in our area often will not appoint unless you have
a huge bull's eye to accompany the bite....so I
have been diagnosed for fibromyalgia for 7 years
and probable MS 5 years ago.
The last time docs tested me for Lyme was 5 years
ago and I had positve bands, but was 1 short of a
CDC diagnosis so it was deemed negative for Lyme.
So I moved on.....yet I continue to get sicker
and continue to search for answers and I am now
aware that a LLMD would test using different
tests and criteria, and I indeed have a positive
medical history for Lyme. I continue to get sicker
despite the many meds I take and I really want
this investigated by a doc who is truly literate
in Lyme.
Now....I am rambling. I hope this board becomes a
source of support for me. I will be happy to
support all of you in your journey to better
health and thus increse happiness and calm.
Thank you and hello to all.
[ 07. January 2007, 07:53 PM: Message edited by: ourplanet ]
Posted by cara (Member # 10940) on :
Hi,
I know how bad it is there. I took my daughter to Jersey shore to a great doc there. Spent 5 weeks there. The people were so great there. One of the places they even believe in Lyme.
Cara
Posted by Michelle M (Member # 7200) on :
Hi, Ourplanet. Welcome.
So glad you found us!
It's sad to hear you were one band short of a "positive" test.. Doctors are supposed to diagnose you clinically and as usual, they are much more invested in DISPROVING lyme than in helping you.
You really need to be seen and tested by an LLMD (lyme literate medical doctor). With all your tick bites, there's no telling what co-infections you have. Regular ducks (non lyme literate docs) are normally clueless about even the existence of coinfections, much less how to treat them.
Find a doctor (post in the 'seeking doctor' forum), read everything you can from the Newbie Links, then keep coming for questions and support. You're hopefully on your way to better health!
Michelle
Posted by tdtid (Member # 10276) on :
Ourplanet,
I am so very glad you found us. I too use to be a regular on a fibro board and did the back and forth between lupus and M.S. for five years.
It was two months ago that I tested positive and see a LLMD. You talk about your test not having enough bands to be CDC positive, but that would make me tell you to please, please seek out a LLMD in your area.
It is a known fact that lyme tests aren't very reliable so it needs a clinical diagnosis, much like they are doing with fibro or chronic fatigue.
Getting a specialist will atleast help you know if you have it or else rule it out. But with that said, many researchers are saying that most fibro IS lyme. So please get tested by someone reputable.
To get a LLMD near you, please post a note over on the section of finding a doctor and someone will give you a list of the doctors in your area.
Just finding this place was a major breakthrough for you. I wish I had had the insight to find it when I was told I had fibro. Good luck and please stick around.
Cathy
Posted by ourplanet (Member # 10933) on :
Thank you all for your warm welcomes and great
suggestions. I have a lot of work to do it seems.
But...it gives me something to work toward if I can
get a doctor to genuinely hear my concerns and help
me seek the answers I need. I hope I may also help
some of you who are more knowledgable than myself
also. You will be seeing more me. I wish you all
the Energy to keep on..keeping on.
[ 07. January 2007, 07:54 PM: Message edited by: ourplanet ]
Posted by tdtid (Member # 10276) on :
Ourplanet,
I do believe one of the hardest parts of this is the overwhelming feeling of all we have to do when we just don't feel well.
I do know what a relief it was to see my LLMD and be told that he DID understand what I was going through, that I had tested positive and he was going to start treating me.
The whole process is very hard to fathom but getting treatment is better than taking all the band aid drugs for all the mis diagnosis's most of us get along the way.
This is not to say that you personally have lyme or co-infections, but you have said enough that if I were you, I would seek a lyme specialist and atleast know one way or the other.
Most of us have found our lyme doctors to have a quality that most of the other specialists lack. COMPASSION. So the visit isn't nearly as hard as I was expecting. I had told my story to so many specialists, I didn't want to go through that again, but wow....what a life changer.
Please keep us posted on how things go for you. We really do care.
Cathy
Posted by Cassie (Member # 2106) on :
Hi Ourplanet, Welcome to the best place in our planet
Sounds familar, I too was diagnosed with fibromyalgia. Was bitten in 1988, became very ill in 1996, seen a fibro specialist who sent me down to Long Island, dz lyme in 2001.
Pleased to meet you Your new friend Cassie Posted by AZURE WISH (Member # 804) on :
Welcome
Many of us went mis/undiagnosed for a long period of time...
unfortuantely it is quite common.
South Jersey is crazy with lyme... I have known quite a few people who have/had it.
Please find a llmd.If you post in the seeking a dr section someone will pm you a lyme literate dr's info.
so make sure you private message is enabled.
Best wishes Posted by CaliforniaLyme (Member # 7136) on :
W E L C O M E ! ! !
I had fibromyalgia once. It sucked!!! It is 100% gone through IV Rocephin. I have zero pain on a daily basis now with the one exception of once a month I get a pre-period flare in my left knee for a few minutes total! Hope you get better- this is a good Lyme board. Sincerely, Sarah in CA
Posted by catalysT (Member # 10786) on :
Welcome ourplanet!!! I sincerely hope you can sort your health problems out really soon! If you think I can be of any help, ask away.
Posted by hopeful123 (Member # 3244) on :
welcome!!! this is the place to get the information, support and courage to fight the lyme battle and win.
i think it's outrageous that they were that ignorant about a diagnosis, but i can't say that i'm at all surprised/
don't worry, you get what you need to move on!! Posted by Lymetoo (Member # 743) on :
Yep, I had "fibromyalgia" too. I was dxd in 1980. "It" is now gone! I took abx for four years and knocked out Lyme and babesia. Kicked butt!
Your number one job is to find an LLMD. I have a list of names if you need help.
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