Topic: I Don't want to Die, but I don't want to live like THIS !!!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Please tell me I'm still Herxing. I'm 4 days off now and somehow I feel worse today. I'm still taking the Low Dose Naltrexone and Supps. One of them is Circuma 150mg 2 x day. This was supposed to help with Inflammation, but also when I read up on it, it is an antiviral and anti fungal. Maybe this is playing a part as I started this around the same time as the abx.
I could barely get my breath from 9am to 3pm today. I just laid in bed hyperventilating with intermittent breath holding to slow it down. This isn't the air hunger where you can't get a full breath. I don't know what this is.
The rest of my day was spent in front of the PC drinking hot tea and water back and forth b/c I'm still so cold.
So I go and take an Epsom salt bath to detox. I get out 30 min. later and my head starts killing me after the bath. I swear it feels like I've been hit in the head with a 2x4 and I can't think straight.
The moving sensation of being on a boat is still flared.
I hope all of this is still a Herx. I'm praying the Half life of the Mepron being 2-3 days is still playing a part in all of this as I'm almost 4 days out from stopping all 4 abx.
I keep getting pain on these notches on the back of the skull at the base and then it leaves from there and goes into the temples. These are not migraines. This is different from the pains inside the head.
God is letting me breathe, letting others see and hear me, but is not letting me live except in agony.
I'm not doing anything stupid, but I can't help thinking how I can't live like this the rest of my life. I keep looking for feeling better part that comes after feeling worse. It seems with me, all I do is feel worse no matter what I do.
I have always thought of myself as a strong person, one that could take anything thrown at me and not go down, and if I did, I was one that would keep getting back up to fight, which I'm doing, but this is just getting ridiculous. I keep getting knocked down, over and over and over again. How much is enough when you see zero improvement. I've done Rife, Salt/C and now Abx all within the year. I stopped everything for 3 mos. when I got that IVIG b/c I felt so sick. It's been all down hill since then.
The craziest thing is that this all started after I lost my brother to lung cancer at just 39 years old, than I got sick not even 3 mos. later. My father has had to see one son die, and another go through torture, barely hanging on every day. When people tell me life isn't fair, they arn't kidding. Now my wife is gone, which is probably a good thing, as she was no support at all. I finally have help with my kids, which should be a good thing, but doesn't seem to be helping me at all with my overall attitude.
I guess in the big picture, I'm not just sick of this stuff, but I'm scared to death there is no end to it.
Maybe I'm wrong and just talking in the moment.
Going to bed..... Appreciate any support as always.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Hang in there, Gary. When I first started on heavy meds including Mepron, I could not walk without help or holding onto something for months. It was terrible. Eventually I made progress.
I was also in the mental state you are in the sense that death would have been welcome. I was not suicidal at all, but I would have been happy to not have woken up in the morning.
As you know, I'm all back to normal and leading a normal life again. Hang in there, it does get better, it just takes the fight of your life.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi Gary, I'm really sorry that you are going through such a bad time right now. Gosh, it sounds like a long herx. I hope it ends soon. Sometimes when the treatment seems worse than the disease I feel discouraged and uncertain of how to proceed, but the only thing I can say is perhaps to go more slowly with your treatment. Everyone responds differently and only you kinow your own body. Good luck with this.
Posts: 156 | From MA | Registered: Jul 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry you are having such a hard time.
I was in a constant herx for the first few years of treatment. I sometimes felt like I was holding on by a thread so I understand the feelings of despair that constant herxing can cause.
I'm in my 4th year of treatment and I no longer have the constant herxing. I feel better overall. It will happen for you too. You just have to hang in there and keep trying things until you find somthing that helps.
When I felt despair, I would concentrate on finding a solution to some of my symptoms. I know that won't work for everyone but it helped me to manage by giving me something important to concentrate on.
Forgive me if you've already explored these things but I'll throw them out there just in case.
You may have a problem with sulfur in which case an epsom salt bath may be adding to your toxin load.
Babesia may have a toxin similar to lyme according to Dr. S. - the guy who wrote the books on babesia. If that's the case, you may need a binding agent or to increase your current binding agent in order to deal with the increased die-off.
Anti-inflammatories can make a huge difference if your symptoms are from die-off. With the permission and advice of your doctor, keep trying different things and adding things until you've found a good combination.
Also, I know you've already asked your LLMD for help but keep asking. He should at least know what a rough time you are having so that if needed, your treatment can be adjusted.
Hang in there. This isn't forever. You will get better.
Edited to add: If you have a new symptom that involves difficulty breathing, please call your doctor and let them know.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I'm so sorry you are feeling so bad. I will say a prayer for you..
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Hi Gary,
I am sending prayers and hugs your way.
I understand how you feel. I have been feeling rotten for a couple of weeks now.
The only thing that helps me is to read the messages here of all the people here that were really sick and got better. We will get there! We have to believe that and push forward. God has a plan for all of us.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
hang in there Gary....everyday.....some day you'll look back and say: OMG what a ride! Scariest one ever, but you'll be invincible.
best, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm curious how long you were sick before treatment?
I know this isn't what you want to hear but I herxed for almost two years straight in the beginning of my treatment.
Have you tried charcoal, milk thistle or lemon water? These have all helped me get through my herxes.
Hang in there things will get better. They did for me.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Hey Gary,
We are all thinking about you. I know it's a tough ride and words don't really help too much. When I first found out I had this I got on IV and I thought that I would kick this thing. I now have accepted that it takes years to treat.
We are going through a series of hilltops and valleys. When you are in the dark valley you will eventually be on a hilltop.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I felt so sick I thought for sure I would probably die. The pressure on my chest was intense. It felt like I could not get a deep enough breath.
I couldn't walk any distance without feeling like I would pass-out. When I did walk up a flight of stairs my heart would pound and I would loose my vision by the time I got to the top. I couldn't catch my breath.
After 1.5 years of babesia treatment the symptoms are so so much better. As a matter of fact I really don't get them any more. I remember thinking there is no way I can go on like this. It was just horrible.
I would suggest that any time you have chest pain or shortness of breath you should get it checked out to rule out any other problems.
If there is not a problem with your lungs or heart then try antiinflammatories and also possibly something for anxiety. I had to take stuff from time to time during a huge herx. They can really help you through these times.
How long have you treated the babesia? I will tell you that untreated babesia can make you feel like you are going to die.
I treated lyme for 4 years before finding out all along I had babesia.
Blessings to you. I will say a prayer!
Please remember that others have been through the same thing. In time you will come through this also.
Katrina
I still have issues but nothing at all like you are referring to.
Hang in there. It really does get better.
Posts: 219 | From Michigan | Registered: Apr 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Hang in there, Gary. I have often felt the same way. I think that there must be some reason why we are still here dealing with this suffering. I don't know what it is.
It doesn't make sense that we should all be suffering like this while others actually die... Like the people in Haiti or Chile...
I hope this doesn't sound too philosophical, cryptic or dark. We just never know what tomorrow will bring. There must be a reason why we are all going through this. We just have to try to hang on as best as we can...
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You sound miserable. When I first started treatment I felt much like you but it began to get better in a couple of weeks and I have never been that sick since. Hang in there, take all the support your family offers and tell yourself you will get well and "this too shall pass".
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
This shall pass as stated above. I had the same fears in December and January....for the first time in my life I thought the possibility of not improving was to much to bear. But improve you will. If necessary get checked with a doctor and then know you will get better...you won't stay in that desperate space for ever. You are getting great advice from people here...journal your symptoms and note any subtle improvements, stay proactive....keep posting....get anxiety undr control, see a professional about this if you must; I did..and it helped alot.
Good luck, let us know how you are doing.
Posts: 172 | From ohio | Registered: Feb 2010
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posted
First, God bless you and keep you Gary. I have gone 3 months undiagnosed so far. Possible Lyme based on Igenex results. History of Chronic Fatigue Syndrome as well. I get alot of the same symptoms you have on occasion. Most of the reason mine are bearable are based on the help of a naturopathic doctor with extensive herbal knowledge. He treats the symptoms and not the cause and is really amazing at it. For a while my whole body had this internal buzzing and felt like it was on fire inside. Went to the Emergency Room 6 times as well. Get to a naturopathic doctor and tell him what is going on with you. I can almost guarantee a good one will certainly be able to get at alot of these symptoms you are going thru. Also I bet acupuncture and possibly colonics might help your system. But first thing, find a naturopathic doctor who uses herbs to treat symptoms and talk things over at the very least. The cost from what I have seen is also significantly less then an Medical doctor. God bless you again.
Posts: 21 | From Phoenix, Arizona | Registered: Feb 2010
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posted
Gary, I have said what you titled this post so many times.
I actually called EMT tonight, which I am very hesitant to do. I have been so sick the past few days. It finally got to a point where I was worried I was critically ill or something.
My heart checked out okay, so I declined going to the hospital.
I'm with you, friend, as is everyone else here. I cannot understand any of this for the life of me.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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You'll make it through this, my brother. I too say the same things when I feel like I have no hope. Funny how this bug plays with our emotions and toys with our sense of worth.
I can tell you're a strong guy, and you feel the same way I do about my own body. We will persevere through this.
It's an experience we will look back on that will be a defining chapter of our strength and courage. In little time, we will both look back and say, "Remember that year I was dealing with all that Lyme crap... Feels like forever ago. Let's go have some fun!"
posted
Gary, I really don't have anything new to add, but wanted you to know I'm thinking about you.
Please make sure to let your LLMD know what's going on.
Glad you have family to help with your kids.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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I have been told by my LLMD that anytime you start a new abx, you can herx. That's one reason he starts me on one med at a time. (I have learned the hard way that I need to do that with supplements and herbs.)
The first month of treatment he started me on Biaxin and in my followup in 2 weeks Doxy. I herxed on Doxy the second week and Biaxin the 4th week. The week in between was my flare week in the month. It was a tough time.
Now each month he has added first mepron then acyclovir. While it hasn't been a picnic, it is much easier on me, my body and my sense well being. Ask your LLMD if you can work in a similar manner to work up from there.
I chart my progress daily and have noticed a slight trend toward healing. Sometimes it's just putting one foot in front of the other. A journey of a thousand miles begins with just one step.
I was treated over 8 years ago after being undiagnosed for 9 or 10 years and recovered, but I went through an extremely stressful year and didn't take care of myself. This is a relapse or reinfection for me, but the healing is following the same trend for me, maybe a little faster.
I KNOW you can get better. I KNOW that I will get better. One step at a time. One day at a time. And on the bad days, one moment at a time.
B4lyme
Also, my kids were young when I was sick the first time and despite my illness, my kids are fine and perhaps even more compassionate and encouraging. The one graduates from college this year, the other from high school. Your children have a way of seeing your strength and seeing reason for encouragement even when you don't. Hang in there.
Posts: 144 | From PA | Registered: Nov 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I'm praying for you, Gary. These people are so caring, I hope you can feel the love surrounding you!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Gary, this illness has brought some very strong men, both physically and mentally strong men to their KNEES. They were able to stand up again. You will too. That's fact!
You will not have to live like this if you use all that negative energy and turn it into positive. I KNOW that's easier said than done.
Losing your brother is a horrible stressor on a healthy body/mind. Add to your fear that you too could die from this and you have some heavy baggage you are trying to carry around.
You really need to lighten your load. Ask your God and your angel, your brother to help clear your mind and give you peace so you are able to think about your next step in healing you.
PEACE, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thank you everyone for your replies and support.
They say bad things come in 3's.
I lost my Brother, My wife, and My health all within a short period of time.
So here I am day 5 off all 4 abx. I'm still aching, and my Dysequilibrium is even worse today. I don't get it except to hope and pray I'm still Herxing. I will need to restart the meds soon, but I need to feel a little better first.
I hope this is all still part of the Herx. It's like I dropped a bomb inside my body. Even though much of the crying I do is to me, part of the Herx, some of it is from being overwhelmed from the stress of all of this on my body. I wish I could tolerate the Antidepressants, but my body says no to them too. When I take them, the side effects are similar to a Herx.
Be sure I will let you all know how I'm doing.
Thanks again,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
My heart goes out to you , it is a really horrible disease and unfortunatley alot of us get much worse durning treatment.
Even though the herxing was like hell on earth & , it brought me so many years of relief. For which im very grateful .
It has sometimes taken me 2 weeks or more to clear a herx, so yes you could be still be herxing.
Hang in there
*none of the above is medical advice. just mt 2 cents
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
The despair has often left me in tears and it is hell on self esteem. I am far from well , but I have days periodically when I can walk a brisk walk or manage to be productive. The first 18 mos were hard . The first 8 mos I was a vegetable. I got rid of pain within a year .... Try alka seltzer once or twice a day on your bad days . It did really help me with the sick all over feeling .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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