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Trellie
03-22-2016, 08:33 PM
I'm here because a relative of mine suffers from Lyme disease, or at least that is what the doctors think. So I am here mostly to learn more about it and also because I have also had some odd symptoms very early on and also in the last years, I'd be lying if I said I haven't thought about the possibility of having Lyme disease.

It's awful though, I was diagnose with a cavernoma in my brain 2 years ago, but the doctor said I was surely born with it. So I don't know if I could blame those odd new symptoms to that cavernoma :( The most scary symptoms so far are muscular spasms, I had them last year for several days at a time. I had them in my left leg, then the right one. I sometimes get numbness in my legs, feet and once half my left hand went numb for a couple days. I've also noticed a slight weakness in my left arm, as well as some vision issues and a very foggy brain at times.

I don't know what to think anymore. The neurologist didn't even seem sure if my cavernoma was actually that... he doesn't seem to be the best doctor anyway. It's just so tiring trying to find a decent doctor who at least care a little about doing his job well. No idea if I should be worried about Lyme... I recall having an odd rash a couple years ago, but thought nothing about it.

rz3300
03-27-2016, 07:48 PM
Symptoms are really not great indicators of disease, and I know that sounds crazy but it is true. That just means that if you are looking for symptoms you can probably find them. The muscle spasms can be attributed to thousands of different things, so that is just one example. I have just seen too many misdiagnosis over the years, so the best thing to do is have tests done.

David
04-03-2016, 08:59 PM
Some people feel that Lyme is the one of the most misdiagnosed and undiagnosed diseases. It's prevalence in North America should be much higher given the Tick population, but Lyme disease is far under reported according to national statistics.

Trellie
04-07-2016, 08:13 PM
Yeah, I wonder how many people are living with joint pain and the like who actually have Lyme, but have no idea. I mean, I'm starting to wonder if my mom could be suffering from this as well. After all she also suffers from chronic pain. She doesn't have any other weird symptoms like numbness, but she does suffer from muscle cramps and a lot pain. My other relative does have some other symptoms, but doctors are not so sure if it is Lyme. To make matters worse is that we have had a lot contact with ticks in the past (dogs). I don't recall being bitten by one, but you never know!

Trellie
04-10-2016, 08:45 PM
Symptoms are really not great indicators of disease, and I know that sounds crazy but it is true. That just means that if you are looking for symptoms you can probably find them. The muscle spasms can be attributed to thousands of different things, so that is just one example. I have just seen too many misdiagnosis over the years, so the best thing to do is have tests done.

Ehh, sometimes the symptoms appear just like that, not everything is in a person's minds. One should never ignore symptoms, because they can be great indicators of disease for a decent doctor. The mediocre doctor won't have a clue but the skillful one will. I've had a lot experience with good and bad doctors. One should alwayspay attention to symptoms, specially new ones.

Azrile
05-14-2016, 03:52 PM
Ehh, sometimes the symptoms appear just like that, not everything is in a person's minds. One should never ignore symptoms, because they can be great indicators of disease for a decent doctor. The mediocre doctor won't have a clue but the skillful one will. I've had a lot experience with good and bad doctors. One should alwayspay attention to symptoms, specially new ones.

I think you are missing the point. The symptoms of Lyme Disease are common things and could indicate literally thousands of different things. It has nothing to do with the skill of the doctor. If you go to a doctor with 4 symptoms of Lyme Disease, the doctor would have to test you for dozens of different diseases, most of them more common than Lyme Disease, and many of them without a quick and effective treatment or test so they can be ruled out quickly.

Unless in your history you give the doctor you mention a tick bite, or hiking a lot, or you remember and mention, or still have the rash, a good doctor would have 10 things in their head before they think of Lyme Disease.

zerthi
05-15-2016, 09:08 PM
That's true. Many diseases share common symptoms. Therefore I think the most accurate and fairly obvious way your doctor can tell is certainly lyme disease, besides identifying all the major symptoms, is telling him/her you were bitten by a tick that also left a rash in your skin.

oportosanto
05-18-2016, 08:45 AM
That's one very important thing about Lyme disease, the diagnosis. Well, diagnosis is important in all diseases, but considering that the symptoms can resemble Fibro we need to ask for a second opinion if possible.

Trellie
05-26-2016, 07:27 PM
I think you are missing the point. The symptoms of Lyme Disease are common things and could indicate literally thousands of different things. It has nothing to do with the skill of the doctor. If you go to a doctor with 4 symptoms of Lyme Disease, the doctor would have to test you for dozens of different diseases, most of them more common than Lyme Disease, and many of them without a quick and effective treatment or test so they can be ruled out quickly.

Unless in your history you give the doctor you mention a tick bite, or hiking a lot, or you remember and mention, or still have the rash, a good doctor would have 10 things in their head before they think of Lyme Disease.

No offense, but I honestly think you are the one missing the point... ALL I was saying is that you should NEVER ignore symptoms.

Yes, tons of disease display symptoms that are rather common and could mean nothing, but a skilled doctor will often listen the patient and actually do everything he can do to figure things out.

Sadly nowadays most doctors want to give you a prescription and send you home. A good doctor will listen to his patient, run some tests if necessary or/and refer the patient to a specialist.

I should know... I've seen the worst and the best of the medical profession.

Trellie
05-26-2016, 07:33 PM
That's one very important thing about Lyme disease, the diagnosis. Well, diagnosis is important in all diseases, but considering that the symptoms can resemble Fibro we need to ask for a second opinion if possible.

Lyme is so hard to detect if not caught quickly... :( I dream of the day we find a way to offer a very accurate diagnosis to those who weren't able to detect their disease early on. I was reading about a new test that can be used to detect this disease and others, but I don't know how accurate it is detecting the infection in people who have been suffering from it for a while.

Trellie
05-26-2016, 07:39 PM
That's true. Many diseases share common symptoms. Therefore I think the most accurate and fairly obvious way your doctor can tell is certainly lyme disease, besides identifying all the major symptoms, is telling him/her you were bitten by a tick that also left a rash in your skin.

Sadly most people infected with Lyme don't even know when they were bitten by a tick... the saliva of the tick contains a chemical that acts like some sort of local anesthesia. That is why people can't feel the bite of the tick... they can't even feel the tick when it's still attached to them. That is why it's so tricky, so a good doctor will run the appropriate tests.

oportosanto
05-27-2016, 04:55 AM
That is why awareness and information is important, so that we know exactly what we have.

Azrile
06-07-2016, 01:48 PM
Symptoms are really not great indicators of disease, and I know that sounds crazy but it is true. That just means that if you are looking for symptoms you can probably find them. The muscle spasms can be attributed to thousands of different things, so that is just one example. I have just seen too many misdiagnosis over the years, so the best thing to do is have tests done.

This is totally accurate. Unless you saw the rash, or you saw the tick, every other symptom has a much higher probability of being something else. It is great to learn about Lyme Disease especially to help your relative, but there is a huge risk in diagnosing yourself.

oportosanto
06-08-2016, 06:22 AM
Exactly, that is why diagnose is so hard because there are always symptoms.

Azrile
06-08-2016, 11:14 AM
That is why it's so tricky, so a good doctor will run the appropriate tests.

That is why we need to preach about inspections after being in wooded areas. You are correct about the anesthesia, almost all insects do the same thing, you rarely feel a bite unless it was meant by the insect to cause you pain as a defense mechanism. If you are ´food´then they all use anesthesia.

There is only one real test for Lyme Disease, it is an ELIZA test that is extremely inaccurate and gives a huge percentage of false positives. The test also is ineffective early in the life of the disease, estimates range the ELIZA test will not show positive for a month or two. Most doctors will not rely on it for a diagnosis as it is outside the range of being useful. And it is not cheap, so is definitely not something you want to add to the litteny of tests you would perform on patients with some Lyme Disease symptoms.

oportosanto
06-09-2016, 04:20 AM
Inaccurate test will never be the solution, we need to have more effective tests!