I recently posted my success story. Shortly after that, I was contacted by someone on this site who had quite a lot to say about it...
Basically, this person accused me of being an IDSA member or supporter, because I claim to have been helped by the standard ID drug recommendations! Either that, or maybe I never had Lyme disease to begin with.
For those of you who are not familiar with my situation....I became ill after multiple tick bites, and was able to inform the ER doc of that....my treatment with Doxy started less than 2 days after symptoms began. Initial titers for several tick illnesses came back negative for both recent and past infection, except for the RMSF which showed low positive. and the titers 3 weeks later were positive for both RMSF and Lyme disease. A Western Blot confirmed the Lyme, and so I was CDC positive as well, and for a brand new infection times 2. I had a total of 1 month of Doxycycline, and then later 28 days of IV Rocephin for neurological symptoms. I was very sick for awhile, but in February, I started feeling like myself again.
I am sure there are others here in my situation....lucky enough to to start treatment early in the disease. They need to hear that their wait to feel better may not be as lengthy as many here are forced to suffer. But this person implied that others here are sick of hearing how well I am when they all know that I am not, nor will I ever be, cured. Gee whiz, what encouragement!
I will admit that I am bothered by the occasional meanness on this site towards the entire medical profession, as they are not all bad....many did their best to help me during this illness, admitting that they are certainly not experts; but I am certainly NOT a "member" of IDSA in any way-I too was dumped by my MD once the standard treatment was done, and found myself with no MD able to help, and I was still ill, so I have complete empathy for all who have experienced that....but, I am also thankful for the treatment I was given, because, at least in my case, it was enough to make my body strong enough to battle this the rest of the way on its own (with some help from an LL PA who helped me know how to decrease inflammation and boost my immune system even further).
I feel strongly that my story should be told, without judgement, as folks should be aware that yes, in some cases, people are helped with just IDSA recommendations. I know many, in fact, who are completely normal years after their bout with Lyme, and they never saw an LL anything.
Now, I won't be bold enough to say that I KNOW that I will never experience a relapse (I guess I worry about when I am older and become ill from something else) but I would like to feel that if that happened, I could again turn to this site for help/support etc and not feel like folks are thinking "I told you so", or even gloating that they were right and I was wrong....but if what this person said is true, some might!
I have received much support from folks here, and so I am finding this hard to believe, but this person is not new to the site, or someone who is known for this kind of behavior....it seemed to be a plea for me to stop misleading people....goodness. I did not even respond. I am a bona fide Lyme victim, and I am not supposed to tell my story as it conflicts with what folks believe to be true about the treatment and the recovery?
Very sad.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Sick tick,
Sorry to hear that you received this kind of treatment from a member here.
I wish I could have started treatment less than 2 days after symptoms began, instead of 21 years later.
I doubt that I would be in this same situation if that had been the case.
Just keep the faith and keep plugging!!
I'm glad you are doing well.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I am so glad you are doing well!
Success stories are so inspirational; please don't let this one person stop you from posting. Enjoy your success to the fullest.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
I'm sorry this happened. It's just wrong. I'm glad you're well. I can also relate because I got a taste of this when I talked about using an alternative treatment to get well after using 20 months of abx, but like you, I'm still here to tell my story.
It's important that my story is known so people know there are alternatives that work. It's important that yours is known so people know that early treatment works.
I hope neither of us ever has to deal with relapse, but like you, I will talk about it if it happens despite the few, inconsiderate ones who will say "I told you so."
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sick Tick,
If someone harassed you, let the moderators know. You can also block them from sending you PMs but, if they are harassing you, they will likely go after someone else, too. And that's upsetting for anyone.
It's very fortunate you had the tests to back you up. Wish testing could be more precise for everyone.
I'm very glad your treatment worked. We DO need to know how all the success stories came to be, whether bumps in the road or not.
I wish all could get early treatment. I think it would help in so many cases - maybe not all, but I think it sure could have made the difference for a great many who developed disseminated lyme before they could even see a doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Im sorry that you had this experience. There really isnt an excuse for it. You posted your positive results and thats good enough for me. Im glad that you had the positive results you did. Heres to a bright future for you!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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If someone harassed you, let the moderators know. You can also block them from sending you PMs but, if they are harassing you, they will likely go after someone else, too. And that's upsetting for anyone.
Yes, I've already asked her via PM to let me know. In the terms of use, no harassing is allowed within the whole Lymenet network, that would include PM's. Something for everyone to remember.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Sick Tick,
Sorry you had to endure hurtful words from someone walking in our shoes. Maybe that person was having a bad day and took it out on you?
Please keep telling your story and keep feeling great! Something to look forward to
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sick Tick,
Really happy to hear you responded so well to tx and it really doesn't matter who helped you as long as you got well.
Unfortunately there are some people who are very judgemental and I also ran into that when posting some alternative treatments as well.
Glad six is on top of the situation. This should feel like a safe place to come to and usually is. There are some wonderful supportive people here, so please don't hesitate to post when you want to.
Wishing you the best health and congratulations on your recovery,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Occasionally, there are people who have agendas, want to sell things, some people are just a bit out there or jealous of others who get well when they are still ill...
It's an open forum - so it happens.
Glad you are getting better! Hope it holds up through time. It seems you caught it fairly early - so, you should be fine. Don't let crazy people here or anywhere get you down.
I think there are alot of people who just read the posts & don't reply, too. It good that there are a variety of ways for people to get well. It's not a "one size fits all" kind of illness. You don't have to defend yourself for getting well.
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I'm glad you posted your success story and I'm glad you posted this.
As everyone here knows, lyme diagnosis and treatment is very complex and varied.
One person's experience is no less valid than any other.
I am happy for you that you have been able to post a success story !!!
Not everyone has to go through hell and back to get well. That's important for any newbie to know.
Posts: 797 | From New York | Registered: Feb 2008
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posted
I'm so sorry someone was so rude to you. I think we get more than enough meanness from other people when we're sick with Lyme--the last thing we need is to get it from other Lyme patients, especially for accomplishing the difficult feat of getting well.
This should be a haven where people can feel welcome and safe.
I'm very happy to hear that you're feeling better. We should be especially appreciative of people who get well and then come back here to share their success stories, since not everybody tells us about it. So thank you for sharing it, and congratulations on your recovery, and I fervently hope it is permanent.
As to getting better with short treatment, I actually find it encouraging and less disillusioning to know that it is actually possible for somebody to get well that way. Otherwise I can't see why so many doctors who are not part of the IDSA would insist that it works, unless at least some people got better on it. You have to be pretty smart to get into medical school, so they're not all just stupid. I don't want to believe they're all evil, either.
And it's nice to hear evidence that early treatment makes a large difference. We say that, and encourage newbies to hurry to get treated, but it's good that there is some anecdotal evidence of someone getting better because they got treated quickly, along with all the stories of people who got worse because they were undiagnosed for many years.
As to possible relapse, we are all at risk for that always, because there is no test that can prove that the Lyme is gone, and relapses have been known to occur, and on top of that, there are always more ticks out there.
We guide treatment by absence of symptoms. If you don't have symptoms, then you are better, and it doesn't matter how you got that way--if your symptoms go away, then your treatment was successful. If they come back, you need some more treatment.
Treatment is different for each person, and some people have gotten well with short treatments, long ones, high doses, low doses, IV's, orals, natural or unconventional remedies, etc. And some have tried everything and are still not well. We and our LLMD's need to judge which treatment is best for us individually, but we have no business condemning someone else's treatment if it worked for them.
As more time goes by without a relapse, you can be more confident that you will not have one. Since a test can't prove it's really gone, we can't know with absolute certainty that we will NEVER have a relapse until we die without having had one. Still, I'm sure we can start to trust wellness as it sticks around for a while.
People should be warned that relapses are possible so they can take care of themselves to try to prevent them, and recognize one if it happens, in order to treat it quickly. But there are people who get well and never get sick again, and a few have posted on Lymenet, but most never come back here.
I am certainly aiming to be in the group who gets well and then shares it with everyone. There are so many discouraging posts on here. Let's be grateful and supportive of the people sharing good news.
Hugs to you, Sick Tick,
Light
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Wow...thank you SO much, all of you, for your words of support!
Update-the person I mentioned above apologized to me, saying it was a bad day for them Lyme-wise. I have accepted the apology, but with just a little admonishment about using this forum to attack someone....it is, as you have all said above, for SUPPORTING each other, so hopefully, nothing like this will happen again. Thanks, Keebler and Six, for offering to intervene, and I will keep that option in mind if this occurs again.
I wish you all good health, and am pleased to hear that my message has provided hope that there are well days ahead for others.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
some people need to get a life. So sorry this happened. I hope you shout it to the roof tops!
Hooray for you.
Posts: 3905 | From USA | Registered: May 2007
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