But why I'm writing is a really rude depression has settled in and I can't seem to find my way out, up, through... etc.

Just want to sleep and make it all go away. I've been fighting this thing for so long, although not as serious or as long as many others which leads me to berate myself to count the blessings I have. I'm just so tired (body and spirit).

So, here's a wee note, echoing down the long dark pipe, I'm here and don't see much point in continuing to go through more days of pain and limitations with my life getting smaller and smaller - most of the activities and friends I used to have are now a memory.

You could call your doctor and ask for something to help fight the depression - it is part of the disease, not your fault and you shouldn't have to suffer so.

Tricky thing for me is I've tried so many antidepressants and from skin rashes to hypermanic reactions to high blood pressure... well, nothing seemed to help much. But we're going to give it another try and maybe there's something new in the past couple of years that won't cause a neg. reaction for me.

Have been taking 5HTP, an over the counter one, but with so many supplements and now back on the Mepron/Zithro, I'm nervous about unknown drug reactions.

This is amusing: my partner picked up the Mepron for me. The pharmacist said "it sure if a bizarre yellow!" (He'd never actually had to see it before but needed extra because I'm doing it for 4 instead of the 3 weeks). And then said "no sense on me doing my pharmacist counselling, your wife knows more about the drug and it's side effects than I do". He's an awesome pharmacist. So great to have someone on my side in the system.

Saw Dr. M in B.C. on Saturday. I did tell him that it's been hard to keep my spirits up bec ause the pain is unrelenting -- even with really good pain meds that my local doc prescribes.

I've had chronic back pain (that I now swear is Lyme-related) so have been on the heavy duty meds for a long time. I look forward to weaning off of them, one day. But when it comes to a herx or just the all over pain this disease(s) present -- nothing touches it. Hope, as someone mentioned, is the operative. It's frightening to loose that grasp on hope.

Thank you, Ann, for taking the time to write. I'll see what curious new pill the doc chooses for the depression. This is so not who I am -- in the medical system, taking pills for this and that symptom. Went from teaching yoga and dance to difficulty walking in a few months. Now it's effecting my brain and that's the most terrifying part.

I found out that, as if we who suffer depression don't have it bad enough, Mepron can contribute to depression all by itself! GREAT....look at my recent post on medical questions about mepron and you'll see what I mean.

I hate mepron for this! (said like 3 year old having a tantrum)

Like so many of us, it feels like my life is slipping away, day by day and now month to year... this is just bloody h-e-double hockey sticks (haven't said that one since I was a kid).

Had a visit with my mom while in Canada and that was the main thing that tipped me over. Her anxiety and fears for me, while well meaning, were a burden that I can't carry. My being sick is making her sick, so to speak. And she's 81, chronic illness (which is so much like Lyme, it ain't funny) but not a hope in Hades she would ever get treatment. She pops back the 15mg prednisone a day and has for years for her "polymyalgia rheumatica". Just found out she has number reversal, too (I'll spare you the rest of the list -- looks like most of ours).

Now, I used to be a counselor and had years of counselling so have some awareness that her feelings are not my own (in regards to me "making" her sick). I know it on the intellectual level but it's just beginning to seem so much easier if I wasn't around on the mundane plane anymore to cause such pain and expense to everyone. That's where the depression has gotten and it feels like I've just bottomed out.

Dang. I'm really sorry to be whining, most of my (few) posts have been as upbeat as possible. I'm used to helping others but am having a hard time just taking care of myself.

She gave us her home phone number just in case and said to alert her right away if he needed something for depression.

No problems for the three months he was on it..... but she did stress to him that it could be a side-effect.

It is wonderful how everyone here reaches out/encourages and helps one another through the day/daze.

I hear ya. I am not normally a depressed person, at least I don't think I am. I was like a few weeks ago, I was pretty scared, just couldn't seem to see my way through it. It just felt like it was going on and on forever.

Then I had a break this weekend and it's funny when I feel better, I can't remember what it felt like at the time, but know that this time it was really bad. So I am getting concerned, i.e. not looking forward if this happens again. And I am not even on abx right now, waiting for tinadazole compound from Vancouver.

As from reading so... many other posts, there are many who are in the same boat.

I am going away this weekend to 100 Mile House to see daughter (her birthday and late mother's day time). I was away to Victoria 2 years ago for 2 days but b/c I was so ill, had to come home. Was in Ottawa 2 1/2 yrs ago for mother's funeral, was very ill that time too. Was home year before that to visit my mother, day I arrived was so sick, nursing home would not let me in, managed to see my mother all of 2 hours the morning I was leaving.

So even though I am dreading getting on a bus for 7 hrs, I am forcing myself to go. I am again sinking into a hole, where I only want to stick to a strict regimen, and see or meet people as little as possible.

StinkBug, you will feel better. I did, so I know it's possible. Oh, I did have a moment last Thursday of walking on air - no pain (or just a tad), head felt clear - was oh so wonderful. I thought I was in heaven. Then I made the mistake of drinking a big gulp of irish flavoured coffee by mistake, I am highly allergic/sensitive to artifical flavour (at least in coffee), and just tonight am coming out of the pain and fog caused by it.

Here's a big hug coming your way and to anyone else needing a hug.

And that your life, dreams and friends are all fading. That is the hardest part for me right now. I have been battling this since 1991, off and on ABX, both IV and oral. I can get years without symptoms, but I seem to always relapse, and this time it is just taking the life out of me. I was training for a triathlon when the symptoms began this past autumn. I can barely make it out of bed many days now.

It is so hard to watch people my own age just DOING things or being active or getting on with their lives. Mine is halted physically, emotionally and financially now.

And the friends I did have are just tired of asking me how I am because I am always sick. (thank godess I have a wonderfully loving partner who is completely understanding and helpful and sympathetic) And then there are those people who think that you have done something wrong and that is why you are sick. Like you have some deep emotional crap you need to work through and since you just are not strong enough to get through it, you now have a disease. I have lost so very many friends to this type of thinking. It is hard not to doubt yourself and think...am I making myself sick? Is there a deeper motivation here?

A good book about this type of struggle we are having is called
"Sick and Tired of Feeling Sick and Tired"
by two PhD people, cant remember their names.
It has Lyme as one of the "invisible" diseases and has helped me deal with this chronic illness. ( I have 3 of the illnesses in the book even though I seem and used to think of myself as a healthy young woman)

I am sorry you are here.
My heart goes out to everyone.
thanks for listening.
there is a lot more where that came from.

When it's an accident or some kind of more widely known illness, then the person isn't blamed. Except with cancer - I know many who had the subtle "what did you do to bring this on?" kind of stuff.

The "who am I now?" isn't a sick person but it filters every single day and how I can or cannot do things. Gets pretty boring to hear myself struggle, too.

Just finished reading Coping with Lyme Disease and really enjoyed the author's style. But one little niggling thing bothered me - a lot. Was a helpful list of things to do to cope, all well fine and good. But it suggested doing good deeds/things for other people because it helps take one's mind off of one's problems. Well, yes, of course. But it broke me down to tears because that is one area I'm not able to function now - a deep passion of mine in educating others with cat health and my mind isn't working clearly enough to write like I normally can. Except these stream of conciousness things.

So, one of the parts of who I am, helping others, has been greatly compromised. I'm being urged to be selfish, take care of self first (but those who are close and loving) and that's a hard thing to do.

I think the saddest part of this disease is that it seems to get outdoor people who are active--or use to be.

The other day I had a GOOD day. I felt GOOD! I told my husband--"I feel so GOOD! and that good feeling is what is normal for everyone else in the world."

So hopefully when I start to have more than one good day at a time--I will appreciate it.

So hopefully i will get to be that woman I use to again, biking, hiking, and swimming. Only this time I'll have a lot more depth and a lot more appreciation for the good days.

Hope your feeling better soon.

This will make you laugh........ I am looking forward to getting my Dr prescribe Mepron and Zith!!!

Can you imagine? Well at least I've been warned.

quote:

---

Originally posted by StinkBug:
Hi All,
Just sending up a flag. Am beginning another round with Mepron/Zithro for the babesia and that's ok... thank gawd the insurance is covering it... for now.

But why I'm writing is a really rude depression has settled in and I can't seem to find my way out, up, through... etc.

Just want to sleep and make it all go away. I've been fighting this thing for so long, although not as serious or as long as many others which leads me to berate myself to count the blessings I have. I'm just so tired (body and spirit).

So, here's a wee note, echoing down the long dark pipe, I'm here and don't see much point in continuing to go through more days of pain and limitations with my life getting smaller and smaller - most of the activities and friends I used to have are now a memory.

If anyone hears and wants to send a hello down that pipe, please do. It's lonely here.
StinkBug

---

Anyhoo... here I sit after my initial post and feeling well-ish. Went to a Pagan campout and danced and had fun!!!! nothing I would have dreamed about a few weeks possible before.

Am on Mepron and Zithro and I guess it's working.

Worked with the on-site medics and 3 ticks (that I knew of) were removed from people there. 2 sit, dead, in my fridge, deciding whether to send them to IgeneX but if it costs $50 for me to send them... then I can't

Anyhoo... here I am, on the other side. It wasn't a herx (since I was on no treatment during the time of the post of this thread).
So, I contine with the above and have Rx for ketek and something else, have to check. After I finish the current babs treatment.

Upon returning from the campout, I learned my Mom is now in the hospital. I'm trying hard not to say "I sent her there" (she's 81 with multiple health issues). My older brother is there and it's her heart now... so will report back in for support soon if it looks more dire.

Gotta giggle like get-out at THAT name! HA!

You have already "helped others" cause you have made ME laugh at several of your posts tonight.. my first night back on board!

You may not THINK you can help others now.. and maybe you can't help the way you use to do.. but you CAN help in other ways.. and the proof is right here. See my grin..

You said.. "It really helped to hear I'm not such a freak..."

Sorry to inform you of this.. but SOMEONE has to be brave and say it straight.

Chances are you ARE a freak, you little stinkbug you.

But if it makes you feel better to say you aren't.. all of us will back you up and play along. Kinda like we do with Lymetutu. You know.. old droopy drawers? She goes around here showing her bee-hind to everyone.. all the time. All the DARN time. Such a freak she is.. but we DO love her anyhow... and I guess if we can love her.. we can love an old freaky stinkbug too.

Now.. to help make it through the yulky times... try this.

Get a good clear picture in your mind of a day when you DID feel good after starting treatment. Picture what you felt like and what you did that day. Hold onto that picture and bring it back into your mind often.

REMEMBER.. that day WILL return. It really will. It just seems like it won't when you are funky and grumpy.. and it feels like we are stuck in the rotten mode and will never improve. But we do.

And here is something else to try.. besides painting all your toe nails different colors.

Take your right hand and place it over your head and just above your left ear.

GENTLY do a slow stretch by pulling your head carefully to the right with your hand in place above your ear. Hold the stretch for 25-30 seconds or so and then gently release the hold. You should feel the muscles release as you do this and feel yourself relax a bit.

Sounds kinda hokey I know.. but it seems to help me for some strange reason. I don't know if it is the fact the pressure on the spine and neck is slacked up.. or some of the ventricles in the brain open back up and allow the brain to function better. Whatever the reason.. I don't care. It seems to help so I do it.

You said.. "It wasn't a herx (since I was on no treatment during the time of the post of this thread)."

Not to doubt you.. and I don't know all the situation or facts, of course.. but often folks don't realize this....

For example.. On Mepron.. often folks herx on the 4th day and again near the 30th day.. and then in cycles.

If you take Mepron for 3 weeks and stop... you will still have the expected herx at day 30.. even if you have stopped the meds. Stopping the meds does not automatically stop the herx that was being led up to at the time.

Did that make sense?

Often folks stop their meds and think a week or so later they are relapsing really bad cause they suddenly get much worse without being on meds... when in fact it is one of "those" herxes I just described.

Also.. meds like zithromax have a long life in the body. I have seen folks have an allergic reaction to zithromax 10 days after stopping it because it has a long lasting effect in the body.

So even if you stop meds such as zithro.. you can stil have the drug working to do its intended "thing" and you can still.. out of the blue.. have a herx.

Ok.. just somethings to consider. Gotta go to bed and get my much needed sleep. Hoping there are no snakes in there.. and I will sleep tight tonight.

Take care of you.

I'm on 1500 mg of Amoxicillin a day, am trying to reduce my Lexapro (antidepressant), pschiatrist has put me on Ativan and and Topamax.

I like you would just like to go to bed and sleep. I promised my nephew i would take him to the farm this weekend with me, and i am not up to it, and want to tell his folks that i cant.

I'm not taking my meds correctly, and know i need help but asked my husband to help but he is in his own world of denial and depression. My mother who lives only 5 minutes away who i love very dearly is a retired nurse, but very condescending towards me. She feels that if i just go to church, exercise, quit smoking (yep i havent kicked that habit yet, and i know i have to, but that seems to be my only friends nowadays, i now it's not a friend).

Do i feel insane, yep.Do I want to go to a health facility that treats both lyme and psychiatric problems, yep, but darn there isnt one out there.

Do I think about death, yep. Did i think about death 4 months ago, when they took me to the looney bin cause i had a big die off in my brain, yep. Did they let my psychiatrist know, nope. When i went to him this past week, was he compassionate when i told him i had been on the 7th floor ward, nope, he just said, better be glad you werent on the 2 floor, they are really nuts there.

Am i contemplating not sending this post becasue it just sounds too dreary for anyone to read, yep.
Am i going to, i dont know yet.
I will however go take my meds. cause it is time to, and i was up until 4 this morning cause couldnt sleep and try to take a nap, but first i have to get some lawyer and workers comp. papers together becasue that is another issue to deal with and that too is depressing.

I am sorry this sounds all too depressing and i wish to send you some smiles. It is a quick and silly poem i wrote last night.
It will follow, but one other little i told my daughter when she was in Iraq...go to a mirror, put your arms around you as tight as you can, way back. Now turn around and look in the mirror, this is me, hugging you.
Lemonhead [email protected]

Heres the poem...
If vaginal cream goes on your toothbrush you may have Lymes,
If you pass your street 3 times you may have Lymes,
If you call your dog your spouse, and can't recognize your house,
If you type your name backwards you may have Lymes.

If you lose 50 pounds for no reason, you may have Lymes,
or if you find 50 pounds for no reason, you may have Lymes,
If your taste buds are all but gone, and you keep smelling something wrong,
If your favorite food tastes like mud, you may have Lymes.

If your mind doesn't recognize your feet, you may Lymes,
If you're swaying to and fro, you may have Lymes,
If there's an electrical zap in your head, and you feel like you drank a keg,
If you walk into the walls, you may have Lymes.

If your associates say ``You Look Great, you don't have L(i)ymes.''
But you're feeling like a sourpuss cause you do have Lymes,
So you thank them ever so nicely, and back off cause it's likely,
That you'll tell them what it's really like to have Lymes.

You hang in there okay. I know what you mean about some friends are just memories. A lot of people I thought were my friends were not and the ones that truly were are still around.

I'm with you at the moment. I had to deal with my daughters teacher at school who was so awful and a b****. My stress level was through the roof and I needed something at the time but some who muddled thorugh it. If it happens again, I'm calling the doc ASAP instead of suffering.

This treatment isn't easy and sometimes I get so down. What does 5HTP do...stress reducer?

It will get better and you'll get through this I promise.

I miss all the wonderful fun activiites I used to participate in...especially skiing.

Email me anytime if you want to vent or talk...Were hear for you!

I was doing better when I first posted and then leveled... was honoured by the love and inspriration that helped others to help tell their own journey.

Things are rather stinky again... and for a StinkBug, that's not great.

Am hanging on to inspirational thoughts/actions etc.

The annual dance retreat I go to where I am head kitchen organizer... well, am not able to go and am sitting home while my spousal unit manages the job, and well at that. Once again, I am unable to participate in something I love and help out in the things that give me life and help others. I feel very alone.

I know I'm not alone, really. And to be human is to feel alone at times in the midst of a crowd. I'm blessed with a partner (also a Lymie but in remission) who understands... as much as he can, and listens and shares his own feelings. Ain't that a blessing eh? He's never felt lonely though. He has an interesting job, friends connected with his work - which is a passion, and family who live near by. I'm Canadian but living in the US and, thus, far away. My Mother is actually in the hospital again and not doing well. And after our last (recent) visit... not good for her nor I for me to be with her. Her 81st bday is the 4th of June. All kinds of "bad selfish daughter" bells are going off.

Am seeing little miracles in Nature all around me and those simple and mysterious things keep me going.

I wish it were as relatively simple as taking a pill to adjust the serotonin level in my brain to manange the depression that comes with chronic illness. Have tried them all - allergic reactions to strong intolerance... so that is not an option. In this thread, I tried zoloft, out of a sense of responsibility to others that I'm doing everything possible. But I couldn't tolerate that, either.

Odd... I can stomach oral ABX till the cows come home (with their acidophlius complex in tow)... but not those. So, it's not for me but I know it's a blessing for others.

Feeling blue, down, hopeless, the whole can o' worms, is NORMAL when physically challenged like this for months and then years on end. That's where spirituality comes in and helps give hope... just wish I could read more and not fall asleep in the first few paragraphs.

But I have strong spiritual roots and that aids in sustaining me. (Am Pagan/Wiccan and used to be a community leader... once upon a time).

Anyways, enough of this particular ramble. I edited my original post (of this date) and basically rewrote the whole thing. I wasn't making much sense in the first draft.

Be well my friends. I'd like to hear from others how this disease(s) have changed how you are.... who were you before, who are you now? And, who are we wishing to become?

Yours,
StinkBug -- belly dancing as she's able, in Colton, Oregon, USA

it's late, and i am very tired now, so will have more to say tommarrow or later.

i was resistant to taking an anti-depressent. one, because that is what drs were implying was my only problem when i was at death's door. and i am not a depressive type person. but these were UPENN drs. antideppressants are where the money is.

but lyme does cause abnormal stuff in the brain that leads to depression. and the abuse i got from the UPENN drs certainly did cause depression! if they helped me and treated aggressively, i would have remainded strong. but what it does to your life, or what used to be your life, and the damage from the ducks with med degrees! i take wellbutrin. it does help me a bit. lexapro is another that a lot of people like.

as for pain, i finnally , when i got myself to a llmd , got some real treatment for that. i have a fentinyl patch. i know it is a high dose (there are lower doses than what i am on) drug similar to morphine, but, it does not make me high at all. doesn't even take all the pain away. but it does make me able to function a little bit better. don't be afraid of strong drugs if you need them (as long as you are seeing a competant dr). i was. but the pain is horrific!

Yours,
StinkBug

Thanks Caryn,
It was a nickname from a gal pal who used to say I attracted the opposite sex like some kind of bug... so it became StinkBug. However, it has a whole new meaning now.

Thank you for sharing what you're going through, it's appreciated.

Gotta question:
UPENN? what does that mean? University of Pennsylvania? (excuse me if I spell it wrong, I'm Canadian... if that counts for anything *grin*)

Sounds like the docs there were less than helpful.

Funny tidbit... my usual doc didn't believe we "had ticks in Oregon" [insert your own area here -- since I know it's far too common]. Anyhoo, his office manager, side kick and head nurse's mother had Lyme and I thought that interesting. She got it last year (a year after me not counting prior probably infections).

While I have empathy for the nurse's mom, of course, part of me was going "yes! you big cheese weenie... deal with Lyme, read a few papers.... it's coming to a tick (and patient) near you".