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I have another diagnosis - not "IT" - but STILL worried?

PostPosted: July 1st, 2015, 6:37 pm
by Scaredlin
Hi everyone, I was a rampant poster from Jan-June 2014. I was an all over twitcher. I had the same fears you all did. In June 2014, I was diagnosed by an LLMD (Lyme literate dr) as having not only Lyme, but reactivated Epstein Barr virus. So the first thing I want to say is if you are twitching all over and having other weird nerve symptoms, spasms, and esp. back of the head headaches and eye and cranial issues, and weird autonomic issues - get tested for both. Esp. reactivated mono. This isn't chronic fatigue syndrome although they are frequently confused- unlike chronic fatigue, reactivated mono can be shown conclusively in a blood test. If you had a bad case of mono as a teen like I did, DEFINITELY get yourself tested, because reactivated mono comes back IN THE NERVES, and not necessarily as it did as we were teens (glands, fever, tiredness, etc). GO GET TESTED.

HOWEVER, here I am a year later, worried again about "IT" again! Why? Well FIrst, my Lyme and ebv treatmt isn't going as progressively as I wanted and my ebv levels still activated. Still feel like crap. The meds are all a crap shoot. ITs all trial and error. If you get diagnosed early like Avril Lavigne, its easier. Mine is likely 15 yrs old and I have neuro lyme. Much harder to get under control. Damage done. I do have several very Lyme specific bands and had "flares" of weird symptoms over the past 15 years which is too long for A**, and I did react strangely to antibiotics (provoking flares) all those years, which is a classic Lyme herx reaction (where the buggers in your body make you feel like crap while they die off to the antibiotics), so I should believe my diagnosis. My doctor is also the best in the state in Lyme. She should know.

Yet, some days I find it so hard to believe. I still experience all the crazy symptoms a year after diagnosis and treatment. They migrate (more classic virus and bacteria clues - so if yours migrate, its a GOOD thing to stop your mind from worriying its motor neuron - its likely not). But they are soooo horrendous that I have a hard time believing its not still so DIRE - Like they are missing motor neuron or cancer. I am one of the unlucky Lymies to have cranial nerve issues. LIke burning spasming throat. Weird eye and tongue tugging sensations, like my tongue is being pulled down my throat. Face stiffening. Ear fullness. Sometimes all at once. And weird cardiac issues. Waking up 8 times at night feeling like I'm "shorting out" or "powering down" - definitely not sleep apnea, but nerve conduction issues. The most frightening feeling I have EVER had. I feel like they MUST be missing something - like why can't i be the textbook Lyme patient and have joint pain? Unfortunately mine went SO LONG without being diagnosed that its neuro LYme.

Third, do you know what I did today? I was at the gym. And I was sitting and noticed a huge quarter size DENT in my right calf - clearly atrophied spot. None of this oh we aren't all symmetrical, etc. junk, - this is a real dent and I KNOW its new. And I FREAKED THE FREAK OUT. Yup. I spent my entire day researching. This despite the fact that I DON"T twitch in my calf ever and don't perceive weakness there. I can still run, lift, stand on toes. etc. DO YOU BELIEVE THIS CRAZINESS. The worry flooded back because of a dent.

So anyway, I wanted to post to a) reiterate my story for those of you who may twitch - please run and get tested for reactivated ebv and lyme and dont go to a regular dr. You need to go to a LYME LITERATE dr. The labcorp and labquest tests are JUNK. Lyme is VERY HARD to diagnose - hence why some of us get labeled loons and 2) to get some reassurance about my dent - if I remember my A** rules, its weakness before atrophy, RIGHT???? I guess its always possible its due to my lyme, but the fear still resides in me on some level.....

Best wishes to you all!
L

Re: I have another diagnosis - not "IT" - but STILL worried?

PostPosted: July 1st, 2015, 11:38 pm
by Yuliasir
Hi,
our main problem is that being too much stuffe with ALS info, we never consider two facts:

a) our dents could be due to fat tissue atrophy, not muscles; we often underestimate how much of fat tissue we have covering our muscles, and this tissue could often be decreased in a focal form (due to bad blood supply most probably) causing various 'holes', 'dents' etc.

b) MND is not the one reason for muscle atrophy (another one is call whatever - from autoimmune rabdomyolisis, however it is usually could be made clear by urinalysis and other symptoms) to most frequently occured mechanical nerve damage.

having recurrent neuroinfection is not a perfect gift og the nature of course, and moreover, there is a little chance for cure becasue not many medicines could efficiently penertate into nerve tissue, and as you may know, it is no chance to kill viruses with antibiotics (they just have no ction mechanism in case of viral infection). But still it is not ALS. That is all I can tell you.