This is topic Dealing with the ups and downs of lyme in forum General Support at LymeNet Flash.

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Posted by kam (Member # 3410) on :
I came down sick in Oct. 2001. The first thing I noticed was that the one consistant thing about this condition is the inconsistancy (sp?)

AS I read the people who committed suicide, I can certainly relate or understand. There have been many times when something in my brain chemistry changed and if I had a way of ending it all, I might of done this.

Then, the brain chemistry changes and I can't even recall how the past few days have been or what my symptoms were.

I once again am back to fighting the good fight.

I am looking for ways to deal with those times when checking out seems like the way to go.

It does concern me that one of these times I may not pull out of it.

So, I have a feeling others may have been in the same boat.

So, I thought I would open things up for discussion. I know each of us is different and dealing with different things.

One thing, I keep trying to identify when it happens is what needs fixing....besides those darn spirochetes that is..

Is it neurotoxins?

Do I need to detox?

Is it removal of negative people in my life....this has recently made a big difference in my outlook.

Is it lack of not having a computer to connect with others...this recently changed too so I am back on line.

Is it the stress over income?

Is it the lack of help from the insurance and medical field...with the exception of my LLMD of course..thank God for him.

Is it because my outdoor power chair is broken down and I am no longer able to get out and just cruise where I wish and am limited on where I go each day up and down the same road in the smaller chair?

Is it because I have over done it and need to rest?

Is it because I am just realizing how poorly my brain is working....I knew before...but my body was in so much pain it took all the attention and the body is not in so much pain...I am realizing how little the brain is working.

A power chair helped me with mobility.

How do I adjust the brain thing. Brain food...more fish? HA!

Continued treatment of course.

Is it because I miss not being able to get in my own car and drive. It has been at least 3 years now since I have owned my own car and had the freedom to drive myself places.

I miss that.

Would I be able to do this if I had a vehicle? Is the brain working well enough? I don't know until I try.

Is it because I can't usually do my own household chores? I feel so much better when the house is clean and organized.

Is it because I am beginning to wonder if I will regain my health. I really thought I would regain my health.

First in 2 weeks after starting treatment.
Then in 6 months.
Then in 3 years. It was 3 years in Feb. I think.

Feb. 2003 to Feb 2006. Yep. 3 years.

But, I recall reading about someone who took 7 years and now is able to climb mountains so there is still hope.

Is it because this is taking so long?

Or is it because I moved to a new town and do not have the network of friends that I had at the old town...loneliness?

But, I have meant a few people here. Just not any one that I can deal with frequently yet. Most don't get it that I can't take a lot in and when they talk so is as if I am running a marathon with them.

My brain hates to see them coming.

I am seeing improvement. Enough improvement to keep me on abx. When I am off abx, all those symptoms that I forgot about return.

Is it because there are so many unknowns with lyme disease.

I keep thinking of the college professor who killed himself. He said that they just don't know enough about it.

I think about the guy who recently killed himself. They say he was a positive kind of guy and encouraged others.

I do believe something happens in our brains.

But, I also think it might help to find a way to deal with it when it is happening until the the old fighting spirit comes back.

For example. My parents can really get to me. Things they said to me the past year or so since I moved close to them kept running through my mind.

Now, when I replay those negative tapes in my mind, I replace it with God Bless my mom and dad Lord or something along those lines.

I know another guy who keeps penguins to help him as a symbol that means something to him during his down times.

I like dolphins myself. I hope to swim with the dolphins one day. Today in water therapy, I noticed I was swimming with the dolphins. There were dolphins on the walls.

I have got to be more specific with my prayers. This is not what I had in mind.

Either is my power chair as my new wheels. When I was telling God I was thinking of getting a convertible for my new car before I got sick...I did not have a power chair in mind. It does have wheels and it is a convertible.

OK. I have yammered away on the keyboard long enough.

Time for someone else's two cents worth.
Posted by Geneal (Member # 10375) on :
Dear Kam,

I wondered where you were. I so enjoy reading your "can do" posts.

For me, giving up is never an option.

I have two young children. My biggest fear prior to dx. and antibx was that I was going to

die during the night and my babies would fine me dead.

I am lucky as that I have a neighbor who also has Lyme (I recognized her symptoms and she now sees my LLMD).

She is a great supporter of me and I of her.

My Mom is fantastic too, although she sometimes gets frustrated with my illness and lack of memory.

I also have a great deal of faith. I pray throughout the day and know that God has not left me.

I don't know how I would feel if I didn't have faith, my Mom and my neighbor.

I still get overwhelmed. I don't even know how long I've had this disease and co-infections,

but I do know that I no longer have stabbing head pains that I had for at least two years. Babs tx. is taking care of that.

I cried just two days ago. Just so tired of being sick, feeling sick, and being tired.

I did years of work with stroke patients, closed head injury patients, etc.

The most common side effect from any damage to the brain is depression.

Most often the last issue to get addressed.

Stands to reason that ketes in your brain can cause this too.

I plan on winning this battle, if not the war.

Please remember that your darkest hour is only 60 minutes long.

I am glad you are back. Is your power chair still under any kind of warranty?

Do you have an estimate on what it might cost to fix?

I don't have a lot of extra, but I'd love to help the cause of "Fixing Kam's Hot Wheels".

I think life may look better and brighter if you could get out more and go farther.

Please, please let me know.

I keep you in my prayers.


Posted by kam (Member # 3410) on :

Good to read your post. It is strange to me how my attitude keeps changing with this.

One day I feel like several days are attacking me at once.

Other days, like today...not much bothers me at all..even though I know there are things that need to be looked into and accomplished.

I need the rest first. Too exhausted to care at this moment in time.

Sending you a private message regarding the power chair.
Posted by bettyg (Member # 6147) on :
kam, great seeing another thought-provoking post from you.

yes, lyme is depressing. i admire YOU SO MUCH; you have been dealt many adversities, but you took each of them, and made them into lemonaide instead of being royal lemons!

you've always got your lyme family HERE to depend on, get needed support, and laughs and to cry with!

hang in there, BETTER DAYS, MONTHS, AND YEARS ARE COMING FOR US ALL IF WE BELIEVE! Miracles happen; why not to US lymies? [group hug] [kiss] [group hug]
Posted by Bruceallan (Member # 9317) on :
Hi kam,
For the days that I am unable to get out and about, I have a pet chinchilla that I cuddle

(envision a 49 year old man who is 6'6" tall snuggling with this small animal )

Chinchillas are usually very active and not good for snuggling pets, but its like this one knows how bad I am feeling, and is very willing to

lay in my lap and let me pet her 1 to 2 hours at a time, at times she crawels up to my nose and puts her nose to mine and wines a little then goes back to my lap and lays down again.

other times I take her to the couch and she crwals under my shirt and snuggles in to my arm and chest, she has fallen asleep there many times,

I am always careful to put her back in her cage before I fall asleep.

Having a Pet to snuggle with can help,

Here is a post I made in another forum with regaurd to Bill passing away, I hope it encourages some here.

Musician remembered as battler against Lyme disease

I am new to this group and saddened by this news (even though I did Not know Bill), but at the same time I understand how one can get to this
end, as I have had this severe exhaustion, since 1986 when I went close
to bedridden for a year,

looking back I hadn't bed well since 1978 it was then that I was waking up tired all the time, and I just kept pushing to get things done
untill I colapsed in 86.

I had been diagnosed with several things, CFS, Fibro myalgia, Have been told its all in your head, sleep disorder (no rem sleep no stage 3 or 4)irritable bowl syndrome, the list goes on and on.

Then, last year that I found out that I have had Lyme(near 30 years),then after a few months of treating it I had 2 weeks where I was getting up feeling rested and glad to be alive, it was then that I realized just how sick I have been,

then down for two months, then back to 30% of normal, besides the ups and downs with this disease, there is how people treat you, most just
cant even begin to imagine the severity

of the exhaustion, pain, the insomnia that is present at the same time as the unending exhaustion, when you just want some restful sleep, the desire that burns inside to want your life back,

to be able to go hikeing or fishing, Camping (how I grew up removing sevral ticks each year from 15 different states) or even to be able to
go on a cross country road trip.

Then the ups and downs, just when you think you are making progress to have the rug pulled right out from under you, each time this happens it
leaves you physically and mentally lower than before, then another complication can hit (for anyone),

with me it was west nile in aug 2003, prior to this 18 to 20 months was the longest I had ever been down consecutivly, so 2003 to 2006 3 years,
I had thoughts of ending it all last spring as I was getting diagnosed with Lyme (western blot panels & history & symptoms)

This gave me the strength to continue (someting to treat), and limited progress helps, I hope I never follow thru with those thoughts, I dont
think I would. I have been using antibiotics & cholstramine (removes toxins and die off)

Also doing colon cleansing and parasite treatments (colonix program)every 6 months, am now off antibiotics, and trying samento.

I can count on 1 hand how many people in my life who begin to understand the life I have and how it has impacted my wife and I, most people do not. I am very fortunate that my wife is 1 who does.

May all who read this please continue to fight this battle, know that there are many others walking this same road,

New advances are being made every day with medicine, and herbs, many have recovered half of there health back, and some ever more.

Find the things that we can do, and relish them, when to exhausted to do anything, listen to soothing music, pray, find something to fill the
time, and to keep away from negitive thoughts.

I find that meditating on bible verses and prayer have helped me more
than I can find words to explain with.

My warm thoughts & prayers go out to all who knew Bill, he is now in our Creators memory awaiting a ressurection to a healthy life in a new earth!

Take care to all Bruce
Posted by sizzled (Member # 1357) on :
When you asked for a companion dog and told how to save ink cartridges and gave an address where to send them....

Well, I saved about 25 and sent them in.

You gave me something to do to help. Then, you GOT the dog!

It helped me! So, thank-you!

So, what can we do?
Posted by kam (Member # 3410) on :
Sizzled and others I will go back and read the other posts. I tried reading them this am and couldn't take it all in.

IT is good to see the posts though.

RE: Rosie I still am hoping to be able to post a picture of her.

I recalled thinking about the possibility of a helpmate before I got sick. I was so busy. I wondered how I would make time for a relationship.

AFter I got sick...I realized God did send me a helpmate...Rosie. HA!

I also have been wanting to do a post to remind people to send Canine Support Teams their empty cartridges if possible. I know I am not there yet.

I have saved my cartridges but then ended up throwing them out because getting to the post office was not something I can usually do.

I am doing better and can do my own grocery shopping now for the most part. But, usually don't have strength left over the post office unless I can figure out a way to mail them from my own mail box in the apartment complex.

That is an idea I had not considered until now. That one will work.

At least my mine is beginning to think of things. I just need to figure out how to priortise the actions so I can balance things out some and still not over do it.

The turtle thing.
Posted by just don (Member # 1129) on :

I know how badly you hate phones,,,just like me,,,they are hard to handle these days arent they??

But you can always use your one help lifeline,,,, "phone a friend" ,,,, when the blues set in. There is "ONE" that is always happy to hear from you,,,even IF its a two minute 'quickee'.

See there is ALWAYS a way!!!

Nice to see Bruce Allen on here again too,,,been too long my TALL friend!!! Keep snuggling.

Ben Dare, Dun dat, being --just don--
Posted by kam (Member # 3410) on :
Chinchilla Guy...

I was able to go back and read your post.

I copied and pasted part of your post here too.

Today is one of those times when I need to find the things I can do and let go of the things I want to do but can not...and rest.

At least for this moment right now. Who knows...perhaps I will be able to get some of those things done this afternoon or evening.

I have a Standard Poodle as a service dog. I recall one morning when I really considered not getting up any more mornings.

A rare way for me to think and feel.

Rosie came into my room and jumped up on my bed with her favorite toy in her mouth and her tail wagging.

She doesn't usually do this. She usually sleeps next to me and waits for me to get up and move around before she gets up and starts to move around.

I looked at her and told her OK....I guess I can get up one more morning. The smallest of things can mean a lot.

Shortly after that I started having mornings when my body felt normal when I woke up.

Crying as I type this. Not sure why.

May all who read this please continue to fight this battle, know that there are many others walking this same road,

New advances are being made every day with medicine, and herbs, many have recovered half of there health back, and some ever more.

Find the things that we can do, and relish them, when to exhausted to do anything, listen to soothing music, pray, find something to fill the
time, and to keep away from negitive thoughts.

I find that meditating on bible verses and prayer have helped me more
than I can find words to explain with.
Posted by AZURE WISH (Member # 804) on :
Hi Kam,

Sorry things are still so rough for you.

I got sick in 1987 (when I was 10).... and disabled in 2000...

I tried explaining to someone that things changing and inconsistancy doesnt bother me and I dont find it odd...

Because for the past 19 and a half years I consistantly had the inconsistancy of this disease.

I can tell you the things that make my lyme worse.

- Not enough sleep

- Not enough rest (over doing it)

- Stress

- Being around sick people

(yep thats where my immune system is at right now ... exposure to contagious illness makes my lyme symtpoms considerabley worse)

- Not eating meat

(I just know my body and if I dont eat meat I feel so much more tired)

Things that help..

- Supportive people (the toxic people got to go)

- Animals

(they love you no matter what.. and they NEVER judge or blame)

- Hold on to hope

(I personally believe that hope heals)

- Art

(Even though I can still hardly ever work on it.
And in a broader sense if you can do something for you that is about who you are and what you love....

whatever is in your capabilities even if it is only once and awhile for a very short period of time.

I am sure you know when lyme gets bad it infringes on our sense of self and our identities...

And even doing little things that reaffirm who we are

I think is very impowering and a strike against this disease and all it has taken)

This is just how I have coped and what I have observed during my battle with this disease..

Hang in there...

One day you and I will both have come all the way through this and be able to really live life again. [group hug]
Posted by bettyg (Member # 6147) on :
[group hug] [kiss] [group hug] [kiss] [group hug]
kam, feeling so bad that things are so bad for you and they've gotten you down! you're not alone and just remember that our dear friend.

thoughts and prayers headed your way; no time limit! [Wink]
Posted by kam (Member # 3410) on :
Azure Wish,

Good points on getting to know what helps and what does not help and getting to know yourself enough to know. Does that make sense?

Most of the time I do OK. But, there was a time after the computer broke down and the power chair broke down that I was not my usual self...not that my usual self is normal.

I also started on lunesta and wondered if that was part of it.

It scared me. If it happens again, I need to have some tools in my box to deal with it...besides focusing on...knowing why others have ended it.

I don't know what their reasons were. I just know the chemistry in my brain was not the same and I was not the same.

As Dr. Amen says...when your brain works work right.
Posted by Bruceallan (Member # 9317) on :
Glad to hear you have a pet, they sure do help!!!

I said the same comment in another thread the other day then today as i am checking in,

I see it is this thread I needed to reply to you in, opps, yet another lyme inspired Brain fart!

Later Bruce (chinchilla guy)
Posted by hopeful123 (Member # 3244) on :
hang in there!! it does get better. promise.

[spinning smile]

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