I think I am still in shock -- the Levaquin seems to be working. After the frist dose (1/2 pill) hubby did not have any muscle rigors for 24 hours. Had been having 2 or 3 episodes daily for last 5 months.
After 2 weeks increased the Levaquin to 3/4 pill last few days. Have also added Rifampin at 50 mg daily.
After 2 weeks gradually stopped IV Demerol and IV Phenergan with no adverse effects. Still remain on IV Ativan at a low dose (1/2 mg every 4 hours or 3 mg daily with occasional extra 1/2 mg PRN).
Can't really explain why the Levaquin is working when the oral Zithromax, IV Doxycycline and IV Cipro were all failures. The only thing that makes sense is that maybe the Levaquin works more on the stomach and Vagus nerve? At least that is my guess.
Right now no one would diagnose hubby with a movement disorder -- unbelievable after the fiasco in the New York hospital. Hubby has not had any bad muscle rigor episodes since starting Levaquin -- some mild stiffness for first week or two only.
Hubby has not had any myoclonus for about a week and tremors are almost gone as well. I do think the IV glutathione is a major factor -- using 1000 mg 1 or 2 times daily -- but he had been using this during the last 5 months and it was ineffective then.
After 9 hospitalizations last year for a total of 78 days it is about time hubby got a break.
He even went for a short walk -- about 2/10 a mile yesterday -- first time he had done that in several months.
Thanks for all the kind thoughts and well wishes during the last year.
I would never have believed Bartonella could cause such crazy symptoms, but it is either that or possibly mycoplasma as well -- test results a little confusing on that one.
For the next month or two I will continue working on adding in a 2nd antibiotic for the Bart (Rifampin or something else) and put hubby back on a more comprehensive supplement schedule.
And we still have the fun job of finding a local PCP -- if all else fails we will resume seeing the alternative doc that is 5 hours away -- that had worked out ok for over a year before all the hospitalizations started.
I am still in disbelief over the $75,000 bill the New York hospital sent to hubby's insurance. Actually it should go to Medicare and should be all covered. The part that is so mindboggling is that $5 worth of Levaquin did more good than all the tests which were mostly duplicates that had been done several times before.
Bea Seibert
Posted by Melanie Reber (Member # 3707) on :
So happy for you both! Posted by AliG (Member # 9734) on :
Bea,
I was so happy to read this I actually cried.
I hope this is an indication of what's to come in the New Year for hubby & you. You BOTH deserve a break.
I've been holding my breath & praying everytime I go to read one of your posts lately. I hope those prayers are being answered.
Ali
Posted by Michelle M (Member # 7200) on :
Bea, that's SUPERB!!!!
Can't think of news I'd rather hear.
Now, not only Steve but also BEA could use a break. Don't forget to take care of yourself.
Hugs,
Michelle
Posted by Tincup (Member # 5829) on :
Best news I've had all year!
I'm thrilled for you both!
Posted by bettyg (Member # 6147) on :
Thank you God FINALLY a break for Steve and Bea!
so glad to finally good news after all you 2 have been thru. i knew steve was in hospital last year but almost 2.5 months; I feel so bad for all the crap with ducks you 2 put up with!
hoping you can get a local pcp now to administer things for you.
STEVE, keep up the good work; we wish you GOOD HEALTH ONLY on starting to take your life back!
I agree; Bea, please take a much needed break! You've been his soul support and walking medical dictionnnary plus teaching us on everything that went wrong and WHY it went wrong. Posted by Cass A (Member # 11134) on :
Dear Bea,
This is the best New Year's news I've gotten!
Thanks for the data and especially for staying by your man.
Love,
Cass A
Posted by DakotasMom01 (Member # 14141) on :
Wonderful news!!! Take care.
Posted by Monica922 (Member # 13496) on :
Great news Bea! You know what I thought of that New York hospital since I was also there a few months ago...I have nightmares just thinking about it now. (horrifc experience) I hope neither of us EVER goes back there and we get 100% better! FYI: They charged me 87,000 dollars but it is covered except for the out of network doctors I saw....never knew they were out of network. Monica
Posted by Vermont_Lymie (Member # 9780) on :
Great news, I hope he continues to get better and better! Amazing how quickly we can respond with the right treatment.
Sorry for the experience he had in the New York hospital.
Bea, take care and keep us posted when you can,
Posted by feelfit (Member # 12770) on :
Bea,
Way to go! Yes, Bravo, yippee, alright, awesome,hurray!
Looks like Levaquin is doing some miraculous things for a few long time sufferers....your hubby and Aligondo Bruce too.
Best, Rhonda
Posted by merrygirl (Member # 12041) on :
Here is hoping that it is all up from here!!!
Melissa
Posted by CaliforniaLyme (Member # 7136) on :
YES YES YES*)!*)! I am SO happy for you*)!*)! Cipro took me to being symptom free!! I was on it for over a year with no tendon issues- I am SO glad levaquin is working I am knocking on my desk (which is wood) right now for you*)!*)! YES YES YES*)!*!!! A great omen for your New YEar, Best wishes to Steve, Happy for you, Sarah
Posted by ctlyme (Member # 9022) on :
Awesome news .
This is my first time posting to you but i have followed your posts for some time and i have so much empathy for what you and your husband have gone through.
Hope he continues to heal Bea.
GREAT NEWS!!!!!
Posted by lymeladyinNY (Member # 10235) on :
Yea, Bea!!
Remember how I thought my symptoms and your husband's have been similar?
Guess what stopped my full-body muscle spasms and seizure-like activity?
Levaquin!!
I've been off it for four months now and the symptoms have NOT returned!
God bless you, guys. You've been through the ringer and now I sure hope it's all cake from this day on!
- Julie
Posted by Parisa (Member # 10526) on :
I'm very happy for you and have followed your posts for the past year or so. At times when I think I can't take the stress anymore of taking care of my husband, I think of you. You're doing the same thing I'm doing. One foot in front of the other determined to make it to the other side!
Posted by Truthfinder (Member # 8512) on :
Bea, this is just TERRIFIC news!! I'm almost afraid to believe it is true, after all that you have been through and tried and done....
Well, I'm keeping you on my Lyme prayer list, for sure - prayers of thanks this time around!
Posted by DolphinLady (Member # 6275) on :
Wonderful wonderful news!!! Yeah!!!!!
Posted by kelmo (Member # 8797) on :
Holy Cow! This was the best post to read to start the new year!!
If there's anyone I know who needed some kind of hope, a breakthrough, it's Bea and Steve
Levaquin for CNS bart...need to make notes.
Kelly
Posted by map1131 (Member # 2022) on :
I love it when there is great news. For your husband and yourself and what you guys went thru last year.....this gets my vote as the top story of great news flash on lymenet for '07.
Well you posted it in '08, but the turn around happened in '07.
May this only be the beginning of continued improvement for your husband in '08. To quote Paul Harvey "now this is the rest of the story." (or something to that effect) and improvement continues. Walking in the great outdoors. WOW
Pam
Posted by pab (Member # 904) on :
Bea,
I'm so happy for you and your husband. I hope Steve continues to improve.
Peggy
Posted by sixgoofykids (Member # 11141) on :
Great news! Levaquin was a miracle drug for me, too.
Posted by MagicAcorn (Member # 8786) on :
EXCELLENT!
Posted by sometimesdilly (Member # 9982) on :
dear Bea-
What super-duper wonderful news!!!! I couldn't be happier for you both!
I hope that Steve's progress means you can take some time for yourself to simply relax a bit. You both have fought so hard this past year- a genuine break has been more than overdue.
thanks for sharing the news!
hugs- dilly
Posted by shoney (Member # 9925) on :
I've followed your posts nad my heart ached for you. I hope you found the "magic" bullet and your husband continues to improve.
Posted by hiker53 (Member # 6046) on :
Looks like God's blessings are shining on you and your husband in the New Year. May this continue!! Hiker53 P.S. What dosage of Levaquin is your husband working up to?
Posted by oxygenbabe (Member # 5831) on :
Incredible, Bea. More power to you and hubby for TRUE GRIT.
Meanwhile, this just proves more than ever we need to test what's in ticks and test for these organisms in people so people don't have to go through years of the wrong abx.
Posted by lymeinhell (Member # 4622) on :
Now that's one heck of a Happy New Year gift!!
So glad you both finally catch a break.
(I believe the late Dr. D published a lot of info on how undxd bart affects the stomach).
Posted by lymeout (Member # 8045) on :
Bea, You and Steve have given us all a great start to the new year! You are such a great role model for perserverence, and to see that it is finally paying off gives everyone reason to hope and to keep trying. Take care! Cindy
Posted by seibertneurolyme (Member # 6416) on :
Hiker 53,
Hubby is trying to get to 500 mg of Levaquin daily. He started at 250 mg and recently increased to 375 mg.
The worriesome part of the equation is that he already did 3 months of Levaquin 3 years ago -- at that time was at full dose from the beginning. Never seemed to herx and just felt better -- made his elevated blood ammonia levels return to normal.
Since he had taken the Levaquin before we thought we should try something else this time -- but the oral Zithromax, IV Doxycycline and IV Cipro were all ineffective at decreasing neuro and G.I. symptoms.
3 years ago he was not having the same neuro symptoms as recently (much less severe)-- had Parkinsonian tremor, some mild myoclonus and seizure-like spells. These symptoms did not improve very much back then. But we didn't have any test results showing Bart so since it was being treated on a clinical basis we thought the 3 months was enough treatment.
It was a big surprise when we did the Fry test last year -- tested positive for Bart twice on bloodslides and even had antibodies the one time we tested for that. So this time we plan to continue treatment until test results are negative -- minimum of 4 -6 months before we plan to retest.
Per Dr S in Fl, Bart needs 2 different antibiotics to be successful. That is what we plan to do. Just not sure if Steve can tolerate the Rifampin -- other times he has tried that med it made myoclonus significantly worse.
We are halfway there since we have one med that seems to be working on the neuro symptoms -- also has decreased nausea but the G.I. issues seem to be resolving slower.
Bea Seibert
Posted by lymie tony z (Member # 5130) on :
GREAT NEWS,
Glad you went back to levaquin and got a positive responce.
This could have been because some other co/infection was battleing the levaquin the
first time you used it and therefore never touched the co/infection that now seems to be dramatically working for you.
With flouroquinalones comes the aoways present warning of major tendenitis.
I developed some muscular pain down my left leg and shortly thereafter I felt my ACL tear away
from my knee. It was very painful. But, I had to have that replaced anyway. The clindamycin
(another flouroquinalone) just made it sooner.
God Bless....and bea carefull...walking not to put too much strain on the achilles....
Have they ever allowed you vancomycin?
Now might be a good time to ask.
zman
Posted by lymebytes (Member # 11830) on :
This might be of interest. Dr. Burrascano explains treatment failure and then "cure" w/levaquin in this video - scroll down to and click on: Bartonella: A clinicians view point Dr. Burrascano at this link http://www.lymediseaseassociation.org/VideoView.html
Thanks for good news! Posted by clairenotes (Member # 10392) on :
So glad to hear the new positive developments.
Claire
Posted by lymie tony z (Member # 5130) on :
this thing told me webpage could not be displayed!????
zman
ps...I did get to LDA by clicking on your website but when I went to click on burrascano's video....
my puter said it could not be displayed...
I will try it later....
zman
Posted by Pocono Lyme (Member # 5939) on :
Hi Bea,
Definitely good news. I also started Levaquin Dec. 1st at 250, then went to full dose. I was seeing improvements as Steve. I went to full dose in 10 days and day 25 started feeling punky.
By day 27, it knocked me. Day 29 I took a break for 3 days. I restarted at half dose again and making improvements still.
I also am on Tindamax.
I am so happy for Steve and you. Hoping this will be the last hump to get over. It's definitely been a long haul. Hugs to you and Steve.
Posted by AliG (Member # 9734) on :
up for fin
Posted by bettyg (Member # 6147) on :
up... Posted by hopingandpraying (Member # 9256) on :
Bea,
It's always wonderful to hear good news that a treatment is working. I'm so glad that your husband has finally gotten better.
I know having your hubby healthy and well will be the best reward you can possibly have for all your struggles, dedication and sacrifice!
God bless you. You and all those suffering with this terrible, terrible disease are in my prayers every day. Posted by JRWagner (Member # 3229) on :
Well now Mr. and Mrs. S!!!
Considering the last time I saw you in the NY hospital, and all that you have been through...ain't this a good kick in the butt!
WONDERFUL!!! I am glad at least ONE of us has found some relief!
Now, the next time you come back to NY, we will have a nice dinner on me...er., not REALLY on me...they have these things called PLATES...yes, that's the ticket...we will eat off plates!!!
Keep up the fight!
Peace, Love and Wellness, JRW
Posted by minoucat (Member # 5175) on :
JR, you are just too, too conventional.I thought NY was the home of innovative dining?
Bea, I just wondered how you and your hubby are getting doing?
My hubby is doing IV avelox for bart -- it's in the quinolone family but doesn't seem to cause the side effects as much. It's remarkable how rapidly it started clearing up his brainfog and increased his energy level. Although he now has a nasty systemic candida infection...it's always something. This is his second or third round of treatment for bart. What a nasy bug it is.
Best of luck.
Posted by Soleilpie (Member # 8481) on :
Congratulations! That's really exciting news!
Please forgive me Seiburtneurolyme if I'm repeating a question that someone has already asked or if you've already answered this, as I'm not familiar with your husband's history. But was your husband diagnosed with Bartonella? Levaquin is generally used to treat that and I was just curious.
My mother was diagnosed with Bart and has yet to start her treatment on it by choice due to other medical issues she's taking care of first.
Anyway, my thought is that once she starts her Bart treatment, I think she'll see a greater improvement of her symptoms versus with her Lyme treatment. Your husbands case only strengthens my thoughts on this...that is if he has Bartonella.
Posted by canbravelyme (Member # 9785) on :
Hi Bea and Steve,
Thank goodness.
I spoke with my LLMD about it, and he tells me that the Biaxin will eventually kill it, so I persist. I shoud also mention that I requested we do an ammonia test, and LLMD agreed. See, your experience and blog helps us directly!
Who did you end up with for LLMD who put Steve on Levaquin?
Was Steve ever actually diagnosed with seizures?
I'm taking a combination of Lyrica and Lamictal, and I'm experiencing significant ability of symptom management.
Looking forward to hearing from you!
Best wishes,
Posted by Boomerang (Member # 7979) on :
Had not checked in here lately....so hadn't seen this thread.
What wonderful news, Bea!! I hope and pray your hubby is continuing to respond well.
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