I have been diagnosed with ME/CFS & Fibro for almost 20 years, sick about 35 years.
My son was diagnosed with Lyme a little over a month ago - and because of this board I was encouraged to get tested.
If it wasn't for this board - I probably never would have known.
I think it's possible I got sick on my honeymoon to Cape Cod. Came back a year later, pregnant with my son. About that time, all hell broke lose in my health. I had a bone tumor in my skull, I had migraines, stiff neck, extremely low blood sugar (26) and severe exhaustion.
It's gotten worse through the years and I have been disabled for over 15 years.
Don't know what to think at this point. Very sad that I may have given this to my son.
But thanks to all on the board who have encouraged me to get tested and given me so much advice.
Posts: 132 | From Texas | Registered: Apr 2012
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posted
Yes, clearly positive - Western Blot & CDC based criteria. Don't have lab tests in my hand, but that's according to my doctor.
So much to process. So do this mean I don't have ME/CFS & Fibro? Or did the Lyme cause me to have those diseases?
I fit the ME definition to a T. I have extreme exercise intolerance. And then all of those extra goodies that won't kill me, just make life a bit of an extra struggle - MVP, GERD, POTS, Sleep Apnea, Restless Leg Syndrome, migraines, osteoporosis, osteoarthritis, Fibro, IBS, REM Sleep Behavior Disorder, Fibromuscular Dysplasia, inability to deal with stress, hearing loss ...
But the most severe symptoms are the Brain Fog (diagnosed with Organic Brain Syndrome) and the utter exhaustion.
Posts: 132 | From Texas | Registered: Apr 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
All sounds like Lyme and co-infections to me. And don't forget parasites. From what I'm understanding, that is always in the mix for the chronically ill. Some believe that it is one of the major underlying conditions that have allowed us to get so sick in the first place and unable to get well from Lyme and co-infections. I can't stress the importance enough.
I wish I understood the importance of parasites YEARS ago. It would have changed my life. I am treating now and am seeing crazy results. Check out my other threads and posts.
Posts: 2238 | From East Coast | Registered: Jul 2010
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-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
My sympathies, and congratulations, coincidentally.
For my money - You do NOT have ME/CFS OR Fibro! (That should be the good news, because NONE of those are really treatable, right??)
Look at it as "the best part of the rest of your life is yet to come!" Once you get rid of these buggers, you will probably feel 20 years younger!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I can relate. I found out I had Lyme after my son tanked and was diagnosed. My infection goes back 32 years now. Only 30 years misdiagnosed with many conditions.
I hope you both are with a spectacular doctor. I'm sorry you are going down this road. Keep fighting!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i went 15 yrs with that dx and knowing i had it but not able to get a doc to dx until my 10 yo got sick and dx
i knew i had lyme but didnt know you could give it thru placenta or breast milk so i gave it to her that way
i didnt know she was sick with lyme until she was 10 and too sick to go to school
i want you to know she is doing fine now. married-working on her doctorate in chemistry. it took about a year of tx and then a year of cleaning up---dealing with yeast and detox.
i got well enough to work as teacher another 15 yrs and i feel my life is still worth living but i have a lot of permanent damage-thyroid, adrenals, hypo-glycemia, arthritis, obesity...but my life is ok when i can plan it right. stress is hard.
good-luck to you and your son. please get good tx asap. it will change both your lives.
my daughter-in-law started tx in her 30's and ended up going to school to be a teacher. before treatment she couldnt focus enough to so college work
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I went 25 years misdiagnosed with fibromyalgia, so I too know the feeling - I think it takes quite awhile to "rewrite" our history for ourself, to put back in what was really happening to us. So give yourself some time to digest the news.
I had a known tick bite on my foot and can date every symptom. I had full-blown "fibrocitis" in 18 months time.
And it wasn't your fault if you gave it to your son - so many people have no idea what's going on.
Good news is you found out and will have a chance to treat the real infection, accurately. Treatment happens in three ways: kill/deter the organism, detox, and fortify the body.
For me, I was able to successfully treat my fibro symptoms by taking oral clindamycin 150mg 2x/day. We're all different in what works for us.
You can study here by using the Search function at the top of the page - type in any word or phrase and archived threads will come up. I call it going to Lyme school for awhile, just to learn about the variety of things people try.
Posts: 13171 | From San Francisco | Registered: May 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Wow, I'm so sorry to hear this but also relieved for you and your son at the same time.
It will take awhile to wrap your mind around all this and you will go through the whole range of emotions but now you know what you are looking at.
Your new diagnosis has a treatable underlying cause whereas your other diagnoses did not. You guys are going to get better! Not overnight but you will.
Posts: 2541 | From Northeast | Registered: Jan 2008
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