posted
Haven't been here in awhile. Just did my first cycle of abx and taking a week off. This is all just such a drag.
Symtoms still here. So I could cope a psychiatrist put me on Lyrica. Of course he didn't believe in Lyme disease and saw it all as GAD. I paid him 200 euros for about 20 minutes for him to tell me that.
Just all gets to be a little too much. Lost my mother recently to an anurysm, lost my work, got physically destroyed by a chiropracter, got severe Tinitus (and I was a musician) and was diagnosed with Lyme all within the last 2 years. When it rains it pours I guess. Oh well, there much worse cases and people in much worse situations.
Posts: 128 | From California | Registered: Apr 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry fred0. It seems you have had more than your share to cope with. I am so sorry for your losses. To make matters worse, depression and anxiety can often worsen when you are herxing.
If you can possibly find a support group in your area, it would really help. The people there can direct you to a supportive therapist or psychologist who is lyme literate as well. I know there are many in CA - but it is a big state.
I have severe tinnitus as well - and it tends to rule how my days are. There are many here who have had tinnitus that improved over time with treatment. I am looking into PEMF machine, sacro-cranial or Omnamed therapist for relief.
I am not a musician but come from a family full of them and have such a love of music. I can no longer enjoy musical events like I did in the past due to my sound sensitivity. Hoping this will improve over time...
The treatment takes a lot of patience. Rest, detoxing, liver support and building up your immune system are all important. A workable exercise regimen has been a big help to me. Be sure to discuss all of this with your LLMD.
It helps to have discussion with your LLMD about your response to treatment - and to have an idea of how long LLMD would want you to stay on current protocol before moving on to others. I hope this helps. Try to hang in there.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
fred0, I just came across this story very recently, and reading your post made me think of it. I posted in General Support 'A Nice Story- (a pick-me-up) I hope you find it encouraging. And I "amen" to all that dbpei said too. Feel better soon. KW
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Hi fred0,
You are absolutely not alone. At times, over this past year, my husband and I have joked that we seem to have a locust plague on us...so many tragedies for one person to handle at times.
Just know that you will get better. You will find that you can still have good days in spite of all that you have to cope with.
Sure there are people out there with no arms, no legs, are blind and have cancer all at once...but your struggle (and mine) is just as valid.
posted
Tha!nks for listening/reading and for the encouragement!
Posts: 128 | From California | Registered: Apr 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im sorry fredO lyme is bad. ive been dealing with it a long time so dont think of a cure anymore...just of maintaining in a way i can handle. i really try to focus on the good stuff - no matter how small...and i have my one really horrible thing that happend to someone else for a reality check...but like lax mom says...each of our struggles is valid.
i dont know how old you are but i like to let ppl know all 4 of my kids had it...got tx...some for 3 yrs...and all 4 are working, married and able to have some fun.
please be gentle with yourself...do your best with tx...and find something that is fun for you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
ah fred, no, you're not alone. so many of us have dealt with all these things for years.
i had to retire because of it (well, my coworkers made me miserable so i gave up), marriage tanked and has never been the same, doctors are the pits, body is shot...
thank God i don't have the money problems. but man, i'd rather be healthy....
so move over, you've got lots of company.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Thanks again for the helpful replies. I had really fallen into a slippery slope of negativity. A work in progress. Most of my symptoms are neuro/pyche related except for a lot of creaking bones and my Gut problems which have become much better. Recently, actually right after taking a break from abx I started to feel worse, more anxious,etc.. I need to give myself a break and allow myself to feel rough around the edges especially when right in the middle of treatment. Next week I start again with a new set of abx. @Lymetoo-I play mostly guitar, bass and drums. Drums have mostly been taken out for the time being because of Tinitus and I just stick to my acoutic guitar. Thanks!!!
Posts: 128 | From California | Registered: Apr 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hey tutu-i didnt know that...i played the clarinet toooooo. in the marching band! haha...like the short fat guy in brad's song...
acoustic guitar has been my love for a long, long, time. has gotten me thru lots of stuff. john prine and kris kristoferson.
i occasionally put janis on to help me clean the house!
but all kidding aside. music is something we can do for a long time...listening counts. it changes my mood and i swear it helps me heal.
fredo-we go thru stages with this disease and it helps to be real flexible and not fight the whole time. you already started...cant play drums or elec guitar...switch to acoustic.
there will be times all you can do is listen. thats ok. it reminds me of how i used to have a huge garden. now i have a few perrenials , pay gardeners to help sometimes...and just get happy seeing and smelling a flower.
i sense you are young for some reason...and if you are there is no reason to think you will not get a whole lot better with correct tx...and be able to get back to much of your former life activities
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by lpkayak:
...and just get happy seeing and smelling a flower.
Love that thought lpkayak, some days it truly is the small things that count.
When I was released from the hospital, it was so nice just to see a tree in person. I had taken the little things like that for granted.
posted
That's great, fred! I'm glad you can still enjoy the guitar a bit.
Kayak.. I used to march in band too. We had a really good band in Jr and Sr high. I decided NOT to join the band in college because I didn't want to march anymore.
So my sophomore year, I meet my husband who is ironically a clarinet player too. We met at a dance.
SOOOO... I joined band my junior and senior years. By that time they had quit marching! YEA! We got to take some nice band trips and had a lot of fun. My lasting friendships from college were band members.
Somehow, even my roommate my jr and sr years was a clarinet player! WEIRD. We are best of friends forever. Oh, we are BFF's!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I played clarinet in the high school marching band too!
Fred don't give up. The negativity can be due to the the illness itself causing inflammation in your brain.
I find my moods improve with fish oil, japanese knotweed and a combination of eleuthero, ashwagandha and rhodiola.
And then the difficult situations we find ourselves in (all the losses that you described) can be so overwhelming.
Listen to your body and give it what it needs, if you can.
Enjoy your acoustic guitar.
Posts: 1358 | From Midwest | Registered: Apr 2009
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quote:Originally posted by Rivendell: Well, I played clarinet in the high school marching band too!
- GET OUTTA HERE!!
Penguingirl also plays clarinet.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
guess what...i exercised...i walked about 20 min on the beach with etta...she was really funny-i was on hard sand and i didnt even hurt...it was a little scarey getting off the beach...the steps were really high...then we hung out and breathed good air for awhile-im going back to morrow. soon i wont be able to get there
WHAT AN IDIOT I AM!!! I THOUGHT I WAS ON THE EXERCISE THREAD...GEES. LYME BRAIN
posted
Rivendell.. I was going to take it up again a few years ago, but decided not to. Sigh.
I would probably be disappointed in myself! I remember picking it up about 5 yrs after graduation from college and I had a good sound, but the accidentals and key changes were killing me!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Loved that video lymetoo!
Posts: 2386 | From New England | Registered: Aug 2011
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