posted
I know in my darkest days how the success stories I would read here would get me thru each horrible minute of each of those days. I feel so fortunate to be able to share my success story with all of you and to be able to offer much needed hope to those of you suffering. Sorry if this is too long but I know this was the kind of information I was always interested in.
My 'abridged' story:
In September 2005 I gave birth to my second child. In December 2005 I recall having the flu followed by 2 weeks of persistent nausea. The next few months my symptoms were cyclical...I would have weeks of feeling normal and then a week of feeling like I had the flu. Finally went to see my PCP in April. Routine blood test showed nothing so off on my way I went.
By August of 2006, I was routinely feeling ill and had lost a substantial amount of weight and was very thin. Never having had any health issues or chronic conditions, my PCP took my condition very seriously and ran numerous blood tests (including a lyme ELISA which was negative). The following 7 months I was sent to every specialist and in some cases got second/third opinions. I was told that maybe I had MS, ALS, Addisons disease, gastroparesis, etc.
My condition just continued to spiral downhill until I was sure I would die. For me, I felt like I had the flu 24/7.
Only due to a story I heard thru the grapevine, I requested that my PCP run a lyme western blot (in addition to may other tests for rare diseases). My IgM was CDC positive and I was sent to a local infectious disease doctor. He of course dismissed the fact that I had lyme due to my lack of an IgG response but given the fact that I was in such rough shape, he decided to cover himself and prescribed me a month of doxy.
I also doubted I had lyme but considering I had nothing else to go on, I decided I had nothing to lose by pursuing 'chronic lyme treatment' while I continued to look for the real cause of my symptoms.
I found Dr. D and just when I didn't think I could get any sicker, I did. I was put on Biaxin/Plaquenil and by week 2 I could not function. Physically I was so ill and mentally I was a mess....something I had never experienced before. By week 3 I was hospitalized as my blood pressure was so low, my pancreas was starting to fail, I was clearly anorexic, etc.....all likely due as a by-product of being completely incapable of eating or drinking anything.
The hospital of course doubted I had lyme as well and ran numerous tests. They found nothing and decided I was so sick that they would try a month of IV rocephin.
The IV rocephin definitely made some of my symptoms disappear (i.e. internal vibrations).
I then proceeded to do another 2 months of biaxin/plaquenil. Life was horrific...I was so sick and didn't see any light at the end of the tunnel. I decided to switch LLMDs and spent the following 7 months on different antibiotic combos (i.e. minocylcline, ceftin, mepron, zithromax). Multiple tests showed I was negative for babesia and bartonella).
I saw some improvements during this time period but decided I wanted to try rifampin. My LLMD at the time was not comfortable prescribing this drug so off to NYC I went to see a well-known LLMD. He put me on rifampin and ceftin (I think). I stayed under his care for a few months but then went to a promising new LLMD that was closer to home. I spent about 2 months doing bicillin injections.
This past March, the only remaining symptom affecting my quality of life was nausea. Continued treatment was no longer making any improvements so I decided to stop antibiotics to see what happened.
Since then I have been working with my PCP on trying to find some nausea meds that would help and we have found something that masks the nausea probably 90%.
I am once again able to work, run around my yard with my children, workout at the gym, have a social life, etc. These are things I never dreamed would be possible 2 years ago. I am not 100% but then again, I am also almost 4 years older than when this all started. I am happy and grateful for where I am today.
However, I am still steamed about what I had to go thru and what others with lyme have and continue to endure and will never turn my back on trying to promote better care and understading of issues surrounding the diagnosis and treatment of lyme.
Thanks for sharing. These stories do get me through. I have several of them next to my computer. I will add yours there.
I have been treating for 1 just over a year. I have seen progress, but it is slow and I am tired of being sick.
I will use you as an inspriation.
Thanks, Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Great Story. Wow SO glad your better.
I read the whole thing and If you could give advice to someone after what you endured what would it be?
I see that the biaxin plaquenil made you worse and worse. This happens to me but there are a few doctors out there who swear by it and want me on it.
What in the end do you see that made you turn around from all of it. Or do you not think that the meds were making you worse it was the disease so you kept pushing through?
Thanks for sharing. We all can learn from one another.
Thats for sure.!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Thank you for sharing your story. At least we know it can happen, and maybe thee is a light at the end of the tunnel.
Posts: 847 | From upstateNY | Registered: Dec 2007
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SUCCESS STORIES -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
So happy for you Kristin...keep sharing your positive energy that helps many others!
Posts: 1009 | From NJ | Registered: Aug 2009
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Thanks so much for taking the time to tell your story....so glad to hear you are doing well.
You give me hope!!
Posts: 345 | From East Coast | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
yay kristin!
Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
kristin, i also love a WHOOPIE success story, and i was going to paste the success story post but keebler beat me to it!
yes, we need to have them all together for the deepest, darkest days when we are drowning. they give us all HOPE for better days, months, and years ahead.
thx for sharing your story. best wishes forever.
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Congratulations, Kristin, and thank you for sharing the success with others who need the light at the end of the tunnel!
posted
Thanks for all of the well-wishes! Honestly never thought I'd be feeling as well as I do today. I still am looking over my shoulder, terrified of going backwards.
Springshowers- Looking back, I'm not sure whether the Biaxin/Plaquenil was a good thing or not. I did start with the full dose. I know that the 3 months I was on it was beyond torture. My doctor kept telling me that it was part of the process (herxing) but it is a miracle I made it out of those 3 months alive. Whether it was pivotal in my treatment or not I don't know.
It was a very slow process where progress could really only be measured probably every 3 months.
My approach to this illness was to take lyme as the causal agent out of the equation. Most of us can't be 100% sure it is lyme that is ailing us so I decided to hit whatever disease I had with multiple antibiotics and hope one worked. I also continued to seek other explanations (differential diagnosis) to be sure I didn't waste time focusing on a disease I may not have had.
Endless doctors appointments found nothing else wrong with me and over time, antibiotics made me better. Wish I knew which one!!
Keebler, thanks for the suggestions. Certainly worth a try!!
Posts: 561 | From mass | Registered: Jul 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
KS, Check your mailbox. I sent you a PM.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Thanks for the hope!
Posts: 78 | From Maryland | Registered: Jun 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thank you KS. I'm so happy for you. I love these positive posts. They keep me going .
Sometimes I wonder if we are all being tested. Lyme is such a crazy disease. I just found out I have RMSF and Ehrlichia. What? All my friends that have horses and pets and are in the wilderness all the time have never been bitten. I'm a child of the asphalt and I end up with a tick bite and a million different infections.
so Bizarre.
I wish you continued health. The bright side is that we are so grateful for our health when we have it.
Posts: 2232 | From USA | Registered: Aug 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi! I am delighted to see you here as a success story. I wonder about the B/P.....this must have been with Dr S.D, right? I wonder if you were just herxing horribly on that stuff.
Interesting that Mepron treatment seemed not a big part of your treatment....do you think you ever had babesia?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Glad to hear of your success. Enjoy your family time without all that illness.
While you state you have been tested for babesia and are negative for it, may want to look into Fry Labs and the new babs tests. Nausea is usually a sign of babs. Would be wonderful if treatment for that gave you 100% health.
Posts: 132 | From SE Pa | Registered: May 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Kristin-
This is sooo wonderful to read. I am so glad that you are getting your life back.
I noticed you took bicillin injections. Do you think that's what turned the corner for you?
Posts: 1155 | From Southeast | Registered: Oct 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Success stories help us so much! Thanks for sharing yours!
Glad you are feeling so much better!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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best wishes forever.
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