Is it possible to cure Chronic Lyme or not? I've read both. Some say "Yes, it is possible & others say no."
Some say don't even attempt to treat if you missed your window of opportunity because you'll only make things worse.
I wish I knew the answer.
Kayda
Posted by SForsgren (Member # 7686) on :
Erradicate / cure - no Same for EBV, CMV, all sorts of viruses. You can't ever erradicate them, but you can live with no symptoms and keep them under control with a healthy immune system.
Posted by Sojourner (Member # 9424) on :
No one knows the answer to this.
Studies to determine this are flawed and we really only have anecdote to go on.
I, however, absolutely refuse to believe in a "window of opportunity" theory. And I know people can improve a lot with therapy.
I think attempting to treat is always the right thing. With a husband with a so-called incurable progressive disease (MS), we'll take the long slow slog of lyme treatment anyday. And he probably had lyme for 20-30 years and is slowly getting better.
We are so glad we are treating----one thing people don't understand is that it can take a REALLY long time. One doc put his estimate at three to five years.
Posted by Monica (Member # 224) on :
My LLMD says no to a cure, but yes to remission.
Posted by cmichaelo (Member # 5873) on :
A cure means that every single Bb in your body gets killed.
This is unlikely due to this fellows craftiness.
But for sure you can push it into dormancy and make it stop producing toxins, or at least reduce the toxin production, which is what's causing your symptoms.
The trick is to KEEP Bb in dormancy and to remove the toxins circulating in your body. Basically, this requires dramatic changes to your lifestyle.
Whoever told you that you can actually make it worse, either 1) was talking about the Herxheimer reaction, which is relatively short-lived, but can be excruciatingly painful, or 2) doesn't know what he's talking about...IMO.
I'm not a doctor. Just speaking hearsay and my own experience.
Michael
Posted by Kayda (Member # 10565) on :
thanks for your responses everyone.
As I was thinking about this whole thing, the thought came to mind Since syphillis is a similar corkscrew shaped bacteria, "What would drs. do for someone who had syphillis?" Would they tell them it's useless to treat because it can't be cured?
Wouldn't they treat and keep treating and give tons of support for all the problems caused by Syphillis? Wouldn't they try to give relief?
It makes you wonder.
Kayda
Posted by hiker53 (Member # 6046) on :
I think if you say there is no way to cure lyme you have cut out some hope. I am never going to say that there is no way to cure lyme.
I believe God can cure anything! Hiker
Posted by Kayda (Member # 10565) on :
Yes, God can cure anything. He can use various means to do it, too. :-)
Did you read the other article about bacteria mutating when exposed to antibioitcs and making the condition far worse. Maybe it's junk science, I don't know.
We need some definite research with some definite answers.
Kayda
Posted by TerryK (Member # 8552) on :
I don't think anyone knows if it can be cured or not but given the tools/research that exists today, I'd have to agree with many others, remission - yes, cure - probably not except *maybe* for new infections that are treated appropriately right away.
From what I understand, you can get worse if you create a lot of biotoxins by going on therapy and you happen to have inherited the genetics that make it hard for you to get rid of the toxins. For those types (my sister and I are in the unlucky estimated 25% of the population who have this problem), you must use special techniques to get rid of the toxins or they will continue to make you sick. You get worse on treatment because you've increased your toxin load and your body cannot get rid of the toxins.
There are tests that you can have done to determine if you have this problem. My naturopathic doctor believes that the majority of people with chronic lyme have this problem with biotoxins and I think she may be right. I am not a doctor, just my opinion. My LLMD has me on actos and cholestyramine to help my body get rid of the biotoxins. I got the impression that he automatically puts everyone on that combination when he starts treatment.
The really sad thing is that there are many who have lyme but who are told that they have fibromyalgia, chronic fatigue, MS ect.. and they are given no hope. Told that they have to learn to live with it. At least we have hope for a remission.
Terry
Posted by Greatcod (Member # 7002) on :
I think its very important to consider both remission and improvement (less than complete remission) as positive achivements. Lots of other diseases and conditions can only be improved, or even only the rate of decline lessened, by treatment. Not to say that cure shouldn't be the ultimate goal, but to dampen the frustration and despondency while still sick.
Posted by Marnie (Member # 773) on :
Yes.
It takes time.
Posted by NMN (Member # 11007) on :
I think everyone gets fixated on the word cure. Lyme follows the same principle as many other diseases. We pick up plenty of different things over our lifetime and they jump aboard and dont get off. We just learn to deal with them. Anyone who has had glandular fever or CMV. These are written into our bodies for life are they not. There is a girl in my office who had lyme and has been in perfect health since 1999. What would be the difference between her and a person who has never had lyme? None that I can see.
Posted by Kendrick (Member # 10990) on :
Yes. You're getting there.
Posted by Tincup (Member # 5829) on :
In MY opinion...
Until we have a fool proof test that can determine if every keet is dead and gone... I don't think we will ever know.
Our immune systems aren't reliable in this situation as an indicator.. and man made tests so far suck... so... I guess we will have to just keep trying to make ourselves feel better and keeping fighting back.
PS- Keets have managed to survive for MILLIONS of years. I kinda doubt a bunch of meds thrown at them... which were NOT designed specifically for the purpose of killing them off.... will stop them.
Posted by Vermont_Lymie (Member # 9780) on :
If you read about syphilis, it is clear that even people with late-stage syphilis go into remission or can live totally asymptomatically -- if they are lucky, of course.
So, why not with lyme disease? I think this is clearly a disease where one can have it and live totally in remission, asymptomatically, even if we have not killed every last Bb in our body. I know, I would like to kill everyone of them off, but even more, I would like to lose all these awful symptoms more importantly.
Posted by CaliforniaLyme (Member # 7136) on :
Full remission- yup*)!*)!*)!!!!!!!!!
I have seen people sick 10 years plus really badly off go into full remission!!!!!!!!!!!
IV Rocephin is usually involved- around here!!
Posted by heiwalove (Member # 6467) on :
full remission, absolutely.
Posted by D Bergy (Member # 9984) on :
I believe it can be cured, but there are a lot of things working against you. When you do get to feeling better you either stop treating intentionally or just forget about it.
You have to treat until it is completely eradicated. Could take years. But my wife is functionally the same as she was before the tick. Joint pain once or twice a month is all she has now. The pain is getting less also. It is too easy to just let things slide instead of continuing to treat on a regular basis.
But, even if you are not cured, feeling good again is worth a lot.
D Bergy
Posted by LymeinNJ (Member # 7805) on :
I was treated with Ketek and then Biaxin and Tindamax for 18 months. I enjoyed a glorious 7 months remission with absolutely no symptoms. Four weeks ago, the symptoms returned in a tidal wave. Hopefully, my message follows the wisdom of this thread - instead of fixating on "cure" we need to cherish improvements and windows in which some of us our truly symptom free.
As a rule of thumb, I like many of you spend hours pouring over publications, protocols and books. I tried a variety of herbal supplements, have seen two LLMDs and try to take care of my personal health.
The most difficult part is the onion-like peeling process we go through as patients. There is no "truth" to be discovered. Rather there are many well thought out modes of treatment among LLMDs. These modes may often be in conflict with one another and include varying mixing of oral and IV antibiotics, herbal supplements and general care advice. Furthermore, we are told at times to exercise and at times to not push ourselves.
All of this places patients in an emotionally and intellectually perplexing quandary - how do know if we are getting the "right" treatment? How do I know if my LLMD is the one for me? When should I go for a 2nd or 3rd opinion? Is IV really the way to go or will oral antibiotics do? And finally why do so many people villanize chronic lyme patients as borderline nuts or chronic hypochondriacs?
Like you all, I wrestle with these thoughts and like many of you I cherish the good moments and celebrate minor improvements.
Please know how much we can help each other as a community and move forward collectively.
Posted by yourtroubl (Member # 11087) on :
Are you guys serious cured. No one even wants to admit it exists. Those who realize it does are afraid to treat it. Those who do realize it put their lives in jeopardy to treat it.
How can we get a cure for something that seems to be an epidemic but everyone wants to dismiss that it even exists.
I could not believe it when I was finally diagnosed what an ordeal it was to be treated. I had heard of Lyme Disease, never believed I could get it. But I am a statistic now in the State of WV because I have been turned into the Center for Disease Control and the State Health Department, yet "it does not even exist in WV according to ID docs and others"
I tested positive, have all the symptoms and yet I just dont look like I have Lyme so ID doc does not believe it.
I am being treated orals and now to start IV but I was lucky to find a doctor that used to be a Psychiatrist, boy I need that part of him too, that is treating me.
What about those fighting to get treated. Its a shame.
Posted by Kthompson (Member # 11931) on :
Hi I am new to the boards here but I have to reply to this one. I was FINALLY diagnosed with Lyme about 7 years ago, after various drs and various treatments I went into "remission" about a year ago. This Jan my symptoms came back with a vengance. The problem is I have new drs and am starting back at square one, very frustrating but at least they agree that it is lyme, how to treat me is another issue. I hope they figure it out soon, I don't want to have to jump around looking for a new dr that knows what to do. I can't afford the LLMD that I was going to so I don't know where to turn.
Posted by yourtroubl (Member # 11087) on :
Its infuriating. And I guess I am pretty new too since I was only diagnosed in January but it took a stroke to get the test and diagnosis.
The disease is in some cases worse than cancer. You hurt, you are tired, you lose your will to live sometimes. But its all in our heads, I guess. I must just like sitting in bed 22 hours a day and losing 50,000.00 in income a year right now. Dream come true.
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