posted
I have been ill since 1996 and was diagnosed with FM in 1998. I went through years of doctors and various treatments, all with no relief. Last fall I started researching CFS, which seemed to describe my symptoms better and in my research came across Lyme. Last week I asked my doctor to do a Lyme test and it has come back positive. I am already so sick and so tired that while I am excited to have a diagnosis I am already seeing conflicting info from the American Lyme Disease Foundation and my other research on the Internet and in forums. The ALDF states that long term antibiotics are not recommended and do not work. My other research says the opposite. Please help, I am really close to my breaking point. I am only working a few hours a week, can barely get out of bed most days, am single and really get no support from my family. I am in Ohio and am willing to travel but how can I even know which doctors to trust. Really sorry to be so negative but I'm in a bad place.
Thank You.
Posts: 24 | From Cincinnati OH | Registered: Mar 2010
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posted
The DVD "Under Our Skin," www.underourskin.com, and the book "Cure Unknown" by Pamela Weintraub explain why you are getting conflicting information.
To find someone who can actually help you with Lyme, you need to find an LLMD (Lyme Literate Medical Doctor) who is a member of or educated by ILADS (International Lyme and Associated Diseases Society).
Post in the "Seeking a Doctor" folder, and someone will help you find an LLMD.
ILADS is an organization of the doctors who actually treat chronic Lyme disease. Their website has reliable information for the public about Lyme, and links to research.
Many people who actually have Lyme are first misdiagnosed for years with fibromyalgia, chronic fatigue syndrome, or other diseases.
Lyme is treatable, and the cause is known.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Summerzen,
Welcome!
It is wonderful that you found us! Most of us have been in a similar situation as you.
I was diagnosed with fibromyalgia for 21 years before discovering it was really just a symptom of chronic lyme.
I agree that you should go to the Seeking a Doctor Board here and post for a "LLMD near Cincinniati,OH".
Chronic lyme is real and treatable.
Unfortunately, most Dr's deny this and tell you you either do not have lyme, or they give you 3-4 weeks of antibiotics and tell you that you are cured.
It is also very possible that you have common coinfections like Babesia, Bartonella, Ehrlichia, etc.
Read as much info as you can from ILADS.org and other reputable sites.
Please keep reading and posting. Medical Questions will get many more responses on the Medical Questions Board here.
All the best to you!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
simple without being overwelhmed is to download & print greenbooklet from http://lymepa.orgPosts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Summerzen - Hang in there and read read read, if you educate yourself which you MUST do you will learn all the things you can do to make sure you are properly treated finally.
So sorry for all your suffering.
There is SO much great information on this website.
You may not get support from your family but you will get it here!!!!
Posts: 448 | From minnesota | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Since you are so ill, here is something easy to do to educate yourself on the lyme controversy.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You have to decide which side you believe is right--the Infectious Disease Society of America (IDSA) or International Lyme & Associated Diseases Society (ILADS).
I got rid of lyme by going to an ILADS doctor. My internist (following IDSA guidelines) would only treat me for 30 days, and that was cruel. My symptoms came right back. I could tell he felt terrible about it, but he had to worry about losing his license to practice medicine, so I had to suffer.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks to all of you for all the links, info and support! I will read, study and get informed!
Posts: 24 | From Cincinnati OH | Registered: Mar 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
What you expressed is normal. Not able to read what others wrote. But...
What you are doing is good. Gathering info. It is your body and you need to be OK with what you are putting into it.
Suggest you find a LLMD (Lyme Literate MD) One who is a member of ILADS and discuss your above questions.
I had another thought but darn if I can recall it now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Summerzen,
You wrote that you are getting a lot of information from the American Lyme Disease Foundation (ALDF). Well, they are the organization linked to the IDSA - and you will not find correct information there.
The LDA, Lyme Disease Association is the group with the research that explains not only lyme but also other tick-borne infections. The LDA has research from ILADS.
Yes, it's confusing and the two groups are at odds. But you have hundreds and thousands of lyme patients whose lives have been ruined by the IDSA and their mouthpiece, the ALDF.
You also have many patients whose lives have been saved by treatment with ILADS-educated doctors and the LDA has helped in patient education getting to the truth.
A couple of these links are posted above. I'll leave them in this set so as to confirm their importance. And this is just the beginning. You can read till the cows come home but you really need to first call and schedule an appointment with an ILADS-educated LLMD.
IGENEX - details about testing for all tick-borne infections. There are some other good labs but, as with lyme, not all labs are the same or do the right tests.
Tests will also not necessarily be enough. You'd need the eyes, ears, wisdom and experience of a good LLMD.
posted
Also diagnosed with Fibromyalgia. After a positive ELISA and one band on a Western Blot(anybody guess which one??) My non-LLMD said I couldn't have Lyme. Why? "We don't have Lyme in Florida" ok whatever.My heart breaks for all the suffering. Pray first and then READ A LOT. Pray a lot too. Cure Unknown is incredible. Bless all of you out there who take the time to try to lift up those who have lost hope. Stay RESOLVED.
Posts: 246 | From south florida | Registered: Mar 2010
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