i think its time to tell you my story. maybe it can give anyone at least a bit of hope, maybe anyone from you has advice how to go on.
years ago i used to be a regular visitor and sometimes also a contributor of this flash discussion. i had fatigue for years, severe neurological symptoms and pain for more than a year, saw (like most of you) without results dozens of doctors, was unfortunately treated with steroids sereval times before an online-research brought up the possibility of lyme. at this point of time i felt nearly dead from all this pain.
after being diagnosed be a great llmd i was treated with abx for more than 3 years, lots of iv at first. the results came slowly step by step, but they came. i had 3 great years with very mild symptoms. i could work, fell in love again, could travel, move on and enjoyed every moment of the normal life - which before i never thought would be possible again. at the end i was nearly a year without abx. then i took two months abx again (just in case). then paused for three months. i lived very healthy.
after i got better and better my visits here were quite rare, i have to admit. but now i'm back. guess why - relapse. the fight goes on, but at least now i know what i'm fighting for. at least �ts possible to control lyme, over a period even without abx, maybe even more is possible.
i guess you want to know the meds: i have been about half a year on rocephin, first 7 days a week, then 5, then 3 days. with the rocephin i took biaxin and plaquenil, then i stopped the rocephin and resumed on biaxin and plaqu, then took zithromax for another half of a year, sometimes my llmd interrupted the longs terms with clont.
now i'm starting on rocephin again. at first 3 or 4 weeks every day. i'm thinking about what would be good to combine it with? clont? zithro or bixin with plaquenil? anything else? and what to follow after roc? (i am looking for ideas for the next appointment with my llmd.) any other recommendations?
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posted
I've had good luck with a modified version of Dr. B's 2005 protocol, combined with some ideas from Dr. E, Dr. J, Dr. L, and the combined suggestions of many Lymenetters. Also use an excellent Dr. Z herb for liver enzymes.
Lyme: ketek, omnicef, short course of pulsed flagyl
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
hi fellow relapser...good and sorry to meet you!
I am a relapser too. (that makes me chuckle, like I am in AA)
First diganosed with Lyme in 1991. only two weeks of tetra..but had 10 good years.
relapse or reinfection in 2001. 2 months IV and 6 months of orals. Had pretty good 3 years.
Relapse in late 2004. still suffering.
I guess the thinking right now is that you must properly treat the coinfections before treating lyme. This means that Rocephin may not be your best first option, as it does not treat many of the co's. And it is very well known to have many relapsers. Not to mention the liver and gallbladder stuff---eh?
I agree with Liz---look at Dr. B's 2005 guidelines. here is a link to them. At first they look the same as the old ones, but there is LOTS of new stuff in there....read thoroughly. It is a big eye opener.
I would like to know more about what symptoms you suffer from and how you know you have now relapsed.
I am sorry this roller coaster disease is taking you for a ride too! Take good care! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Alex, I read your title, and said WHOOPIE, ANOTHER SUCCESS STORY!
I'm sorry to hear you are back with this wonderful, caring, educational group of lymies!
Glad you had some good healthy year or more. Yes, you have provided H O P E!! We all need to see that from comments daily vs. all the bad, no-hope situations.
Best wishes that this journey be a short one for you Alex.
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alexander
Unregistered
posted
thank you so much for your nice words!
i'm not sure if i deserve them after staying away that long from this flash discussion.
reinfection is impossible. i am so paranoid concerning grass and forests that i stay completely away from them now.
but in two other points you may be right:
1) maybe i shouldn't have stopped the abx cos i still had mild symptoms. but on the other hand my llmd said it was worth a try and before that my state didn't change anymore for about a year. so if the meds dont bring me any further anymore why take them, i thought? but maybe i should just have changed on another.
2) coinfections may be a good point. in all tests i never had a single coinfection, but as i learned from burrascano today this as in lyme doesnt mean anything. on the other hand it is hard to fight a coinfection you dont know.
trails, you wanted to know my symptoms: i have severe nervepain in the essential joints, which made working impossible for a time. in my darkest hour i had the feeling that my whole body was burning from the inside.
at the moment i combine rocephin with flagyl (which btw is the same as clont, lymetoo) cos flagyl seems to hit the intracellular and the cyst form - at least in theory.
all the best for everyone of you for now, alex
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posted
Alexander - I am also sorry you are back b/c of symptom return BUT I feel you are a success story and have no doubt that you will get the Lyme in check again.
I also used to come here years ago...then took a break for about 3 years or so b/c I just got better.. much better....
In the last year and a half I underwent a tremendous amount of stress... Long story short my husband was in a near fatal accident and I was his caretaker for a long time... Just in the last 6 months his complete health has returned...
Along with other finacial and emotional strains, my Lyme symptoms came back with a vengence...
I am now in the process of getting back to my baseline.. although lots of bigger stressors to face this time around..
But still I am doing it despite, and I think you will have GREAT results...
So glad you posted to give others hope...
I was bedridden for years...
even now not at 100% I am able to go to school to finish my degree full time, help get my husbands new business up and running, and function at about 70%...
What you wrote could have been written by me. I too, got well and went about one year without antibiotics and just when I was convinced that I was home free, the symptoms started creeping back.
As a fitness professional, I live a very healthy lifestyle and felt that I did everything humanly possible to avoid a relapse and yet, .... here I am. Back at Lyme Net, just like you.
It is so hard to accept and yet, there are many of us. Good people, who did everything right from meds to healthy diet to exercise to plenty of sleep to lots of laughter and yet, we relapsed. Somebody has just got to figure out this illness, please.
I noticed in your top ten that swimming helped you. Me too - one of my top ten. When things got so back and my joints would not tolerate any other exercise, swimming was magical for me.
All my best wishes for all of us,
Suzie-Q
Posts: 20 | From Lake County, IL | Registered: Dec 2000
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alexander
Unregistered
posted
hello suzie,
great to hear you also had some success fighting the enemy in you - at least for a certain time.
curious to know what abx you used before your medfree year and what you use now?
maybe this is a totally different subject, but do you also do sport while you are on iv? i went swimming every day while on rocephin and today i feel like it was a bit too much.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Alexander and Suzi,
I'd also be interested in finding out more about swimming -- when in treatment you started it, how often you swam, type of pool or water, etc.
This is something I really enjoy but, in all honesty, I don't want to do anything that might inhibit my slow progress and/or cause me to relapse.
Alexander, I'm glad you're back again and appreciate the fact that you're sharing your experiences.
Here's hoping you make speedy progress!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Alexander,
On the coinfections issue:
Sometimes the coinfections will test positive later in your treatment, as the immune system becomes more active. Also, some infections, like Bartonella, are known to periodically ramp up, and so you will have cycles of antibody production.
I have found this true in my own case, and various coinfections would seemingly rise to the surface as we got other issues resolved. So, just testing negative one time, doesn't mean that you would still test negative. Sometimes you will only test positive after a brief period of trial treatment, again, just like Lyme.
The meds I used that got me to a great place were Plaquenil (400 mg) and Biaxin (1000 mg)daily per Dr D in Boston. A fairly common protocol. I also avoided certain supplements based on his experience and research.
Since I just relapsed and now live in a new area, I haven't yet seen a new doctor to consider trying different meds.
I never used an IV so I'm sorry, I can't answer your question there. But, I will say that during my worst times, some days I could actually swim while other days just making it into the water and basically floating around was all I could do. I do think that we have to determine for ourselves what will help us each day in terms of exercise. Somedays when I could not do any cardio (not even walking), yoga felt great. I know you understand - you go from being able to compete in triathlons and climb mountains and then suddenly finding a 2 mile walk exhausting!
Andie - you asked when in treatment I started swimming, how often you swam, type of pool or water, etc.
Great questions. I turned to swimming when my body really couldn't do much else. Once I found the tremendous relief that being in cold water brought to me - it became my salvation. Getting to the pool was sometimes a huge challenge but once in the water, I always felt relief. As I mentioned above, I just listened to my body about how much or how hard to swim each day. Very important for me - cold water felt great - warm water did not. I swam in pools and in the ocean and in lakes - anywhere! I would try to go in the water for at least ten minutes every day - but usually for about 30 minutes. It doesn't sound like much but it did really help me. That's why I was so happy to see that Alex also listed it in his top ten.
From my experience, I do believe that slow easy swimming in cooler water will definitely help your recovery not hinder it.
All my best,
SUSAN
Posts: 20 | From Lake County, IL | Registered: Dec 2000
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WildCondor
Unregistered
posted
Welcome back! You beat it once, you can beat it again! Keep up the good attitude and thank you for the contributions in your progress post! Keep fighting!
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I cried my eyes out last week when I read through pages of your web site. Your site is the most beautiful and inspiring site I have ever seen!! Your list of links is so impressive, helpful and complete - I can't even fathom the amount of time you have put into it's creation.
Of course, you didn't know that I had just read all about you on your site last week ... and so today, when I see that you (of all possible people!) posted words of encouragement here directly following my comments - I marvel at the cosmic connection.
Bless you, SUSAN Posts: 20 | From Lake County, IL | Registered: Dec 2000
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