posted
Hi all. I wanted to update my story in the hopes that some out there can take solace in it. In the early Fall of 2007 I awoke to a seriously swollen left knee. I attributed it to rnovation work I was doing at the time, strapped it up and went back to work. Over the next several days other joints became painful (all on the left side), brain fog, fatigue, fever, nightsweats, cough, the whole gamut. Trained originally as a medical technologist I recognized what was going on and connected it to a bite/rash my wife had noticed one morning several weeks earlier on my backside --- no 'bulls-eye' but a 15-16cm diffuse rash with a clear bite.
I saw my primary doc and he drew blood for tests and turfed me to a rheumatologist for my knee. My knee was aspirated and I was given a shot of cortisone. I was also told I did NOT have Lyme (the tests came back negative) but had some kind of 'idiopathic arthritis'. Within a couple days my symptoms disappeared. Just in time for the holidays.
Several weeks later, in early January, my symptoms came roaring back with a vengeance. I went back to my primary and rheumatologist. More labs, x-rays, CT scan and was put on prednisone which again relieved all my symptoms. I was sent to an infectious disese doc who told me that being on prednisone I'd be sicker, no better, if I had Lyme. I was kept on prednisone for a year.
I was then weaned-off the prednisone. Within 6mos symptoms came back. Put back on the prednisone, more x-rays, another CT scan. This pattern continued (on and off prednisone) for 4yrs.
I dumped my primary doc and got a new one. Last November he decided to test me for Lyme one more time. The results were off the chart. Suddenly everyone's hair was on fire. I was sent to a neurologist, had an MRI and was going to be referred to the same infectious disease doc that had blown it 4yrs earlier. This is when I decided to take charge of matters.
I contacted the Chief of Infectious Disease at the nearby medical school/hospital and got an appointment. They took matters seriously and I was very happy with the time and attention afforded me. They re-tested me, arranged for a spinal tap and within a few weeks had me on IV ceftriaxone.
Within a few days ALL my symptoms resolved. 2 weeks in I had a flare-up but that quickly subsided. No Herxing. Dealing with the PICC line (mainly showering) was a PIA but there was no question it was worth it.
After 30days of IV ceftriaxone I can happily say I am 100%. As a matter of fact, until recently I had forgotten what feeling good was --- it's been so long. My doctor asked me to join her at the medical school and present my case to 2nd year med students and other doctors which I did this week. My doctor is committed to wining this battle and if --- God forbid --- symptoms re-emerge, she already has a plan.
There is hope. Maybe this protocol won't work for everyone. Not everyone can tolerate the IV or the IV antibiotics. But I'm evidence that even an advanced, poorly mis-managed case can be treated. It may not always be necessary to seek-out unconventional treatments.
Posts: 12 | From central MA | Registered: Nov 2011
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thank you so so so much for sharing this. I wish we heard more stories like this. I am also in MA so I will be contacting you to see who your doctors are!!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I always love to see these stories. With so many people struggling it is good to see someone who had beaten this back. Best of luck!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
thanks for posting! I too was given prednisone before my Lyme dx so it is so nice to hear a success story.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
yea, the prednisone (and the cortisone shot) very likely suppressed the immune reaction (they are immuno-suppressants afterall) and hence the negative test results. It was like holding a guy's coat while he robs your house.
Posts: 12 | From central MA | Registered: Nov 2011
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posted
I am surprised prednisone made you feel better. I took it once after being infected but before the diagnosis. It made me crash harder than ever because it allowed those little buggers to rerun wild while it suppressed my immune system
Before I was infected I did fine with prednisone
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Thank you for sharing your story! I am so glad that you are feeling better.
Wishing you continued good health.
Posts: 486 | From USA | Registered: Jan 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
A rare story.... but still so nice to hear. Most people who have had it for that long can't get close to the results that you did.... and in such a short time. Wow! You're one of the lucky few. That's better than hitting the lottery! Good for you!!
Wishing you continued good health.
Posts: 2238 | From East Coast | Registered: Jul 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Great news. You were so incredibly lucky that:
1. Borrelia apparently showed in your lumbar puncture. It does not for most. Others could be turned away if your doctors think it has to be positive.
2. Aparently, you did not have other tick-borne infections. Most people do.
3. To be able to do just one month of one drug and do well is very rare. I do hope those with whom you share this will also learn about addressing the biofilm and cyst forms - and combinations to use for cases more complex.
So, I hope as you stay in touch with your doctor that you will make them aware that, although you suffered for years beforehand, not all lyme patients may have the same exact case as you.
Still, it's fabulous news and I do hope it starts to open some minds about lyme.
You say:
"My doctor is committed to wining this battle and if --- God forbid --- symptoms re-emerge, she already has a plan." (end quote)
I am glad to hear that your doctor is with you on this. I so hope all goes swimmingly and that you have only good news to keep reporting.
Thanks for sharing. Good luck. Enjoy life out there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was never tested for the typical co-infections although my doctor based on the symptonology) is fairly sure I had anaplasmosis and possibly babesia initially. Borrelia didn't show-up in my LP but the protein and Lyme AB was elevated.
Posts: 12 | From central MA | Registered: Nov 2011
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posted
Amazing, you are like a CDC textbook case! I wish it worked out that way for most of us here.
I'm so happy that you had a quick (quick in Lyme time) resolution, and that the steroids didn't set you back.
Best to you, stay healthy, R
Posts: 845 | From Northeast | Registered: May 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Your story sounds like a dream.
I too was initially given IV ceftriaxone (2g per day ) for 3 months along with other ABX's. Went from not being able to walk to 95% in 3 weeks.
From then on I only got worst and started to develop the numerous symptoms that I was only reading about. Struggling to this day at almost my 1 yr anniversary with this hell.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Congratulations!! You are SO LUCKY that more conventional treatment worked for you!!! Many of us have to look for alternatives because we're treatment failures. I hope you continue to feel well!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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