posted
My Ortho referred me to the Rheumotologist who doesn't want to listen who referred me to an Infect Dis doctor. My problem is now some of my symptoms since Aug 2011 and before have subsided. I still have the joint aches, and memory fog, etc. But I do feel somewhat better. Does this stuff come and go if you really have Lymes? So do I set up the appt w/ the Infect Dis doctor or wait until I feel bad again?
Posts: 1 | From Tampa Bay, FL | Registered: Mar 2012
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posted
BCP, were you bit and received the rash? Have you been diagnosed with Lyme already? I would find a LLMD using the "find a doctor" forum on this website. The symptoms can most certainly come and go. In fact, I think it's more common for them to come and go.
Posts: 10 | From Taunton, MA | Registered: Sep 2011
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My symptoms have always varied, especially in the begining before my peripheral neuropathy started. That was when they called it fibromyalgia. I would have weeks to months of very little pain and fatigue for the first 2 years of my illness. I've always had constants like my wrists, but have wandering pains and intermittent symptoms too.
Are you being treated by a LLMD? If not I suggest you find one. I went through almost a dozen doctors of differing specialties before I was diagnosed.
-------------------- I have Lyme - but it doesn't have me. Posts: 70 | From ohio | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For at least the first 5 years that I had lyme, my symptoms came and went. I could be normal for 5 months, then have symptoms for 7 months, etc.
This is typical for lyme disease.
When I got sick, I went to doctors, trying to find out the cause. When I was well, I hoped I never got "the sickness" again. No such luck.
I went undiagnosed for 10 years. I went from doctor to doctor, with nobody thinking of lyme disease. I went to top docs and top medical institutions. I was treated like a mental problem.
Finally a doctor thought of lyme disease. Then, I got terrible treatment by the medical profession until I found lyme support groups and found out the names of doctors in my area who treat lyme disease.
The sooner you get to a lyme doctor, the easier it will be to treat the disease. The longer you wait, the longer the treatment will be and it may also not be successful.
Forget the infectious disease doc, the rheumy, and the ortho. Go to "seeking a dr" section of this board and get the names of real lyme docs. There is only one good one in Fl, in my opinion, and he is in Tampa. If you want to know who that is, send me a private message. (click on icon across from my name that is envelope and 2 people standing next to it.)
Whatever you do, do NOT under any circumstances let any doctor give you steroids of any kind--pills, shots, nasal sprays, etc. If you do, you may cause yourself to have a case of lyme that nobody can get rid of for you.
So, be sure to investigate any meds any doctor wants to give you. Your health depends on it.
Here is a quote for you to explain about the rule regarding no steroid use:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Also, a Boston TV station did a great show on lyme disease about 2 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
So, just know that a negative lyme test means nothing. As you will read in Burrascano, the doctor has to make the diagnosis as no lyme test is reliable enough to make it. The doc is the key to getting the diagnosis and to getting rid of this horrendous disease.
It is now 7 years since I got rid of lyme disease and I am once again enjoying my life. The doc was the key to me getting rid of it. Can't emphasize that enough. Many doctors treat lyme disease, but only a few know enough to actually get rid of it for a person. Your job is to find one of those few. We will help you here.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I do not have a day that is exactly the same. I always have symptoms (I never feel 100%) but they come and go in varying degrees.
Posts: 98 | From Ontario | Registered: Feb 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes! Mine did for years. But the longer I went undiagnosed, there was a slow progression towards worse and worse, sicker and sicker, and now I have some symptoms all the time and others come and go. It took 30 years and over 100 doctors before someone finally put all the pieces together. Run, don't walk, away from non-LLMD's!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle - yes...even though symptoms come and go left untreated (where I am now) there is a progression of worse and worse. So odd and so difficult to explain. The only reason I would've even suspected lyme is because of a suspicious bite I had. I am only at 9 docs at this point. LLMD's are the key!
Posts: 98 | From Ontario | Registered: Feb 2012
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