When To Stop Looking For Cause?

[valliali]

Hi all,

My improvement over the last year has been drastic. I became sick over three years ago, following living in rural Africa for eight months. Before leaving for Africa, I was in top-notch health, and my friends frequently commented on how I was never sick. I ran at least three miles a day in sometimes 115 degree weather, no problems.

I returned from Africa and was living in Pennsylvania for a couple of months. About a month, or a little less after returning, I was suddenly crippled with extreme panic attacks, major facial flushing, swollen lymph nodes and racing heart. Literally one day I was on run feeling like the world was my oyster and the very next day it seemed everything was failing. I was not sick, nor had been for a long time prior to this. Everything degraded from there and for two years I was very sick. No doctor, to this day, has ever been able to offer a diagnosis, but it has seemed very clear that I have an autonomic dysfunction, so the POTS label got stuck with me (though my tilt was negative for POTS but positive for a sudden rapid heart reaction to the adrenaline injection -- which occurred upon lowering, not standing).

Since then, like I said, I have improved so much. It is impossible for me to even really remember how much I suffered those years. I know that it happened and I can very vividly remember how often I thought I was dying, but I can't physically remember how horrible it felt to actually experience that. I still have rapid heart rates and some other discomforts here and there, but largely, I don't think a huge deal about my symptoms, which used to be all I could think about.

I still feel very concerned about what caused all of this, especially because no diagnosis was ever offered. I did have a doctor strongly suspect lyme's disease, especially because of where I was located at the time I became sick (tick country) and I worry about that a great deal because I know it can "hide" for a long time. But at the same time, I don't think I would see the pretty constant remarkable improvement I have had. One symptom, which has disappeared but really bothers me because it doesn't fit a "POTS" profile, was this bizarre arthritis I had developed. My fingers became sausages and burst out with these little red nodules on my finger joints that were intensely painful. This lasted several months and disappeared. The arthritis (not the nodules) came and went in my fingers for a couple of years, but hasn't returned for the last two years. I fully believe that something was inside of me, whether it was lyme's, some parasite, virus, etc. Something caused the arthritis and swollen lymph nodes that lasted for several years.

I am fairly plagued with fear that whatever it was inside of me is just hiding and that I will go through all of that again. I am finally getting a taste of life again and am trying to get rid of the last remaining symptoms, which are a cake walk compared to before. So I am truly terrified of ever going back, and because I never received any treatment, I wonder if something inside of me causing this could just disappear, or if something is just lurking in my cells waiting for me to get sick again so that it can return.

Does anyone else worry about this? At what point do I just accept that I'll never know and move on? Is it worth trying to figure out if something infected me, though I am relatively high functioning? Do I pursue the lyme's treatment, despite its major expenses and the fact that I am improving?

[lieze]

I think I would just enjoy your health and hope it doesn't return.

Put your emphasis on staying healthy I think rather than on what made you sick.

Get plenty of rest, eat well, avoid getting sick if you can.

I have started to just carry hand sanitizer and I use it religiously after touching anything "public" like a door handle etc etc.

It's great new that you have seen improvement good for you.

Oh I had the arthritis thing too.

It may not have lasted as long as yours but my hands swelled up my joints were sore and the bottoms of my feet hurt for an entire week.

It all passed and could be a part of the POTS.

My doctor checked me for arthritis and it was negative.

I think by the time I saw her again to get the results those symptoms had passed.

[HopeSprings]

I can completely relate. When my crazy nightmare began in 2005 I thought whatever it was would surely kill me. The severity of the symptoms those first few months was so scary --- it had a feeling all its own. My heart was racing out of control, I was sweating from my armpits and palms, terrible adrenal like rushes of heat up and down my body, didn't sleep for 12 days, couldn't eat, asthma like attacks, my arm and face kept turning completely white and a million other horrifying symptoms. They were never able to diagnose me even though I made them hospitalize me to figure it out. After a few days they sent me home and I had NO answers. I would have gladly taken death over what was happening to me. I am assuming this was the beginning of the POTS, but I can't be sure. It was so scary, so terrifying... I am so afraid that whatever the heck that was is still inside me and can return someday... and I still want to know WHAT WAS THAT??? I'm sorry to go on about myself -- my point in writing you is to say, Yes, I completely understand wanting to know what has caused all of this: 1) just for curiosity sake and 2) to be certain it won't come back. The more time that passes from the horrible events of 2005/06, the more reassured I am that I am most likely in the clear, but I will never stop searching for an answer as to what that was all about... I just need to know. Plus I think that was a more exagerated version of what I go through now (to a lesser extent) on a daily basis. So there may be clues there. I don't know if you are the type that can be happy you are feeling better and move on.... if you are, maybe you should. We really have no control anyway. I think the more time passes, the more confident you will feel about things. For me -- I want answers.

I am fairly plagued with fear that whatever it was inside of me is just hiding and that I will go through all of that again. I am finally getting a taste of life again and am trying to get rid of the last remaining symptoms, which are a cake walk compared to before. So I am truly terrified of ever going back, and because I never received any treatment, I wonder if something inside of me causing this could just disappear, or if something is just lurking in my cells waiting for me to get sick again so that it can return.

Does anyone else worry about this? At what point do I just accept that I'll never know and move on? Is it worth trying to figure out if something infected me, though I am relatively high functioning? Do I pursue the lyme's treatment, despite its major expenses and the fact that I am improving?

[MamaTrain]

This is a very understandable fear! I have it also! If I have an episode I will just panic that it will not go away and I will be like that all over again for months and months. I have been doing very well so I am always thinking oh please God dont let it come back! Last episode I had was in the middle of the night and I finally just said you lived through it once and now you know so much more so IF it happens again you will survive. I was totally fine an hour later! LOL! Keep thinking positive thoughts and enjoy each day that "IT" doesnt rear it's ugly head!

Hugs to you,

KC

[tommykazim]

Hi all, its natural to want to know what is making one feel ill. Funnily enough I grew up in Africa, in Zimbabwe where I first came down with an out of the blue attack of palpitations, dizziness, chills which kicked off the nightmare that has ensued. I've tried everything, Lymes/ricketsia treatment which didnt help. As other are saying especially with you feeling that much better, let it go. I am struggling now with fatigue brain fog etc and still chasing a diagnosis mainly for a treatment that will work but I'm wondering if whatever triggered my illness is irrelevant and the anxiety with not knowing what was wrong and thinking i was dying etc has done the harm and not the trigger even though I do still get that initial set of attacks from time to time. Some people walk around with arythmias and heart blocks never even knowing they have them not what brought them on. I am going to concentrate now on trying to re wire what has probably become an ingrained anziety which I'm not that conciously aware of. Anyhow enough of me! Move forward, if ever you did feel ill again, worry about it then but that day may never come about so enjoy your health and live life to the full for those of us who struggle to do so!! All the best, Tom

This is a very understandable fear! I have it also! If I have an episode I will just panic that it will not go away and I will be like that all over again for months and months. I have been doing very well so I am always thinking oh please God dont let it come back! Last episode I had was in the middle of the night and I finally just said you lived through it once and now you know so much more so IF it happens again you will survive. I was totally fine an hour later! LOL! Keep thinking positive thoughts and enjoy each day that "IT" doesnt rear it's ugly head!

Hugs to you,

KC

[Guest tearose]

There is so very much they still don't understand about cause and effect with our condition so until the science is understood the best you can do is to live each day as best you can and not to focus on the original first cause. This works for me.

Try to learn what new/recent things are triggers and do all you can to avoid these. Find the best avoidance and treatment plan and practice it. We cannot control what happens to us, only how we respond.

Like all here, I understand the frustration and loss of what life was when we could just pick ourselves up and bolt out the door...now we have to think about our body functions and what we can do to help our body get through the day. Once it became habit, I thought less about all the acclimations and accommodations and focused what good I could do with the good hours of my day.

Please be gentle with yourself as you learn more. I have been dealing with this for 18+ years and I am still learning.

Know that many good days are ahead of you.

tearose