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has anyone of you chronic ever been cured??

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Lyme Disease
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Posted 12/8/2011 5:49 AM (GMT 0)
hi all, i spent the last 2 years without antibiotics. (i have to rest 80% of the time and have nooooo stress, but i was able to keep the bugs at bay). now i am having a mega exacerbation of my symptoms. i am considering doing what i was forced to do for the last 4 years, due to no lld. Hot baths, meditation, yoga,breathing exercises, excellant diet, no stress. 100% relaxation. and wait out the pain and symptoms until they decide to go to sleep again. my only other option is to try and find a lld (which i couldnt do 4 years ago)be totally stress out and aggrevated by dr's ignorance, and further ruin my finances..
i am just wondering if anyone else that has lyme for 15 yrs or more is any better or at least reasonibly functional without continuous maintainance doses of antibiotics. A Doctor in 2003 told me, i should stop searching for a cure and learn to live with the symptoms i have. she said she saw many lyme patients ruin their financial future and spend a lifetime in dr;s offices and not get better.*(i did this for 8 years)
i took her advice and stopped going to dr's. once i let go of the hope of returning to the person i used to be, accepted my limitations, and have had the best 2 years dr and drug free.
i taught myself how to paint and now have watercolor art placed in a sarasota gallery. i am still on disability. cant work more than 12 hours a week. the rest of my time is spent resting, meditation, loving my husband, yoga and being thankful i am no longer in suicidal pain. my life forever changed, but not ruined. anyone else just done with dr's?any thoughts?? idea

Post Edited (letgo) : 12/7/2011 10:58:56 PM (GMT-7)

Posted 12/8/2011 6:24 AM (GMT 0)
There are people here who treat with natural remedies as opposed to antibiotics and other prescribed medications and seem to be doing well. Keeping up a good diet, exercise, relaxation, are all very important no matter what you are ingesting.

I am having these thoughts myself, although I am only starting my treatments - how long will I play guessing games and take pill after pill until I decide to just live with the symptoms themselves? It is a very difficult journey, but it does make you stronger and wiser about your condition and what does and does not work for you.
Posted 12/8/2011 11:26 AM (GMT 0)
It is a crying shame that anyone is told they have to live with these symptoms.

I lived with under-treated Lyme for 25 years. It slowly ravaged my body and mind -- and doctors kept putting it down to the normal wear and tear of living and "woman's problems". One doctor even told me I was "bored" to explain my bone crushing fatigue.

The truth is, not all doctors are true healers. It is wonderful when you do find one. You have to take the lead in your health management and not be satisfied with just "living with symptoms".

Three years ago I was infected again with Lyme, Ehrlichia and Babesia, so there was no living with the symptoms. Actually, there was no living with me, either!!

Now that I have gone through two years of treatment and one more for another infection, I can tell you it is so worth it. My body, while not what it was 25 years ago, is so much healthier and everything works! And my mind is so much clearer -- and best of all, the feeling of calm. I can't believe I let myself lose so much.

There are so many different approaches to Lyme disease treatment, there has to be -- there are upwards of 100 different strains of the disease! I truly hope you continue to look for an answer to your illness. I don't believe you have to settle for a half-life.
Posted 12/8/2011 11:44 AM (GMT 0)
I too have reached a a state of mental wellbeing. I have accepted (finally) the fact that I cannot go back to my old self but as we age we don't do that anyway. With any chronic illness, I don't think we are ever "cured." Learning to live with the disease and keeping the symptoms manageable are crucial with chronic lyme, in my opinion. I have just cut back on antibiotics and a number of symptoms have returned. However, I am still functioning much much better than I was and have learned now how and what to do when things flare up. I love my LLMD so I'm not done with doctors yet. I must say we are spending a small fortune on meds and supplements but its is worth it if that is what is helping me have a clear and calm mind, like Achievinggrace said. That is the feeling I treasure more than anything. I can deal with the aches and pain but the serenity is priceless. Now I have to get my husband to that point.
Posted 12/8/2011 11:51 AM (GMT 0)
Not yet, darn it, but I'm getting there.
Posted 12/8/2011 1:57 PM (GMT 0)
YES! My story is familiar to many here. Now if you mean CURED forever, I dunno yet. I first had Lyme symptoms as a teeneager way back in 1976. I would get these strange 'episodes' after a major life stressor that would last about a year (dizziness, panic attacks, trouble concentrating, derealization - all the classic neuro Lyme symptoms). The episodes occurred roughly every five years and would last about a year when i got them. BUT, the 5 years in-between episodes, I was totally "cured" - every thing normal, all systems go. got Master's degree, worked my way up the crporate ladder - now work for NASA, had three kids and got two through college (my son unfortunately passed away from SIDS 19 years ago). But, all-in-all, I was cured. BUT, back then no one knew I had Lyme - least of all, ME! After a whole lot of tests back then, the docs gave up and attributed all my malady to 'stress' and it being all in my head. I accepted that and saw periodically psychologists and psychiatrists over the years to address my anxiety and depression when the symptoms flared up with an episode because that's what I was told I "had." Anti-depressants NEVER WORKED (because I now know I was suffering from Lyme). FINALLY, this past June, 35 years at least since I first contracted it, I was diagnosed with Lyme. Two LLMDs have confirmed my very long term Lyme chronic status - Igenex testing and bioenergetic testing has shown 3x the amount of Bb in me than even most chronic Lyme sufferers.

The point here is that I have lived 85% of my life "cured" with no symptoms - the other 15% that were episodes were flares. I expect now that I have finally figured out the true cause for those that I will be FULLY cured from here on out. Call me an optimist but I truly believe in FULL CURE. The research is mixed if you read up on it. I guess it also depends upon a person's constituion. PLUS, AND A BIG, BIG AREA OF LYME TREATMENT THAT IS OFTEN OVERLOOKED IS THE EMOTIONAL ASPECT OF IT. I am a firm believer that if you "live the disease" you will not get fully 'cured'. In other words, if you think like a sick person, you will remain a sick person indefinitely. Kill the critters with abx's and/or herbals, detox the crap out of your body, and start to think like a well person and you will be cured....that's my 2c (well maybe $1.02) on the matter.

Post Edited (yazzer) : 12/8/2011 7:05:33 AM (GMT-7)

Posted 12/8/2011 6:06 PM (GMT 0)
I went 3-4 years undiagnosed... after being diagnosed, back then I was scripted for 10 - 14 days doxy... sometime after that I was "undiagnosed"... by the way I never exhibited the classic EM rash.

after a year went by I experienced "massive attack" of flu like symtoms...after some research on the internet, I self diagnosed myself with LD, then proceeded finding MD help... what a "brick wall that was!!!

I was treated off and on for "walking pneumonia" and the like... so, I would get 2wk rounds of ABx here and there... I looked into holistic herbs and obtained some...mostly
garlic, but I didn't stick to a strict regimen. I did take a one a day vitaman and vitamin supp. every day, though.

I actually started feeling better, although I was still experiencing "minor" symptoms... some days I wouldn't have any energy, some brain fog, feeling like I had a "cold". Icould struggle through, though. that was then...

Recently, I was diagnosed with LD again... I picked up a tick that went un-noticed for awhile (they hide very well sometimes) I exhibited the classic EM rash this time... As of this moment I'm working off a 30 day round of Doxy, and this time I'm researching every possible avenue of natural treatment.

such as mitake, and crapake mushrooms mega doses of garlic, along with, garlic, hoseradish, cranberry smoothies, etc. I have sworn of sugar and dairy, and take a one a day along with xtra doses of vit C and B vitamins.... I stick to this as well as I can, I just can't totally cut out the red meat.

I do the detox protocol that is suggested on this forum... this has been very helpful... I have been very sick this time again. I herx every day, especially upon waking... but following this regime. the symptoms are subsiding... I have to think that I'm going lick this thing.

I agree with Yazzer, a positive attitude, and believing we will get well is part of the battle... positive thinking heals, positively... like every other facet of this disease though, some days are better than others... there will be those days when negativity enters... this too shall pass... BUT WE CAN GET BETTER...
Posted 12/8/2011 9:25 PM (GMT 0)
sicktoolong r u currently treating or have you stopped antibiotics?
Posted 12/8/2011 10:08 PM (GMT 0)
well im going to throw this out there cause i feel the need to...but i had been researching docs that take insurance and docs that dont....and seem to have a "half hearted " knowledge about lyme...and infectious disease docs have turned out to be candidate for me to try to get my family treated without breaking my bank...and i have seen others testimonies online "when researching lyme literate docs" that infectious disease docs work with people who are financially strapped and seem to believe in chronic lyme...though they might not be as "go getters" as lyme docs..they do have a handle on the trauma that lyme causes....and i have found three just in my little area that seem to be worth trying....do you live in a big city?....have u ever tried an infectious diseas doc?
Posted 12/9/2011 12:03 AM (GMT 0)
My belief, there is no cure for any illness, but healing. A cure would mean you take a pill and voila, it's gone.
And yes, I can say that I have healed from lyme. Took some time and I need to stay vigilant with my health, but I am well :-)

Once the body is in top shape, the body will eradicate chronic "anything"

Sicktoolong.....Don't give up, find alternative ways to strengthen your body.
Posted 12/9/2011 12:05 AM (GMT 0)
and what WWJ says x 100000000000000
Posted 12/9/2011 12:59 AM (GMT 0)
Alashah, thank for reminding me of healers. i will research them.
SickTooLong, i feel for you. how long have you had lyme? i have felt the same way. luckly i have a wonderful husband who supports and reminds me that i can do anything i use to do i just have to do it differently. do you have a family or a good support group? i have some great books that will help you stay strong and obtain philosophies that will help you learn how to live well with this disability. they saved my life. email me (click the envelope to the left above the date to get address) and i will give you the titles. if you cant afford to purchase them, i will send you mine.
just because some of us choose to accept what we cant change doesnt mean we are giving up. i found that while i was obsessed trying to search for help or a cure i had no time to learn to heal or live with what life has handed me instead of dying from what it has taken away. please dont give up.
Posted 12/9/2011 1:08 AM (GMT 0)
peacesoul, you say you are healed. what does that mean to you? are you healed so you can do anything you want like work a full 8 hour day. or are you healed mentally and have a nice life because you accepted your ld??
Posted 12/9/2011 2:05 AM (GMT 0)
WOW, just read all these posts, great advice everyone, now I have more avenues to explore, and a better out look...SICK TOO LONG...I feel bad for for you, I hope it gets better for you. I wish I could send along some profuond advice, but I'm not an authority on LD... just to the extent that I suffer from it. I do send along my sympathy though.
Posted 12/9/2011 3:43 AM (GMT 0)
I'm healed meaning I no longer have symptoms. I still get days where I get tired quicker, but am fully functional now.
I used to work 9 hr days, take care of my own home and work out every day at the gym and go out all the time, but it all came to a halt when I got sick.

When I was sick and was not able to do much, that is when I went back to school to get my Naturopathic degree cause I was sick of MD's not being able to help me, so I wanted to lean for myself how my body worked.
I left my stressful job and now work from home, in a clinic and am starting another business, so yes, I work often, but not as many hours and don't have a boss anymore ;-)

Sicktoolong: I understand the despair and deep depression that comes along with illness, but you need to fight it. The only way to heal is to fight.
Forget MD's telling you this bacteria doesn't exist. Don't put your focus and energy on the negative side of this illness and what they say, you know it's real, we know it's real so work with that.
Have you tried healing naturally?
Posted 12/9/2011 4:32 AM (GMT 0)
HI PEacesoul, i am glad you are so well!! score one for the green ribbon!
Sick too long i agree with peacesoul. you have to remember who you were before the tick and never forget. a nurse from the NJ lyme hot line gave me this advise and it has helped me keep my mind. i was dismissed, humiliated and degraded by more dr's then i can count." its in your head, lyme disease doesnt do that, you dont look sick," only a few of the dismisive statements lymies endure. but the one thing that keeps me sane is remembering who i was before i got bit one day and woke up someone else the next. my life forever changed, but not ruined im not crazy, your not crazy. i just got a lyme in my coconut and it shook me all up. LOL some days you laugh, some days you cry. but everyday we breath to fight. and if you cant fight call someone who can fight for you. do you have anyone to call Sick too logn? many illnesses out there but people who fight lyme are the strongest, most couragous bunch of people i have ever known. even though we cant spell worth a crap.
Posted 12/9/2011 5:00 AM (GMT 0)
I got sick when I was 12, and spent all of middle and high school going from doctor to doctor, trying desperately to find out what was wrong with me, trying new treatments that my life revolved around, feeling so alienated from my own life...I was also told that chronic lyme doesn't exist - I've been treated so poorly by so many uninformed doctors and my heart goes out to all of you who've been through the same thing - it's terrible!!

For a couple of years during college, I did just stop going to doctors, stop taking any medicine other than the necessities...and it was both good and bad. I think it's just a personal choice we all have to make. Do we want to make all the sacrifices of aggressive treatment in hopes for a cure? Or do we want to just try to manage it? For a while I was told I had so many different conditions that just needed to be managed (CFS, fibromyalgia)...so I guess that played a role in my decision. I thought there was nothing I could really do so I just made the most of it. My life was still a struggle, but somehow I think the fact that I got sick so young made it easier - living sick was all I ever really knew so I didn't have much to compare to.

But things caught up with me. After I graduated from college I went through a lot of stress...going from job to job, cutting down my hours at each one until I was only working 10 unpaid hours a week, and even that was too much. So I guess it stopped being a choice. I couldn't muddle through it anymore. I had to do what my body was telling me to do and stop everything and recover first. I was running on empty.


As far as chronic patients being cured...I agree with a lot of what's been said here already. It's so much more than just taking all the medicine. It takes a huge toll on us psychologically, and can change our entire identity. I think the hardest part is accepting the disease, and the uncertainty that goes with it. Accepting that it might not get better, and learning to be okay with that, while also doing all you can to get better in any way that you can.
Posted 12/9/2011 12:05 PM (GMT 0)
Yes, stress plays a HUGE role in getting better..  I am free of all lyme symptoms for 6 years now (I used alternative medicine plus lots of detoxing which I continue to do - the detoxing part).  

I also had to change my lifestyle to eliminate stress.  Sometimes we just need to make choices to reduce that stress even though it's really scary!!  I know, I was terrified of making these choices, scared of the unknown but I followed my gut feelings and did it anyway.. 

I moved to another state where it's way more peaceful and serene, I divorced my husband (not in that order) and the list goes on.  Today I only make friends with people who have positive outlooks, I met a guy, and I'm really happy!   None of this would have happened if I didn't decide to make changes in my life and sort of reinvent myself...

As far as people not getting better, sometimes it takes work to get better...  Like making detoxing a daily routine whether it's a detox bath, foot bath, exercise routine, learning how to meditate, whatever... But make one small change and the rest will follow..

Hang in there everyone!

Denise

Posted 12/9/2011 1:21 PM (GMT 0)
Lyme in the coconut............hahah! funny

The last 3 comments are awesome!

SICK: you got some awesome advise in here
Posted 12/9/2011 4:20 PM (GMT 0)
Sicktoolong, I'd you ever need someone to talk to, please feel free to email me. I understand how you're feeling, and maybe it will change, maybe it will not. I do hope you find some sense of peace with the hand you've been dealt.
Posted 12/9/2011 5:12 PM (GMT 0)
i am so sorrry. i cried when i read your post. i never ment to make you feel judged..ever. i agree that some of these post do make it sound like an attitude adjustment is all we need, and if we choose to accept our disability is not an amitance of failure or giving up. it takes a lot to let go of hope and live in reality. that was actually what my next post was about SICKTOOLONG, YOU ARE RIGHT! some of us  will never get better. and the thought of you being discouraged because we made you feel even more lost makes me cry. i am glad you said it. you are the only one i have ever heard say some of us never get better and some of us die. my families fininances are ruined we have no financial future, no security. our stories are the same only i got lucky...yes lucky that i was treated long enough to take away my suicidal pain. i can only be on my fee 2 hours at a time. 0% stress. an argument with a repair man is enought to bring out the pain.,and start the symptom train rolling. i wish i could take your pain. i am truly sorry.  
Posted 12/9/2011 9:32 PM (GMT 0)
Letgo,
Sicktoolong is just ready to stay ill. S/he pulls away whenever someone takes too much notice in him/her. Please don't feel bad about anything you said - I just read this whole thread and everyone was just expressing their concern for Sicktoolong. It just got to be too overwhelming for him/her, that's all. Hopefully s/he will be back before too much time passes, to receive the love and compassion that they know is here for him/her.

I strongly believe that the only ones who won't get better are the ones who don't receive treatment. We won't all heal to 100% of course. I have been ill for over 40 years, with the kind of damage these infections can cause, there's no way I'll ever be 100%, but that sure doesn't mean I have to remain so ill that I can't leave the house! I have made some pretty amazing progress as a matter of fact - even though I have only recovered about 40% right now. I know that I am by far not the one who has gone the longest without treatment!! I just use myself as an example because, well 40 years is a long time to be ill.
Posted 12/9/2011 10:01 PM (GMT 0)
Sicktoolong,
You are right, I don't know you, so I could be off base. I was just trying to ease Letgo's feelings of possibly having done something wrong.


You and I have exchanged a couple of emails and I have read a lot of your posts here on Healing Well - that doesn't mean I know you. I used what I knew about you and maybe I was wrong when I stated that you pull away like that - and for that I stand corrected.

But I do understand the position you are in - I was there too at one point.
Posted 12/9/2011 10:05 PM (GMT 0)
Hi SickTooLong,

I don't usually bring this up but when I was at my worse (being bedridden, couldn't walk, needed crutches to get around), I had planned to be done with it all.  I have lived in darkness and I will never forget it...  Somehow I decided to stick around and try another way to get better.

Then I tried to remember what I had in my life that was positive.. I had my dogs..  My dogs were my life, my children.. They were my support system since my own family didn't believe in lyme disease which hurt me very much and took me years to accept.

I do believe that attitude plays a huge role in this disease.  Sure, I had my deep dark days, who doesn't?  I'm only human..  And menopause is no joy to go through right now..  So I take one day at a time.. 

I remember when I was a little girl my Dad had asked me if I wanted to go to this event with him and I did because I loved being around my Dad.  The event consisted of paraplegics and quadraplegics and they had a sporting event.  I was amazed at these guys who didn't feel sorry for themselves but had such fantastic attitudes! 

Then there are people who have terminal cancer who's attitude is fantastic!  The list goes on...

I truly wish you well!

Denise

Posted 12/9/2011 11:28 PM (GMT 0)
Sick: When and how were you dx with lyme? I am not familiar with your story
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