posted
ok, I know I don't post on here much and tend to only post when I am totally desperate, but truth is I feel like I'm totally desperate all the time and a lot of the times too sick to come on here and I don't know how to help any one else right now because I can't help myself.
I have been put in touch w/a few people in my area on the phone but they are no longer as sick as me and have families and don't want to talk too much, I don't blame them at all for not wanting to talk and the only support group will not contact me back. I am going to try a priest or something to try and bring God into my life.
I do want to die but do not have the guts to do it, if someone would help me w/an assisted suicide, I would do it. Because I've had depression all my life, primary depression before all this, but I have helped myself through the years get better, but now I'm back there again. I'm just numb, lots of times past crying , just numb, I don't care about anything because I can't figure this out.
I don't care about my family, friends, my cats. I don't care if any one else is suffering, even if I eat at this point, I have been crawling out of bed to swallow my meds and try to drink water and detox, but that is stopping, I feel like these meds are literally killing me.
I have a two cats one purebred from a breeder that I once loved, now I'm not even interested in caring for them, or feeding them, I can't even stand myself anymore, I had so much to offer the world as a nurse and it's all gone, I can't even help myself.
I'm 31, I'm supposed to be married or dating right now, supposed to have kids
I know everyone on here is going through hell, I'm just looking for the tiniest bit of reassurance that my one year treatment has not been for nothing and a little bit of an idea if I can do anything now.
I've been sick for 10 years started biaxin,ceftin,amanadine cycled w/flagyl and amanadine in dec 2011, added iv rocephin in march 2011 2g/5x/wk. in july i went to augmentin,mino,amandine cycled w/flagyl and amandine. still on the iv's.
also valtrex was added 2 months ago.
the whole time also i've been taking flucanazole, vit d 3, snythroid, was taking samento, burbur, and others.
I added mepron 5 weeks ago after convincing my doc. I had classic symtpms but two negative tests.
the iv's got rid of some numbness and brain fog, that's about it, I don't look at this as progress though because I am i sicker than ever.
I also had freezing cold hands that went away for a few months, now they're back along w/freezing cold legs, even in my place which is warm, these areas are freezing.
My body feels like it is turning to stone, I hurt from head to toe worse than ever, I can't bend my writst, bend at the waist, nothing. My shortness of breath was horrible today can't get a good breath in. I have a buzzing throughout whole body.
I have been detoxing regularly probably could do more, but I don't think this is all the problem.
I feel stuck, last time I was at my doctor's I waited almost 2 hours and was seen for 20 minutes, being so sick this was heartbreaking. The doctor I wanted to switch to basically told me today, he wouldn't really want to see me being I did so much w/this doc already.
So I was willing to switch because I felt that was the right thing to do, and I was so confident in this doc, so now I don't know what to do.
I don't know if I am worse and some symptoms are back because I started the mepron. So my question would be, do I lay off some of the other meds and go more aggressive after the Babesia?
I really can't afford these iv's anymore, and they have done minimal to nothing for me. 8 months straight of rocephin.
Or do I lay off some off all the meds?
Also last time at doc's didn't tell me when to come back, no lab work, someone as sick as me crying my eyes out, barely able to open eyes, even he said himself I'm one of the sickest patients.
I'm sorry for the long story, I just really can't take this anymore. I know no one can answer all my questions or tell me what exactly to do , but please maybe point me in some direction, is there any hope? I can't live the rest of my live like this, right?
Also even though these meds are making me so sick, I don't feel comfortable going totally off them.
Also honestly, I really don't mean to be going on like this, but getting this knowledge and experiences and expressing myself in any way is all that is getting me by right now.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Could it be one big herx for almost a year now I've been treating? I'm not exagerrating when I say I have not really gotten a break from severe symptoms almost a year now, I just have been trying to tough it out.
I know there are even sicker people than me out there, I'm just in such a dark place right now, and I can't get out.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Shannon: Sorry you are in such a bad place now. I think it may be time to take a break from meds. I do not believe you go back to square one when you take a break and then resume. Bb is slow-growing. A two-week break would allow your body to heal and detox.
There is something to be said for pulse-therapy - that's what I'm doing: 4days double-dose IV Rocephin followed by 3 days oral zith and fluconazole. Then after 4 weeks of this, I take a week off and resume.
I have been at this 4 1/2 years now. I do believe I am near the end of treatment. Most symptoms are resolving.
I do remember when I was at the year-and-a-half point I was feeling pretty good. Then I started Mepron and WHOAAAA - whole new level of herxing. Same thing when I started Alinia.
Yes, treatment is looooong and grueling, and expensive. Are you using InfuservAmerica for IV?
Please consider going on an antidepressant to help with your mood. In my case, Paxil has been a miracle-drug.
Try not to neglect your nutrition. I know when you are terribly depressed, you lose your appetite. If that is happening to you, it is time to seek professional help for your depression.
Please know that we are here for you. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm sorry you are going through this. You are not alone even though it feels like that. Alot of people are suffering - if that's any consolation... Maybe, maybe not.
I agree with paulieinct. Maybe take a break & stop your meds for a bit. If they aren't working - taking a break won't make things any worse. Just my opinion - I'm not a doctor.
Maybe you need to detox from the drugs for a bit? Maybe switch to an herbal protocol for a while & see how you feel...? I know it all sucks & I'm not trying to give you some platitude... but we never know what tomorrow will bring.
Take a break. Give yourself a rest & try to look at yourself from a distance. If you were an older friend or sister, what would you tell yourself? if you were your future self, what would you say to yourself?
I'm 50 but I sometimes think of myself at 20 or 30 & think what would I have said to myself in X, Y or Z situation. I wouldn't have been harsh - I would have had some compassion.
I hope this doesn't sound stupid. I can understand how you feel. I've been ill a long time. I'm not saying suicide is a bad answer. I don't believe it's bad. It's one way but there are other ways.
Sometimes we have to laugh at things in life, ourselves, the world, how screwed up things are... Maybe try focusing on other things? Stuff you like, moments you get some joy...
I don't know why we are here or why we have to suffer so much but I think there must be some reason. Try to do something that gives you some joy - even if it's just for a few moments.
Distraction can be helpful at times. Watch a good movie or comedy... Go out for a walk, smoke some pot or do something that you might not normally do like eat a fancy dessert or get a facial.
Iodine helped me to not feel freezing all of the time. It might be a thyroid issue - check with your doctor if you are on meds, though.
Sounds like you need a break. If you are in pain, maybe go to a pain management doctor? Chronic pain is not good. It can wear you out.
Hope everything works out.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
shannon12, I am sorry you are feeling so horrible. We understand how you feel. It is so hard to deal with being chronically ill and feeling worse during treatment.
I agree about taking a med break. Did you know that some people get depressed from taking Mepron? There is a post here called "Mepron Blues" at http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89042? Also, do a search using the words "Mepron Blues" and several posts will come up that you can read.
You said you started Mepron five weeks ago. You could very well be herxing, and this could definitely be adding to your feelings of despair. For me, Babs herxes are the worst.
Please make an appointment ASAP to talk to someone. These diseases and treatment can cause depression. Going through treatment is very difficult. It is good you are reaching out. Please know that you are not alone, and we understand how you feel.
Posts: 4681 | Registered: Oct 2000
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Shannon, If you're referring to your local support group that used to meet in Kingston I believe, the leader died a few months ago.
I think it fell apart before that due to most of the group being too ill to attend.
I agree with the others about the babs and thyroid. I know the doc you're talking about who you just talked to. About 1 1/2 years ago he wouldn't take me on as I was "too sick" for him to take.
Don't take it personally as he's past retirement age and is working part time. I felt total despair when he wouldn't accept me either. Another one in PA denied me the same week also for the same reason.
It takes a really strong person to get through each hour of this and as Sammi said, it is good you are reaching out.
And yes. You are not alone in your feelings.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Shannon, hang in there. Sammi mentioned about Mepron making you depressed. But I also know Flagyl does it too. So you have a double dose of medicine contributing to your mood.
Do you have a way to contact your LLMD? does he/she take email? I think you have expressed yourself very well here. And it is possible he/she will see your distress more clearly if it is written.
I think a medication break may be called for. that is a lot of medication for anyone to handle.
I want to say I totally understand about how important a sign of depression it is that you have no interest in your cats. When I was at my worst, I had very little left for my two dogs, who until I was sick were the lights of my life.
but they are also how I knew I was feeling better-- I could throw a ball and they made me smile.
I know all cats are not like dogs in this way... but do they come and sit with you on the couch or in bed? Just stroke them and listen to them purr... and look at their faces. I bet the love is still there, it just has to be on your terms for the time being.
31 is so young! You are one year down in your road to recovery. You may need to make some adjustments, perhaps appeal to this new doctor, but I cannot believe the year of treatment was for not.
Hang in. You are not alone.
Keeping you in my thoughts!
[ 10-25-2012, 02:40 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Shannon....
I am so sorry you are going through this. I feel your pain.
A few weeks ago, I posted about feeling suicidal. People here really helped me. The feeling left in a few days....think it was part of meds or herx.
I also feel like I am in a constant herx with no improvement. I am looking into other treatment options right now. So, don't give up!
We are all here for you!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
So sorry you are having sucha rough time. I know mepron did a number on me and I was really depressed. You should definitely let your doctor know how you are feeling.
Is there a close friend or family member you could reach out to? You said you are no longer interested in caring for or feeding your cats. If that is the case then I would encourage you to either give them to a friend temporarily or to a humane society. To not do so would not be right as they are after all innocent animals that depend on us for care.
You may need a break from your treatment with your meds, or perhaps a new LLMD if you feel you are not moving in a positive direction.
I know it really stinks to look around and feel that life is going on around you, but you will get better you just can't give up.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
thanks everyone , I really appreciate the comments. I din't take any meds so far today, I am so nauseated anyway, I can't. I have an app w/doc next thurs., they are closed on fridays's but unforturtanely don't respond to my calls or e-mails anyway.
I guess I just have to keep telling myself, I will get through this somehow.
pocono lyme-no it's the support group in tunchannack, they won't conntact me back, so I'm going to assume they don't meet any longer either.
And I know about the doc, just talking to him he seems like a really good person.
Paulie c- I've been seeing someone for depression since a child, but honestly they don't help much, I've yet to find an outstanding therapist, I did go back on my cymbalta as of last night. I use a pharmacy in my area that delivers the meds, they are just about the same price as infuse america. It's $125/wk for 2 grams rocephin 5x/week, that's w/no supplies or flushes w/it.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
sparkle-thanks for all your comments-actually my thryroid was one of the first indicators of lyme disease, I think, I just didn't know it at the time. I was in the er years ago w/heart palpaitions and stuff, my tsh was extremely high. I was on t3, then switched to synthroid and I'm on that, I do get it checked often, but it's possible it's out of whack again.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Kudzuslipper and Ellen-thank you..rereading my post , I'm crying to think that I could say that about my cats, I really do love them. They are w/me all the time, lately i just haven't given as much care as I used to, I do feed them and they have a clean environment, just don't have any interest in much lately.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Mepron made me really depressed (malarone is much better for me). Perhaps it is time to take a break in your meds. My doc took me of abx altogether and put me on malaorne and herbs (really improved my mood).
Drag a ribbon in front of your cats. You will smile when they chase it. Keep doing stuff like this to keep you going mentally. I'm sure your cats love you and are concerned about you. Our cats can always tell when I don't feel well (they look at me oddly). They are really good at reading energy.
Try to watch some funny shows on TV (helps cancer patients). And hang in there, you're not alone.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sounds like you're starting to pull through this one... It does get overwhelming at times.
I don't think I have a big thyroid issue but I did notice when I started taking iodine that my hands & feet got warmer. I take Magnascent Iodine - it's a special kind of iodine.
I'm no scientist but it does seem like a good product.
Hang in there. There's no easy answers to all of this. I think the thing that makes this so frustrating is that we get so little support from the media & the world in general for what we endure.
I'm glad there's Lymenet & the other message boards. Judging from what I see on-line... there are alot of us.
My cat's my good buddie, too. He's a tabby/bengal type. They can be a pain at times but they can be good company when you don't feel well.
Take care!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Hang in there. Maybe you should try some sam-e. Mepron gave me huge depression. Juicing, accupuncture, IR sauna. Gluta, NAC, probiotics, etc.
Take a break in meds is my suggestion.
Go talk to a priest or someone. Beleive me I feel your pain. I've lost 60 lbs in 1 year and the prominent lyme doctor...wasn't too helpful. He said that if my adrenals were shot he couldn't help me. So maybe try some kind of adrenal support too.
Hang in there
Posts: 699 | From CA | Registered: Dec 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
It does sound like you are coming out of it. . I think we've all been there. I think if we listen, our bodies tell us when we are taking too much.
Posts: 1728 | From USA | Registered: May 2011
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My heart goes out to you. I am not as sick as you are and haven't been as long as you have, but understand your feelings. I have felt the same way you have at times.
I have felt like you have about all the meds and have taken mini breaks from all meds, but stayed on herbals. It helps to take a break also to see if you were actually herxing or not. I have found that when I take a break from meds and notice the herxing has stopped that it gives me hope to press on.
Also, taking a break from meds help clear meds and toxins out of your system. It helps to detox your body.
Please do not think about suicide as an option and you do not need to go through a priest to have GOD in your life! He loves you and already knows what your going through. Ask God to help you get through it and He will. He knows the number of hairs on your head (Psalm 139)
Also, I would look into other LLMD's. For example, mine is in NY and I am in Ohio. There are plenty of good LLMD's that can work with you and will.
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Shannon. Just wanted to say hi. And see how you are doing today? Still thinking of you.
Posts: 1728 | From USA | Registered: May 2011
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hang in there. Someday you will feel better. Some of those meds you are on can make you feel really depressed and awful. You may need to switch protocols or meds or pulse them.
This disease is a living hell, but you can get better!
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
thank you everyone-I got a little better but now I'm pretty much right back there. I'm really trying. really.
betty1939-at this point I will go anywhere for a doc. I have an app. w/my current doc this thurs. It's so hard when you've been w/one for so long, and then trying to know if your switching to the right one or if it's going to be the wrong thing and just cost you more time.
But I'm not comfortable w/my current doc. at all.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Shannon - I haven't been sick as long as you, but I wanted to second, or third, the comments about Mepron. Mepron was really hard on me, and ultimately gave me depression. My LLMD took it really seriously, took me off of it immediately and got me in for an appt quickly. I'm really indignant on your behalf that you are not getting the same treatment.
He told me at that appointment that if I felt myself losing control of my actions, that would be a medical emergency. Thankfully, I didn't get to that point - actually the depression cleared within a day or two of stopping Mepron - but I felt strangely comforted knowing when it would be time to go to the ER instead of sitting there guessing.
So, your LLMD sounds less than ideal. Still, I know how daunting it can be to select a new doctor when you're not functioning well mentally or physically. One suggestion might be to find a Lyme-friendly integrative or functional MD as an adjunct to your LLMD for now and see what they have to say. Perhaps if you find a good one, they could weigh in on the LLMDS in your area. Is travelling an option at all?
Posts: 1737 | From Virginia | Registered: Aug 2011
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. I think we've all been there. I think if we listen, our bodies tell us when we are taking too much.
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