heckyeah
Frequent Contributor (1K+ posts)
Member # 603
posted
Hi all,
I haven't written much lately... been busy with my life which is a nice change of pace. I still have Lyme (and babesia apparently we just figured out despite some past treatment) but I'm sooo much better than I was.
Just to recap for newbies... I had a huge lyme rash in 1990... my doc said it was nothing and not to worry about it. I felt ok after it went away so what the heck. Over the next 5 years my health slowly fell apart despite being very athletic and active and attending college. My last year of college I barely graduated I was so ill. Docs ran tons of expensive tests on me. Only thing that was positive was the Lyme ELISA and since the crappy lab WB was neg, then I "definitely could not have Lyme" even though I had all the classic symptoms.
I was told I had CFS/FM and left to rot. I found a doc to help me cope with the symptoms as I became totally disabled, forced into a wheelchair anytime I had to do anything due to neuro and fatigue problems. Started having trouble swallowing, couldn't read, etc. I took an experimental low dose regimen of doxy for six months (for "CFS") and actually felt improvement! My heart rate came down from 120+bpm at rest and my orthostatic intolerance improved so dramatically that I could come off medication I was on to slow my heart. I relapsed severely when I stopped the drug with new added Lyme symptoms.
I reached out online to wonderful lymies and found a doc who might have a clue. He did tests at the specialized labs (approved by medicare btw) and I came up equivocal for lyme, positive for ehrlichia and babesia and later pcr tests showed I had bartonella as well.
The treatment was agonizingly difficult but every time the herx would lift, I would feel some improvement and it would keep me going. As the years have passed, I've taken my meds, some supplements (I've always taken some) and done physical therapy when I got well enough in order to regain my strength. For a while I worked out at a gym twice a week strength training... just like the old days just not so much aerobic yet.
I've improved dramatically instead of getting sicker like I was before treatment... I was able to stop all the extra meds I had to take prior to diagnosis to ease the symptoms as the symptoms were relieved by the antibiotics over time. I was on IV for a year and then my nerve pain was gone.... my 24/7 agony was GONE.
This past january I gave birth naturally (pain tolerance from Lyme agony... thanks!) to a beautiful healthy baby girl. I could never have dreamed I would be well enough to handle a pregnancy, birth or a newborn baby for that matter (ok, hubby helped a bit). I had endometrosis (common in lymies) and my time was up. After abdominal surgery we decided to try. She is a blessing and healthy thanks to the clinical experience of Dr. Jones whose knowledge was passed to my LLMD. My LLMD carefully monitored my antibiotic dosages and blood levels throughout my pregnancy. My daughters tests were negative and she has no symptoms to this day. In fact, she's healthier than any babies I know (including her cousins) having had only a mild cold a few months ago which she caught from her cousin.
Right now I'm in what I call now a "very bad" herx. I using a new protocol thanks to Dr. H and his PA to kick me off the plateau I've been sitting on for the past year. But really this herx is nowhere near as sick as I used to be (pre-diagnosis) on a day-to-day basis with no cure in sight.
Do I see a cure in my future after being undiagnosed and untreated for 10 long years? I really don't know and really don't care... I just want to feel well enough to play with my daughter and take care of what needs to be taken care of... and I can say that I do feel relatively well most of the time now.
I can pick up my 21 lb, 29" tall 11 month old baby daughter (yeah, she's big) without a second thought. Five years ago I couldn't lift a half gallon of milk I was so weak. In fact, my mother had to cut my food for me because I couldn't press down on a knife. Chewing was even difficult.
It's a dream come true and I know I'm very lucky too. Not everyone is successful at improving after being so sick for so long or even half as long. I've been lucky to live near Dr. B and that he took us as charity cases basically (hubby has Lyme as well). So much for the money-hungry LLMDs! Then to be well enough when I had to switch to travel to see Dr. H and his PAs.
So, if there are any trolls on here, you can EAT THIS. I hope you choke on it. Because this treatment DOES work and this disease IS REAL.
For the newbies, don't lose hope. It's a VERY long road and honestly, it doesn't really END for most of us... but it really shouldn't if you think about it because you should always be taking care of your health in some way anyway. I KNOW it will get better if not go away, so please keep chugging along.
My advice is not to look to a specific goal... just look back after a year and realize all that you can do THIS year that you couldn't do LAST year (if you could get the treatment you needed). This is a journey and, unfortunately, I found that making the "cure" the destination was waaay to much for me to deal with. I make symptomatic improvement my goal and with every new thing I can do I rejoice in it. So should you.
This is my holiday and new year wish to all: May this coming year bring you better health and the ability to be at peace with what comes your way.
Love, Jen
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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posted
oh Jen I'm so happy to hear such great news for you and your family. Having a baby and taking care of her is truly a blessing from God.
Thank you so much for sharing with us your battle with Lyme and what a great success story. All our hopes and prayers are that we will have the same success one day. Remission.
After having Lyme for 2 LONG years and going thru hell and back it's so rewarding to hear an encouraging word from somebody that's been there.
Until they find a cure, we will all still have herxing and daily struggles. Just being able to talk and share with others on here has been a great blessing for me.
Merry Christmas to you and your family. Having your first Christmas with your little one is a true miracle for sure.
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Your story is the best holiday present I could ever have.
Thanks for sharing it with us.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Jen :thank you for sharing your story.I am so happy to hear of your sucess. I also need to hear of some good coming out of a chronic situation. Thanks from the bottom of my heart. God Bless
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Thanks Jen for your story! It is always encouraging to hear a happy ending story! Especially with this disease. I have been actively sick for over 8 years now... have had so much improvement and just recently had some setbacks because of going off of the birth control pill (shock to my system after so many years and the estrogen helped me)... so I am feeling a bit discouraged! I just have to hang in there like the rest of you and keep striving toward better days!
Prayer is very helpful also!!! Take care and have a Merry Merry Christmas!
Stephanie
-------------------- Stephanie Posts: 802 | From Reading, PA, USA | Registered: Aug 2001
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Hi Jen, nice to read your story. Thanks for posting it.
I'm 39 years old now, my daughter was born in January 2004 (almost 2 years now!), before I got lyme.
I wanted to have a second child, as I'm in the borderline of age, but I'm so afraid of having the possibility of having a sick child. I'm in Europe, and haven't found a good dr. for lyme yet. So I'm scared to death to have a child with lyme. It's been a tough decision, hubby and I are depressed with that...
Is it really possible to avoid that a child be infected while in the uterus ?? Could you dr. check it ??
I was never given antibiotics since I discovered I have lyme, confirmed by exams.
I know what you mean that you're perfectly happy to have energy and pleasure to play with your little baby, and that's what matters!!
I fell quite sick in October, those days were hell to me, having a crying child beside me, no energy to play with her, wondering who was going to take care of her in case my health couldn't improve ... And she felt something was wrong, became very moody, I could barely wash her hands (couldn't hold her up), it was horrible. NO family around to help.
Those days are gone though, but I'm still looking for a cure, if possible!
Congrats for the girl!! My daughter is my best medicine for the moment!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
Thanks so much, Jen. That's just the kind of perspective I needed. My 2-1/2 year old was born while I was misdiagnosed at age 40. He is treating really well - hardly had any symptoms but all my research had me get him tested. We are lucky.
Now I wonder if I can bring one more child into the world before my child-bearing years are over. My LLMDs think it can happen. I'd be on meds the whole time and no breast feeding so it's nice to hear how healthy your baby is.
And hearing that I might never completely get over LD is a hard pill to swallow but hearing how happy you are and what perspective you have helps me a lot. (If I can make one symptom vanish, it would be the Lyme-induced depression that makes it so hard to have the needed perspective. That's were people like you come in!)
Thanks for sharing your story. Have a wonderful winter with your little one. These are precious moments.
Be well, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Jen~
Thanks so much for sharing. One of your sentences caught my eye "I was on IV for a year, and then my nerve pain was gone...my 24/7 agony was GONE."
I am on IVs....6 months so far. Many of my symptoms have lifted, but I have nerve pain all over my body....burning, sparking, crawling nerves everywhere. What kind of nerve pain did you have, and did you take any orals along with the IVs that you think helped your nerve pain?
Thanks....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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