I just realized how many folks here are or have been on long-term abx are still suffering, including myself.
Yes, it is the only thing that helps...but I have no idea how many have been cured.
I can also see that reading our posts could work in favor of ducks saying long-term abx doesn't cure us.
My issue is, if the abx just stems off the worst symptoms, why are we spending so much effort, money and time to keep this a therapy for us?
Please take this in the spirit in which it is given.....I'm sick. I know it. But 2 years of abx and IV haven't cured me. It helped for a while, but I'm almost back at square one again.
I want to push for a cure instead of battling every medical person I know for more abx! Why aren't the medical community, researchers, and gov't trying to find a cure for us?
I'm just wondering if we're fighting the right demons? Hope this makes sense....I'm very lyme brained tonight.
Women with breast cancer don't ask for a drug, they demand a cure. They got a lot of public and media exposure by pushing the motto "RACE FOR A CURE".
Maybe we should be doing the same? Except for us, it might have to be the motto "CRAWL FOR A CURE". (Seems to fit the danged crawly ticks and what they have done to us all).
How many of us need canes, wheelchairs etc? I know that I limp from the pain. Maybe we should focus on getting attention on how immobile this disease makes us at so young an age?
If abx helps many, I'm all for it, but it is just an aspirin as opposed to the lymotherapy we need to get well. Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey to...
You said.. "Women with breast cancer don't ask for a drug, they demand a cure. Maybe we should be doing the same?"
Before we can "demand" a cure.. we first need to have better tests.... to see who has it... and if it is cured once we are treated.
Then we need doctors to be educated in this field so they can address the situation.
We also need to be able to identify any other organisms that may be affecting us... and find something to address them too.
We also need whatever we currently have here and there to keep us going until a true universal cure is found.
It may take YEARS to accomplish those goals... if it even can be done.
Personally I don't look at antibiotics as a cure for me. If they actually cured everyone.. you are right... I wouldn't be here.
What I expect now.. knowing I've had multiple tick borne infections for years that weren't diagnosed or treated properly .. is to first not get worse, if possible.
Then.. if I can get to a better level.. that is good too.
But I can't possibly expect a cure after all this time and all these infections. If I did I would be setting myself up for disappointment.
Just like women with cancer.. they HOPE the meds that are available will cure them.. but they never know. They too are subject to a relapse... and may require more treatment... just like we are.
So I do think it is something each of us must learn to live with and adjust to on an individual level. Otherwise..
Are we searching for THE univeral cure that hasn't been invented?
If so.. we are setting ourselves up for failure.
We must be realistic. We KNOW antibiotics have helped MANY MANY people... but no one has all the answers. Not yet.
More research needs to be done.. but without our antibiotics.. who will be around to try to get that done?
Does that make sense?
Please don't feel as if there is no hope. There is.. but I find adjusting my surroundings and available treatment protocols to fit my own situation is the best thing I can do to improve my existance and daily life.
I just don't feel like, after suffering for 15 years that I have much time left.
I want to SHOUT OUT AND GET MAD! I want to tell people, "YOU DON'T KNOW WHAT THIS FEELS LIKE", "WHAT IT DOES TO OUR LIVES" etc.
I'm feeling a little fiesty tonight. Unfortantely, it will likely mean I'll be in bed all day tomorrow recuperating for this adrenal surge. Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I completely understand what you are saying.
There were days I wanted to die and I felt I just couldn't "do it" any more.
But.. as Lyme and fate will have it.. no matter how bad I wanted to die.. or even how much I thought I was going to .. want to or not..
I didn't die.
My point?
Lyme does "this" to you.. and does "that". It makes you want to fight sometimes.. and want to give up others.
But it is LYME! It has a mind of it's own. A screwy one at that.
It doesn't play fair... and there are no rules.
When I want to get better.. it won't let me. When I want to die.. it won't let me.
It basically sucks.
Try not to let Lyme disease be a road block on your path through life. Step around it.. crawl over it.. sneak under it if you must.
But never ever ever let the tick win!
YOU be the boss of it. It can only bring you down if you let it. DON'T let it rule your life and take away the simple pleasures.
We NEED you here.. and we WANT you here.
And together we can make it.
And after all.. having Lyme does have it's advantages.
It sure beats being born with 16 feet.. four purple noses... one left arm sticking out from your mouth... and 31 ears that can't hear.
posted
there are many serious conditions that do not have a regimented road map to resolution.
Lyme (and resultant complication) literate-care is an opportunity to be diagnosed, identified - and treated.
all experienced LLMD's readily admit that the abx regimens are no majic bullet. these treatments, however, do work for a considerable number of patients and children -- often requiring the long term committment. despite the atounding lack of research funding -\these docs are operating on the cutting edge of treatment options available to date.
LLMD's are the first to admit more rersearch (resulting in better treratment options) is desperately needed.
the fight is more about keeping them than knowing the exact mix of medicines that will providew guaranteed results. if we loose them, and their experience - the odds for a better cure for complicated cases drop to zero.
the game plan is: * fight to keep them practicing * oppose the IDSA bullsh$$t guidelines that deny the existance of the disease * support continued practice and research that acknowledges and treats the condition * work daily on your own quest for wellness
the difference with this and breast cancer RACE FOR CURE, is that breast cancer was, by then, an accpeted serious disease.
we must accomplish that gain re: Lyme before hitting the streets demanding a better cure. this acknowledgement will pave the way for just that.
hang in there. this is a multi-systemic condition in the chronic state.
we, personally, have found that many supports and health focuses (both western LLMD and other) were necessary and EFFECTIVE, in addressing the cascading effects of the disease and treatment.
without the LLMD's and their basic guidelines for treatment, we would have been totally damned.
it just ain't a black and white issue. but you can get well. YOU CAN GET WELL.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I get worried when people say, "Antibiotics didn't cure me."
They help most of us, for certain. They kicked my disease back into remission. They brought my son back from the edge of being commmitted to a mental hospital.
Are antibiotics a cure? Probably for some, definitely not for all. Are they a help? Most definitely, for many.
And now IDSA wants to take that therapy away from us. They also want to take alternative therapies away from us. They want us to take pain meds, steroids, antidepressants, antipsychotics, have surgeries -- you name it, with all the side effects those entail.
Look for a cure? You betcha. But don't let them take away the only things that are working so far. I cry thinking of where that would leave us, you me, and my son.
Take care,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey their poor house...
I understand why you're angry...but like tree says...this disease can take you on an emotional roller coaster ride...
I for one know that for a fact...and if you read my posts...you can tell when I'm ill or not!
Too bad I never realize it!
Anyway...open ended abx therapy like Dr Fallon in Columbia has been testing is the only REAL research I know of at this time...
Other than first hand knowledge of my own condition and approach...
No I'm not cured...and I'm down here in Florida cuz up north in Cleveland I was always crippled in the winter time....
OR...because thru extended abx therapies I have actually killed off some strains that have crippled me in the past...
Like others have stated....for some this therapy works... For others(and we don't know why yet) it does'nt.
We just keep living to eventually find that magic bullet!
You're right about being more vocal...but this disease itself keeps us apathetic due to it's debilitating affects on us(CFS,fibro,MS,ALS, etc)
We need others who are WELL to get involved in our fight!
So hang in there......
I was once a veg on the couch...I'm not cured yet but I've at least rejoined the animal species.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There are other issues in the new IDSA guidelines that we are also battling.
First, many more people will be chronically sick because the guidelines do not provide adequate treatment at the time of infection. I know we want to fight for ourselves, but we also have to fight to keep others from ending where we are.
Second, the guidelines deny the existence of a persistant infection. They claim the Lyme is cured after 4 weeks of antibiotics, and after that there is no infection to cure. So that would stop any attempt at research for a cure.
Third, for those the guidelines admit are chronically impacted, they not only don't call it Lyme (they call it Post Lyme Syndrome), but the limit who can even get that diagnosis. Most of us wouldn't because you need a doctor confirmed EM rash or a CDC positive test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Me and my sister are MUCH BETTER after taking long term abx. I am sooooooo much better then I was 2 years ago! My sister has been on abx for 5 years and her Brain Spect went from Moderate to Mild, so if thats not proof I don't know what is.
I had stopped abx after a year on them because my stomach couldn't stomach anything and kept throwing up.
Now...I feel as if I have reached a new level towards Alzheimers...it has saddened me tremendously to feel this way and to have a looming sense that my brain is going to completely close in on itself.
For those doctors who deny the existence of this disease...
I point to those who are dying from it, to the recent man who died in his sleep.
It is more than not having a cure, as many diseases don't ... it is the fact that
it does not even seem to exist.
Sorry for the sadness, it is where I'm at right now.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Perhaps I should remind you that our great LLMDs on numerous occasions told us that 70-80% of chronic Lyme consistently got better with abxs and the average time of treatment was about 3 years.
This site attracts more chronic cases because these who feel better do not have reasons to come here.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
I went 42 yrs undiagnosed, took abx for 4 yrs and am now doing GREAT!
I also took heparin, balanced the hormones, took armour thyroid, babs meds, did Rifing, and take Xango. Don't rely on ONLY abx to get well with.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
There is no cure for aids, they treat with expensive drugs and the end result is the same. Some do better and some do worse.
The point here is that for late stage the patients should demand the option that their Dr's can TRY what ever they can to try to effect a cure or at least a recovery. It does not matter if it antibioics or a bath in radium wells spring water, the option should be there.
In the early days of aids, EVERYTHING was tried and was availalbe at mainstream medical institutions. Most where under the banner of experimental. In the end certain protocols ended up being better than others.
In the case of Lyme, to a large degree this same process was repeated (HBOT, herbs etc), unfortunately the best protocol ended up being antibiotics.
This caused 2 big problems. It runs counter to that the IDSA has been saying about antibiotics (less is better) and more importantly
NOBODY IS MAKING A LOT OF MONEY ON A NEW BLOCKBUSTER DRUG
with the result that nobody is pushing a specific treatment option.
One thing for sure, if there was a new cocktail of drugs that would help lyme sufferers or even cure the disease and money could be made on it then it would be pushed like crazy.
The LYMERIX vacine was supposed to be the retirement program (ie. retire multi multi millionaire instead of as a retired univerity man) for the current antilyme group, but the whole thing blew up in their face. You can be sure that they would say that lyme is a terrible disease and you better not get it so take this vacine...Boom... that idea is now gone.. So lets see whats next..
Ahhh...lets set up labs to do testing...we can make lots of money there so lets offer highly accurate testing... BOOM... that did not work.
Ok Crap... now we spent all this time on this and we have no way to make money on it..... Not looking so good now....
...I got it.... consulting fees...
and we all know the result of this one.
The history is all there one just has to look for it. One thing is very fortunate in the world of science and medicine... things can be forgotten by some, but can never be unwritten. I am sure that this is particualarly troubling to those who have changed their story and their REVENUE model over the years.
------------------------------------------------
Unforutnately we are all stuck in a hurricane in a sea made of bu11sh1t.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
I have to question the possibility that the disease may be twofold in that there is a pathogen and posssibly an immune system defect that perpetuates the life of the pathogen.
posted
Maybe not so many as it seems if your only measure is the online lists. Those who are doing well tend not to frequent the list...they are too busy living.
Long term antibiotics got me back to work. (I am 9 years down stream now...and only on intermittent abx at this point) But I can sleep without pain & jerking awake with a hyper feeling, stabbing & burning pains are gone, The banding is gone for the most part and I can sleep in a bed again instead of my recliner. My neck is only intermittently stiff now. My feet no longer hurt and my sinuses have cleared and the head pressures are mostly gone. The pain in my R ear and jaw are gone. My fasciculations are gone. I rarely have a die off response to abx now.
But...The antibiotics don't do the same for everyone in our support group despite the fact that most do improve to one degree or another.
My thought is that the variables are many: our individual immune systems being at the top of the variable list. Then there are: spirochetal strain, coinfections, infection load, and where they go in your body. And then there is always the possibility that other things non-lyme are contributing to the whole shebang.
Antibiotics kill the spirochetes thru time...but other things might help too. Keep looking ...and research well before you jump into anything.
Posts: 101 | From CA, USA | Registered: Jan 2005
| IP: Logged |
Cobweb
Unregistered
posted
Bottom line?
Start making plans now to join us for the Lyme Rights Rally on November 30th-your life may depend on it. I have made provisions for my children to be looked after for three days so I can go.
Wednsday Eve I am staying with a friend close to the bus stop,Thursday is the trip, Thursday night I plan to spend the night with same friend so I can drive home in daylight the next day,Friday.
I can sit on a bus an ache as easily as I can at home I figure. And I'm hoping adrenelin keeps me going Thursday. Besides-it puts some eternity here on earth into my life-maybe I can make a difference-not just for my children but for my children's children.
I don't know how my lyme treatment for me is all going to turn out- but I remember the direction my life was taking before treatment.
I'm not going to let the IDSA flush the toilet on me.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[shake]](graemlins/shake.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Mad]](mad.gif)
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[woohoo]](graemlins/woohoo.gif)
![[toilet]](graemlins/toilet.gif)
Printer-friendly view of this topic