posted
I just got back from dr's office where I did my IV Clindamycin. There was a man doing another vitamin IV who was speaking to me and said "ya, but there's no cure for Lyme."
I was a bit irritated by that comment and with my limited knowledge, I replied "antibiotics can help kill the germs, and bacteria is the problem..."
Then I was paying for my IV and the secretary asked me how I feel after 3 weeks antibiotics. So, I replied honestly by saying that "some things are better, others the same." Then she said, "well, there's no cure for Lyme anyway."
What is this? Coincidence? Two people throw mud in my face without hesitation. I realize it's a constant struggle, but who would be taking these strong abx if there wasn't hope for better days?
I'm bummed out. This really upset me. Maybe it shouldn't but it did. They made me feel like there's really no hope. There is right?
You all have been so great and supportive. Is it just a dream really? Is it wrong to hope?
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
The object with treatment of chronic Lyme becomes getting it in remission and keeping it there. That can be done through use of aggressive treatment with antibiotics. Also pay attention to your nutrition, etc to help your body fight this from within. Lyme can do lots to deplete essential nutrients and vitamins, and deficiences in some of these will cause many symptoms.
Posts: 2276 | From NC | Registered: Oct 2000
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lyme_suz
Unregistered
posted
SAK,
Like this is what you need to hear as you are getting infused. People can be extremely thoughtless.
I am hopeful for a cure. We don't understand lyme as well as other conditions. Which is bad, but good in the sense that treatment will become more effective as more is learned. And if remission means getting back to feeling good, it will be a heck of an improvement.
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
The problems are that one treatment does not fit all, so some people take much longer to improve.
And there is no test to prove that you are cured. That is the biggie.
Meantime, saying there is no cure for Lyme is not very nice.
Next time, (and I hope nobody will say that to you again) you can tell them that lots of people get to feel well again, and until there is a test to prove that Lyme is incurable, you will prefer to think that it is.
I would tell the doctor that you heard someone on staff say "there is no cure for Lyme" and that you don't think that is a positive way to deal with patients. Hopefully he/she will have a talk with the staff.
quote:Originally posted by Ann-OH: I would tell the doctor that you heard someone on staff say "there is no cure for Lyme" and that you don't think that is a positive way to deal with patients. Hopefully he/she will have a talk with the staff.
I agree!!!!!! Not a good thing to be happening at a dr's office!
There is plenty of hope and plenty of room for getting your life back as you knew it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Funny, I thought 6 weeks of Doxy was the magic Lyme cure and everything else was just in our heads...
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I rarely believe what I hear in doctor's offices anymore(even the docs). I prefer to be optimistic and belive there is a cure for lyme. It might take awhile to get there, but I am going to get there. Don't give up hope. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10169 | From Illinois | Registered: Aug 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Sorry to say this but I have to agree with the man. Since I would not like to be led to believe there was a cure for HIV if I had it and was going for treatment. There really is no cure for LD, there are treatment regimes that work for many people and leave them return to live a normal life again.. BUt oh there IS PROOF that people who were "adequately treated" for LD still harbor it in their bodies.. it may well be similar to the Epstein Barr virus (EBV) and remain there for ever...without any true signs it is present.. but I don't know too much about that virus either.. other than the medical professions say it is harmless even if you come back positive on a Blott test for it...I think I remember why I left the board.. cause it really brings to light the fact that there is little being done and not enough truly known for fact..I just get steamed about spinning wheels.. I think that is why I wrote to every senator in every state about this epidemic.. .. Please the man spoke no lies.. he was being honest, are we supposed to lie to people? maybe he should have clarified his statement more.. by saying "there is only a treatment program, but there is hope they will find a cure." While I think health care should be supportive I do not think they should lie..If I had cancer the same thing would apply.. If it was fatal then I want to know "how to live my dying days." if it is treatable I want to know "how". I am not in agreement but this is my personal preference and I'm not picking a fight here.. just stating that I don'yt really think the guys was way off the mark here... he was only being honest.. Honesty used to be the best policy.. might be we are being brain washed by politicians in our sleep... I'm getting dizzy.... my back is beginning to burn from typing I can only handle this for a total of about an hour a day.. I have to get gone.. Later gang! Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
i agree also,some go into remission,some become antibiotic resistent trying to find the right med.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
In my past life I was a hospital pharmacist. Now I'm a Lyme pt, and I understand what you're saying. I just started antibiotics (Ketek) and I read the same thing in materials given to me by my Drs., and I too was discouraged when I read this. However, that really doesn't make sense. If the drug is "cidal", (i.e., kills the bug) then eventually it should all be killed and we should be "cured".
I think there are a couple of problems we're dealing with here. 1. The tick bite carries multiple organisms, and patients may have multiple infections, some of which don't respond to the same antibiotic as Bb. However this problem wasn't addressed in the past as well as it now is. The results were: a. Treatment may have taken care of one infection and one set of symptoms, but the patient would continue to have symptoms due to to the other infection. And b. This gave the impression that the Lyme hadn't been cured, a mindset that continues to persist...at least I think that's what it is.
2. Some patients who have gone undiagnosed and/or untreated for many years have suffered damage that may be irreversible, regardless of the length of time they are treated with antibiotics. How much time it takes to suffer irreversible damage to various systems, assuming this speculation is correct, would probably vary from person to person. Since there have been quite a few people in this category, health care practioners who have never seen anyone "get well", may just believe that LD isn't curable.
Keep in mind that the above is just my own viewpoint.
I prefer to believe that it is 100% curable, at the very least, in those patients that are able to be diagnosed relatively early, whatever that means. In my case, I now recall getting bit last year, so fortunately I haven't been ill for 8 or 9 years without being diagnosed like some other people I've talked with, so I'm hopeful that I can attain a 100% cure.
By the way, if you haven't been tested for the other co-infections of Borrelia, be sure you are.
I hope this helps you.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
Hi! They are all right.Stay positive.Plenty of people have got well and maintained there health with lyme.Maybe we can't cure it ,who knows but we can get it under control and improve.I have been on here for 3 years and there have been heaps who have gotten better and gone on with there lives.
I would tell the receptionist to shut her face if she hasn't got anything positive to say and let the LLMD know what she said.
If you don't stay positive and keep trying with all the stuff you are doing then you won't get better.We will if we try.People like that need to get bitten by a tick.
Take care ,keep trying,positive and don't take any notice of there opinions .If it was hopeless they wouldn't bother treating us would they!
Sue from Downunder.
Posts: 801 | From Kiama,Australia | Registered: Dec 2002
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posted
It is inappropriate for office staff to make comments about prognosis. This was thoughtless. However, the response to lyme treatment is variable as is the attitude of patients. Yes, it helps to stay positive, but some people want the truth about the goal. It allows you to make the arrangements that fit your situation.
This is no different than other diseases. Some people want a realistic appraisal, others prefer not to hear any bad news because it affects their ability to fight on. It is personal.
Posts: 8430 | From Not available | Registered: Oct 2000
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I agree, I think it is very personal, how much, and exactly what a patient might want to know. In addition, it does seem to be true that some people really can beat the illness, and go on to live their lives with no further problems, and others seem to be dealing with it for the long term.
I don't believe it is all one or the other. Unfortunately, I don't think you get to pick how it will be for you. I've seen a lot of people, very determined to deal with this illness once and for all, embark on treatment that was more than their body could tolerate. It actually set them back, pursuing such aggressive treatment, thinking they could erradicate the Lyme.
For some, it makes more sense to figure out a strategy for maintaining quality of life WHILE in treatment, BECAUSE of the possibility the treatment could be very long term, even lifetime. It doesn't mean giving up!!!! Some people that I know who are in ongoing treatment have managed very good quality of life. That is the bottom line, after all.
The office secretary could certainly have been more tactful. It wasn't her place to inform you of the potential consequences of your illness. And there is certainly hope. But maybe they have ultimately done you a favor by having you look more carefully at the realities of what this illness means, and what you need to do to maintain your best hope for a long term, positive outcome.
Don't give up!!! Fight for your health, in every way you can, including politically.
posted
Thanks everyone for your comforting and 'realistic' feedback.
I have no problem accepting all sides of a situation. I just don't see the comment that 'there is no Lyme cure' is a matter of opinion. It's fact or it isn't.
I just do not agree that someone who doesn't know much about LD should offer an unsolicited, negative, and blunt view to a sick patient. The scary thing is that these people were trying to 'look smart.' They weren't trying to be helpful by sharing knowledge.
Besides, like some of you noted, last time I checked someone sick who is fighting to feel better needs encouragement. That doesn't mean that I need or care to be lied to! I do my reading as everyone who is dealing with an illness tries to learn as much as possible about it.
From what I understand, perhaps the accurate and realistic thing to say is that: 'Some people with LD have relief from symptoms after treatment, and test negative on Lyme tests which were positive before. Hopefully that means Lyme no longer exists in those people. BUT, given that we don't have the best tests yet, it's hard to tell for sure. Co-infections must be treated too.'
Am I missing something? I just think that not just anyone should spew words as fact without knowledge. It's really not nice...
An LLMD would be the most informed and I have yet to hear one say that there is no cure for Lyme. They may not say that there is a cure but they do give hope.
Just my 2 cents. Thanks again!
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Very well put Lou,,, and SAK your summary is very accurate! Hang in there and "don't let the Turkeys get you down".. that is a book by the way! Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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