Needing Something to Believe in

[LymeEnigma]

Be honest now: how many years have you jumped from one antibiotic to another, only to feel better for a couple of months and then slip back to square one? How many different answers have you received from the different doctors you’ve seen about your Lyme, from both IDSA and ILADS camps? How many more years are you going to put one group of doctors on a pedestal, its doctors unable to do any wrong in the eyes of those they treat, simply because their opposing group is wrong? How long can any of us be willing to put up with faulty statistics, fabricated medical articles, and doctors mistreating us, before we finally decide to put our foot down?

We all need something to believe in. We all need to feel hope about our prognoses – our future – our quality of life. Burying our heads in the sand when confronted with information that upsets us will negate nothing. We are currently being faced with a serious problem. A good number of very sick, very desperate people have been misled by trusted doctors who, in all actuality, have made false or exaggerated claims – probably as many people as have been mis-diagnosed due to the IDSA’s poorly written guidelines. Because of all that so many of us have been through, and because so many of us have become so desperate for a cure to this miserable disease, I believe many of us have allowed ourselves to lose sight of some very important values.

You can believe with all your heart that the treatment “protocol” you’re currently on is going to finally be the one, and maybe it is ... but maybe it isn’t. It is quite possible that, no matter how great your doctor’s bedside manner is, no matter how sympathetic s/he is to your symptoms, and no matter how confident s/he is in your treatment protocol, your doctor may still have no real idea what s/he is doing, nor what your prognosis is, nor whether or not your symptoms are the result of a continued active infection, post-disease sequelae, or a combination of the two. If this is the case, which you must consider as a possibility, how long are you going to allow yourself to be taken for this ride before you stand up for yourself – for Lymies everywhere – and say enough is enough? I know that many of us are intelligent, rational people ... logic can go out the window when one is desperate and in pain, however, and it is easy to fall victim to the many scams out there. Some of them are more obvious than others, and the best of us have fallen for many of the latter.

We deserve better than this. We deserve the truth. We deserve real answers.

[jessiemacmillan]

I'm with you there! We deserve truth, answers, and solutions.

In the meantime, I'm working on treating my Lyme (or whatever it is I have because it might be only co-infections at this point) as a chronic illness. That means I don't expect to be cured. I just expect my health-care providers to take me seriously, trust my judgment just as they expect me to trust theirs, and work with me.

Over the course of 4+ years the only abx to work for me has been doxy. I intend to continue taking it for as long as possible. Next, I intend to insist that my doctors treat my symptoms. I'm no longer willing to try to find the cause of my fatigue or brain fog or whatever is making me ill at the time. I want to treat those symptoms -- and if a doctor won't work with me on that premise, I'll find one who does.

I'm not sure this qualifies as something to believe in, but it's a start!

[LymeEnigma]

Glad to have you on board, Jessie!

[itsybitsyone]

You know what I am sick of?

Needless tests.

I don't feel it is necessary to do all sorts of bloodwork and other tests again and again and again.

Now, if I have, say, a heart problem...I shouldn't have to fight to get a test for that when they are willing to scan everything else....REPEATEDLY. Can't I have some control, some say over all this? Without being treated like a hysteric?

There are times where I have said..."NO MORE TESTS!" and got treated like a non-compliant patient. Yet, when your insurance won't pay or you haven't met a deductible or are out of work...they don't want to test you.

I believe health is at least somewhat obtainable. I'm not sure it is going to come from believing in a doctor or a protocol.

Nancy

[LymeEnigma]

I think more control over our individual care would be a good start. With limitations from insurance companies, disparities between LLMD standards and treatments, and the confusion between this guideline and that, I'm surprised any of us has been able to get anywhere with our treatment. I'm wondering if perhaps one route toward obtaining our healthcare freedom might be to consider joining a cause or two in changing the healthcare system, itself.

[itsybitsyone]

Healthcare IS broken, but I have yet to see a viable option in fixing it.

If we had universal healthcare...which is all the rage right now...the govt would then control what my treatment is...

NOT!

Could you imagine a world without LLMD's...agree with them or not its our only option besides three weeks of doxy...your choice of meds for thyroid or acid indegestion? Gracious! I don't want more government in my life than I already have.

As it stands, docs cannot agree even in a capitalistic healthcare society where they have freedom. Universal healthcare would be "cheaper"...except that if the government cannot even handle social security...well, I don't care if you are a democrat, a replublican, or a shaolin priest...you've got to know when new programs are created, taxes go up...and you lose autonomy....and the govt cannot run the programs in place NOW, no matter which political party is in charge.

OK, off my soap box.

Next...Pharma companies. They dictate a lot of the studies that are done. They have no financial interest (and I promise you they are NOT in the business to be non-profit organizations) in curing anyone. I don't buy into conspiracy. But I also know they are in business to make money. Its not conspiracy...its math. As long as we allow pharma companies to control many of the studies on their drugs and the bacteria they kill or the symptoms they supress, we also aren't getting further.

If someone would come up with an idea that would work, I'd be on it. I'm probably not the person to do it, even though I would rather focus on the solution than complain about the problem.

The only thing I can come up with is both public and private incentives and funding for labs and docs who focus on solutions rather than symptoms. BUt still...where would the $$ come from?

Better care, prevention, and answers for chronic disease means we pay out less over less time. Good for us, bad for the people making money off of us!

OK...I really need to quit my rant.

Nancy

[itsybitsyone]

I was thinking about the soapbox I got on yesterday...wasn't trying to look like a lunatic.

I wasn't even thinking of it anymore when I came accross this:

www.idsociety.org/
temp.aspx?RefURL=http%3a%2f%2fold.idsociety.org%3a80%2fTemplate
.cfm%3fSection%3dAntimicrobials%26Template%3d%2fContentManagement
%2fContentDisplay.cfm%26ContentID%3d9770

And I thought...hmmm...maybe I am right after all! lol

Nancy

(edited only to fit page; content not affected)

[LymeEnigma]

Yes, that article says a lot. What concerns me, also, is the IDSA's insistence that Borrelia cannot develop that same kind of resistance ... when I've found papers (co-authored by Wormser, no less) that show evidence of erythromycin-resistant Borrelia (whether or not it is the strain or a specific, developed mutation, the papers are vague to state). I've been trying to organize all of my notes on the subject, because I think we have a big problem, here....

[cobweb2]

In spite of going to an LLMD I think treatment for Lyme is a crap shoot.

Although I have had the best progress with IV Rocephin, I really wonder if the improvement is going to hold when i stop.

[LymeEnigma]

That's a valid fear, I think. It seems that many of us find ourselves eventually pressed with the question: will I ever be able to stop taking antibiotics and retain any quality of life? I know that was my biggest concern when I decided to stop taking the zithromax/plaquenil (which I really did feel was a good combination). I was afraid of immediate relapse, and to a certain degree I still am. What's really hard is that, once you come off of long-term antibiotics, there is a short detoxing period which can easily be misidentified as a relapse; I would be willing to bet that most people don't get past that stage, simply too afraid that they're getting seriously ill again. When do you think you'll be making the leap, Cobweb?

[LymeEnigma]

Good questions, Denise ... I've found myself asking quite a few of those, myself.

[cobweb2]

admin said:

, What's really hard is that, once you come off of long-term antibiotics, there is a short detoxing period which can easily be misidentified as a relapse; I would be willing to bet that most people don't get past that stage, simply too afraid that they're getting seriously ill again. When do you think you'll be making the leap, Cobweb?

I have been thinking a lot about this lately.
And Fallon's Study-it was so very limited... for instance it did not address patients who stopped IV but continued on orals-that is a straw I am grasping right now.

I continue on orals with the hope of holding off a relapse. Almost as if a relapse is inevitable-but is it?

I should find the thread on Lymenet about success stories and read it carefully to see how long people have been treated.
Then again-do those on long term-by that I mean many years really still need to be on long term, or do they just think they do?

I recently had an experience(this past weekend) when I became totally confused about the events of the evening-thank goodness I was not driving. Some friends came over , we went out to dinner, then to Barnes and Nobles and hung out.

On the way home I insisted that we were going in the wrong direction, I didn't know where we were going, and how did we get to where we were? I had blended the trip to Barnes and Nobles with the restaurant-two different locations.

Fortunately I was with two sharp minds , who had to remind me that we had gone out to eat earlier in the evening, but at that time we were returning from the bookstore.

My sense of fog and inability to recall the sequence of the last two hours was very disconcerting. BUT, and this is a big BUT, I had also run out of my seizure medication-and had not taken any for a couple days-so was it the effects of withdrawal ? was it lyme? was it alzheimer's?

They were befuddled by my befuddlement,too. ;D

I definitely got the impression at my last LLMD that she doesn't have a clear idea where I'm at in terms of Lyme Disease. She has me scheduled four months in advance for appointments.

Yet, I may stop for two reasons-enough is enough, and I'm out of money. I am winging it on faith that somehow my needs will be provided.

Are generic supplements-i.e. Vitamin shop vs Allergy Research, a waste of money?

For some reason my gut(no pun intended) tells me to do another round of flagyl.

There's another glitch-in order for me to get my disability check I have to supply on going documentation of being under a doctor's care.

When do I think I'll be taking the leap? After the Holidays for sure. After I have secured another job and been able to maintain it. After another round of flagyl.

I want to believe in the power of visualization-like one of those video games-chomp chomp-seek and destroy-I've taken enough meds to obliterate the enemy, I think.

Can I still hang out here if I stop and find out I'm cured??

I WANT TO LIVE!!!! This is not living-this is surviving one day at a time.

Now I have to go walk the dog and breath some crisp fresh air. Oxygen I need more oxygen. I bundle up so much you'd think I lived at the South Pole.

to be continued-I think I got into a bit of rambling.

Cobby

[itsybitsyone]

Cobby...

I want to live, be as healthy as possible...

and still hang out here too.

I think Enigma would allow it

especially if we have success stories.

[LymeEnigma]

Cobby and Nancy, I would be SO bummed if you left simply because you were feeling better ... of course I would be happy that you were feeling better....

I'm at that "am I as well as I'm going to get?" place, myself, and rest assured that I will not be closing down this place if or when I happen to conclude that I no longer have active disease. I've grown fond of this little group ... and, besides, there are too many people out there who need us! :-)

[cobweb2]

Yeah- that crossed my mind- what if I am better- would I still qualify to be hanging out .

Obviously the success stories are in fact a necessity for all lyme patients. I already experience some of that "oh I remember when that used to happen to me" stuff.

So hope is an important thing to pass on. Not just important-essential.

The only thing that would get in the way is-having a life!

But I'm putting the cart before the horse- I have not been released yet to go back to work. But when I am I'm going to get a job with access to a computer.

My LLMD books my appointments 4 months ahead-so I am booked until April. I told the receptionist I plan to be cured by then-or more realistically- in remission.

Spread my wings and fly. Not as the eagle soars-but as the pigeon that always returns home to The Lyme Enigma!