you? someone you know? lets make a list. i dont know anyone.
Posted by scorpiogirl (Member # 31907) on :
Amy Tan (Author/Writer) Brooke Landau (Newscaster) Many Hughes (Under Our Skin) Dr. David Martz Jordan Fisher Smith (Under Our Skin)
Posted by AZURE WISH (Member # 804) on :
If my menory is right
roadrunner (a member from back in the day - i am not sure our archives currently go back that far)
Posted by ktkdommer (Member # 29020) on :
I don't look at IV antibiotics as a cure to the disease but part of the treatment that leads to a cure. How does anyone ever say that IV was the cure? You couldn't have any other variables then.
My son is so much better after 10 months of IV antibiotics. He might still be in bed and in pain without them, but I will never really know. He isn't cured but boy did it help. The next year will be the hard part.
How many years have to pass to use the word cured? Is it remission?
Posted by lpkayak (Member # 5230) on :
i remember roadrunner!!!! long time....
Posted by pepperspeck (Member # 18837) on :
I remember roadrunner too. I am happy to hear he is well. (and the others as well) Posted by AZURE WISH (Member # 804) on :
he has a post on sucess stories along time ago (in genral)
probaly if you went through sucess stories you would probaly realize alot used iv before getting well
Posted by missing (Member # 22437) on :
Sounds like I really need to fight to get I.V. treatment.
If your son is out of pain, and I have been screaming from pain!!!
even after almost 2 years of treatment, I am still crying and screaming from pain.
I hope that I can go on I.V. soon.
Posted by AZURE WISH (Member # 804) on :
missing - people do get better without iv too. and their is no guarentee with iv. i am sure there is a list of us who have had it and are still sick.
Posted by LSG Scott (Member # 21624) on :
iv did not cure me but probably did give me my life back so is iv good? Absolutely and it has been a Lyme Game changer for a lot o people
Posted by AZURE WISH (Member # 804) on :
but there is alot of people that have had iv and remained sick to. Its not a sure thing.
(i am not against iv or antibotics at all.))
Posted by TerryK (Member # 8552) on :
There used to be a poster on here who did IV rocephin for 9 months and went into remission because of it. Her username was CaliforniaLyme.
The pain makes me scream and cry. I just cut back on my meds because when I increased it the pain got much worse.
I will try again to increase the dose.
Apparantly, yes, if i take my high dose of antibiotics and take Zith. with it, it will make the antibiotics work better.
I am going to try Silver Sol. as soon as I get it.
I will report back.
It would be cool to have some people keep track of all who were cured or in remission, how they got there, and how they are doing now.
I would love to see charts and graphs and everything.
I love stats. but we also need to see those stats. so that we can be encouraged.
Do people herx. when they do I.V.?
Do you have I.V. everyday?
Are you bedridden for a couple of days after?
Posted by scorpiogirl (Member # 31907) on :
I'm on IV... for almost 12 weeks now. The first week was hard w/ a lot of nausea. Then I got used to it and it was GREAT!! Invanz reduced my pain level by 70% so that is a good drug for me. I drip that once a day (30mins).
Then 2 months into it we added IV Zithro. Since we pulse this it was much harder for my body to get used to. Just when I feel like ok, I can handle it... and it's time to stop. Then the start up again was hard.
This month we added IV Flagyl and I don't know if the combo of the three or the fact that I started Flagyl, but I'm herxing really bad right now. This last week was the worse I have felt since starting treatment! I thought I was going to die!! I am on my off days now I hope the herxing will subside!
Posted by willbeatthis (Member # 31111) on :
LSG Scott- great feedback.
Scorpio Girl... hang in there. I think it helped my friend in Atlanta and now she does orals and is really getting her life back...
I am now considering IV but will let my doc determine what is best.
Thinking of you all... I think we are all willing to do whatever we must to be done with this... Blessings everyones way...
Posted by lipanz (Member # 13788) on :
quote:Originally posted by ktkdommer: I don't look at IV antibiotics as a cure to the disease but part of the treatment that leads to a cure. How does anyone ever say that IV was the cure? You couldn't have any other variables then.
My son is so much better after 10 months of IV antibiotics. He might still be in bed and in pain without them, but I will never really know. He isn't cured but boy did it help. The next year will be the hard part.
How many years have to pass to use the word cured? Is it remission?
In ref to your last question right above: One does not know in ref to amount of yrs that have to pass to use the word cured. I would even more likely say remission. It can reoccur years later. Things such as extreme stress, death of a loved one, sudden change of immune system. There is no set answer for your question.
Posted by samsy (Member # 6518) on :
I did a multitude of IV antibiotics over 22 months and now am maintained on B.W. products. I wouldn't say I'm "cured" but I am at least 95% better. Getting my metal amalgams removed by a biologic dentist was also a component in restoring my health. Prior to having them removed, I still had some brain fog which is now gone.
Posted by Brussels (Member # 13480) on :
TerryK,
I knew Californialyme, she said she was in remission from symptoms but she was on oral amoxilin (or other abx) FOREVER. Without the oral abx, her symptoms returned.
She calls that remission, remission of symptoms yes, but NOT remission of treatment as she needed orals to keep her symptoms low profile.
---------- Kari,
Remission or cured, it is like herpes. If you got no active herpes, you live your life like being normal, no herpes symptom.
Herpes can though come back from times to times, and they you get symptoms and need treatment.
Remission or cured is exactly the same during the no-symptom, no-treatment period!
If you stay without symptoms for just one week, one month, well, it's not good enough as you got to re-start treatment.
For me, remission starts from day 1 of symptom free AND simultaneous treatment free. If it lasts more than 6 months, it's already a big step, specially if these months are in winter.
Certainly 6 months is already remission, to my view. Even 4 months!
But only after longer periods (longer than 1 whole year), without having return of symptoms, that you feel your body is getting stronger, probably stronger enough not to fall sick again.
Whatever you call it, if you don't have symptoms nor need for treatment, life is like before, so cure or remission, you choose the word you like.
I don't think people keep saying 'I'm in remission of herpes' while they don't have active herpes. You just forget about herpes during the non-symptomatic time!
For me, it was winter or stress that brought my lyme active. Or a new tick bite, of course.
Just don't worry about how you call it. Concentrate on being well. When you reach like Samsy, 95%, your hopes of living a symptom-free life go skyrocketing and are much more real. You start to see light at the end of the tunnel.
The only problem is that the rest 5-10% takes much longer to heal (in time) because it is the difficult part we couldn't solve in all previous treatments.
But when you feel 95%, well, that doesn't matter much, you ALREADY feel good and you just keep looking for the final 5% solution!
When you find that solution, then you may start worrying about how to keep on symptomless, treatment-free for longer and longer.
It's also a bit difficult as you don't have symptoms to know if you are going on the right track or not for prevention of relapses!!
Most people improve with any treatment they choose. Not many go to total remission though, that I know. But many (or most?) improve substantially to the point of living their lives next to normal. At least that's my general impression.
Posted by missing (Member # 22437) on :
Maybe I need to go on I.V.
It has been 18 month, with lots of improvement, but the pain is still intense and horrific.
So, I will try to get on I.V.
My LLMD approves, but I don't live close to him, so I have to find a doctor who will help me.
I have a really nice adn compassionate doctor now. He believes me! HE is so nice! Finally.
Posted by DolphinLady (Member # 6275) on :
In total remission, I know a handful including myself. I know many others who have gotten better.
Posted by 4Seasons (Member # 14601) on :
My teenage daughter is the poster child for deathly ill to symptom-free in 3 1/2 years. IV abx were a part of her treatment (Invanz helped her the most). But there was soooo much more involved, especially in the area of detox, until the IV abx could do their work.
She's been off abx for about 7 months now. Winding down on the two herbals left in her protocol. She's 16 and feeling great! Her WB (IgM) is still positive, but her immune system is working well enough to manage the bacteria load (CD 57 - 208).
I am making slow progress on IV myself, but again, while addressing other issues (mold, parasites, methylation, etc) and in conjunction with herbals.
We have some tough cases in our support group and I can't recall anyone who improved dramatically JUST from IV.
IV is really expensive. I wouldn't even start if you can't figure out a way to sustain it for several months. Bicillin shots are a less expensive alternative if orals aren't cutting it.
Posted by AZURE WISH (Member # 804) on :
like i said iv isnt a guarentee either. i hate to see people lose their life savings or go into crazy debt to do a treatment they thik is definetitely going to be "the answer" a way out of the horrors of this disease.
Sometimes it helps and people get better. sometimes it helps and people get worse when they go off. Sometimes it doesnt help.
If you started a thread of who had iv and is still sick, i am sure u would get alot of posts.
also if you did a thread on who got better and didnt use iv ...once again you would have alot of posts.
I am not against iv or abx in any way. I have just been around awhile and i know there doesnt seem to be a sure thing that works for everyone and i hate to see people and their families invest EVERYTHING and then some (financially, emotionally, mentally, and health because there are risks to iv in itself) and not be aware that it might not be the salvation they were hoping for.
Posted by lpkayak (Member # 5230) on :
i agree with all you said azure...i think this thread is good cuz it is showing all sides and those who wonder about what tx to use can see all sides here
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