posted
This will probably sound ridiculous but two years ago I was diagnosed with Lyme disease and was treated with three weeks of doxycycline. I did not exactly feel a whole lot better after finishing the antibiotic. Since then I have episodes of extreme, and I mean extreme, fatigue, low back pain, legs aching, mild fever and chills to the point where I end up spending a lot of time in bed. This can go on for a period of months as it did last fall, or improve on its own as it has now after going on cefuroxime by mouth for a sinus infection. I had those exact symptoms just before developing the rash which led to the diagnosis of Lyme two years ago. Is it possible to still have some bacteria active and that that is the cause of these repeated episodes of what feel like the initial set of symptoms I had before I was diagnosed? My doctor thinks I'm crazy. Perhaps I am.
Posts: 6 | From Guilford, CT | Registered: May 2006
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Carol B
Unregistered
posted
You just about told my story ! I was diagnosed two years ago-and treated inadequately with three weeks of Ceftin.
What followed was two years of frustration, many specialists and decline in my health. Prmary Care doctor dismissed my concerns it may still be lyme.
Finally I went to an LLMD, who sent bloodwork out, and I have just started treatment again for ACTIVE LYME/Relapse/Chronic.
It's going to take a lot longer than three weeks this time around-but at least I am with a doctor who KNOWS I am not crazy.
posted
Dear Carol, Thanks so much for your reply. Only my psychiatrist seems to actually believe me about the fatigue especially. It is positively debilitating and comes on for no apparent reason. I went to another Lyme site, I forget which one, but I am thinking seriously of bypassing my regular medical doctor to see if someone who is at least willing to entertain the possibility that my Lyme disease was not adequately treated can help me. I don't want to be like this for the rest of my life. Thanks again.
Posts: 6 | From Guilford, CT | Registered: May 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
The only stupid question, is one that is not asked...
This problem that you have run into is common to a lot of us out here.
Mainstream medicine is no where to get help for lyme disease. I personally have been told "it can't be lyme...you were treated and it must surely be gone" only to come up positive IGM.
Get thee to a llmd...you're treatment was obviously not strong or long enough.
It never ceases to amaze me about mainstream ducks...they tell you when you have a "normal" infection..."keep taking this antibiotic even after symptoms are gone"...but when it comes to lyme.... "Take this for a month or two and it will be gone" "any further symptoms are either residual dammage or all in your head"......buttholes....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Run don't walk to a LLMD! If you don't know of one in your are - this is the place to ask!
Posts: 58 | From boston | Registered: Apr 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You HAVE to kick the "keets" out 'permanently',,, not that temporary dose you got!!!
Hit them again,, harder!!!, harder!!!!(old football cheer aplies here)
Then again I dont know much because I know I am --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Mainstream doctors and their misinformation are the reason lyme is becoming so chronic in many, sadly. And they simply REFUSE to listen, or read the TON of peer-reviewed research proving the bacteria can survive, mutate into different forms then re-emerge, and do horrid damage.
Yeah, that would involve studying, and we all know lyme disease is RARE, and EASILY CURED.
posted
I WOULD TREAT THIS AS LYME UNTILL PROVEN OTHERWISE....JUST LIKE THEY DO WHEN THE FIRE DEPT FOES TO A FIRE...THEY GO AS IF IT IS A FIRE EVERYTIME..COULD YOU IMAGINE WHAT WOULD HAPPEN IF THEY TOOK A LOOK SEE APPROACH TO A FIRE... ERIC
Posts: 593 | From long island ny | Registered: Apr 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
You need a lyme literate dr (llmd)
From my expereince this is the only way you will ever get better.
Many drs. dont believe in chronic lyme. I have had positive tests and yet because they dont believe chronic lyme exists - they try to convince me I know longer have lyme...
After you have had some treatment for lyme they like to label you with things like Fibromyalgia (sp?) and post lyme syndrome. In my opinon this is BS and I tell them so (although I USUALLY do it nicely)
In my opinion as a lyme patient once you have lyme you are sick with lyme till your symmptoms are gone.
Unfortunately lyme is very political. Thats why we dont use names on the board.
If you post in seeking a dr - include your area and perhaps where you can travel to - someone will pm you with s drs. info.
posted
No newcomer or question here is stupid. Help is always here. Lyme is a very complicated spricochete, devious and does not conform to the known entitites of disaese states and physiology. You are not crazy. It is very real and still manifesting infection. Time element and dose not sufficient to eradicate your infection. All posts here are giving you excellent information. Get to a LLMD doctor
Also get a copy of Southeastern Pa Lyme Disease Association booklet the basics will help answer and explain much.
That can be downloaded on line in its entirity. Get help. Strong days ahead. I will keep you in my thoughts and prayers. (Also read the newbies links more good information to help you).
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
No newcomer or question here is stupid. Help is always here. Lyme is a very complicated spiroochete, devious and does not conform to the known entitites of disaese states and physiology.This is one of the reasons mainstream medicine is behind the times ( amongst many reasons). You are not crazy. It is very real and still manifesting infection. Time element and dose not sufficient to eradicate your infection. All posts here are giving you excellent information. Get to a LLMD doctor!!!
Also get a copy of Southeastern Pa Lyme Disease Association booklet the basics will help answer and explain much.
That can be downloaded on line in its entirity. Get help. Strong days ahead. I will keep you in my thoughts and prayers. (Also read the newbies links more good information to help you).
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
liz28
Unregistered
posted
What does it matter whether you are sane? The issue is whether you have Lyme. If there are any other doctors that you can reach by foot, car, train, or plane, and you are over the age of 18, your doctor is not the only game in town.
Also, it is always helpful to honestly ask yourself how much money your time is worth per hour. Then add up that amount, and see how much you would have made if you were out working instead of lying in bed with a fever. If you allow yourself to see how valuable your time really is, you may not have the same opinion of people who tell you that losing months and years is no big deal.
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posted
I'm new around here too... jut signed up a moment ago... I had a rash when I got back from Sweden last August 2005 - I live near the beach in Southern California - my dermatologist didn't recognize the rash. I didn't start (3 weeks) on Dioxycyline until 14 weeks after the bite. Then, after reading more... and having all sorts of bizarre 'allergic' reactions - I did another 4 weeks of the antibiotic - just 'to be on the safe side'... there's a lot to read here - I haven't even scratched the surface - but your experiences sound similar to mine... I wonder if anyone has had any issues with unpredictable swelling on the face (lips - makes me look like a monkey!) on the arms and small very itchy , rosy little bumps that only last a few hours or so and that can pop up just about anywhere... anytime... very weird... I started getting this the first week after the bite, before I came down with a week-long 'flu-like illness' before the rash appeared. So, it was really the first symtoms I ever had. Does this sound familiar to anyone? An autoimmune thing? Is this the right place to throw this topic out?
Posts: 2 | From San Clemente, California | Registered: May 2006
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bettyg
Unregistered
posted
Welcome here SM. Breaking this up for those of us with neuro lyme who need you to hit enter often and double space between paragraphs so we can read/comprehend them. Thanks for doing this in future! ok.
quote:Originally posted by smbrn:
This will probably sound ridiculous but two years ago I was diagnosed with Lyme disease and was treated with three weeks of doxycycline. I did not exactly feel a whole lot better after finishing the antibiotic.
Since then I have episodes of extreme, and I mean extreme, fatigue, low back pain, legs aching, mild fever and chills to the point where I end up spending a lot of time in bed.
This can go on for a period of months as it did last fall, or improve on its own as it has now after going on cefuroxime by mouth for a sinus infection.
I had those exact symptoms just before developing the rash which led to the diagnosis of Lyme two years ago.
Is it possible to still have some bacteria active and that that is the cause of these repeated episodes of what feel like the initial set of symptoms I had before I was diagnosed? My doctor thinks I'm crazy. Perhaps I am.
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, rosy little bumps that only last a few hours or so and that can pop up just about anywhere... anytime... very weird... I started getting this the first week after the bite, before I came down with a week-long 'flu-like illness' before the rash appeared. So, it was really the first symtoms I ever had. Does this sound familiar to anyone? An autoimmune thing? Is this the right place to throw this topic out?
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