IS Lyme creating havock in my brain!

Jackdg...

I can sense your desperation... so i am going to just lay out my story in hopes that one word or sentence may help somehow.
I always feel like my comments are too long & yet i am told that they can/may be useful... i still feel weird about the length... but here goes anyway.

It would be good if someone where to chart&graph these symptoms, so that folks can have a group to relate to. But as I've read... it is so individualized with each person having there own immune response etc.. And yet some things are the same...

Its like we are all in a maze and sometimes bump into each other.

I also know someone (family friend) who is MD and i would not even mention this topic to her... because i believe MD's are terrified to deal with Lyme... they can lose or have there license suspended <either of which can destroy their practice. I can not imagine working all my life to become a doctor... and then to be put in that position. It seems that they have no choice but to 'pretend that Lyme is not what we know that it is!

I did days of research before seeing my Doc...literally waking up and reading all day until night... or until i passed out with my glasses on. And when i was too sick to read... i watched videos or listened to audio (when my eyes hurt). And what i learned/theorized was that i had better not use the Lyme word when i see my Doc.

I had called my Doc 13 days after first getting sick (on my birthday) April 13 2015... i explained what happened on my birthday and my symptoms... i was advised to take Aleve and Claritin and drink lots of water until i see him the next day... which i did.

It seemed to help a bit with the brain fog and joint pain... but still sore in joints and especially my shoulders and neck (and i already take hydrocodone & lyrica for arthritis in my spine ~old serious injury left with traumatic spondylolisthesis) .This pain is worse than the spine pain... something is very wrong with this picture... right?

And so... while at my appt... My list of symptoms are extensive... i had it all written on a clipboard which the Doc glanced at and then put on the counter.

He ordered tests CBC/urinalysis and said "will see you after tests come back" . And then aprox 5 minutes after leaving the exam room i realized that i had forgotten my clipboard with symptoms.
I went back in with nurse... no one was in the room... my
clipboard was there... the paper on the clipboard listing my
symptoms was gone... poof! The nurse shrugged her shoulders
like uh... what a mystery. Who would want my list of
symptoms? After all the Doc didn't really seem to interested?
Ok whatever.

On my second appt Doc says bloodwork normal except anemia...
he does another physical and wonders why my stomach is
tender? I wonder why he is only focused on my stomach when my
whole body is tender? He ordered an ultrasound on my
stomach... said that he would monitor me closely and to call
if symptoms get worse. He will see me in 2 wks (after
ultrasound).
* At one point i said "I know that am sounding like a hypochondriac" to which he replied (while looking deep
at my eyes) "You are not a hypochondriac" I said "Thank you".
See... i woke up that morning feeling like i had pinkeye (sore red..hard feeling in inside corner) but it vanished after a few hours... the Doc saw no sign of pinkeye.

And so... i am waiting for the ultra sound and wondering what is my Doc going to diagnose me with~ so that he doesn't have to call it Lyme. I am still researching everywhere and finding this forum... which has been such a blessing.

And then i run across an article... a study done by Stanford Medical regarding the ingredient in Claritin having to ability to kill parts of Lyme? (paraphrasing ~memory foggy)
Hmm... i am feeling a bit of hope now... maybe my Doc is on to something here. I read the comments under the article and don't allow the negative to penetrate my mind... because this is my body and my life that i am living after-all... not theirs.

I had also ordered Dr J's book on Beating Lyme Disease...Living the Good Life in Spite of Lyme...(Almost done reading) I ordered a detox med ~not from Dr J (can't think of name right now)... and Green Vibrance. I also ordered supplies to get into a daily detoxing regimen.

From the research that I've done so far...I don't believe that the disease goes away entirely ever at this point...(which may be what the Doc was saying to you?) ...Unless they find a true cure. But there are folks who test positive and never get sick... so i ask...why do they not get sick? More research...

For now i have learned to trust my own instincts... for me that is a huge lesson. And to listen very closely to my body... something i am still learning. And... to pace myself... i need to accept that i can't afford to physically exert myself right now... not like i did before... Its another "new normal".

I am very grateful to have learned through my experience with the spine injury. I was misdiagnosed for 8 yrs and treated like a big faker by Docs ~until i went to the New England Spine Clinic...
And when the Doc showed me exactly where the damage was on the x ray... i cried... because it was exactly where i had been telling them for yrs. It was a heart breaking experience to endure all those yrs... but i learned so very much.

I also know what Docs go thru in medical school and during residency... it seems that they are trained to accept the politics
of medicine and learn to "play the game" by the authoritative role... or go into another field. It seems that they become so desensitized in order to survive in the field of medicine...
As an example: i have seen major personality changes with the Doc that i know. It is just sad that she cannot just help people the way she had always dreamed... she must "play the game".

*If any of this is offensive to someone for some reason... i am sorry... i am only sharing what i have witnessed.

And so... there it is... so far (the condensed version)... I hope that something i have said may spark something in you to keep striving for your own healing. To know that you can find the way... even though the road is filled with potholes. I believe the answer is out there... in others stories... there are tidbits that lead me to the right path... it is a mystery... mysteries are meant to be solved.

I am sending Good thoughts to you for your journey today.

Hi Jack and welcome!

You can get well! We have some members here that are healed including myself.

My take about the brain is from what I have read from doctors who seem to know what they are talking about which is when lyme bacteria die they leave over toxins. Those toxins need to be cleared out from not only the body but from the brain as well. Toxins can cause lots of problems!

What worked for me and my brain was clearing out the ammonia. When I was sick I smelled ammonia from my body. Not everyone does but I did. I took a biological medicine (all natural) called Neuro-Antitox CNS/PNS formula and that bound up the ammonia so I was able to pee it out. I took it for several months, maybe almost a year. I don't remember because that was over 9 years ago.

There is an article called "Lyme Toxins the Primary cause of your Symptoms" and let me see if I can find it for you as I found it very helpful.... It's in pdf format so I hope you can read it.

www.benbrew.com/lb/lyme5.pdf

Hope this helps!
Denise

~Jackdog... I forgot that i had written the post above (dern silly brain these days) reading that you used the word COURAGE after receiving responses was very good to read. I can relate to the brain stuff... i was frustrated at first...but now try to add humour (because humour reduces stress)
.
It takes me Alot of effort sometimes to post... i have not ever really used spell-check for example... because spelling had been my strong suit since childhood... but now i will find myself using it several times in one sentence. It gets ridiculous at times, like these for example: brian/brain spellchick/spellcheck chioldhood/childhood. I do miss my mind... i feel like i shoulda made better use of it when it was stronger... but then i don't like to "should" on myself. Gotta keep that stress level down.

And then the revolving symptoms popping in and out... yesterday i woke up with left hand falling asleep... later that day piercing pain in left knee~could barely walk...the pain is still there today... not as sharp.

Oh well... gonna trudge forth dragging my optimism and sense of humour... with courage,hope and faith. And gratitude for the little triumphs along the way. I woke up with both hands awake today... that was good.

Hang on to that Couarge/Courage!

Hi Jack,

I have just started experiencing the same symptoms, and I would love to know if you have discovered anything new.

My regular ELISA and Western blot tests came back negative for lyme (common, I think). I took an Igenex test which came back positive (also common). The question is - do I believe the doctors who say that I don't have lyme and that the Igenex has false positives, or do I listen to my LLMD who tells me that the regular tests are false negatives, and that I do have lyme? I have not done any ANS testing, so I'm also wondering if my symptoms could also be dysautonomia? Could lyme be causing the dysautonomia-like symptoms? I'm being pulled back and forth between all the doctors, and I feel so lost. I'm also worried that I'm secretly hoping for lyme because it is more treatable than dysautonomia, but that the antibiotics might be doing more damage than helping if it is not lyme. UGHH!! I feel your pain!!!

My symptoms are the same as yours, except I also have tingling in my arms and legs that comes and goes at night. Brain fog is a nightmare! I'm a high school teacher, and I can hardly focus enough to enter grades into my grade book, let alone assess student work, plan lessons, and teach high schoolers all day. I just want to go back to normal! I had some weird, but manageable symptoms all summer like itching skin with no rash, stomach pains, mild rashes around my eyes, extremely low blood pressure, waking up with goopy eyes that would clear up almost immediately, etc. But the tingling and mind fog basically happened overnight, and now I am stuck this way. I can deal with the pain and fatigue - but I really miss my brain :(

Hi jbousquet - welcome to our community!

Yes, lyme can cause dysautonomia symptoms.

I would listen to the LLMD - who said you do have lyme...and start treatment.

Have you taken a look at the "New to Lyme?...Start Here!" thread at the top of the page? It's full of great information - including symptom lists of the infections - so you can check there for your symptoms.

From my experience, lyme and co-s can cause just about any symptom - since they can get into all body systems, including the CNS.