posted
I am new to this site. I am trying to figure out how to use it. Have patience please. I was just wondering if anyone was misdiagnosed? I was told I had fibromyalgia 13 years ago. I dealt with it. I would have months that I felt good with no symptoms, then others where I was on the couch. In the last three years I have gotten progressively worse. My mind is totally gone. Simple tasks are unbearable. I sometimes cannot remember where I am going, my words get fumbled, etc. I went to my primary doc 3 years ago and found out I had mono. Now I have the epstein bar virus that becomes active. Then after many visits to her, she came up with lyme disease based on my symptoms. My lyme test was negative but certain bands showed up. I'm not sure I quite understand it all. I am currently seeing a lyme doctor that does not take health insurance. I am on so many medications my mind is spinning. So my questions is: What do I really have? Fibromyalgia, chronic fatigue, epstein bar virus or lyme disease? All the symptoms seem the same. I have gotten progressively worse over the past 3 years. For the last year, I have been in constant pain, fatique, memory loss, joint pain, muscle aches, stomach issues, urinary problems (the list goes on). I have 3 children to take care of. My middle son has down syndrome. I need my life back. I can't even take care of myself, let alone my children. My husband has finally accepted my illness. It took a long time. When he came with me to the lyme doc, I know he finally understood. I don't think anyone can understand how we feel unless you experience it firsthand. I cannot make plans with friends. I take it day by day. If I'm having a good day, then maybe I can meet a friend for lunch. They just don't understand what I'm going thru. Anyone who has any thoughts?
Posts: 151 | From Massachusetts | Registered: Nov 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Karen,
Welcome to the board. First, some housekeeping. When you post, please post in short paragraphs with a space between each paragraph.
Many people with Lyme have cognitive problems making it difficult to read large blocks of text.
Yes, many people with Lyme have been misdiagnosed with other disorders. I was diagnosed with fibromyalgia before Lyme.
It seems in many people that Lyme may actually be the trigger of CFS and Fibromyalgia. Those are both syndromes, so there is no known cause. A lot of people with CFS and Fibro later get diagnosed with Lyme.
Many people with Lyme also find they have multiple infections. Some are coinfections that are also carried by ticks. Others are more common infections, like Epstein Barr.
What seems to happen is that Lyme stresses the immune system so much, that more common infections cause much larger problems. In your case, maybe the Mono combined with Lyme was too much on your system. That could be why things have gotten worse since then.
Feel free to ask questions and read and learn from the board. There is a lot of information here. Somebody will be along shortly to give you the newbie links, which is a great place to start reading.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I was also mis-diagnosised with CFIDS & Fribro along the way. I got better many times on abx's and if I had CFIDS or fibro I probably would not have gotton better or herxed so badly on the abx's and other treatments.
Been a long time in treatent now and am much better.
Lyme-It does really stink. I also don't think many people can no fully understand having lyme untill you have it. Thats why the folks here are so important to me.
There's alot of great info in the "newbie Links" posted in medical:
Re-about the co-infections you mentioned-A tick carry's many other diseases besides lyme. When it bites you it can transmitt these & they are called co-infection:
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Welcome Karen, in another post, I gave you the name of a LLMD in your area, and asked you to respond IF I didn't sent you my 19 pages of newbie links/advise.
Yep, misdx for 34 years until 6-04; many dx from the beginning: mono, fibromyalgia, irritable bowel & bladder, TMJ, GERD, hiatal hernia, migraines, etc.
Part of my story is in my links so I won't repeat here. GLAD you found us Karen; you will learn a lot and get SUPPORT which we all desparately need to get thru our lyme journeys. Bettyg
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Just to know that I can vent to others who are going thru this same miserable disease.
I to have many symptoms: stomach issues, urinary problems, cognitive issues, depression, anxiety.
One thing I did notice is after going in the hot tub symptoms got worse.
I got to thinking about what my LLMD talked about, lyme does not like heat.
Maybe that is a good thing I got so sick.
I am seeing him this Wed coming and I have a lot to talk about
There is so much that is said to me, it's hard for my brain to process it all.
I am so glad to have found you all. Your support means the world to me
THANK YOU
P.S. I haven't figured out how to use all the icons, I'm sure I will soon
Love and THANKS
karenb
Posts: 151 | From Massachusetts | Registered: Nov 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Good luck with your appointment wednesday karen.
Re: the hot tub. Too extreame heat can make me like a limp rag & has in the past set me back. I used to drink alot of fluids before & drink an electro-lite formula too. But still, if the water was too hot can really drain me & lay me low. Not such a good thing really.
I now only can do mild heat...not so hot I want to pass out- which if it is you have to be careful you don't.
So be careful Okay?
Hope you can find your way back to feeling better it may take time & patience and inner strength.
Hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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