stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
many people feel that if you have a foriegn bacteria in the body, we need to get rid of it.
i believe at the present time, that we may need to rethink the goals of treatment for lyme disease.
i do not believe we have the knowledge , at the present time to :"cure" long term lyme disease. i know everybody trys all these meds and have mixed results.
i do not know the present rate of cure for chronic lyme, but would expect it to be very low. i know you see people leave lymenet saying they are cured. but these same peole come back 3 years lter,puzzled with what happened.
these periods of remission are just that, remission. just as in cancer it goes into remission. you feel great, no meds and life goes semi-back to normal. normal in lymies is a false term ,since damage done in joints, brain and organs may never be normal again.if you don't believe me ask around this site.
many of us have gone into remission only to return with a slightly more agressive and resistant lyme or coinfection. i have not made a decision yet as to whether we can cure coinfection, since they act totally differently than lyme and should be curable. the problem is with dx and correct meds.
i do believe after 7 years of treatment , 3 iv's and years of abx, that we need to get to a remission stage, and stop the abx. many here can not get to a remission stage ,since dx took to long, and everybody is individual in treatment and symptoms.
i think we can live with bb in cyst forms dormant in our bodies without major harm. i also believe that we may be doing more harm to our bodies, busting these cysts and releasing the heavy toxins released from cell destruction.
i am now in remission, not cured,and know i am not cured. when under stress ,my body goes back to the disease form. i treat full force with all my weapons for ten days then assess the outcome. i take ten days of zithro or vantin, plaquenil, acylclovir, vfend, lots of probiotics and change my diet.
i am now able to treat the lyme like a cold. it seems this puts it back into remission.
yes i do have lasting symptoms and destruction. knees, mitral valve prolapse, high psa, kidney stones, neuro problems. most of these are being treated separately now, and not in conjunction with lyme protocol.
this is just my oppinion, and what i do at the present. future treatment for lyme and cure will be in the form of gene therapy and immune system development.
As with AIDS, herpes,EBV and others , i do believe we might be best to treat in terms of these diseases ,rather than for a cure
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Remission to the point of being able to function is the key at this point.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
To be able to enjoy life again*)!*)! That was my goal- it had become just unenjoyable, too much pain.
Cavey's post says it for me now*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
cave76 Member # 835 posted 30 April, 2007 10:22 AM -------------------------------------------------------------------------------- 1. Hope for 'cure'
2. Hope for long term remission
3. Hope for many short term remission[s]
4. Accept feeling better
5. Then start at #1 again. _________________________________________________
Ditto Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
1. Wake up without a Lyme hangover
2. Wake up with a real hangover after a night of hard partying with Doc Dave on his '150 yacht, The Donald, Melania, Paris, Angelina etc etc etc.
Posts: 1010 | From Mars | Registered: Feb 2004
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I cure, I don't know. Years ago I thought a cure was surely possible.
After a relaspe in August and symptoms that almost killed me I would settle for a really long remission once again.
This disease is so much bigger than me alot of days.
I don't even know about stabilty some days. Day by day is how I take it. I am so thankful for the good days, and those good days are my encouragement to keep fighting.
Earlier tonite I grabbed both of my sons, and we prayed. My oldest, who is 14 yrs old, prayed that all the people with lyme disease would be cured. His exact word.
I am hoping for answered prayers tonite.
I am so thankful for this board because when this disease is taking a toll, on my body and mind you are all so encouraging and help me feel that there will be stability tomorrow.
Posts: 175 | From Pa | Registered: Aug 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Remission, and the smarts to not overdo it and get sick again.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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ByronSBell 2007
Unregistered
posted
I like to think there is a cure it just takes alot of work. You have to think about it, there are alot of treatments for lyme disease out now and if you combine alot of them I could see "cure" written on someone's forhead.
ABX Herbs Rife Oxygen Magnetic Pulsers Beck Protocol Salt/C "New" hydrocloric acid treatment list goes on...
Seems to me over time if you combined several of these and used them for a long period of time that it could/should erradicate all the bacteria... Just my thought, hopefully the day comes for me!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I continue to "hope" for a cure.....
I am looking forward to remission.
I pray for all involved and continue to be affected by this/these horrible, horrible disease(s).
I want to be able to take the minimal amount of drugs/meds to feel well....
I can deal with having this come back in my life....if I can have some life without it.
I will NEVER, EVER take my health for granted again....
I guess what I am saying is that I will revel in the good days, muddle through the bad ones and
keep on hoping that one day there will be a cure or a standard
of treatment that can keep Lyme in remission.....for good.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
With Columbia Research Center opening up...this is a good start.
With ILADS sharing and having the annual conferences...this is a good piece of the puzzle.
With personally knowing a person or two who had gone from being bedridden and in pain to recently going to a conference and being able to take daily showers and function normally at the conference...this gives me hope.
Since coming down with this in Oct. 2001 and not being able to work or do household chores for the most part...
I am beginning to wonder ....
Am I improving or am I just learning to adjust?
I believe I am improving. I also am not waking up feeling like a truck ran me over during the night after years of having this happen.
...I just know I do not like this and I have trouble accepting that this is how things are to be...
..especially when my own lyme doc is now living a normal life after told he had MS and treated for it for 5 years and then finding out he really had lyme disease and was treated for it 3 years or more.
...I am rambling here.
...It is a good question. As when I first came down with this...
..I would like to see data collected and stats.
..I know they are just stats but it would be of some help..a possible guideline to help others.
...we all have heard of people who knew people who had lyme disease. Same story...took a long time to get a dx...long time for treatment...but they are living a normal life now...even after being in a power chair for years.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
shaz hit it on the nose!!!! remission and control. i do believe however, if you can get into remission, exercise is very very important to maintain remission.
exercise increases endorphin, serotonin and norepinephrine levels. these are all used to increase the immune systems response to a disease. it increases the "fight or flight mechanism" the body has to treat itself.
if it were not for my knees ,i would be out playing tennis to lose weight and suppress the disease process. this worked for me for two years prior to a major relapse due to stress.
this exercise must be started in a low stress environment like a pool. it takes months to get strength to go to normal exercise, and must not be rushed i presently can not walk steps, but i force myself every day to walk 40 steps up and down. yes it hurts, but it is getting easier and easier every day.
my orthopod said i would never jog again. he also said i would never play tennis again. well he is wrong about tennis. i did play for a half hour yesterday, wasn't easy but lyme is not easy. postive attitude is the key. i had a post 2 months ago ,where i felt like i was going to die. these wonderful people here helped me through the crisis.
ps. yes i do have a 150 foot yacht, and also a 50 foOt boat donnie and paris are there all the time. donnie brings the dom paris brings paris. one day i'm going to throw her over the side. and of course the infamous Lear Jet, which caveey calls my LEER JET. sorry to disappoint y'all but just living in West Palm Beach doesn't require you to own a yacht or jet. if i had that much money i would open a lyme center for free treatment, not buy a silly yacht. money has no importance to me since lyme disease. only the desire to find a cure and get people better.
i work doing research, but a lab would be wonderful. maybe i'l call fallon for space at his center. i could go up for the week and home on weekends.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I just want to get rid of the seizures, sensitivity to stimuli, and fatigue and get back to teaching. I don't care whether it is called remission or cure--I just want to be normal again. And I pray this for all those here. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Katcon, your 14-year-old's words got me all teary-eyed. How wonderful he has such sympathy for others.
For me, remission seems like a dream and a cure impossible. I hate to sound pessimistic but I've been so sick for so long with very few periods of significant improvement.
It is very hard to get to a place of acceptance and I'm not there yet.
Yesterday my joints and muscles were screaming and I had a splitting headache but I could walk so I cleaned my yard and felt "good" about it.
Functioning at 50% and accomplishing a few tasks sadly seem to be enough for me now. But on my bad days - when I'm bedridden and miserable beyond words - that's when I cry, feel depressed, and know that I want SO MUCH MORE.
I'm rambling now. Just wanted to share and shed another tear.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
caveey: i got my tire tracks from all the trucks and trains that ran over me in 14 years.
lliny: its ok to be mad, it ok to be mad as hell this disease, which gets no money per se for research, has destroyed your way of life. you must try to find the best that you can even on your bad days. try to read Kam's post in general, she was a teacher also in california. every good thing that happens to her she enjoys to no end. she makes it a habit of enjoying life to the extent that she can. in the last month she has received gifts of a new computer, a used car, repairs to her scooter and she is like a child again. she is in total misery , but finds it in herself to enjoy life when she can. she does not look at what she lost , but what she can do on any given day.
she posts her diary and it is heart felt how she handles her lyme and her other problems.
you, unfornatrly can not bring back your old life, so you must make do and exist in the life god has now given you.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I like the term 'Peaceful Coexistence' which is where I've been for the last 2 1/2 years. When people say I've been cured, I quickly point out the error of their ways. I will never be 'cured' - I just went too long untreated.
But I'll take peaceful coexistence any day over where I was. It's not a bad place to be at all..
-------------------- 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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posted
If I hadn't believed it would cure me, I couldn't have stuck with the dreaded flagyl for 6 months or calmed my fears about ketek enough so it could have a chance to knock the critters out of my system.
However, after much progress, I now believe that we really can only manage this invasion, in my case. But I still hope for a cure.
My LLMD would like me to give IV a try, since I have tried virtually every other oral combo. But since I went untreated for 8 years, and have spent another 8 as an informed and dedicated patient, I am hesitant to invest more in what I suspect will leave me in the same--pretty good, but not cured place I am now.
On the other hand, when I stop abx completely, the knee, or shoulder or hips or some new problem becomes serious. For someone who never even took tylenol before the tick bite, it has been truly difficult to find myself on so many abx.
My LLMD thinks the jury is stll out on Rife, so for now, abx seem to be a necessary evil in managing this disease. He says I am "abx dependent", and this may always be the case, though I hope not.
However, I do believe some people can be cured. For the rest of us, who went too long untreated, I still think there is hope. Just not in the immediate future.
Best wishes.
Ann
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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