posted
I want to preface this by saying I'm not herxing. I'm 27, and this July 7 will mark two yrs since my Dx and this past match has marked two years since all hell broke loose in my life. I just feel like I can't beat this fully. I'm by no means as bad as I've ever been. I've greatly improved and enough to return to work full time. My co workers don't know how much pain I'm in. But I am still in a lot of pain every single day. I work out but my body just hurts. My muscles still twitch. I have heart hiccups, chest pains, some light anxiety at times. My back has begun to crack and gain a tightness (could be from sitting position too long) and I have to crack it to relieve the tension. I have been to three doctors and have been on abx the entire way. I am just starting to wonder, am I just dying slowly and to my own ignorance? Is this some type of weird MS or ALS slowly onsetting? I still have the prickly loss of feeling (arm falling asleep, or hand or legs) almost every morning when I wake up. I still have cramping in my left foot arch although it's improved greatly. I cannot see my doctor monthly like he requires because of my job. Please someone help me I am scared. I lie to myself and say because I've made it this far that I will overcome it but I feel like I'm lying to myself. I'm not normal like my friends and my normal life is gone. I am scared this is going to kill me and I'm living every day running from the truth which I ls that I can get rid of Lyme, which I was told by many positive tests it was Lyme but I can't help but ask, why won't it go away? I've suffered enough and Lost enough. Like many here have. It's ran it's course I'm ready for it to go. I fall asleep in fear so late so many nights. I fall asleep scared saying the lords prayer until I pass out , often forgetting to even pray for others anymore because I'm so scared of what's happening to me. All the while I have to pretend I'm normal to 99% of people up provide for myself and keep my home. Someone please help me. I am desperate and hopeless.
posted
Just from laying on my stomach and typing this post. My left hand is numb and twitching like crazy and my right hand and fingers have gone numb. What is happening to me
posted
I feel like the abx is not working anymore. No matter the combo I feel like nothing is happening and the remaining symptoms will not leave. The symptoms I mention above. It makes me feel like I am dying, the pain and discomfort I'm in.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Clint31 - Please continue finding answers and appropriate treatment for your Lyme. The rest of your life depends on it, and I believe you can get well.
As for people who don't understand, those who have never experienced this couldn't even begin to comprehend it. Be kind to yourself. This is every bit as hard as it feels. And isolating.
I, too, had the tightness in my back that I wanted to crack all the time. I'm pretty sure it was meningeal swelling. One doc suggested the autoimmune condition ankylosing spondylitis, but it turned out to be Lyme.
Are you with a LLMD? Have your tested for co-infections? Are you taking enough antibiotics? Many of us are in treatment more than two years, so don't panic. But make sure you're being treated appropriately.
I was in the same place 5 years ago that you're at right now. I now feel "almost" well. All the pain you describe I also experienced a long time ago, but I got better, and so will you. I wish it were an easy road, but it's not.
Posts: 975 | From California | Registered: Apr 2007
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quote:Originally posted by Clint31: I want to preface this by saying I'm not herxing. I'm 27, and this July 7 will mark two yrs since my Dx and this past match has marked two years since all hell broke loose in my life.
I just feel like I can't beat this fully. I'm by no means as bad as I've ever been. I've greatly improved and enough to return to work full time. My co workers don't know how much pain I'm in.
But I am still in a lot of pain every single day. I work out but my body just hurts. My muscles still twitch. I have heart hiccups, chest pains, some light anxiety at times.
My back has begun to crack and gain a tightness (could be from sitting position too long) and I have to crack it to relieve the tension. I have been to three doctors and have been on abx the entire way.
I am just starting to wonder, am I just dying slowly and to my own ignorance? Is this some type of weird MS or ALS slowly onsetting?
I still have the prickly loss of feeling (arm falling asleep, or hand or legs) almost every morning when I wake up.
I still have cramping in my left foot arch although it's improved greatly. I cannot see my doctor monthly like he requires because of my job.
Please someone help me I am scared. I lie to myself and say because I've made it this far that I will overcome it but I feel like I'm lying to myself.
I'm not normal like my friends and my normal life is gone. I am scared this is going to kill me and I'm living every day running from the truth which I ls that I can get rid of Lyme,
which I was told by many positive tests it was Lyme but I can't help but ask, why won't it go away?
I've suffered enough and Lost enough. Like many here have. It's ran it's course I'm ready for it to go.
I fall asleep in fear so late so many nights. I fall asleep scared saying the lords prayer until I pass out , often forgetting to even pray for others anymore because I'm so scared of what's happening to me.
All the while I have to pretend I'm normal to 99% of people up provide for myself and keep my home. Someone please help me. I am desperate and hopeless.
Hi - breaking up the text here for easier reading for many here -
Sorry to read how difficult it still is -
Sounds to me, from your continued posting, that you may need your treatment re-evaluated with experienced Lyme doctors.
Or, does your doctor want you in monthly, and would that make a big difference in terms of tracking your responses to meds and making appropriate treatment changes?
I hope others come along soon here with the kinds of symptoms you're describing and let you know what they're doing or what they did to improve them.
Lyme is a relapsing illness - it'll probably be there in us, but we can learn to treat and improve.
Many return to functional living. I suggest you read through some of the success stories at the top of General Support and study what they did. We're all different so we all have to find what's going to improve each of us.
Am wondering if your treatment consists of antibiotics only or whether you are also dealing with any complementary care as well. The 2008 Burrascano guidelines has a lot on that topic, plus that's a pretty big subject in itself.
We try to do three things: kill the bacteria, detox the body and fortify the body.
I'd say rather than give in to fear, what about learning more about the different kinds of remedies that people try for improving their health? That's a big topic and a lot to learn about and evaluate whether some of it might be appropriate for you.
Now for the psychological experience - no, we're not normal anymore, but we're normal for this disease. That's why we can relate to one another here.
Think about this as a new normal. Not one any of us chose, but this is what the illness is like. It's not us doing this, it's the illness.
I know what you mean about "passing" with the public. They don't get it, don't want to know, don't want to go there with us.
In general, I often think it's a good idea not to talk about it, just to be able to keep going in the functional world. But it does make for a lot of loneliness.
Sometimes, when I do choose to open up to someone, I get surprised. Why? Because I find out they also were hiding a health condition, and scared to tell me about it!
That's the odd thing about an invisible health condition - others might have something too!
And if we're fortunate, people might even be able to relate to what we're saying, because they have a family member or a friend who's going through this experience.
You never know till you let someone know what your experience is what their response is going to be.
It can break the loneliness and isolation to try out communicating to people you feel are mature enough and friendly enough to handle your communication.
Maybe test it slowly, break them in slowly. If they seem to respond ok, then tell them a little more. If not, then stop.
Also, do you have any support groups nearby at all? That can help too, being able to go to a group where people understand.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
hi clint! I have what you have!!!!! Yes, EVERYTHING, the xxxxx twitches that will not go away, the left thumb moving a bit, cracking back, pain in my butt, fatigue.
As you, I have been wondering about MS etc.
But i have recently tried clindamycin + tinidazole, with imprivement of the twitching etc. Also high magnesium and B12 suppl.
Keep fighting! I am! and don�t push too hard. Be easy on yourself.
I am also on citalopram, an anti-depressive pill, that has helped me cope a little better, 3 years now, still fighting! 35 years old and feeling like 70 sometimes.....
WE WILL GET BETTER!
Posts: 347 | From sweden | Registered: Feb 2008
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Your key words were:I feel like the abx is not working anymore. Per Dr. Burrascano's treatment guide this most likely means your are dealing with co-infections. See a doctor who can do a peripheral blood smear, and If they can spend 15 minutes looking at your slide at hi-power 100x oil immersion they will be able to see the BLO's - Bartonella like organisms and maybe Babesia as well (though may need to clear BLO to see them well).
So do not despair. Go gunning for the Bartonella or what ever co-infection you may have. I mention Bart. as putting it in remission was a big step upward for me and like you I was no-longer responding to a med that previously had worked very well for me (doxy 200 mg twice/day)
My meds for Bart were flagyl(pulsed) 250X3/day, bactrim ds 2x/day, zithro 250-500/day those gave me a big step up.
I notice Swedish Lyme did tinidazole (flagyl-like drug + clinda) So the 2 points are you must change your treatment approach and flagyl/tinda (would be good to have 1 of those on-board).
Best wishes- stay tuff a little longer,
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
Clint, I am so sorry to read that you are feeling this way! if it helps at all, I can totally relate. I often have this same feeling. Could I die from this?
When you have health problems that linger on it gets very discouraging. Some days despite the fact that I am feeling much better, I look at the bottles of pills lined up on my kitchen counter and it frightens me.
BUT...people do get well and its a very slow process. I have recently come to terms with the fact that self care will play a big part in future years for me.
It is really hard to always put the game face on and everyone thinks you are normal and healthy. This can be really draining and lonely. Maybe try confiding in a coworker if you aren't feeling well at some point. It will probably feel so good to do this! I think pretending to be normal all the time is stressful in itself. Let people share the burden occasionally.
Another thing that helps me sometimes is to try a new strategy to improve health. It could be skin brushing, eating a few new vegetables, a walk outside each day. Sometimes this puts you back feeling in control.
In the book by Connie Strasheim (I cannot think of the name) that has input from 13 Lyme practitioners, one of them states that she wouldn't treat Lyme and coifections if people didn't get better. We need to hang on to that!!!
Hang in there and tell you doctor how you are feeling.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote:I work out but my body just hurts. My muscles still twitch. I have heart hiccups, chest pains, some light anxiety at times.
Have you had your Magnesium levels checked? Labcorp runs an Red Blood Cell Magnesium count. These symptoms above scream of Magnesium deficiency.
And if you are deficient, NO AMOUNT OF ANTIBIOTICS is going to fix this, nor is just taking magnesium orally going to restore you to normal levels.
IV Magnesium is really the way to go. IM is easier to do and you could do yourself and good for maintenance once you get your levels up(and easier on the wallet).
Antibiotics will address the bacteria (although you may have numerous types of bacteria still untreated), but abx do not fix the other messes you've ended up with as a result of the this disease and its treament.
You may have knocked down your germ load a bit, but nowhere do I see anything else addressed (I don't know your full story, so pardon if I ask
What have you done to address coinfections? Detoxing? Rebuild your immune system? Treat fungi and yeast? Parasites?
I will say to the day I die - Antibiotics alone will not get you well. It's just part of the program.
Sounds like you're in Flight Mode and you need to switch back to Fight Mode.
Fight Mode means take charge and responsibility for your health.
A call or visit to your LLMD might be in order - you need to have them address your quality of life. So that means - figure out what type of pain it is and do something about it. There's all types of pain - could be muscular (again from magnesium deficiency), could be nerve pain, could be inflammation. Figure out why the anxiety and do something about it. An LLMD that listens to their patients does this.
We're here to listen and vent on. Being 'normal' stinks when you're in constant pain. I hope you get through this.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It sounds to me that all the bases aren't being covered in your care. Tell me if all these basis are being covered:
posted
you dont have als, ms nothing like that. You have lyme and maybe some hormone problems. keep yer head up kid. Have u tried stopping the abx to see if symptoms slow down, sometimes thats worth a try!.... but be cautious cause thats not always the case.
Posts: 217 | From Everywhere | Registered: Nov 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
MB that's a great link. Thanks.
Hi Clint,
I understand what you are feeling. We are all in this boat together. Most of the people that have gotten well have moved on and don't come onto Lymenet anymore. There are many people that have gotten well. Luckily we have some that stay here to remind us that we can get better.
I feel the same as you sometimes. I not only feel that the abx may not be working but that they are beginning to damage my organs.
I will keep fighting but there are some days that I take the attitude of "what is the worst thing that could happen." I try to accept that, whatever it may be. If it is that I will die then I try to accept that. I don't think that I will die but I will accept it if it happens.
I suppose it is a Paradox to fight the disease and also accept that whatever happens, happens.
I do everything I can to support my immune system. I've changed my diet completely. I take supplements. I try to get out in the sun and do some type of exercise, at least move around a bit. I try not to focus on the disease.
I have done the same thing as you, I have stopped praying for others because I'm so worried about my own condition. I am trying to change that. Lyme has become a God that we focus all of our attention on. That is what I want to change.
Posts: 2232 | From USA | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Some of your symptoms are due to toxins that the liver has not cleared out yet. Some are due to nutritional deficiencies.
Pharmaceutical quality fish oil will improve cell wall integrity. This is important, as all nutrients that the cells need must pass through the cell walls. Country Life Omega 3 Mood http://www.vitacost.com/Country-Life-Omega-3-Mood
Magnesium and omega 3's (fish oil) are also used by the liver to make glutathione, which it uses to detoxify the nerve poisons left by the dead Lyme bacteria.
Undenatured whey provides amino acids the liver needs to make glutathione.
These are a couple simple things you can do to help your body get back to normal.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry you're suffering so much Clint31. I remember you were doing well for a while.
I agree this disease is ruthless. Everytime you have a decent day, it never ever lets you forget it's there. A few days ago I was out doing some stuff. Today, I was breaking into sweats, off-balance, eyes pouring, super tired, etc. It isn't fair.
I agree with the others to explore other avenues like Mg depletion, heavy metal issues, and other stuff. Did you ever get back on Armour or a decent equivalent?
Good luck. I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I could have written the exact things that you did 3 years ago. After being on antibiotics (with a LLMD)for 4 years I felt that I had gotten to a point that something was far worse than ever before. I was scared. I knew I had to take my life in my own hands and change what I was doing. I started seeing a naturpath along with my LLMD. The LLMD was fantastic but he only knows main stream medicine. So the naturapath doctor treated me for toxins while the LLMD killed the bacteria. I finally felt like my life was coming back to me. The naturapath doctor has also been treating lyme for 20 years so he knew what to give me. It is awful difficult to know how to treat yourself when you are very sick. Sounds like you need to get very serious about getting rid of the toxins as you are killing the bacteria. You can pm me if you would like more info.
-------------------- Margaret Posts: 103 | From CT | Registered: Feb 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Clint, i'm reallyin a bad place now. take advantage of the good days and with gods help, maybe they'll be more of them and less pain. Minute at a time.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Look up salt and vitamin c treatment for lyme. It might help. I know someone who did that and continues to do it every couple years so that it doesnt come back. Never going to fully get rid of it so you have to make sure that you are taking care of yourself and if needed treat yourself with this salt and vitamin c. I tried it about a year ago and was stuck on the couch all the time but if you can get through that and just keep going youll get better. Stay strong.
Posts: 6 | From Warren, Ohio. | Registered: Apr 2010
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posted
Clint, You can't even imagine how many of us can relate to you. We have all either been there, are there or,on our way there again. There are so many smart people here. Listen to Metallic Blue, Read Dr B's guidelines and make very very sure you have a Dr. who you trust and will listen to you. Keep posting and people will keep helping. Sounds like you have many things going on. Co-infections etc. and unfortunately they all have to be addressed individually.
Posts: 161 | From midwest | Registered: Jul 2007
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Do you have a doctor that you feel you can trust? I don't know who you're seeing, for some reason I thought you were maybe seeing someone at a fibro/fatigue type clinic. I very well might be wrong about that.
The thing is, you're going to find a lot of opinions here...and very good ones, from people who are or have been in all of the various stages of sickness and recovery.
But that can't replace a good doctor who is willing to take very seriously the level of misery and fear you're living in.
I feel much the same as you a lot of the time. Treatment has been very difficult, and I am filled with doubt, despair and confusion a lot of the time. The only thing I have going for me is a doctor who I think gives a **** about how bad I feel. He's not god, and doesn't have all the answers, but I do have some faith that he's at least taking me seriously. And trying to help me to be normal again.
I'm real sorry you feel so bad.
-Michael
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
Clint, Its not ALS or MS. You know what you got bro. I feel ya on everything you said. You got to try to keep your stress level low. I know your working hard in every which way you can. Take your meds for the anxiety/panic. Are you taking your thyroid like your suppose to be. Are you still on Flagyl. Thats strong stuff man. One of the stronger orals. Perhaps just try some maintance abx they may work better. I personally think slow=success. Thats just my opinion. Fast seems to crush people. You need anything dont be scared, later bro. Take care!! Keep your headup. I know ball is going on now, but bro you have to find time to just chill out.
Posts: 217 | From Everywhere | Registered: Nov 2006
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posted
Clint, I read your post and completely relate to what you are feeling. I am also in the same place (with some different symptoms than you.)
The only thing that keeps me going when I am depressed is reading what has helped others. My only hope is that there is something I haven't tried which will take me to another level of wellness. This is a very complicated disease with many different variables. Add to that people's different genetic makeups and you get a wide variety of situations where the same treatment does not work for everyone.
Please know that there are others that are feeling this and you are not alone. Hopefully we will help each other get better. I feel like I am an outcast at work and only the people on this board understand what I am going through.
Keep your chin up!
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I am so sorry you are suffering.
Do you live alone? Are there any lyme support groups in your area? This is been a real life line for me...
The truth is that its hard to know what is wrong with all of us. Many symptoms can be caused by different things. And sometimes its a vitamin or other defficiency issue, and sometimes its because you got other tick infection s aside from lyme.
This is why many of us will have two different MDs, one to treat lyme, and a naturopath or other alternative person to treat deficiencies, detox etc.
Also, many LLMDs rotate abx, because it hard to know exactly which bug is causing the problem. Your emotional issues sound an awful lot like Bartonella. muscle pain can be Erlichia. Or myabe the lyme bugs are used to your current abx, and you need different ones now.
Hang in there. Also, don't be shy about asking for some drugs to help you get through the emotional stuff. Things like Klonopin can really help anxiety and pain.
hang in there, I am going through hell too after 2.5 years in treatment, this disease SUCKS!
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
thanks for all the great messages. I'm just struggling. I'm up late and I'm having some anxiety and some pains all over... not sure if its lyme or the abx doing work or what. just scared... so many nights like this. Thanks the Lord for lymenet and all the wonderful people who show kindness. I appreciate it. No one else understands. and tomorrow I'll wake up exhausted and go to work and pretend to be "normal". I guess not so bad considering the alternative. At least I have a job and at least I can make it in and can think clearly to do it on most days. Life is still good at times but at times I'm just still afraid... and I know its not all in my head my body still has weird things happen to it.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi 31 --
We all started dying from the day we are born - for some of us its just a Rougher trip --
From symptoms you list it Sure Sounds like you have Babs Also --
If you do have Babs you wont make much progress until the Babs is treated -- Also --
I can tell you from personal experience that Babs is a Tuff Bug and it takes a Long time to get it under control --
But you Can Win the battle - Treatment is Not easy--Very Painful-- and its Sure No Fun --
But you can get your Life Back -->>
Read as much as you can about the Co Infections so you can figure out which ones you have and start treatment--( start with Babs) ( Almost Every One has at least one co infection )
You Will Get Better -- I Have --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Babesiosis gave me that horrible feeling of doom.
Once I started treating it, I got it every 7 days like clockwork. It lasted 2 days. Once I told the lyme doc, he hit it with artimesinin in addition to the babs med I was taking.
That is how I finally got rid of that horrible feeling of doom. With artimesinin.
All together, I went through 3 lyme docs and spent a little over 3 years in treatment. I got discouraged after 2 years. But, that led me to go to a better lyme doc. Bingo! In one year, he had me rid of my disease!
I had lyme, babs, and bart. Had them undiagnosed for at least 10 years.
Now, I have been symptom-free for 5 years. I am enjoying my life, and it is the same life I had before lyme disease.
I agree with what others have said. Your doc has to treat you for all the coinfections. I agree to start treating babs if you are not currently doing so.
Once you hit on the right med for your disease, you will not feel like you are slowly dying. You will feel like you are coming back to life!!
It is worthwhile to mark on a calendar when you get the feelings of doom and other symptoms. If there is a pattern to these things, that really helps the doc figure out what needs treated. The more you can record, the better.
Burrascano says that babesiosis has a cycle that comes every few days. My doc said it has a 7 day cycle and a 14 day cycle.
From p. 26 of Burrascano (speaking of babesiosis):
"Symptoms cycle rapidly, with flares every four to six days."
So, try to record and supply more info to your doctor. That in itself could get you better treatment.
And, if not making progress with one doc, you owe it to yourself to consider changing docs. Once the doc you are with has exhausted all his tricks, you have to move on. You have to figure out when that time comes if the doc doesn't come right out and admit it to you.
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