posted
Still waiting for the Western Blot to get back. The waiting is killing me.
The real reason for this post is to ask about the degree of symptoms. Sometimes when I read the stories that you guys post, I think, "no, this can't be it. I'm not that bad"
I mean, my legs hurt, my joints hurt, my head hurts, my neck and back ache my body tingles sometimes, my ears are ringing, and some other stuff if I look backwards. But it all seems so small in comparison. I can walk, I just get tired easily. I can remember how to get to my church and so on.
I don't know.
Does anyone know what I'm talking about??
Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005
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posted
Yes, I do! I thought the same thing when I first came here. It's all relative.
Also, you're very young. Your body is perhaps handling it well now. If you left it untreated for the next 25 yrs like I did, you'd be in the same boat I found myself in a few years ago.
Mine went 45 yrs undxd. That wasn't my fault and in some cases not the fault of my drs. But you have a choice. CHOOSE to get treated!
I know exactly what you are talking about. I have second-guessed myself all along, and continue to do so. I caught on that this might be lyme, or something like it, early though (within about 2 mos) thanks to this forum as well as the Brain Talk forum from which members suggested LymeNet. I have managed to have the Drs. that I've seen prescribe doxy (albeit not enough) and it seems to have slowed the progression a lot. I am currently being evaluated by the LLMD in NC (tests not back yet either). I never had the exhaustion or lethargy that some have, but have had over 35 of the Burrescano symptoms. I find it interesting that I've had so many over such a short timeframe (since Oct.) but I don't think they're that severe. I've never been debilitated from them.
I also think it's interesting that we seem to be the same in regards to symptom severity and are both from Georgia...maybe a less severe strain of STARI...or Lyme...than our friends in the northeast? Just thinking out loud )
Bill
Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Threefries, many of the posters on here have had lyme since the nineties. Very little was known about lyme then, and even the limited information they did have was poor.
The longer the Bb is in your system the greater the chance it will start affecting various bodily functions, organs, etc.
My son contracted lyme most likely Aug.04, symptoms began in Oct. 04, and finally started to receive treatment in Dec.04.
Our LLMD stated that he is one of the 10% that are hit with Bb infection in the central nervous system, almost immediately. Many don't have CNS involvement until much later in the disease.
It's more difficult and time consuming to treat. He's 15, young, and strong, so more than likely he'll go on to lead a normal life, the odds are very good. The combination of youth, and treating the disease in a reasonable amount of time, makes for a very good prognosis.
His symptoms wax and wane. One day he feels good enough to take his ATV for a ride, and the next three days he's bedridden with severe pain, fatigue, etc. It's cyclical, and also depends on herx reactions.
Everyone is different, and your symptoms can intensify and fade as well. You exhibit classic lyme symptoms, I'd be surprised if it was anything else. I understand from your posts your family situation, and finances.
If your test comes back negative, I'd cough up the couple of hundred dollars and have it done at Igenex, then you'd know for sure. Your parents could hardly disagree with a positive Igenex result. Good luck.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Both myself and my wife have mild symptoms. In fact, if I hadn't gotten a telltale rash we would never have figured it out, and would have just passed it off as getting older.
When tested, we were both very positive.
We were on several antibiotics pre-diagnosis, but now she has us just on 100mg of minocycline twice a day... and it is amazing how much better we feel, and how much better our minds work.
It is an insidious disease. It sneaks up on you with gradually worsening symptoms, so gradual you do not realize how bad you have gotten until you start getting better.
Follow through on this.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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posted
I thought the same thing since my symptoms were minor in comparison. I thought this can't be lyme look at other lymies they are in a wheel chair I haven't missed a day of work. Fatigue, eye problems, and joint pain are my biggest symptoms.
Posts: 649 | From United States | Registered: Dec 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
There are over 300 different strains of borrelia.
There are different ticks carrynig different coinfections.
Your tick was different from my tick, and so on. And the strain of borrelia I have is probably way different from yours. I have coinfections, you may too- but they may not be the same one
etc.
Don't judge yourself by all of us. I have been here for 3 years and I have only found TWO people that have a *majority* of my symptoms. One of them has ALL the symptoms, and plus some more, etc.
It CAN be, is what is the truth. Its unfortunate, and it sucks arse big time...
but knowing what it is and treating it is the most important thing right now.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
if your head and neck hurts then you already have neuro symptoms along with your joint sysmtoms...so it's only a matter of time before you get worse if left untreated....don't wait..especailly if already in CNS...
trust us..we know!
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Hi threefries, Which lab is running your Western Blot?
Wanted to let you know I've had a similar situation here in South Carolina.
Late 1970s or early 1980s - removed tiny tick attached a maximum of 4 to 6 hrs.
Some days later - had classic bull's eye rash about 2"x3". Didn't know what it was. Didn't see a dr.
NO other symptoms until about 1988 when I turned 50.
Very mild symptoms, many would come & go - fatigue, "tired legs", arthritis in hands, ringing in ears, cough, sore throat, eye problems, weight gain, thyroid slightly underactive, dental problems (not on LD lists, but I think there is a connection).
Clinical Diagnosis of Lyme - 1992 (NJ LLMD). Western Blot has never been positive.
2001 - positive test for Bartonella. 2002 - Bowen test positive for Babesiosis & Lyme (other very reputable labs had been negative for Babs, equivocal for Lyme)
Symptoms for Bartonella & Babesiosis were also mild, but I noticed a big difference when treated several months for both.
Tick-Borne Diseases seem to be similar in all people, but they are also different in all people. They can range from very mild to extremely debillatating.
In my opinion, many people have Lyme but are not aware of it.....maybe "walking Lyme disease", like having a case of "walking pneumonia" & not knowing it. The lucky ones get a diagnosis & adequate treatment.
Just remember - NO test should be used to "rule-out" Lyme disease. It's a Clinical Diagnosis with lab results being part of the info.
[This message has been edited by cbb (edited 30 March 2005).]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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jsnc
Unregistered
posted
I'm in the souteast too and don't have the severe symptoms. Have any of you been initially dx'ed with fibromyalgia and osteoarthritis in the knees or ankles? I got a negative test from Quest but this lab does not seem to have a sensitve test.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
My Lyme has been mild most of the time I have had it. Even at it's worst, I am lucky to say it is mild compared to others I have met or heard stories of.
No symptom is assured to come along with Lyme. I've been infected 18 years, and going through treatment for 1 year. I have never had any cognitive symptoms. I do have neurological symptoms, but they are are related to pain, numbness and burning.
Don't diminish your symptoms because they seem less than some on this board. Just remember what you are going through is real.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I believe I contracted Lyme in 8/01. Symptoms have been very mild compared to others as well. I've been very lucky. I have had one positive Igenx test positive for LYME all the rest have been negative both before and after the positive result. I've taken Antibiotics for approx 1 yr w/o much change except for bowel probs. related to antibiotics. Now the syptoms are beginning to pick-up both in intensity and how often. Still it doesn't stop me from exercising or working. It is my concern as to what the future holds. I recently have had ringing in my ears, eye issues(dizziness), tremors etc. MY LLMD has said maybe I should wait for a while since my tests have been negative to see if my symptoms become more intensive. I'm just wondering at what point??
Posts: 39 | From northport,ny,usa | Registered: Sep 2003
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