posted
I have both EDS and what has been diagnosed for many years as severe fibromyalgia. I've been accidentally injected with someone else's blood in a lab, I've had cat-scratch fever, and I've been bit by a tick in New Jersey that left a large EM. So who knows what I have? What I do know is that if I have fibromyalgia it's a bizarre, unknown form that includes actual joint damage, chills and lowered body temp, hyperacusis, palpitations, a temporary period of health after any antibiotic usage, and several other weird things that just make me look like a basket case.
I only just in the last 24 hours started looking into Lyme disease on the internet. (I've mentioned it to doctors, but they have always dismissed it). Here is the problem I'm having: it looks to me like EVERYONE who has "chronic Lyme disease" has been treated for initial Lyme Disease. All the literature assumes it. I never was. I never received any treatment at all.
Am I such an unusual case? Should I approach a doctor and ask for an "initial" treatment for Lyme disease, since I was never treated to begin with?
I'm searching for straws here, because it's beginning to look like I'm not going to be able to find a Lyme-qualified doctor anywhere in New Mexico.
Posts: 13 | From Santa Fe, NM | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Chaya, You must see a Lyme literate Md and the sooner the better. Fibromyalgia is nothing more than a group of symptoms, usually caused by Lyme Disease. I was diagnosed with Fibro years ago and so was my sister, we both have Lyme - many diagnosed with Fibro have LD.
Being bitten by a tick and having an EM rash your doctor is suppose to start antibiotic treatment without even testing for Lyme. But even if he did, he likely wouldn't give you hig enough doses long enough. Lyme is not based on a blood test, in fact the blood test is completely unreliable.
There is too much to learn that I couldn't possibly give you here, so please read this link to learn more: http://tinyurl.com/2oylx6
Also, read more at the link at the end of my post. Education is key and this is a very complex disease that doctor's are not literate about. It is up to you to learn about it and get the help you need. After you read the links I have provided, you can email me from the contact link at the site and I can refer you to someone with a list LLMD's nationwide.
I have lived with Lyme for over 12 years and did not know it. I have always been very sick, but doctors could never figure out what was wrong with me. I figured out I had lyme myself.
Before figureing out I had lyme, I was diagnosed and 'treated' for Fibromyalgia, Chronic fatigue syndrom, Bursitis and "a very unusual R. Arthritis".
Now I have been doing treatment for about 2 months now on abx.
I have no idea what perminant damage, if any I have sustained from having this so long with out treatment. Hopefully I will be fine.
My LLMD has been treating people for many years, and is having a hard time treating me. Today he told me my lyme is giving him 'a run for his money'. But he is confident that I will get better and that he can help me.
Its not too late for you. Get tested and treated,
If you have any questions or are interested in comparing your symptoms with mine, figuring out better what is from the chronicness of our lyme feel free to personal message me!
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Since I never saw the tick or had a rash, it is
Impossible for me to know exactly when I got infected.
Probably about 5 years ago.
I've seen "chronic" described as either having symptoms for over one year,
Or ongoing antibiotic therapy for over one year.
Not sure how co-infections play into this one year mark for antibiotics,
As we know that treatment of co-infections lengthens and complicates treatment.
Realistically, I look for remission.
I still hold out hope for a cure though.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I was never treated after being infected and that was over 38 years ago. I was just told I had Lyme 2 1/2 years ago. There was over 33 years for this infection to brew before I was ever given an antibiotic that I took to treat a known co-infection, mycoplasma fermentans. Thankfully the same abx works for Lyme.
Posts: 1251 | From california | Registered: Apr 2005
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posted
I was not initially treated ... I did not know what it was for 35 years. Some of that time it was more active, some of that time it was more in the background.
Then I got really sick with it.
You need to see an LLMD. I had two regular docs totally dismiss the fact that I had a CDC positive Western Blot. Somehow they don't "believe" in the disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I was misdiagnosed with FM and CFS for over 20 years. I've been taking antibiotics now for a
year and a half and I'm just starting to feel a little better. My LLMD said it would take at
least three years of antibiotics but I know it will take much longer.
Your case is not at all unusual...in fact, I think it's very common.
Hope this helps!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
My daughter has had Lyme for 11 years and has only begun any treatment in June. She was misdiagnosed with CFS, Fibro, Chronic Mono, EBV, depression...so...she's had Lyme pretty chronically, but no treatment to speak of until recently.
I am not even sure if chronic Lyme is a precise term or just a reference to people who remain ill for a long time...
Posts: 217 | From New Jersey | Registered: Apr 2007
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I have had lyme symptoms for 10 years, following a tick bite. I did not get diagnosed until after my kids were diagnosed this spring.
There is a wealth of info about lyme here. (more than you'll get from most MD's)
Stay positive, it sounds like you are on the right track.
Best wishes
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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