Any Lyme-knowlegeable people? Could I have Lyme?

[rlc]

Hi Ocean, Lupus is known as the disease of a thousand faces because it can present so differently in so many people which makes it very hard to diagnose by symptoms, so the best bet is to get the tests done and see what results you get.

Dermatomyositis is also an auto immune disease, but with all diseases the symptoms can be very different from person to person, so you dont necessarily always get a perfect match in symptoms, so again testing is the only way to be sure. The blood tests for it are creatine phosphokinase and aldolase, which show if there is muscle damage and should be done for you if you have significant muscle wastage, the other blood tests are for auto anti bodies like ANA these tests are all explained here http://emedicine.medscape.com/article/332783-workup#aw2aab6b5b2

I get the feeling from what you have been saying that you havent been very extensively worked up by doctors and there are a lot of tests that havent been done, and symptoms that havent been investigated properly, you need to get a doctor to properly investigate all the possible causes of your symptoms, to make sure that nothing has been missed, as you say yourself you have a lot of symptoms that dont really fit with a ME diagnosis, so it is important to make sure that every other possibility is ruled out. A lot of people are making out that having PEM means you have ME, this is not true it is found in many conditions.

Regarding Lyme it is a very controversial subject, but the truth is that none of the tests currently available are proven to be 100% accurate. Which leads to people getting false positives and then having wrong and dangerous treatment for a disease they havent got, while their true diagnosis gets missed, so be cautious, Unfortunately a very accurate test has been developed called VOVO LIPS but at present it isnt widely available largely due to financial reasons see http://lymediseaseguide.org/lyme-disease-test-the-promise-of-vovo-lips

My view is that you need to make sure that you have been tested for everything that could possibly cause your symptoms, and make sure that nothing has been missed, yes Lyme is possible but so are a lot of other things, so make sure they are all ruled out no matter what any Lyme test says, if you get a positive lyme test, it could be a false positive, and if you focus on trying to treat that before everything else has been ruled out something important could be missed. So be cautious and get more testing done before accepting any diagnosis.

I think the fact that you got so much better after taking prednisone could be very important in finding the correct diagnosis, its a very strong drug and the diseases that it treats are well known. They are diseases that cause low Cortisol, adrenal and pituitary disorders like Addisons disease, have your cortisol levels been tested?? And diseases like Lupus, MS, allergic reactions, Sarcoidosis etc, etc, So in theory if a doctor gets a list of all the diseases that prednisone is used to treat, and then compares your symptoms to those on the list of diseases that prednisone is used for, they should be able to narrow it down to a few, and then test for them and hopefully come up with the right diagnosis.

All the best

 

[floydguy]

Hi Ocean, Lupus is known as the disease of a thousand faces because it can present so differently in so many people which makes it very hard to diagnose by symptoms, so the best bet is to get the tests done and see what results you get.

Dermatomyositis is also an auto immune disease, but with all diseases the symptoms can be very different from person to person, so you dont necessarily always get a perfect match in symptoms, so again testing is the only way to be sure. The blood tests for it are creatine phosphokinase and aldolase, which show if there is muscle damage and should be done for you if you have significant muscle wastage, the other blood tests are for auto anti bodies like ANA these tests are all explained here http://emedicine.medscape.com/article/332783-workup#aw2aab6b5b2

I get the feeling from what you have been saying that you havent been very extensively worked up by doctors and there are a lot of tests that havent been done, and symptoms that havent been investigated properly, you need to get a doctor to properly investigate all the possible causes of your symptoms, to make sure that nothing has been missed, as you say yourself you have a lot of symptoms that dont really fit with a ME diagnosis, so it is important to make sure that every other possibility is ruled out. A lot of people are making out that having PEM means you have ME, this is not true it is found in many conditions.

Regarding Lyme it is a very controversial subject, but the truth is that none of the tests currently available are proven to be 100% accurate. Which leads to people getting false positives and then having wrong and dangerous treatment for a disease they havent got, while their true diagnosis gets missed, so be cautious, Unfortunately a very accurate test has been developed called VOVO LIPS but at present it isnt widely available largely due to financial reasons see http://lymediseaseguide.org/lyme-disease-test-the-promise-of-vovo-lips

My view is that you need to make sure that you have been tested for everything that could possibly cause your symptoms, and make sure that nothing has been missed, yes Lyme is possible but so are a lot of other things, so make sure they are all ruled out no matter what any Lyme test says, if you get a positive lyme test, it could be a false positive, and if you focus on trying to treat that before everything else has been ruled out something important could be missed. So be cautious and get more testing done before accepting any diagnosis.

I think the fact that you got so much better after taking prednisone could be very important in finding the correct diagnosis, its a very strong drug and the diseases that it treats are well known. They are diseases that cause low Cortisol, adrenal and pituitary disorders like Addisons disease, have your cortisol levels been tested?? And diseases like Lupus, MS, allergic reactions, Sarcoidosis etc, etc, So in theory if a doctor gets a list of all the diseases that prednisone is used to treat, and then compares your symptoms to those on the list of diseases that prednisone is used for, they should be able to narrow it down to a few, and then test for them and hopefully come up with the right diagnosis.

All the best

I generally agree with RLC. The challenge often lies when there are neurological and immunlogical issues with no clear cause. Before going down any path at all try to get as much as testing as possible so that the best decisions can be made. Taking prednisone, for example, would terrify a Lyme Doctor.

 

[Ocean]

Thanks Ric. I have been tested for lupus about a year ago. Tests were normal. I will be seeing my doc soon and will ask about dermatomyositis as well as conditions that may react positively to prednisone and about retesting for lupus. I am also in the process of doing adrenal/endicrinological testing.

Thanks Laurie, what I meant was getting from my former doctor the lab results that came from the lab. Isn't that the same as getting it from the lab, if it's the same results/a copy of what they would send?

Thanks Esther. That sucks because I thought Igenex was a good lab to go through. Now I'm confused all over again.

Thanks Rich for the test info. I'm bookmarking it to read up on.

Thanks Lala. It's good to know testing did end up leading to positive treatment in someone! I will look up and bookmark the LLT info also.

Everyone, thanks for all your input. I think I will mention the possibility of Lyme to my doc. Then research some of the things you all have brought up. If I really think Lyme is a real possibility it may end up I need to see a different doctor for it anyway, but I'll start with mentioning it to my current doctor.

I will also ask about autoimmune stuff again. I've had normal test results for things that would normally indicate autoimmune, which is why they told me it is CFS since I meet the criteria and did not test positive for other things that might have fit. But I'm not familiar enough with the testing and diagnosis of those conditions to know whether everything relevant has been 100% tested for. I just took them at their word that the many pages of lab results that were normal were enough to rule out autoimmune stuff. Two rheumotologists told me autoimmune stuff was ruled out and that I had CFS. One calls it post viral actually. The post viral thing not being to my liking at all because I don't even remember getting sick beginning with a virus and I've had symptoms for more than a decade, do they still call it post-viral under those conditions? I think I label that label even less than CFS.