After so many tests comeback negative, but still just feeling like crap…I’m thinking of asking my doctor about Lyme disease.
I have an appointment on the 2nd for some kind of nerve test; depending on the results of that, I might or might not ask.
Am I crazy for thinking this??
Hi Yabby,
I went through about 24 years of feeling crappy off and on. I at one point did ask my rheumy about lyme disease. I spend alot of time in an area where it is prevalent. He did the test but thought it wouldn 't be positive. I was desperate for an answer to feel better. I know how you feel. I am now extremely ill and most days I spend sleeping. I finally found drs. who figured it out but it took me getting very ill and several different doctors. I wish I could help you. I know you mentioned your neuro was thinking ms but your was mri was ok? What type of symptoms do you have? I have cns lupus with very bad brain issues, but the brain issues when I look back were showing up slowly, so I wasn't noticing. My problem with getting a diagnonosis was because nothing except a positive ana would show in my blood. Finally my rheumy convinced my neuro to do a lumbar puncture would showed everything. This test saved my life, yes there were times I questioned if I would survive. I did read recently that people can still have lupus with a negative ana. I hope you find the answers you need and soon. Please let me know if I can help in any way. Take care, don't give up, you know your body and if something isn't right you have to keep fighting.
I was diagnosed with Lyme's when I was 15 then I was diagnosed with Lupus Nephrits and RA at 18. I swear they're connected but my doctors say they're not... I'm now 30 and still dealing with the day to day frustrations of having this chronic disease!
I know a lady who experienced awful health issues, including parts of get digestive system becoming immobile and she has to live on a feeding tube. Many other issues too. After many, many years, they did a Kyne test and it was positive. I know for many of us, we just want an answer and help. I don’t see what asking for the test will hurt, but also don’t get your hopes up in case you have to continue to go through life as you are now. Hang in there. Many can relate.
You are not crazy at all! My Lyme disease TRIGGERED my lupus (plus several other autoimmune issues). I have had 3 years of antibiotics for Lyme which I believe to be under control now (I can now walk for a while without my wheelchair), but I doubt that my fibromyalgia or my lupus, RA, autoimmune hepatitis, celiac disease, Hashimoto's thyroiditis, etc will ever go away.
I would say that you are NOT crazy at all. Lyme can give you many symptoms similar to lupus. You might even have it in addition to lupus. If you recently traveled to the Caribbean, then you might have been bit by a mosquito and got an illness that also has similar symptoms. Don't forget, lupus is known as the great pretender.
Good luck with your upcoming tests. I hope you can get more information from them.
reddog - thanks for remembering :) Yes, my mri was normal ... he ordered one for just the brain, not the spinal cord.
My regular doctor did a few tests for lupus a couple months back, but since all my ANA numbers were ok she's not really pursuing that anymore.
Yabby,
Ask for the lymes test, it can't hurt. Good luck.
You are not crazy -Lymes disease can wreck all kinds of havoc on your body! I have 2 close friends with it and it is AWFUL !! One was diagnoses with POTS and later discovered she had Lymes' and it was what caused all of her problems. Do not stop until you find someone to test you for Lymes. But also you have to find the best test. Let me know if you need any more info and I will tell you the test that my two friend's had.
Ellen
My primary dr dx me with ehrlichiosis/tick disease 1st before she sent me to my rheumy. 3 months later he dx me with lupus 3 years ago.
are primary family doctors pretty good at dx'ing this? What with the MRI and other tests, I've got a good chunk of dough invested in this now & kinda want to make sure I'm in the best hands.
Yabby, Never hurts to get tested! I did three times, just to rule it out, I was negative but positive for Mycoplasma, which no one usually tests for.
Let me throw a few things out for you to think about getting tested…
Thyroid T3 and T4…B12 and vit D…Candida…and depending how old you are do you have your female hormones balanced? All of these are issues for me and it is a continual juggling act to keep it all in check.
I've had my thryroid checked; it was fine. And my Vit D was low-ish, but not alarmingly so for the are we live in. I take a high quality fish oil with D in it that does seem to help a lot with the dry eyes ... doesn't take it away completely, but it takes it down from "my eyelids are literally stuck to my eyeballs because they're so dry" to a tolerable level of dryness.
Flygirl said:
Yabby, Never hurts to get tested! I did three times, just to rule it out, I was negative but positive for Mycoplasma, which no one usually tests for.
Let me throw a few things out for you to think about getting tested...
Thyroid T3 and T4...B12 and vit D...Candida...and depending how old you are do you have your female hormones balanced? All of these are issues for me and it is a continual juggling act to keep it all in check.
My Rheumatologist would not test me for Lyme's Disease. Just refused.
You’re definitely not crazy. My new doctor actually asked if I had ever been tested for it. I couldn’t remember so I think he is planning to test for it.
Oh wow…I have many Docs and not one has ever refused me anything. How about you insist…stare’em down! 
sweetiepie65 said:
My Rheumatologist would not test me for Lyme’s Disease. Just refused.
Flygirl said:
Oh wow....I have many Docs and not one has ever refused me anything. How about you insist...stare'em down! :-)
sweetiepie65 said:My Rheumatologist would not test me for Lyme's Disease. Just refused.
Flygirl said:
Oh wow....I have many Docs and not one has ever refused me anything. How about you insist...stare'em down! :-)
sweetiepie65 said:My Rheumatologist would not test me for Lyme's Disease. Just refused.
He is young too and easy to talk to but he said testing for Lymes just adds to confusion . I think he is wrong. I have 2 autoimmune diseases and I just wonder why sometimes. I grew up in the Northeast and I was outdoors all the time.
You should be tested for allthat. Either way the antibioticshelped me big timd witg pain. I just got tested for lymenext food allergies and heavy metals. Ifthere’s sometging that can help better try. God bless !