I am posting this on behalf of others that may be fighting the fight similar to me. There is hope! (but I am still skeptical)
I finally rec'd a Lyme diagnosis yesterday after 9 months of my body melting down. I've noticed there are generally two reactions to a Lyme dx: "No, it can't be" or "thank God". I am in the thankful crowd as the only dx being pursued by my local medical pro's is ALS.
I have begged for referrals to rheumatologists, endocrinologist, infectious disease specialists, or anyone that would be willing to look at my entire health profile. I was just told that my bloodwork is unremarkable and my problem was sleep and anxiety. 7 doctors later they had me convinced that I was crazy and would likely die of ALS.
I am still concerned about ALS. I have symptoms that point to it: twitching, brisk reflexes in the knees, and muscle tension. My neuro hasn't diagnosed me with ALS, but says he's concerned and wants to keep watching me. That is important, but after 9 months I have no weakness and my symptoms keep changing. And I'm learning that my health issues of the past 4 years aren't just coincidental.
My top complaints have been muscle pain, tension, and fatigue, for 9 months straight with no relief. I have had this same complaint that would come and go over the past 4 years but it never lasted long enough to impact my quality of life.
I have also had or have memory issues, tinnitus, sound sensitivities, headaches, night sweats, severe unexplained gastro issues, carpal tunnel, cubital tunnel, low heart rate, and on and on. I have a long list of other weird things, nothing that fits an objective test.
In the past 9 months I have been to the ER twice for swelling of the upper body and face, totally unexplained...looked like I was beaten by Mike Tyson. I developed carpal tunnel almost overnight and have had to have surgery to repair it, including cubital tunnel. I was diagnosed with lumbar radiculathopy.
I have always suspected Lyme (even after 3 failed ELISA tests), so I got a friend Dr. of mine to sign off on an Igenex test (my regular PCP wouldn't). I got the results this past September and they came back negative sending me further down the rabbit hole.
I never even looked at the actual report until last week. I saw that I had two IND bands specific to Lyme and ++ on band 41. It didn't take long to research this to discover that it points strongly to Lyme. And my Bart test showed some reaction, so it wasn't conclusive and indicated I may have Bart as well.
Short story from here is that I was able to quickly get into a highly respected LLMD the very next day. I had tried him earlier this year and it was a 4 month wait, I happened to call after a cancellation and after hearing my story they wanted to see me...that was a blessing.
It didn't take long for him to declare it's Lyme, said my twitching is not always common but it happens often enough and I shouldn't worry about it.
I have tried protocols that included herbs, diet, magnesium, vitamins, etc. This certainly helped my gastro issues but not so much my muscle problems and fatigue. Now I am on an aggressive antibiotic protocol in addition to diet, enzymes, vitamins among other things.
I now have hope that this can turn around. I know there are stories of folks where it didn't, but having someone on my side has certainly lifted my spirits...I'm not giving up yet.
If you have a similar story I'd love to hear from you, b/c honestly I am still having a hard time reconciling the fact that my muscles hurt all the time and I twitch -
I always thought Lyme was about waxing and waning...or was that early on and now it's locked down for good until it's gone? and did I mention that I twitch alot...lol...pray those antibiotics can get that under control soon so that I can get ALS out of my head!
Allen
(breaking up text for easier reading for many here)
[ 12-21-2018, 02:50 AM: Message edited by: Robin123 ]
Posted by hiker53 (Member # 6046) on :
Allen,
Sometimes Lyme can be the better diagnosis.
Sure pray you get some healing relief soon.
Welcome to Lymenet and Merry Christmas!
Posted by Lymetoo (Member # 743) on :
Welcome!!
Glad you found us, but not happy that you have Lyme to deal with.
I think over time, you will find that fixing the Lyme is possible and your symptoms will reduce. It could take months or years, however, so HANG ON!!
I'll come back to post some links on Mast Cell Activation Syndrome. That could explain the rest of your symptoms that you can't quite figure out.
Most doctors do not know about it, either and Lyme could have caused it.
I hope you don't mind my moving this to medical questions. You will get more responses and help over there. You are welcome to post in General Support at any time.
Allen, My hubby has muscle aches /pain all the time. It aches worse when its going to rain. He doesn't have the twitching though. Fatigue, yes!!
Posted by Robin123 (Member # 9197) on :
Welcome - your story is unfortunately the typical run-around for Lyme/co-infection patients. At least you figured it out and you're here - lots of experienced patients here to help out.
Re the ALS concern, a doctor with that diagnosis was written up in Pamela Weintraub's book, "Cure Unknown: Inside the Lyme Epidemic." I highly recommend you look at this book - I think you're going to be very interested in his story. His name is Dr David Martz - he's no longer practicing so we can say his name here. He's retired and in CO.
We heard him speak here in CA and he said he did antibiotics and turned around his ALS dx, which turned out to be Lyme. So, there is hope!
We're all different in what we have and how we respond to remedies, so we just have to try stuff.
I take turmeric capsules to take down pain in muscles and joints. Very simple, cheap remedy - I get the turmeric powder at the health food store and dip 00-size capsules in it, take one in the am and pm.
Most of us take magnesium to help with energy, relax muscles and reduce twitching. I also benefitted from taking flower pollen way back when, and that provided me with energy. That's when I didn't know what was wrong - I was just losing my energy.
Tinnitus - the only tx that helped it for me was a PEMF machine - look it up. It provides electromagnetic boosting to the body and then that quiets down the nerves, an LLMD told me.
Question re your night sweats - have you checked on the symptoms of babesia to see if you think you match any of it? If so, that gets treated too.
There is hope - don't overthink this - we have to find out what works for us - it's a medical adventure. Hope this helps.
[ 12-25-2018, 01:24 AM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
Great advice, Robin! Thanks for chiming in!
Posted by t9im (Member # 25489) on :
Hi Allen, welcome to the Lyme community.
It is unfortunate you have to experience the controversy but it is alive and well in both the diagnosis and treatment of this disease.
It is rare to find a truly Lyme literate IDSA, Rheumatologist or Neurologist M.D. (especially considering each of their society treatment guidelines require strict adherence to the IDSA treatment guidelines.
I second Robin's reference to Dr. Martz and the sites in Cure Unknown. I meet him 3 years ago at the ILAD's convention and he was in good shape for someone given an ALS diagnosis (has to be over 15 years now for that misdiagnosis).
Posted by Allen R (Member # 51566) on :
Robin and others, thank you for your replies. I have a lot of healing to do, starting with getting this A.. out of my head...this helps
Posted by Lymetoo (Member # 743) on :
Definitely get more magnesium into your body. Remag is a really good one.
Lyme depletes mag and so do the meds.
Posted by Keebler (Member # 12673) on :
- Re: " Robin's reference to Dr. Martz and the sites in Cure Unknown. I meet him 3 years ago at the ILAD's convention and he was in good shape for someone given an ALS diagnosis (has to be over 15 years now for that misdiagnosis)."
Dr. Martz is also featured in the documentary UNDER OUR SKIN. This is a "must see" to understand the controversy.
He also had Babesia, something that should also always be considered. -
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