Hi, my name is Jaime. I'm 28 year old stay at home mom of two toddlers in ohio.
Been diagnosed with fibromyalgia and MCTD (lupus, RA, scleroderma)...but no ana factor.
Thing is, when I was 8 or 9 I was in Texas, and had 2 ticks burrowed in my back. Nobody thought about lyme 20 years ago.
Since then I have had an array of symptoms that each one individually no big deal, but when you look at the big picture...might make sense.
I've never been happy with the FM and MCTD dx, I feel in my heart that something is being overlooked. And I think lyme could be the answer.
question is... can I be treated after 20 years?
Can I die from this?
I found something with a list of about 50 symptoms, and it's easier to count the ones I DON"T have!
I am in pain 24/7 on strong meds, but pain level on a GOOD day is only 6 at best.
Would my symptoms get better if I can find a doctor to treat me for lyme? or is it a lost cause at this point?
can I just buy the antibiotics online?
I appreciate any advice and info on this. I am new to this and learning my way.
Thank you
jaime
[ 05. May 2007, 07:49 AM: Message edited by: jaime1978 ]
Posted by painted turtle (Member # 7801) on :
Hi Jaime,
I think you might look into finding a dr who will run a western blot test for you. Although the tests are not always accurate, if you test positive for chronic or active infectino....then you have a sense of somethign on paper to say....yes.
There is also a few backup tests like a CD57 blood count that can be used as complementary evidence to support lyme since this is "typically" low in people with lyme.
Then if you are having cognitive or neurologic issues, a SPECT scan has certain consistencies with lyme people.
But there is conflicting opinion and so it is necessary to find a dr who is knowledgable about a lyme infection that is chronic because it went undetected and untreated for 20 years. I know for fact based on personal experience this happens to people.
Posted by Lymetoo (Member # 743) on :
Untreated Lyme can lead to death....but don't focus on that!!!
Let's get you a dr and get you on the road to recovery!!
I was given the FM diagnosis 27 yrs ago. I believe I've had Lyme since the 50's....and I'm still alive and kicking!!
I found out in Aug 2000 that I had Lyme. I've been off abx [antibiotics] for 2 1/2 yrs now.
You COULD buy antibiotics online, but how about a diagnosis first!!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol There were three symptoms on that list I didn't have!!!! Posted by jaime1978 (Member # 11786) on :
thank you for the quick responses. Yes, on that list, there are only a couple I don't have!
Had 2 tumors on my thyroid , at different times so had 2 surgeries to remove thyroid. several breast tumors (non cancerous, but not cysts), had 2 surgeries for that too... and symptoms just keep coming and getting worse over the past 5 years....a lot of these don't fit in with fibro, so I am really feeling in my heart it could be lyme. I'm going to talk to my husband tonight and get an appt. with one of the docs in ohio right away. I can't even imagine what it would be like to live a normal life again
Posted by sixgoofykids (Member # 11141) on :
Jaime, I had it for 35 years and have been being treated since January. I really feel that I'm making progress.
I also live in Ohio ... I fly to NY to see an LLMD and it's worth every penny to finally see a doctor who is making me better.
Posted by Parisa (Member # 10526) on :
Jaime,
Another site you should check out is www.roadback.org. It is a site dedicated to using antibiotics to treat rheumatic diseases. There are many encouraging stories there of people who have recovered using antibiotics.
My husband has a diagnosis of MCTS or dermatomyositis. I'd rather try and fight the cause than suppress the symptoms.
Posted by sick (Member # 9143) on :
Honey there has to be hope. I have had it for 43 since. I got it in my 8th grade at school and didn't find out what was wrong until last fall.
It's a wonder I didn't go nuts from not knowing what was wrong but I just kept looking for answers. I think the worst was not having anyone to talk to about how I felt as no one understood.
I am on meds and my kids can see improvement but my docotr said not to expect anything for at least a year.
When I first found out what was wrong and actually found a doctor who knew something about it I was high as a kite on life. I've hit ground again now but I amgetting better slowingly.
sick
Posted by Searching4Answers (Member # 11079) on :
Hi there, I'm glad you are finally diagnosed,and I definitely think you will find "remission" if you treat this now. I was diagnosed after 10 years, and I don't know that one or two decades make much difference, it was chronic debilitating lyme for me, when I was finally diagnosed. I can tell you that I know what you went through, and it is really hell. Don't give up. Treat and feel better, and you'll just be grateful beyond imagination for feeling good! If you relapse, treat again. Don't give up.
Posted by Searching4Answers (Member # 11079) on :
I'm wondering what type of breast issues you had, what type of tumors/cysts? I'm having "breast issues" . . .maybe we could talk privately about it?
Posted by jaime1978 (Member # 11786) on :
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