I have felt like my normal self for months now, but I am left with 1 symptom that is apparently permanent.....it is so minor now though that I only notice it when it is quiet. My head still has a humming noise and occasionally my ears ring. But as long as I keep busy or am around any noise at all, it is not an issue.
That, coupled with the fact that my LL PA told me in March that my labs results show active acute infection for Lyme, have kept me from posting this success story.
But I cannot imagine this NOT being considered success when I am back to normal functioning and have been since February.
So I am ready to say, either I am done with this stupid disease, or I have an awesome immune system that is kicking Lyme's A.. right now!
My story.....I had multiple ticks attached over the course of a year and a half, but did not become ill until last May. I had one tick roll off me days before I became ill, that was fully engorged. That was the first time that had happened....not sure if that is why I finally got sick, or if it was just that I finally came in contact with a sick one (hence my screen name!)
Started with a fever that climbed to over 103 degrees. I am fortunate that the ER doc took me seriously when I expressed concern over my tick exposure. Since the ticks were from Arkansas (I am in Indiana, but have property in the Ozarks), she was thinking Ehrlichiosis. But she tested for many diseases, including Lyme disease. Treatment was initiated with Doxycycline for 2 weeks initially.
My initial titers came back negative for all but Rocky Mountain Spotted Fever, and this was already showing low positive for recent infection. While waiting for my second set of titers 3 weeks later, I became very ill with meningitis, white blood cells down to 1.7 at one point, liver damage and more. Still, no one believed I had RMSF as I was not sick enough they said! HAH!
Second set of titers....positive for RMSF and Lyme disease! Shocked us all! We weren't even looking at Lyme, as (here comes something many of you have heard...wait for it......) there are NO ticks in Arkansas that carry Lyme spirochetes!!!! HAHAHAHA!
Western Blot confirmed the Lyme, so I was CDC positive. Fortunately, that made folks take me seriously. At least for awhile....
Got a second 2 week course of Doxy. However (shocking again, isn't it?) the disease progressed to a neurological issue for me....imagine!
IV Rocephin times 1 month. As soon as it was done, symptoms returned. That is when I was dumped by my up-until-now supportive ID. Found out for the mext several months that I was basically on my own. My ID had said that the symptoms I had left were due to damage done to my never cells, or possibly an auto-immune response. Since I had no MD near by that could help, I had no choice but to hope he was right...no more antibiotics for ME!
I continued to get better on my own, taking very good care of myself and eating well, taking a few supplements. But I was still left with this lingering symptom...so I made a very long trip to a Lyme Literate practitioner so that I could have an MRI and some further bloodwork...chose the one I did because their practice does support the non antibiotic treatment if a person is at that point...they use supplements, diet, etc. along with antibiotics of course, to treat. It was all good news, except for the persistent antibodies. My LL PA said either I was still carrying around infection but that my body/immune system was going to town on it, or I may be one of those people who will always test positive but not actually still have active little buggers in there.
Since that visit in March, I had a bout with Diverticulitis....was on Cipro and Flagyl. Also had Doxy again for something unrelated to Lyme. No herx, nothing! So I think I am in the clear! But of course, I will never rest totally easy on that, and feel that I have to keep healthy the rest of my life, or this could rear its ugly head again.
So here I am a year later...and HEALTHY! I felt it was time to share this, as I know there are folks new to this board who desperately need to hear that folks can get better. I know, because I was one of them.
Follow your gut on this....sometimes only you know when it is time to take a break from treatment-the treatment can make you sicker sometimes.....but keep in mind that I was treated early, and so long term treatment was not necessary.
There are lots of good people on this board, and lots of good information as well. Don't know how I would have gotten through this without all of you.
I don't visit often anymore, but will check in when I do. Please know that there is an end to this for most.....it is SO hard to remember that on the bad days, I know.
Take care of yourselves....don't give in to this!!!!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Congratulations! I hope to be where you are soon.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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I want that for you as well. And six, that is my understanding as well. I can live with that!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Thanks for sharing! I, too, hope to be where you are...someday...
-------------------- ? 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
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Thanks for sharing! I, too, hope to be where you are...someday...
-------------------- ? 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
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Sick Tick, it is so wonderful to read your post!!
Congratulations and I wish you continued success
You are so right, there is much knowledge and support here on LN.
It is so valuable to share these successes!
Posts: 797 | From New York | Registered: Feb 2008
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
What really jumped out at me in your post is that you were told "no Lyme ticks in Arkansas". What a joke, what a big fat lie. In the NW area of the state, almost every family is affected. NO exaggeration. The problem is this, pertaining to Arkansas: When the doctors DO test for it (that is WHEN they do) you know they aren't sending it to Igenex. It gets sent to the 'good ole boys lab', thus showing false negatives or just one band positive, you know the deal. So it doesn't go "on the record" with the CDC because they are so bloomin' ignorant they want to stay in their little I.D. box!! So, it ends up that there are NO REPORTED CASES in Arkansas. Thus resulting in the myth "no Lyme in Arkansas". Another factor is that a lot of the MD's in that particular area treat it all the time. I mean all the time. They just automatically say "tick fever", DUH! Treat it, then bye, bye.....hope you enjoy your arthritis when it sets in. And it does...my friend is an example. I'm telling everyone, Lyme is rampant in Arkansas!!!!!!
GOOD LUCK TO YOU, BLESS YOU VERY MUCH !!!!!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
thanks for sharing....
Posts: 3975 | From usa | Registered: Aug 2007
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Wow, six....I feel better now about my lab results. Thanks for sharing.
Yep-no ticks in Arkansas! I was asked by several folks down there if what I really had waS TICK FEVER. Hooboy. I also know 2 people who had Bell's Palsy of unknown origin. I suggested they be tested for Lyme. Goodness!!!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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thanks for sharing....
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