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Old 06-05-2011, 02:50 AM   #1
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Almost convinced that I have lyme, but want to see what you think....

OK so here's my story. About 2 months ago I started feeling a little more fatigued than usual. Chalked it up to stress and lots of physical activity -- I was very busy with both school and sports. But, I started to feel worse than my threshold usually allows before going to the doctor. So, I went to the doctor. I told them that I'm experiencing flu-like symptoms, and strange pains in my body that seem to move in location. I told them it may be the physical activity and stress. They said it's probably heartburn with a virus that will go away, and if I still feel worse in a few weeks after taking heartburn meds, to come back.

I did go back because I didn't seem to get better. Still fatigued, painful muscles, less range of motion in my body. I also told them that I'm having trouble sleeping, and that alcohol hangovers seem to be drastically amplified. Lots of headaches -- I'm one who barely ever gets headaches. Burning pain moving to different parts of my body, it seems like every part of my body is fair game, but a lot of pain in the chest region and the stomache area. This was all too strange for me. We did lots of blood tests. Eventually, on probably the 4th doctor's visit, I asked them to test for lyme disease. Told the doc that I remember pulling out a tick a while ago, and that the symptoms seem similar to what's going on with me. The test came back negative, so I was perplexed what was going on. Suspected carbon monoxide poisoning, lots of strange stuff.... all negative.

I've been to the doctor 6 or 7 times. I've had my blood tested for a lot of stuff, everything comes back OK. I've had an EKG and x-rays done. I'm healthy says the doc, but let's do some ultrasounds, and echogram. That all comes back normal. I'm puzzled. I begin physical therapy. I feel better, but still like something is wrong. I still have headaches more often than not. I just don't feel right, I feel weak and there shouldn't be all this strange pain.

I've read a bit on this forum and noticed that lyme tests are unreliable, as are general care docs. I plan on going to see a lyme specialist ASAP. It's crazy because the symptoms are so general and they could be from a lot of other stuff.

If it's not lyme, I don't know what to do next. Maybe see a gastroenterologist (is that how you spell it?). I'm almost to the point of just demanding that I be put on antibiotics. I feel like it's some sort of infection for some reason. This can't be a physical injury, and apparently all my organs scan out OK.

If it's lyme, it probably is only a few months in the works. So, that should make it easier to treat. My deepest sympathies go out to those who went undiagnosed, unaware, and untreated for so many years.

 
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Old 06-05-2011, 03:30 AM   #2
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Re: Almost convinced that I have lyme, but want to see what you think....

Hang in there buddy, you'll get to the bottom of this!

 
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Old 06-05-2011, 06:29 AM   #3
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Re: Almost convinced that I have lyme, but want to see what you think....

Hi. Thanks for the replies, I appreciate it.
I have read that "allicinmax" can help as it acts like a natural anti-biotic -- I'm off to buy some of this at the local drug store. Can anyone recommend how much I should take? What is safe and practical?

My brother also has a prescription of amoxicillin that he got prescribed for strep throat but it turned out he was having tonsillitis or something. 875MG, only 10 days worth. Should I bother with that? I figure I'd leave that alone for now.

Last edited by skBM; 06-05-2011 at 06:32 AM.

 
Old 06-05-2011, 07:26 AM   #4
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Re: Almost convinced that I have lyme, but want to see what you think....

Thanks again Jen.

 
Old 06-05-2011, 12:02 PM   #5
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Re: Almost convinced that I have lyme, but want to see what you think....

I got bit by a tick two weeks ago and have a bull like rash on my leg. I have been putting creme on it and the swelling has gone down. I do not have any others symptoms but am worried that it might be. Did you have symptoms right away and did you have a rash?

 
Old 06-05-2011, 12:10 PM   #6
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Re: Almost convinced that I have lyme, but want to see what you think....

I think my symptoms started pretty quickly. It's difficult to remember because only after a month of going to the docs I considered lyme, and by then I only vaguely remembered pulling off a tick, and thinking nothing of it. Im pretty sure it was no more than a week or two afterwards that I had my first doctors visit.

There was no rash.

 
Old 06-05-2011, 12:14 PM   #7
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Re: Almost convinced that I have lyme, but want to see what you think....

Quote:
Originally Posted by skBM View Post
I think my symptoms started pretty quickly. It's difficult to remember because only after a month of going to the docs I considered lyme, and by then I only vaguely remembered pulling off a tick, and thinking nothing of it. Im pretty sure it was no more than a week or two afterwards that I had my first doctors visit.

There was no rash.
Now I am confused. They say it starts with a rash and but you also get symptoms. I am not clear when the symptoms occur or how far in the stage. My sister works for the health department and the doctors said I should probably come in but again I have no symptoms and just do not want to jump the gun. Does anyone else see this message and might reply? Thanks!

 
Old 06-05-2011, 02:14 PM   #8
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Re: Almost convinced that I have lyme, but want to see what you think....

Quote:
Originally Posted by JaneP View Post
Now I am confused. They say it starts with a rash and but you also get symptoms. I am not clear when the symptoms occur or how far in the stage. My sister works for the health department and the doctors said I should probably come in but again I have no symptoms and just do not want to jump the gun. Does anyone else see this message and might reply? Thanks!
Yeah I'm not sure. I think someone else could give you good advice but not me. I just read that 50% or more people who are diagnosed never had any rash.

 
Old 06-05-2011, 03:54 PM   #9
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Re: Almost convinced that I have lyme, but want to see what you think....

Quote:
Originally Posted by JaneP View Post
Now I am confused. They say it starts with a rash and but you also get symptoms. I am not clear when the symptoms occur or how far in the stage. My sister works for the health department and the doctors said I should probably come in but again I have no symptoms and just do not want to jump the gun. Does anyone else see this message and might reply? Thanks!
JaneP

If you have a bullseye rash following a tick bite, you definitely have Lyme. And I would recommend you go and see an LLMD as soon as possible.

There is nothing else that can cause this rash apart from Lyme Disease, it is also true that many people don't get a rash, (I didn't) which can lead to a delay in diagnosis for many of us. You are in a good position if this is a recent occurrence for you, as the sooner you are treated the better. Lyme is very difficult to treat once it becomes chronic.

Symptoms don't always occur immediately after being bitten either, in fact the bacteria can lay dormant in the body and symptoms may appear days, months or even years later.

Good luck

Last edited by littlehutton; 06-06-2011 at 06:18 AM.

 
Old 06-05-2011, 04:00 PM   #10
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Re: Almost convinced that I have lyme, but want to see what you think....

It probably depends on the situation and person how long it takes to become "chronic" but is there any general timeframe? If it's been, say, 2 months since I got my tick bite -- it shouldn't be super difficult to get rid of the lyme right? I hope.

 
Old 06-06-2011, 06:10 AM   #11
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Re: Almost convinced that I have lyme, but want to see what you think....

skBM

It is very hard to determine when Lyme becomes chronic as it depends on so many different factors. Sometimes it can become chronic very quickly, and in other cases it can take quite a few months, When I started to get major symptoms and realized I was Ill I already had chronic Lyme, as I had been feeling ill for at least a year, but symptoms were mild so I did not realize until everything went bang!

Some strains of Lyme bacteria are worse than others and there are also co-infections to take into consideration as well.

The best advice I can give you is to go and see an LLMD as soon as possible, and DO NOT waste your time or money with regular doctors and especially not infectious disease doctors (these are the worst in my opinion). An LLMD will be the only person that can diagnose and treat lyme effectively, and the sooner the better!

Good luck

Last edited by littlehutton; 06-06-2011 at 06:11 AM.

 
Old 06-06-2011, 09:58 AM   #12
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Re: Almost convinced that I have lyme, but want to see what you think....

OK I am out of town and going home later today, but my parents here insisted that I go to the doctor again. I did, reluctantly, and it was only a $25 co-pay so it wasn't that big a deal. I figured maybe I could get an open-minded doc.

The doc gave me the typical run-around, lyme disease is extremely rare, let's just get a blood test. He also gave me some "facts" about lyme disease to back up his position why he's reluctant to consider it lyme: 1) it is an incurable, lifelong condition 2) symptoms only occur 6months - 3years after the tick bite 3) it is associated with a rash

I know the folks around here are disappointed by that logic since they know it's all not true, so I won't even bother to explain my reaction to that.

I didn't want to argue too much because there would be no point, but I did mention that the blood tests for lyme are generally unreliable, as I learned from my research. He even conceded that there is a possibility of the blood test not being an effective way to determine lyme, but then he went on to say that if the test comes back negative, he will refer me to a rheumatoid specialist. Then he went on to say that I seem convinced that it's lyme when it's probably not, and gave me examples about how people look up stuff on the internet then become convinced they have a disease when they have some of the symptoms. Even though I told him that I narrowed it down very carefully and through a lot of research (and howbout the fact that my symptoms began around the time I remember pulling off a tick -- but that goes back to his "fact" of 6months-3years before symptoms). By the way, that was his response to my statement "I heard lyme disease is very under-diagnosed." Doctors just dont trust their patients.

Thanks for the waste of time doc. It's no wonder so many people have chronic lyme disease. It makes me really sad, and angry. It is possible I don't have lyme, but if I did, they wouldn't be able to tell me.

Last edited by skBM; 06-06-2011 at 10:02 AM.

 
Old 06-06-2011, 05:57 PM   #13
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Re: Almost convinced that I have lyme, but want to see what you think....

update... after calling around, the soonest appointment I could get with someone lyme-familiar is next monday. I'm just going to start taking these antibiotics I have. 875 MG Amoxicillin. I know people on this forum will be reluctant to give me "medical advice" but if anyone can let me know if that seems like an appropriate dose, please do. I don't want to wait any longer and risk it getting worse. Taking matters into my own hands now.

 
Old 06-07-2011, 11:43 AM   #14
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Re: Almost convinced that I have lyme, but want to see what you think....

I really do think you have Lyme, if you saw the tick it is most definetely Lyme. They probably just made the basic test, they have to test yo as follows:

"There are three types of antibody tests to detect Lyme disease.

Enzyme-linked immunosorbent assay (ELISA). This common and rapid test to identify Lyme disease antibodies is the most sensitive screening test for Lyme disease.

Indirect fluorescent antibody (IFA). This test also screens for Lyme disease antibodies.
Western blot test. This test also identifies Lyme disease antibodies and can confirm the results of an ELISA or IFA test. It is most often done to detect a chronic Lyme disease infection."

http://arthritis.*****.com/lyme-disease-test

 
Old 06-07-2011, 02:28 PM   #15
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Re: Almost convinced that I have lyme, but want to see what you think....

If I were you I wouldn't just take the antibiotics without seeing an LLMD first. I am not sure what the correct dosage would be, and you could end up doing more harm than good.

There are many natural ways in which you could help yourself before your appointment, one of which is to eat fresh garlic which contains allicin, and is a natural antibiotic. Alternatively you can use allicinmax, which is the same stuff but in capsules.

You could also detox as much as possible, epsom salt baths are good, green tea, and drink plenty of water and lay off sugar completely, you should also take plenty of Vit C. None of these things will do you any harm, but will help with Lyme if that is your culprit.

I am also quite alarmed that you have managed to get an appt with an LLMD for a weeks time. Usually there is a waiting list of at least a few months if not longer. Is he/she an actual LLMD, or some sort of infectious disease specialist?

 
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