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» LymeNet Flash » Questions and Discussion » General Support » Feeling like going to die often? Anyone else with lyme get this?!

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Author Topic: Feeling like going to die often? Anyone else with lyme get this?!
disturbedme
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I have been asking around because sometimes I wonder if I'm the only one (or a very few of us) with lyme that feels like I'm going to die a lot? Sometimes daily. Sometimes I feel like it'll be my last night. It's extremely frightening and so hard to explain. [Frown]

I could just be sitting there and just feel like I'm either going to lose consciousness or just die, this could go on all night.

I feel really weird, having something that feels like shortness of breath, but don't think it is. My heart feels like it's acting funny, not palps, but it just feels weird inside my chest... my stomach starts burning and then the burning rises (must be a type of acid reflux, maybe). And I just feel very faint, out of it, feeling like I'm going to lose consciousness continuously.

I'd attribute this to my low blood pressure, but there are days when I have the same numbers or even lower and feel "good" or fine compared to these bad days.

I really have no idea what is causing the "feeling like I'm going to die" feeling, but it is very scary and when I ask around, it doesn't seem like many other people with lyme experience it????

Anyone here know what I'm talking about at all?

I mean, having lyme with the muscle aches and fatigue and usual joint pain is awful, but having THAT on top of pretty much every other symptom of lyme listed in the books PLUS feeling like you're going to die on top of all that is just crazy and ridiculous and beyond terrifying. [shake]

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
karenl
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You are not the only one. My life is exactly the same. No idea if this is lyme or CF or co-infections. Do you also have low vitamin D?
I know how you feel,you always think you are falling on the floor the next minute.

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disturbedme
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I do have low vitamin D, but I don't think that is the cause.

I am sorry you have to deal with this too. It's so very scary.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
feelfit
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Almost everyday. Just keep plugging along. Always surprised when I open my eyes in the a.m. or afternoon. Sorry that you feel this way DM. and karen....it isn't fun.
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Toppers
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yes you are not alone I have this too, it's definitely gone down with treatment. It is the most panicky, hopeless thing I've ever experienced and have only known since my exposure to these fantastic tick friends of ours.
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robin_wachs
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Everyday! It is horrible to live like this, feeling these feelings of chest pressure, pain, lightheadness, like my body could just give out any moment.

I like to describe it to people like this, on my best days it feels like the worst flu you've ever had, and on the worst days it feels like I am going to die, all day long, but it seems to come most in the morning and at night.

Many times I try to just carry on because my 10 year history with Lyme et al has shown that I am not going to die, just feel like it.

You are not alone.

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Ocean
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Every Lyme patient I have spoken to has had this. I've had it for years at a time. Sometimes it would be worse at night. I would be afraid to go to sleep because I just 'knew' that I wasn't going to wake up.

It is not a panic attack, it is different. I think because Lyme screws up the neurotransmitters and attacks so many body parts, the body naturally feels that way.

Hang in there, I think it is a 'normal' feeling with Lyme. Not pleasant by any means, but a false notion generally.

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Topaz
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It's awful, isn't it?

A few months back during a really rough patch, I called my significant other at work and told him, "I'm dying. I think I'm going to die."

He ended up having to leave work and come home to take care of me.

I've got a high tolerance for pain and/or discomfort and I've NEVER said anything like that before. Not during childbirth, illness...never.

Lately I've been having rushes of panic where I feel like I'm going to die or jump out of my skin. This is a totally new feeling to me as well.

Hang in there. I'm sure the feeling will pass. And know that you are not alone.

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CherylSue
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Yeah, I think everyone who has Lyme has had lengthy bouts of this. It always amazes me that I have survived and sometimes have reached the semblance of a normal life before I relapse again.

Right now I have a bad cold I caught at work and feel miserable. I've been off since Wednesday and hoping I can back to work Tuesday. Who knows with this DD?

This too shall pass.

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nenet
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I had this constantly for a long time until about 1 year into treatment it really started to let off. Now it is very very rare.

I agree, it WAS/IS terrible. However it did provide me with a great scoring system to determine if I am improving. Not feeling like I am about to die every day? BIG improvement.

--------------------
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"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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LymedOut
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Yes, I have this too. I just posted something similiar in another thread. It is worse for me at night but every once and a while, I feel like that all day long. It's a horrible feeling that I don't wish upon anyone.

--------------------
The advice I give, should not be considered medical advice. My opinion comes from years of research and experience.

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soleil16
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Agree with nenet, this is a good way to measure improvement. Instead of every hour, it's only half the day for me now.

I've told my husband before- I think I'm dying- and he thought I WANT to die. But it's different- I do not want to die- but I feel so so sick, like this is eating away at my body from the inside out, and I am amazed every day that I've made it this long.

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cactus
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This really hits home with me, too.

Nenet has a good point - it is an excellent scoring system, if you keep track of it.

I remember so many days of being sure that I would die, but it seemed so crazy to articulate it - that mostly I kept silent about it.

I am glad there is discussion about this now, and wish there had been more when I felt this way daily.

It's a different feeling from *wanting* to die.

And it's almost purely physical - I was never a morbid person, nor am I now - but when your body is sending these horrendous signals, what else can one think?

I rarely feel that way now, too.

Of course, even one episode of feeling that way is too often.

Hang in there. It does get better.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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sapphire101
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Yes, I used to have this a lot but not anymore so it does get better. Twenty years ago I had a dr that thought I was going to die. She had hubby bring the kids and everything. I fooled her though. LOL

This was way before my lyme dx. She had no idea what was wrong with me and called it "Connie Disease". Finally just decided there really wasn't anything wrong with me even though she thought I was a goner. Makes sense, huh?

Sorry you all are going through this but keep in mind it will get better with treatment.

Connie

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Stacyb
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Yes I had that and Bart tx made it go away.
For me it is definitely Bart that brings
it out. I know because after it went away
with 8 months Rifampin /Zith it was gone.
When I went off Bart tx it came back.

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Need Lots of Help
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Yes, I feel like I am going to die on a daily basis. I am so tired that I feel like I just don't have the energy to wake up, then how am I actually supposed to get up and do something? Everything seems so hard and such a struggle to get done.

I truly feel like I am just going to fall down, like I will just be to tired to get up and just lay in the floor (awake) and just die. It is like a bad nightmare where you have grand ideas of doing lots of fun things the next day and then you make it through a shower and have to ridicule yourself wondering why you thought you could go grocery shopping, or even pick up the kids.

It is horrible because "other people" think you want to die, or that you are lazy or that you don't care about yourself, your house, or your family. If I wanted to die, I wouldn't want to do all the things I want to do for myself and them.

I really hope I can get better. I have been in treatment for 1 year this month.

Shalome

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LisaS
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Yes I have this too. Only the difference is sometimes I just want to now after 18 years of this. That's when I know I'm at my worst.

But I have learned to think, I have gotten through this before and it will pass. On my functional lyme days I DONT want to die and am scared of it.

But then on the really bad days, with all those crazy weird feelings that I can't explain, I just think, enough is enough, I can't do this anymore.

I would never ever consider suicide but I have prayed for God to take me. That I feel like a burden to my family and just have no life anymore and am tired of just laying here watching everyone else live theirs.

Especially when those weird symptoms start. I feel like I'm not breathing right, my muscles in my back and under my ribs get tight and get weird spasms. I get restless legs, not just in my legs but in my stomach too.

Then the worst is the head stuff, the vibrations, the pressure, my jaw muscles get tight and feel weird, and my right eye won't focus. I feel like I did once before I had a seizure or like I'm going to faint, but it seems like I stay in that mode, like I'm going to faint, but then I don't. I jsut wonder how my body can keep going when I feel like this.

It's all so frustrating. All I can say is hang in there, take one moment at a time. I always say five minutes, if I can get through this next five minutes. Keep coming here and talking to others with this disease. That kept me gong many times and I hope it will work for you.

[group hug]

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disturbedme
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I know it does get better, because I have had much better days/months. I've been treating for two years. I was doing so much better, but seem to be going back downhill and I have no idea why or what to do about it. It scares me badly.

And the feeling like I am going to die thing is definitely not anxiety. I don't want to die and I pray constantly that I won't die because I feel like I have way too much to live for. I do not want to leave my husband. We just got married three years ago and he's my entire life.

I am just so sick of having to be scared that I'm not going to live much longer, especially since I've had better days and they don't seem to be coming around much at all anymore. [Frown]

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

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Fordace
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I've been sick now for only 3 years, I get these feelings a few times a week. I think that I could die at any moment. I hope this is not the case. I hope we will all get a miracle answer soon....Hang in there people.....
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daphnesmom
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Me too. I have had this...not so much lately but when I was first sick, I really thought I was dying.

I told my husband I knew I was going to die, and actually explained how I wanted my funeral, cremation, and scattering of ashes to be handled!!

It's a terrible feeling; completely out of control. Very scarey, but as others have said it does get better.

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phyl6648
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Oh, I feel this way so often, mainly because I can't take the antibiotics for now. They did a number on my esoph. So have to wait for that to heal. just when I think I can take my meds and supplements and start then the esoph. gets really bad.. I am at a lost and I told my husband last night I wouldn't last much longer..

Its a horrible feeling but when you feel so bad and depressed/anxious how do you keep from feeling this way..

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Hambone
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I have felt like I was dying for years now.

So much so, that I became fascinated with near death experience stories and reading everything I can about what happens when you die.

I need to know what's going to happen.

Everytime that program called, "I Survived:Beyond and Back" comes on, I am glued to it because I want to hear their stories of the afterlife.

Morbid, I know. But I truly feel I am leaving soon and want to know all about it before I get there. What to expect.


( I also wrote out my funeral/burial wishes. This is how bad it is. )

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phyl6648
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Oh, Hambone want you to know you are not alone. It scares me so but what do we do? You are being treated so I feel you will be okay.. Me no treatment and my age I get so scared.. Would love to hear from you.. pm when you can.

phyl

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Beagle
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phyl & all,

I also feel like I'm just waiting to die. I think it's cuz our bodies don't work any longer. I always say I wish I had some fatal disease instead of this cuz at least there would be an end to it! Do you guys have fever? That's what bugs me most, so head sick, muscles don't hold me up so cooking is out of the question, yet never have a fever. Feel like I do, but don't. So I figure Im going to die cuz can't live when you can hardly take care of yourself. But only been treated with Doxy for two + months & keep hoping for a miracle when i finally see an LLmd or in my case it's a LLNP. Phyl, I think you gotta see an LLMD. I really cannot afford to do this either, but I figure it's do or die. worst case scenerio you charge up way too much money and end up in bankruptsy court, but what else can you do if your too sick to function?

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phyl6648
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Beagle, I never have a fever my temp. is always sub normal. I would see a LLMD but can't locate one. I have called all the ones I know to call. They are over 5 hrs away and one wanted $150.00 just to make an appointment then 3 thousand on first visit. To me that sends up a red flag.

The others the cheapest visit , if I could make the trip would be a thousand dollars. I can't see why they won't take insurance or not charge so much.

Then I read of all those that have seen LLMD take the meds/treatments for years and still sick.

I am at a loss. I do have 3 months of doxy to take and know the PA that I saw would continue the antibiotics but that is about all she know to do..Can't do that till I get my esoph. healed.

Do you feel better since taking the doxy?

Thanks,
phyl

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Tracy9
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Ashley,
I think you are dealing with anxiety. I know you have been struggling with this with years now and I would highly recommend an antidepressant, like Paxil. There is no reason for you to have to live with such fear, which is what anxiety is. What you have falls exactly into the diagnosis of a phobia,and dying is a very common one. Except you have a really good reason to feel that way, but it has long since crossed the line of what is "normal." Once it interferes with your quality of life the way it does, it becomes classified as a phobia, or anxiety. Antidepressants are indicated and can greatly increase your quality of life and general feeling of wellbeing. You might be amazed at how much better you feel. But you might have to try more than one antidepressant and different doses to find the right one.

Any fear that steps over the line to interfering with our lives to that degree IS anxiety. And when it is focused on one area, it's a phobia. Again, it's for a good reason, but that doesn't mean our brains don't still go on overdrive with it.

I really hope you will check into getting some help around this, because I've known you for years and I know how much you suffer with this.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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laurie sm
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OMG Before I was dignosed back in 2007 I definitely thought I was dying. I would cry hysterically because I didn't want to die and leave my family behind,especially my 2 teenage daughters!

Throughout the last 3 plus years I have had days where I am so glad i am alive and I enjoy life more because of all the Lyme symptoms and treatment I have endured.

But then there are days where I just say to myself-I just can't DO this anymore. I don't want to live this way.

But I just continue to endure and try to stay positive. I WILL feel better than I do now-some day.

BUT-the other day I suddenly started to think that I am going to die young. I am never going to enjoy grandchildren,etc. and I got so sad!

This disease is brutal!

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kimmie
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I get this way too often. It is worse when I am herxing.

I cry to my husband that I am sorry all our dreams have come to an end. I have written goodbye letters and typed up my will.

We can go out to dinner and see another couple. I will start to cry to my husband and say I am sorry that I will be leaving him early. I have told him to re-marry when I am gone.

I think the mental aspect of the disease is probably the worst part. I NEVER had anxiety or depression before lyme. One day I can be happy and smiling and the very next day doom and gloom.

It really is a terrible feeling. I cry to my children and just hug them. I have never been so needy before in my life!

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laurie sm
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Kimmie-How long have you been in treatment? I see you registered just last year.

It takes a long time and a good doctor to feel better. I have had better days but have been having a hard time lately.

I understand completely how you feel but please don't give up hope!

Laurie

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chiquita incognita
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....PHEW!!!
I am so glad I am not alone! Far from it.
My doctor was playfully assuring me that all was okay, trying to distract me from the wild symptoms. He then said to me: "I can't convince you that you are not dying. You are there lying and perceiving every symptom, and thinking it's a metastasis, or something like that". (This was my primary care doc, not my lyme specialist. So he may not be as familiar with all the ins and outs of herx symptoms as a specialist would be).

Well after reading this, I feel so validated and so much more hope. Thank you. It truly is good to know that we are not alone.

Do you know, I never once had this feeling----not to this extent----when I was doing physician prescribed herbs (also formulated by a naturopathic physician) in absence of any antibiotics. I would have herx's yes, but they were much more mild and less scary. Further, I made so much good progress, in only six months! It was when I started the antibiotic (Bactrim) that the symptoms roared in good earnest. And I am still recovering. Feeling like I was dangerously close to passing out, just fading into the clouds and becoming a non-entity on legs that I somehow could still move and control. Wild palpitations and some chest pains, worse than I had ever had before. Dizziness is an understatement. And I could only stay awake about 20 minutes at a time, while lying in bed, too tired to get up!

My primary care doc suggested I ask the lyme specialist about doing a different antibiotic and why did I need to switch to the drugs anyway if the herbs had worked so well for me? My lyme doc had said that the herbs did work really well for a certain cluster of symptoms, but after a certain point we also needed to go deeper and to tackle certain other things that the herbs did not seem to be touching.

Let me suggest that to look at the pharmacy's handouts about drug side-effects is terribly, terribly important. I am so mad at these darned pharmaceutical companies, the nerve of them to call certain things "side effects". Organ damage is more like it! Well, it's up to your doctor to decide if your symptoms are herx's or if they are in fact drug so-called "Side effects". RRrrrg....I would suggest you read up and ask your doctor about this, just to be sure. Note that reading may scare you though and that's the downside of it. But it is very important information to know. Keep in mind that not everybody has side effects and if they do, they may be in certain medical categories or cross-sectors. Ask your doctor about the likelihood in your own unique case.

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Elaine G
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Being sick for 13 years, I have felt this way so many times. I really thought I was dying.

I can tell you with good treatment that feeling goes away and health comes back.

Treating Lyme, Bart and Babs for 19 months and I don't feel that way anymore. There is a "health" light at the end of the tunnel with good treatment.

Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
phyl6648
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Elaine, would you please share some of your good treatment. This is so encouraging..

Tks,
Phyl

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Lymetoo
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Chiquita... Someone posted in Medical Questions yesterday about Bactrim causing "serum sickness".. It's important to know about the drugs you are taking.

--------------------
--Lymetutu--
Opinions, not medical advice!

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one4islands
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Wow-thanks for posting this. About 6 months ago I experienced this feeling quite often.

Only at night, but I'd have this feeling of doom over me as if I was going to die.

I thought it was a panick attack, though I've never had one.

It would make me have chest pain and my heart feel heavy with SOB as if I'd die if I fell asleep.

I hated this feeling. It was frightening.

I never told my dr. because I didn't even know how to describe it.

I would tell my husband, but I don't think he understood-who could?

I feel better hearing from others.

I haven't had this feeling in many months and I am so grateful for that.

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Elaine G
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Phyl,
I attribute getting better to my doctor and following his treatment plan for me. I still have a way to go but the improvement is remarkable.

It is not a one size fits all treatment. What is working for me, may not work for others.

My opinion is that if it is to work, high doses and longer term on medication.

It can be beat as several on this forum have proven.

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chiquita incognita
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Hi Lymetutu (love the name and the funny cartoon! Thanks for the humor). I really appreciated your posting to me about bactrim. For my sake and others here who may be interested, can you refer me to the exact post about bactrim + serum sickness? I couldn't find it when looking on the forum. Thanks and again I really appreciate this! PS "Serum" refers to blood spun in a laboratory or to blood itself. Serum sickness would sound like blood poisoning in lay terms (the technical term would be more like septicemia, where "Sept" is toxicity and "emia" refers to the blood, like in the word "anemia"). I question the source of that "Serum sickness" term and hence the info behind it. But it would still be interesting to read more and of course, you never do know. Again these so-called "Side effects" make me so mad, I consider this stuff criminal. So yes, to know the facts is darned important isn't it. I agree with you. Thank you for your knowledge and concern. So nice that people on this forum are all looking out for each other! :-)
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Tracy9
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I get serum reactions almost every time I get IVIG, which is a blood product, blood plasma and antibodies. I spend about four days with flu like symptoms, feeling tired, sleepy, and weak. This is of course every other week of my life. I'm not sure if the correct term is serum sickness, which I steer away from so they won't think I'm having a side effect, but serum reaction happens to most people so I stick with that. Some of us have it every time and that's just the way it is.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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karenl
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Tracy,
I hope you get better soon. MG can get better, look at my post of 2009 and now I am so much better ... cannot even believe this was my post.

If you are not getting better the diagnosis is still wrong or not complete.
Try again, maybe an additional doctor, another opinion....

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Robin123
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Just to remind everyone to break up your paragraphs into a couple lines, like karenl just did, so others can read easier - thx -

I think the key is to find what's going to treat. Then we don't feel so bad.

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norcal
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I can't believe how awful that feeling is that you will/want to die. I would say to myself, just make it through the day.

When it was real bad it was minute to minute.


I used distractions like cooking for my family to get my mind off
of it.

I prayed to God to take me many times. I told my family to move on with my blessings!

Now that has passed and I feel SO strong that I got passed it.Truly the most horrrible part of the LD experience.

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lou
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Well, I would not be unhappy to know that one night I would go to sleep and not wake up. Sometimes wish for it.
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
lymeladyinNY
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I feel that way today. Not always, but babs is bothering me so much today that I feel flat and uninterested in living.

My son asked me today if I thought I would live to see my great-grandchildren. I blurted out, "I sure hope not!"

Sometimes I get the feeling of "hurry up, get this over with already!" The suffering is just too much. On those kinds of days, which are all too frequent, I really have to live in the moment. I distract myself with reading material or the TV because I am not up to anything more strenuous.

I just told my husband, "Mrs. A-------i is retiring to her chambers and will no longer be receiving visitors." He just replied, "Good night!"

And with that, I bid you all adieu.

- Lymelady

--------------------
I want to be free

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SandyLee
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Sounds like you just described me. Your blood pressure is low because your temperature is low. Get a hot bath, hottest you can tolerate, for 40 minutes to raise your core temperature. Those on any heart or diabetes meds please be careful and speak to a doc first. You'll sleep easier if you do this as necessary. Not a doc, this is only a suggestion.

As for the paranoia, I have it too. Nearly everynight I feel my heart going berserk, and I then begin to have nightmares about dying, all while trying to sleep. It's hard to sleep and stay asleep as well. I found a hot cup of herbal tea and a good book help me to fall asleep and cut out the bad dreams.

I fear for my life by day as well, not much I can do but keep myself busy, plus the oxygen from moving around can help.

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murph257
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I just can't believe what I am reading here. I really thought I was losing my mind. I have been on zoloft for depression for 8 years and have been fine. I can't believe how many times that I have thought about blowing my brains out in the past 2 months. This sickness has just really picked up momentum in the last 2 months and I seem to wake up with something new everyday. Thank you all for sharing.

Murph257

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