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» LymeNet Flash » Questions and Discussion » Medical Questions » Honestly, how do you stand this disease?

   
Author Topic: Honestly, how do you stand this disease?
sickmate
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This question may sound strange, but after a decade of struggling and feeling worse than ever i just wanna know how do stand the whole madness of lyme?

I mean the combination of ignorant doctors, lack of money, constant pain, non-understanding family, having a totally unresearched, misunderstood illness, missing live, giving up your dreams and so on...?

After all this years and tons of abx and supplements and wasted money I am not even where i was a decade ago after i got sick. I feel more and more like i'm a hopeless case. maybe taking high-dose steroids at the beginning of my disease destroyed any chances of a recovery.

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robbiem
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Hi sickmate

Funny I should pop on here and see your post...as I am feeling similar feelings that you voiced as well.

I so feel your pain.

Maybe it's what I am currently taking -- A-L Complex by Byron White...I thought I was ahead of the game and further down the path healing from all of this and upon taking these drops, I have many symptoms, including depression returning...arggggggggh.

The feelings of discouragement do seem to pass or at least cycle. Sometimes when it comes down to it, the only we thing we can do is look around us and find the things that still move us, that we see some beauty in -- whatever it is that might lift the spirit, as this journey can really keep us so far down emotionally and energetically, which is never a good thing.

So sorry that you are struggling right now. Here's hoping that something clicks for you soon and you find some encouragement in whatever way you can.

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momlyme
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I believe anyone can get well. I was sick for 20+ years... I feel great. Have had 79 good days in a row.

I am big on prayer, meditation, and feeling grateful even when there isn't a lot to feel grateful for. It is important to keep a positive attitude.

Have you seen this free book?
http://www.scienceofbeingwell.net

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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sparkle7
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Yes, I know it's difficult. I feel sad about all of the life I lost to this f-*#ed up illness. I got an e-mail about lecture on dowsing that had someone who was speaking about "Illness as a Pathway to Spiritual Evolvement"...

I wonder if they had to deal with 10-20 years of some of the stuff we deal with if they would still have that attitude? It's hard to stay positive after all of this.

All we can do it try to hang on minute by minute & hope tomorrow will bring something better. It my be a seasonal thing, too. Try to get outside in the light for some time during the day - it may help.

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GiGi
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F u l l M o o n !!!!!!!!! Full Moon!

Means parasites are doing their wedding dance ready for copulation and reproducing. That is the time when most doctors' phones ring off the hook.

Eat cheese and dairy - some ice cream - parasites come out to feast - that's a good time to get them.

It is literally impossible to get totally well with an overload of parasites feasting in the body. And then treat toxic metals! (as if I hadn't said this before......)

Hang on - Tomorrow will be a better day.

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sickmate
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quote:
Originally posted by robbiem:
I thought I was ahead of the game and further down the path healing from all of this and upon taking these drops, I have many symptoms returning...arggggggggh.

Why does this sound so familiar to me...?

quote:
Originally posted by sparkle7:
I got an e-mail about lecture on dowsing that had someone who was speaking about "Illness as a Pathway to Spiritual Evolvement"...

I wonder if they had to deal with 10-20 years of some of the stuff we deal with if they would still have that attitude? It's hard to stay positive after all of this.

Absolutely. Im so tired of being given advise from healthy people who have no idea what it feels like to be constantly in pain.

quote:
Originally posted by sparkle7:

All we can do it try to hang on minute by minute & hope tomorrow will bring something better. It my be a seasonal thing, too. Try to get outside in the light for some time during the day - it may help.

Hope is probably the only thing that keeps us alive. Going outside of course is good for your vitamin D, but cold also makes my symptoms much worse, so i have to avoid it and cant get outside very much.

Momlyme, fantastic to read that you got well after such a long time. What was is that helped you?

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sparkle7
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Yeah, I know it's cold but it helps to wrap up in warm clothes & walk around the block. My sciatica has been worse but I try to do it when I can. I think it helps just to get outside.

I did get well a few times - so, it is possible. This illness comes back so we have to try different things to keep fighting it. Sometimes it's parasites, sometimes it's metals, viruses, bacteria, pain, headaches, etc... We just have to keep going after each issue.

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sickmate
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Sparkle, I also got nearly well several times with longterm rocephin, but relapsed terribly each time - as most of the people on rocephin do.

But the last time I got better was 2007! Since then Im only crashing!

Maybe going outside is not only good because of the vitamin d, but also because of the fresh air that gets inside your system.

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dbpei
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So sorry sickmate. It has to be so discouraging. It is disgraceful that our healthcare system has NO understanding of how devastating this disease is for some.

If you can at all get outdoors, breathe in some fresh air and soak in some Vit D, I agree that would be so good for you. If you can resume an interest in something that is totally unrelated to Lyme, that would also be a good thing for you.

I know how hard that must be when you are in constant pain. Would you be able to escape into a good book, enjoy some music, or even playing some solitaire on the computer? I know these are probably lame suggestions, but a diversion can be a healthy way to break the cycle of sadness and depression over this awful illness.

Do you have the support of a good lyme specialist? Maybe seeing somebody totally new would make a difference for you. I guess if you have been sick for many years, you have probably exhausted the supply of LLMD's in your area... but if not, now would be a good time to perhaps make a change.

Sometimes, it is a matter of treating something like parasites or heavy metals that have been missed along the way...

Would you consider trying herbal anti-microbials like Byron White herbs or Samento and Banderol? They help to boost your immune system in addition to killing the bacteria. A LLND or integrative practitioner could help you with this.

My heart goes out to you. You are not alone and I hope that by looking at some of the posts of people who have gotten well after many years, you will feel a little more hopeful.

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faithful777
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I too took steroids before I knew what was wrong with me. I have been where you are. I have also at times felt hopeless crying over the life I lost.

Finding a good LLMD with an integrative doctor also on board to help with the other issues like adrenals, thryoid and hormones will greatly help.

As far as the ignorance of others, we all hope and pray that some day they will be enlightened by the facts about Lyme. Hopefully, they won't find out first hand by being infected.

It has been mentioned in some of the above posts that you must find a place in your mind to be calm and grateful for what you have. It is hard to be positive when the money is running out and you feel terrible but you must find that place to start the upward climb to wellness.

My husband and I both have Lyme so we are battling this all the time. People do get better and you have to hang onto that.

Sending prayers your way.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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daphnesmom1
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Honestly, I think this is one of the most f'd up situations people could ever be in. I was dx in 2007 after at least six or seven years misdiagnosed, when I now know Lyme was creeping into my life.

I wish someone from the CDC would log on this board and read what is really going on. How do normal, hardworking, energetic, progressive people get reduced to this?

I know people get better, because I have felt better for spurts, but than people get "un"better again.

It steals a little of my soul each time it tricks me and takes me back down the hole again. Just like all of us. I still sratch my heads and ask how, in this day and age, in the US, a medical situation can be this far out of control?

(sorry for the rant)

--------------------
"Yeah, I miss me too."

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lymeboy
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Yea, I won't last like this. After 3 years of hardcore txing, I'm almost out of hope
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robbiem
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Agree with daphnesmom1---

In my heart, I believe that the CDC, as well as our gov't knows exactly what is going on!

I hate to sound like I'm one of those people who is fanatical about conspiracy theories here, but seriously --- none of it makes any sense whatsoever.

- Doctors being harrassed or worse for treating

-IDSA lunacy

- Typical response(s) given by 90% or more of the medical establishment when presented with the idea or facts that you have or may have Lyme & co.

-inability to find the proper treatment, understanding, etc upon walking into an ER

- Inability for anyone to collect disability....

-Bizarro reactions from associates, friends, family and most often still misinformed about Lyme. And don't bother mentioning co-infections...part of this I believe is due to lack of real media coverage

-lack of accurate diagnostic tools

-lack of accurate treatment protocols/medications/research

-lack of funding needed to research

The list as we know goes on and on...

The entire situation is insane. We are being duped and most if not all of us know it inwardly that we unfortunately are dealing with a far greater problem than just being infected ---- because in all honesty we are seeing just how corrupt, deceitful etc those that are pulling much of the strings actually are. "Big Pharma" certainly fits the bill here, and God only knows who else has a vested interest here in not allowing the truth to get out, nor to allow those of us who need it the proper treatment we deserve and seek.

Given the full extent of it all, I have learned to become quite adept at praying -- as at this juncture there seems to be little else. Seeing the vast amount of things not working/working against us---well, I am sure most of you see my point.

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robbiem
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For those who are familiar with the film "The Matrix":

I liken it much to the main character, Neo --- who chooses to take a pill to learn about "the Matrix" the true underpinnings of how our world and reality actually work---- but is told that once he has taken the pill, his life will never be the same (an understatement)

Well, to me Lyme and co. are much like that proverbial & bitter pill as well --- once you get pulled into this --- it causes you to question everything imaginable --- and what you may or may not have once believed about your self, your world, as well as many other things...

Ok. I've gone deep enough for today, folks...just thought I would share. [Smile]

xo

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lax mom
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I have to take one day at a time...sometimes one minute at a time.

I am thankful for the good days, and pray the bad days pass quickly.

Many days I feel like I've fallen down a rabbit hole and can't get out.

If I get too caught up in wishing I was healed 100% today, I become too distraught and pain becomes suffering.

Although we fight and fight to get better, we also have to accept today.

We don't get to choose what life throws at us.

Yes it sucks beyond belief, but thankfully, we are still here to fight another day.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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lymeboy
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At some point the fight isn't worth it.
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map1131
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Never, is the fight not worth it. The thing about changing and looking for other treatment protocols is hard.

It's work on ill patients to find the next course they want to take. That's the sad part. So many don't have a healthcare professional that can take them by the hand and lead them.

Many with lyme & co have to look at alternative treatments once/if traditional medicine fails you. With so different directions to go in alternative once again so much is left up to the patient.

You are in charge of your health and well being. Take a different course. Open your mind and heart on this site and find your next option.

It can get better. It's not over. Next step?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lymeboy
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Id rather live a life than just be alive. I think the hard truth is that some people, a lot of people keep relapsing and do not get fully well. At a certain point, we have to stop spending all of our free time scheduling meds or herbs or whatever is consuming all of our time and energy and have a life. Support our families, enjoy our families. Try to pay the bills. And none of it seems possible in this state.
I am in charge of myself, but unfortunately, Lyme disease is in charge of my health and well being. If I was in charge it would have been gone long ago.

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Lymetoo
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Moving to General Support

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

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