I’m thankful to be alive… but I’d be even more grateful for some answers, doctors who believe me, and mostly, just starting on some kind of planned path to fulfill life dreams…
Is anyone else hurting like I am? This is my first time reaching out to a website… I guess I’ve reached the point where enough is enough- I literally can’t bare another night.
March 7th, 2009 at 1:54 pm
Jessica,
I’m sorry to hear you are in so much pain. I had two years of Lyme’s and complications from it and it really was hard. I can’t imagine what you’ve gone through. Currently, I’m doing pretty well and only have residual joint pain when a front goes through.
I did feel incredibly old and exhausted until my doctor diagnosed an underlying severe vitamin D deficiency. If you haven’t been tested for the deficiency, please ask your doctor to test you, too. I was a few weeks away from a wheelchair from all of the pain when my doctor thought to do the test.
It seems like the actual Lyme’s disease is just the tip of the iceburg because it causes so many other things to go wrong. I’ll be posting about it later, but my mom’s little dog has Lyme’s, which caused organ failure.
I hope your doctors can come up with an effective treatment regimen for you. For a look at what some people went through and how the right treatment changed their lives, I recommend the award winning documentary Under Our Skin. It is a wonderful DVD and it is nice to see that someone else “gets it” even if you can’t actually talk with them.
Keep us posted on how you are doing.
Katelyn
May 27th, 2009 at 5:38 pm
Jesssica, i understand. Every morning and being awake is horrible in terms of nerve and bone pain. I’m 20.
November 3rd, 2009 at 5:10 pm
Lyme….the very unforgiving disease. I was diagnosed in May but think I have probably had it longer than that. I am an RN…just recently was asked to resign my position due to being so ill. Did the doxycycline then IV rocephin for 3 weeks only to find out that they probably missed the spirochette lifecycle by not doing at least 4 weeks of IV rocephin. Am I getting better…YES…but no. Lyme definately does seem to cycle. I may have one good week where I feel pretty functional, other weeks I have so much joint pain, muscle pain, dizziness, nausea, headaches that I appear to be 90 years old at 38. I am very fortunate that I have a wonderful husband and family that have been very supportive. As there where many days I couldn’t even figure out how to turn a radio on…I would just look at the buttons and couldn’t comprehend what to do next. I used to be very involved in Womens Ministry but now have a hard time even finding the books of the bible which before I didn’t even have to think about. I gain so much peace from reading others that struggle in the same way. It helps to know that you’re not alone.
November 3rd, 2009 at 6:34 pm
Tammy,
I have the same problem with things like the books of the Bible. It is so frustrating. I’m praying God will restore your memory. I’m doing a little better with things like balancing the checkbook, remembering names, etc. than I was and noticed the other day that I could remember some of my favorite Bible verses easily again, so I know that, with time and faith, it will happen for you, too.
March 13th, 2010 at 12:24 am
All I can say is Lyme sucks just as much as the moronic doctors who say 10 days of doxy is enough.
Maybe there’s no cure or treatment or anything. Someone will finx it some day some where. Most likely someone who has it or who has a spouse, child, sibling or parent who has ot.
Why is it the only doctors who treat this are the one’s who’ve had it?;