Topic: Poll--how long do you generally go between relapses?
adamm
Unregistered
posted
Is the relapse-remission cycle fairly regular, or does the
severity of and amount of time between relapses keep changing?
Do you get back to 100% during each time the illness remits, or is
each slightly
worse than the one before?
How many years of his/her life should someone like me,
who contracted it as a teen, expect to be symptomatic?
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
With mine, I haven't noticed any type of cycle. It's just some days I feel okay and some days I feel terrible. I haven't really been able to pinpoint a cycle of herxes or anything like that.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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adamm
Unregistered
posted
As of now it is not known whether or not
Lyme can be cured any of the means we use.
There was actually a study, according to Randy Sykes, in
which Bumsteere and company found half of an initial
population of Bb alive and well after 14 days in a petri dish
of Rocephin. (It wasn't stated whether or not they
were in L-forms.) So yes...not a very effective drug (even
though it's supposed to be the best. Certainly by itself it
posted
I've been on IV Rocephin two times for eight weeks each. Both times I have made great progress and felt much better. Unfortunetly I have relapsed with in four months of each treatment. In my case the relapses have brought new and different symptoms than before. Overall I am 50% better than I was before being treated with the Rocephin and some days I actually feel about 80% but it doesn't last. On orals now and most likely will be for a long time.
Posts: 142 | From Florida | Registered: Oct 2005
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posted
I wasn't diagnosed until 8 years after bite and bull's eye rash (in Fla back then, Lyme wasn't supposed to exist).
Anyway, started treatment with IV Rocephin eight weeks. From there, have been on antibiotics over 3 years. Am so close to my first remission (according to my LLMD and the way I feel).
I take 200 mg Doxy am and pm AND 250 mg Azithromycin am and pm
I have always thought IV Rocephin was a start - not the whole treatment. And, I have never read where there is a cure. Just a series of remissions - hopefully, very very long ones.
In prayer..........
Posts: 108 | From Florida | Registered: Sep 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
No cycle, does what it wants when it wants at anytime!
posted
I contracted Lyme as a child and had random symptoms through HS, mainly fatigue, leg pain, shoulder pain, and back pain.
In college I had my first flare up that was disabling. It resolved on its own with rest, exercise and sunshine.
That happened twice more. The third time I had my amalgams out, got into health food, exercised, etc. I was healthy after that for 12 years.
I finally got diagosed a little over a year ago and am really close to remission right now.
You can get the upper hand on this and lead a normal life. If I had had the benefit of knowing it was Lyme when I was a teen, I would have had even more good years than I did.
Now I feel the best I've ever felt.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I have not been online barely at all but this thread caught my attention then made me want to respond because it referenced me by name.
In fact, MomfromTexas referenced me by name, alluded to my recovery on Rocepihn and then wondered whether those who recovered on Rocephiin really had Lyme at all? SO let me assure you, I had tick bite, EM rash, onset of symptoms and positive serology. Lyme disease.
QUOTE from MOmFromTexas
Other than Californialyme and a handful of others almost everyone relapses after being on IV Rocephin, and it takes from 2 to 3 months.
When they relapse many times new symptoms show up and many times they are worse off.
Some say when they relapse they are not as bad, but those such as CaliforniaLyme, rather than completely stopping antibiotics when they stop Rocephin, have just switched to an oral.
I am starting to wonder if use of IV Rocephin is a ticket to chronic Lyme!
If it's ability to prevent and repair the nerve damage from the chemical produced by the spirochetes allows it to appear to be killing the spirochetes when in fact it is doing nothing.
That the one or 2 people that have managed to recover on it actually did not have Lyme but possibly something else?
UNQUOTE
That's weird to read all those anti-Rocephin comments, Momfromtexas, because you commented on this thread
so I KNOW you read it- and by far and away everyone did NOT relapse and only one said she was worse off later on. Everyone else said they would do it again EXCEPT for that one person.
Maybe the strong language from the one person who got worse made a bigger impression than all of the people who had lasting improvement.
I am bringing this up because it is important not to downplay what can be a neuro Lymies greatest hope. No, IV Rocephin doesn't work for everybody, but it sure works wonders for some of us.
I think the strong language of the one person must've made a bigger impression than the rest of us- here- so you can see, again... Take care, Sincerely, Sarah
Topic: IV Rocephin Poll SForsgren Frequent Contributor Member # 7686
posted 17 January, 2008 01:47 PM -------------------------------------------------------------------------------- I am interested in understanding more of people's experiences on IV Rocephin. If you could answer the following, I would appreciate it.
1) How long did you do IV Rocephin? 2) Did you do any other IV treatments? 3) What % improvement did you have while on IV Rocephin? 4) Did you relapse after stopping? 5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy? 7) Did you do 2g x 7d or 2g BID x 4d a week? 8) Would you do it again if you knew then what you know now?
Thanks in advance for your comments.
-------------------- In Better Health, Scott (aka "The Better Health Guy") Contributor to "Public Health Alert"
-------------------------------------------------------------------------------- Posts: 3191 | From: San Jose, CA | Registered: Jul 2005 | IP: Logged
Michelle M Frequent Contributor Member # 7200
posted 17 January, 2008 02:22 PM -------------------------------------------------------------------------------- 1. IV Rocephin for 30 days. 2 grams daily, 7x/week. 2. Did not appreciably help that I could tell. 3. I had (unknown) babesia WA-1 which may be why. 4. Would I do it again? In a heartbeat.
posted 17 January, 2008 03:34 PM -------------------------------------------------------------------------------- 1) How long did you do IV Rocephin?
9 months.
2) Did you do any other IV treatments?
no.
3) What % improvement did you have while on IV Rocephin?
from bedbound with gross neurologic Lyme & incipient dementia to almost normal- -10 to 95% add in Babesiosis tx, which like Michelle M had not been done before IV, and I went to 99%.
4) Did you relapse after stopping?
No, I transitioned to orals.
5) If you relapsed, to what point did you relapse?
Have kept all gains for 8 years now.
6) How long have you maintained any gains from IV therapy?
Have kept all gains for 8 years now.
7) Did you do 2g x 7d or 2g BID x 4d a week?
2 grams once a day for 7 days for 9 months.
8) Would you do it again if you knew then what you know now?
Yes, absolutely. It saved my life.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer
-------------------------------------------------------------------------------- Posts: 5627 | From: Aptos CA USA | Registered: Apr 2005 | IP: Logged
No but I am going to inquire about Magnesium IV and Levaquin IV.
3) What % improvement did you have while on IV Rocephin? Saw no significant improvement till December of this year which would put me at five months into Rocephin IV treatment.
4) Did you relapse after stopping?
I have not stopped yet and expect to continue for nine to twelve months.
5) If you relapsed, to what point did you relapse?
I just had gallbladder surgery 10 days ago and felt a slight relapse from the surgery. I feel however I'm making those gains back. I'm back on my elliptical doing 30 minutes daily.
6) How long have you maintained any gains from IV therapy?
Prior to gallbladder surgery I felt I was 90% back to where I was prelyme diagnosis in June of 06.
7) Did you do 2g x 7d or 2g BID x 4d a week? 8) Would you do it again if you knew then what you know now?
I am currently doing 2grams every single day, seven days a week.
I also am at Tindamax 1000mg since early October. I would absolutely do it again even after losing my gallbladder.
Scott,
I did one year of orals and six full months of bicillin at 4.8 million units a week prior to starting Rocephin on July 1st. I believe I was already at 70% before starting the Rocephin IV. From what I've heard and read, the Rocephin IV turn the corner moment comes around the 4th-6th month. In my case it took that long but the improvement was dramatic and noticeable.
Barb in San Francisco -------------------------------------------------------------------------------- Posts: 118 | From: san francisco | Registered: Jun 2006 | IP: Logged
merrygirl Frequent Contributor Member # 12041
posted 17 January, 2008 04:34 PM -------------------------------------------------------------------------------- 1. 30 days 2. No 3. 25% 4. Some, but still was better after IV 5. started to feel worse after stopping the Rocephin 6. I think I would be a lot more ill if I hadnt had rocepin
7. I infused 2g x 7d 8. Without hesitation
-------------------- Fight or Flight!
-------------------------------------------------------------------------------- Posts: 1426 | From: USA | Registered: May 2007 | IP: Logged
listenswithcare Frequent Contributor Member # 10719
posted 17 January, 2008 04:45 PM -------------------------------------------------------------------------------- 1) How long did you do IV Rocephin?
5 months
2) Did you do any other IV treatments?
Yes, 2 months after Rocephin, started IV Vitamin C, magnesium, B5, B6, B12, glutathione. Once per week, still getting them.
3) What % improvement did you have while on IV Rocephin?
Neuro - 75% improvement
4) Did you relapse after stopping?
I backslid some, but not alot
5) If you relapsed, to what point did you relapse?
c) Some, but gained back that ground already
6) How long have you maintained any gains from IV therapy?
So far, since Sept. 07 - 4 months
7) Did you do 2g x 7d or 2g BID x 4d a week?
2g X 7d
8) Would you do it again if you knew then what you know now?
Yes
Robin -------------------------------------------------------------------------------- Posts: 216 | From: Maryland | Registered: Dec 2006 | IP: Logged
quote: -------------------------------------------------------------------------------- Originally posted by SForsgren: I am interested in understanding more of people's experiences on IV Rocephin. If you could answer the following, I would appreciate it.
1) How long did you do IV Rocephin?
3 months
2) Did you do any other IV treatments?
not at the same time, but afterwards, multiple combinations
3) What % improvement did you have while on IV Rocephin?
HUGE...about 75%
4) Did you relapse after stopping?
No, because I started IV Zithromax afterwards plus other orals with it.
5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy?
Yes, going on 6 years.
7) Did you do 2g x 7d or 2g BID x 4d a week?
Stared with 2g/daily, then 4 g daily...then added IV Zithromax
8) Would you do it again if you knew then what you know now? Of course, but I believe combinations are essential. Must treat co-infections. I do not believe that one single antibiotic at a time is the answer, it has to be combinations and for extended periods.
Thanks in advance for your comments. --------------------------------------------------------------------------------
--------------------
WildCondor's Lymelinks & Lyme Story
LymeWorld Support Group
-------------------------------------------------------------------------------- Posts: 5466 | From: The Lake | Registered: Nov 2000 | IP: Logged
kam Frequent Contributor Member # 3410
posted 17 January, 2008 06:43 PM -------------------------------------------------------------------------------- I am interested in understanding more of people's experiences on IV Rocephin. If you could answer the following, I would appreciate it.
1) How long did you do IV Rocephin?
NOt sure. Wish I had better records of what I took and for how long. But, was just not up to it.
I recall taking it twice. In 2006 for several months (perhaps 6 months) and possibly a couple of years before that...2004? (guessing 6 months)
Sorry...I would prefer to give you more accurate info.
2) Did you do any other IV treatments?
Do you mean while on the IV rocephin? Yes.
3) What % improvement did you have while on IV Rocephin?
...When I first started I went through a good cycle and thought viola...but it did not last.
A good cycle meaning I was able to do a little bit more.
The second time I did not have a problem with giving myself the infusions. The brain was working better.
I felt it was slowly getting my brain back. I was a pretty sick puppy.
4) Did you relapse after stopping?
...I can't recall. I know I have had ups and downs with this since it hit big time in 2001 with and without meds.
5) If you relapsed, to what point did you relapse?
a) Back to where I started IV
b) Worse than when I started IV
c) Some, but still was better after IV
I would do it again. With me it is a slow climb up the hill.
6) How long have you maintained any gains from IV therapy?
..Again, with me it is not one thing but it seems like a little of this and a little of that.
7) Did you do 2g x 7d or 2g BID x 4d a week?
..it was 7 days a week. one bag. Guessing 2g x 7d
8) Would you do it again if you knew then what you know now?
...yes.
-------------------- Life came to a stop in 2001. DX and started treatment in 2003. Currently taking amoxy, sulfur drug, lecithin, DMAE, probiotics, Vit C, Ginko Biloba, B Complex, podi patches and enjoying xango. Water Therapy, oils for sleep
-------------------------------------------------------------------------------- Posts: 4395 | From: Undercover in AZ | Registered: Dec 2002 | IP: Logged
Patrick Frequent Contributor Member # 8108
posted 17 January, 2008 10:55 PM -------------------------------------------------------------------------------- Hi Scott,
This is an interestting poll I'm very curious to see what others have experianced. Thank you for starting it.
1. 70 Days First Time 2005 60 Days Second Time 2006 2. No 3. First Round 80% Improvement Second Round 50% Improvment 4. Yes - Big Relapse After First Round Found Co-Infection After Second Round 5. Better Than Before Starting IV. Relapse Brought On Different Symptoms I Had Not Had Before IV. 6. First Round 3 to 4 Months Second Round 6 Months 7. First Round 2g 7 Days A Week Second Round 4g 5 Days A Week 8. Even Though It Cost Me My Gall Bladder The Over All Gain I Got From Rocpehin Was So Enormous I would Not Hesitate To Do It Again.
Patrick -------------------------------------------------------------------------------- Posts: 137 | From: Florida | Registered: Oct 2005 | IP: Logged
fatigued15 Frequent Contributor Member # 6437
posted 17 January, 2008 11:44 PM -------------------------------------------------------------------------------- I am answering this for my daughter
1) How long did you do IV Rocephin?
3 months stopped due to gallstones
2) Did you do any other IV treatments?
After Rocephin IV Claforan with no results and presently on IV Doxy
3) What % improvement did you have while on IV Rocephin?
slow but steady, memory, brain fog, etc. improved. IV Doxy is showing a faster response.
4) Did you relapse after stopping?
Stayed the same when on Claforan.
5) If you relapsed, to what point did you relapse?
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy?
Still on it. 7) Did you do 2g x 7d or 2g BID x 4d a week?
2g once a day
8) Would you do it again if you knew then what you know now? YES!! Taking oral abx at the same time as IV -------------------------------------------------------------------------------- Posts: 296 | From: NY | Registered: Oct 2004 | IP: Logged
Momfromtexas Frequent Contributor Member # 13726
posted 17 February, 2008 01:24 AM -------------------------------------------------------------------------------- UP
This is a very interesting and useful post.
Please share your stories with us! -------------------------------------------------------------------------------- Posts: 128 | From: Texas | Registered: Oct 2007 | IP: Logged
Tincup Frequent Contributor Member # 5829
posted 17 February, 2008 01:52 AM -------------------------------------------------------------------------------- 1) How long did you do IV Rocephin?
One month first time
Three weeks second time- became allergic to it.
2) Did you do any other IV treatments?
Yes. Penicillin 2 times.
3) What % improvement did you have while on IV Rocephin?
Zero.
4) Did you relapse after stopping?
Yes.
5) If you relapsed, to what point did you relapse?
Worse than when I started IV
6) How long have you maintained any gains from IV therapy?
2 months max.
7) Did you do 2g x 7d or 2g BID x 4d a week?
1 gram 1X day for one month. Doctor then realized he messed up the dose and re-treated with 2 grams a day for three weeks until the allergic reaction hit.
8) Would you do it again if you knew then what you know now?
NOPE!
-------------------- If you get the choice to sit it out or dance...
``````````````````````````````````````` I only do what the Rice Krispies tell me to do.
-------------------------------------------------------------------------------- Posts: 5246 | From: The Moon | Registered: Jun 2004 | IP: Logged
daise Frequent Contributor Member # 13622
posted 17 February, 2008 03:20 PM -------------------------------------------------------------------------------- 1) How long did you do IV Rocephin? 6 months, pulsed 4 days on, 3 off. 1 gram infused twice a day.
2) Did you do any other IV treatments? No.
3) What % improvement did you have while on IV Rocephin? About 50%
4) Did you relapse after stopping? No, I went immediatly to 10 months of LA Bicillin shots in the butt and orals.
5) If you relapsed, to what point did you relapse? N/A
a) Back to where I started IV b) Worse than when I started IV c) Some, but still was better after IV
6) How long have you maintained any gains from IV therapy? A year and a half and still on antibiotics.
7) Did you do 2g x 7d or 2g BID x 4d a week? 2g BID x 4d a week.
8) Would you do it again if you knew then what you know now? In a heartbeat. I am grateful I got my meds paid for! I am now 75% better overall and fatigue has improved 80%. I look to get even better, now with bart treatment and possible babs treatment in the future.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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