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» LymeNet Flash » Questions and Discussion » Medical Questions » I don't mean to be Debbie Downer, but reality is reality...

   
Author Topic: I don't mean to be Debbie Downer, but reality is reality...
triathletelymie
LymeNet Contributor
Member # 26456

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I will preface this post by not meaning to discourage anyone from seeking treatment, nor to offend anyone...but...

I have been ill for five years and "in treatment" for 4½ of those five years. The first 6 months prior to starting treatment and attempting to find out what was wrong with me, I was on death’s door…seizures, coding in the ER, spiking blood pressure and heart rate, all bad stuff. When I started treatment, however, six months into it, the REALLY bad stuff (the seizures, coding in the ER, spiking blood pressure and heart rate), seemed to have gone away…ON IT’S OWN. I was just left with MAJOR brain fog, generally feeling crappy, short and long term memory loss, abnormal brain scans, that kind of stuff. In my 4½ years of treatment, I am NO worse for the wear…I am no better and no worse. I was averaging about 40-50% functionality then and the same now. But, I am much poorer! I went to three different LLMDs…kind of working my way up the food chain, and am currently with the heavy hitter, Dr. H, in New York. Over the years, I did HBOT, acupuncture, numerous supplements, tons of oral antibiotics, months of bicillin shots and two PICC lines (one for 7 months and the other for 9 months). I am, probably, $100,000 poorer, not even counting whatever amounts my insurance picked up.

I was hoping and praying that, one day, I would be posting in the Success Stories. But, I don’t think that that is ever going to happen. I don’t mean to discourage anyone because hope is something that a lot of folks cling to, and that some folks do, in fact, get better, but, the reality is, is that you may never get better! Hope is great, but false hope, well, not so much! Chronic lyme is real and, while everyone is hoping and striving with all that they have in them to see wellness, konw that it may never come. Had I known then what I know now…i.e. that after 4½ YEARS of pouring money down the lyme toilet, would I have embarked down this long road, with no return for my investment what-so-ever? NO WAY! Many folks have asked on here, where all of the folks are that really do get better…the answer was always that they are out living their lives now that they are better. While that may very well be the case for some folks, I don’t think that that is the majority. I think that most folks on lymenet, do not get better and that’s why there are so many folks on here. The better ones, the lucky ones, post their success stories…but, as all can see, it’s less than 170 people, while yet thousands are on this site. Sad, but true.

Again, not to discourage anyone from doing anything and taking all measures within their power to attempt to achieve good health, just know, though, that the result may not always be there!

Good luck to all!

~tri

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
frikfrak
LymeNet Contributor
Member # 26844

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Hi,

Not to be a downer either but I agree.

My DS (24) is 4 1/2 years in also, with Dr. H for the last 2.....no better no worse.

Completely mentally disabled. Tried/trying everything, nothings working.

Seeing yet another additional doc that we can't afford.

His Mom

Posts: 158 | From NJ | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

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I agree completely with all you have said.

I no longer hold out hope for any kind of miracle, and only wish to minimize the misery as much as possible. After years of traditional therapy, and tons of $$, I have found some small relief using Rife, but it seems that for every symptom cluster that fades a new one comes to replace it. Oh joy.

I think, also, that most LLMDs greatly overestimate the success rate. While I know they provide a huge service to many, TBI's are so poorly understood that the reality is trx is a shot in the dark (at best).

All I know is I'm still sick and the money is not coming back.

Thank you for posting this.

Posts: 842 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
poppy
Frequent Contributor (1K+ posts)
Member # 5355

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I have said this before, but here it is again.

People do get better. And they do go away. That figure of thousands on the website is a cumulative total, not current total. Look at old threads when they come up again and see all the names of people that are no longer on the forum.

But for some of us, success has to be redefined as continuing to live and be functional vs. in bed with a care giver looking after us. That is what my success looks like now. Unless some miracle occurs, and the officials are not even looking for better treatment for chronic cases, then that is all I am going to get. Painful, but true.

It is puzzling that you said after a certain amount of treatment a number of symptoms went away on their own. Did you not consider that treatment took them away and is keeping them away? As for the other symptoms that are unchanged, we don't really know what all the tick gave us besides lyme, and lacking that knowledge, there doesn't seem to be any way to treat the whole shebang.

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Lymetoo
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Member # 743

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Very sorry to hear. Maybe you are barking up the wrong tree or you have not found the one thing that will work for YOU. We are all different.

Here's hoping you find the solution!

PS .. Sometimes you have to change course.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622

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I am here to say I am better and have had my life back many many years now. Am I cured? No, I would never say that. But I do live in peaceful coexistence. [Smile]

Was antibiotic treatment the magic fix? Not by a long shot. But it was the first key in unlocking the many doors that make up chronic lyme.

The treatment route is so different for so many, but I will say that you need to address not just the right infections, but the other messes the bacteria (and the treatments themselves) cause.

Here's to many more posts to support my claim [Big Grin]

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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quote:
Originally posted by lymeinhell:


The treatment route is so different for so many, but I will say that you need to address not just the right infections, but the other messes the bacteria (and the treatments themselves) cause.

Here's to many more posts to support my claim [Big Grin]

-

Totally agree with that! [Smile]

Moving to General Support .. waiting there for more replies!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94694 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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