posted
I previously had Lyme years ago...it was in 2000 that I became sick and I wasn't diagnosed for about eight months. After about a year of complete torture and lots of tetracycline, I got to a point where I was about 85-90 percent better and had moved on with my life. Fast forward to October 2008, and I started to have all the symptoms back again. Is it very common to completely relapse? I fear that is what has happened, but I am quite uneducated about this subject. I have been to my regular doc, two neurologists, a cardiologist, a rheumatologist and countless ER trips. They have all come up empty handed. Is this familiar to anyone? My symptoms are a long list....I guess I am looking for support/stories of comparison so that I can convince myself that I'm not completely crazy! Any input/insight would be greatly appreciated :-)
Posts: 2 | From Connecticut | Registered: Jan 2010
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quote:Originally posted by Charity333: I previously had Lyme years ago...it was in 2000 that I became sick and I wasn't diagnosed for about eight months.
After about a year of complete torture and lots of tetracycline, I got to a point where I was about 85-90 percent better and had moved on with my life.
Fast forward to October 2008, and I started to have all the symptoms back again. Is it very common to completely relapse?
I fear that is what has happened, but I am quite uneducated about this subject. I have been to my regular doc, two neurologists, a cardiologist, a rheumatologist and countless ER trips. They have all come up empty handed.
Is this familiar to anyone? My symptoms are a long list....
I guess I am looking for support/stories of comparison so that I can convince myself that I'm not completely crazy! Any input/insight would be greatly appreciated :-)
Hi and welcome -
Breaking up the text here for easier reading for many here -
Yes, what you're describing is common, about the possibility of relapse. Either that, or you could have had another exposure?
Most docs don't know anything, or if they do, they're not saying...
You can post in the Seeking a Doctor section for a list of Lyme-treating doctors near you and someone will send you a list.
This is an excellent place to learn about treatments. You can click on Links to the left and read the Burrascano 2008 treatment guidelines. Also you can use the Search box and type in any topic and read what people are doing.
You can also click on Support Groups to the left here to find one near you.
Since this is your first post, we don't know you well enough to determine whether you're completely crazy or not. I would assume you're not, since you posted here, and we're all quite sane on Lymenet.
Posts: 13171 | From San Francisco | Registered: May 2006
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Most of the docs around here rely heavily on the presence of the rash and the results of a lyme titer. Since I am negative for both...I'm sure you know the rest
Luckily, I know of two docs not absurdly far from me in this state. They are both very knowledgeable. I saw one years ago with the first run and now I am trying out the second one.
I guess it's just hard to decipher what symptoms are due to Lyme and what may not be. Do you still see your regular doc while being treated by the Lyme doc?
Posts: 2 | From Connecticut | Registered: Jan 2010
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posted
Hi - I think the Lyme doc is generally it, for most of us, including myself, since the others just aren't as educated about Lyme/co's and what to do for them.
Yes re also seeing a gp - however, I notice that I often have to explain things to them because of the Lyme. The more we know about what we're dealing with here, the better.
There are lists of Lyme symptoms, including in the Burrascano guidelines. I think it's helpful to peruse a symptom list - helps make more sense of what we're going through, like connecting the dots type experience.
PS You're still sounding sane. Congrats -
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Hi - it's too bad your doc is depending on "rash" large percentage of people don't have a standard rash. If you don't have the lyme booklet from SE PA you might find that helpful as it explains in layman's terms all of the symptoms by category and is posted on several sites. There is also both the Dr. B. guidelines and Dr. J. from CT "how to read a Western blot" which are very helpful to most people. I have come to the conclusion if it looks like it and sounds like it based on the symptoms, it likely is and many people don't show positive because immune system is so suppressed. The healthier you are the m ore likely it will show up. As to getting sick "again" that is common and be caused by many reasons.. the flu, a cold, stress, etc. OR what I really don't like reminding people as I have many friends who still live in endemic areas.. you can get bit AGAIN and maybe get a co-infection you didn't have the first time (though most people get at least one or two of the co-infections the lst time, they just don't know it - I had Babesia and Bartonella but only Bartonella showed up initially, so you never know until you get well enough for the darned test to show it). I have friends that have been bitten 4-6 times that they know of and each time they get a little sicker.... wish they'd move. So that's something to keep in mind and you do live in CT... Read all you can as no one person has all the answers and seems like a lot of people here know different parts. Keep at it and never give up, you know your body better than anyone.
Posts: 5 | From Delaware | Registered: Jan 2010
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quote:Originally posted by mezzosoprano2: Hi - it's too bad your doc is depending on "rash" large percentage of people don't have a standard rash.
If you don't have the lyme booklet from SE PA you might find that helpful as it explains in layman's terms all of the symptoms by category and is posted on several sites.
There is also both the Dr. B. guidelines and Dr. J. from CT "how to read a Western blot" which are very helpful to most people.
I have come to the conclusion if it looks like it and sounds like it based on the symptoms,
it likely is and many people don't show positive because immune system is so suppressed. The healthier you are the m ore likely it will show up.
As to getting sick "again" that is common and be caused by many reasons.. the flu, a cold, stress, etc.
OR what I really don't like reminding people as I have many friends who still live in endemic areas..
you can get bit AGAIN and maybe get a co-infection you didn't have the first time
(though most people get at least one or two of the co-infections the lst time, they just don't know it -
I had Babesia and Bartonella but only Bartonella showed up initially, so you never know until you get well enough for the darned test to show it).
I have friends that have been bitten 4-6 times that they know of and each time they get a little sicker.... wish they'd move. So that's something to keep in mind and you do live in CT...
Read all you can as no one person has all the answers and seems like a lot of people here know different parts. Keep at it and never give up, you know your body better than anyone.
Thx for posting - breaking this up for easier reading for many here -
Hm - you sound like a singer?
Posts: 13171 | From San Francisco | Registered: May 2006
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