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Post by californialyme on Oct 29, 2007 14:05:52 GMT -8
 I'm a refugee from LymeNet, checking out this board. Had Lyme for 10 years now, been doing great for years & years- no symptoms, a full life, a good life. I was caught right away but undertreated. Ended up with 9 months of IV Rocepihn which saved my life. Happy to be alive, happy to be here, on this earth. Best wsihes to all, Sarah O. Aptos, CA Where the ticks are vicious and the ID doctors are worse*)!!!!!!!!!
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Post by LymeEnigma on Oct 29, 2007 17:45:07 GMT -8
Welcome! :-)
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Post by hakutsuru on Oct 29, 2007 19:47:45 GMT -8
Welcome to the board. People here are friendly and everyone is free to have differing opinions without fear of personal attack.
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Post by cobweb2 on Oct 30, 2007 5:13:17 GMT -8
Greetings from the East Coast! ;D
Calli- I've been meaning to ask you-how did you determine that 9 months of IV Rocephin was enough?
I have had great results with the IV-started in March-now into 8th-posssibly 9th month-I don't do math well. Never did , so I can't blame it on lyme.
I don't know if I have been rocketed into a new dimension in the last month because of the Rocephin -or if the Rifampin which was just added is what tweaked the treatment.?
Cobby
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Post by itsybitsyone on Oct 30, 2007 5:42:11 GMT -8
HI Sarah.
I think we are all refugees from somewhere...lol
Lymenet being the most recent mass exodus. I like it here, its where I have been spending most of my time when I get the chance to post anywhere...
We can actually act like grown-ups here!! Go figure!
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Post by cobweb2 on Oct 30, 2007 6:01:09 GMT -8
This feels like Home to me.  |
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Post by LymeEnigma on Oct 30, 2007 6:22:41 GMT -8
Thanks, guys! :-)
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Post by californialyme on Oct 30, 2007 6:27:45 GMT -8
Heck, 10 months of IV Rocephin would have been better!! But we had already spent $50,000 cash from a second mortgage and then my groshong had to be pulled and it was just too much $ for us to put in a new one even though we were using FREE Rocephin at that point- first 6 months- $50,000 and then last 3 months free- and I was doing so well- but I always think 1 more month would have been full remission but heck, who knows!!!
Rocephin was miraculous to me. My brain felt the best it has ever felt ever by the last days- free, happy, clean. A clean brain.
As well as losing CFS, FMS, RLS, MCS and a progressive severe neurological illness, I lost a lifelong fear of heights without even noticing it (my ex husband noticed!)- and also a low level anxiety I had my whole life. Makes me believe I was sick a long, long time before the last tick bite- I had a history of previous tick bites, suspected lupus and recurrent malaria so heck, my poor brain, god knows what was in there!!!
But IV Rocephin helped me be normal again, stopped the slurring, stopped the movement disorder in my left hand, stopped the tremors and progressive muscle weakness-
I LOVE Rocephin-
Sincerely,
Sarah
p.s. At 6 months IV Ropcehin I had still been getting progressively worse, I turned in the 7th month, and months 8-9 I speeded up, every day betetr & better & better!!!!!!!!!!!!
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Post by itsybitsyone on Oct 30, 2007 7:52:04 GMT -8
Sarah...
With all your local support stuff you do...how many actually got better with orals if they got to late stage without treatment?
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Post by californialyme on Oct 30, 2007 8:46:34 GMT -8
Itsy, everyone I have seen gets BETTER with orals, but not full remission, not late stage chronics. Cihldren get full remission with orals, that I have seen- but late stage chronics- I don't see that... I do see full remission with IM & orals alone or with orals FOLLOWING IV!!!
And newbies get better with orals all the time(*)!*!)! If just bitten- or sick less than a year- we have a local guy right now about 70% better after only 5 months orals!!! Lucky guy*)!*)!
He was sick about 7 omnths pre-abx-I think he will be in full remission soon- So it does happen- but people sick years & years, seem to need IM or IV- EXCEPT that one ALS guy who got better on orals- BUT he is not in full remission- he is at 100% but is on maintenance abx!!! he is on Doxy last I heard- but totally well and working full time (he is a flea market salesman).
Best wishes,
Sarah
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cave76
Established Member
Posts: 54
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Post by cave76 on Oct 30, 2007 18:12:40 GMT -8
Just to show that not everybody gets better the same way. (And I know Sarah will agree with this) I've known people who got better on orals only. No IV and no IM. In fact I was just talking to one this afternoon. She may not be CURED-- (who can say that?) but she's certainly been in a pretty darned good remission for years. Very occasionally taking a few abx for a very short time, which is not unusual for people to do while 'in remission'. |
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Post by itsybitsyone on Oct 31, 2007 7:28:37 GMT -8
Sarah and Cavey...
Thanks for your input.
I'll keep trying with this Mino for at least a little while. And maybe finally add in the plaquenil and whelchol I have been waiting to bother trying.
The whelchol is one of those cholesterol binding drugs that is supposed to be good for the toxins and the cholesterol (mine is high anyway)
We'll see.
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Post by LymeEnigma on Oct 31, 2007 8:28:38 GMT -8
Nancy, I think you'll notice more improvement once you have the plaquenil in your system (which can take months); I'm really gung-ho about the macrolide/plaquenil combination right now, just given the improvement I experienced on zithro/plaquenil.
I'm not sure I agree that IV antibiotics are necessary in all cases. I think, given all of the autoimmune issue I have been dealing with, both now and in the past, I am about as far into remission as my body will go. I still get the monthly cycle and a lot of rhemuatological issues, but compared to the hell I was in before treatment my persisting symptoms are a walk in the park (well, not always, but the difference is huge...). I'm honestly not sure I believe IV antibiotics are capable of inducing a sustainable remission any better than orals, but I could be totally off base in my rationale. I personally think the future of chronic Lyme treatment will lie in a gentler approach, similar to the experimental doxy treatment currently being tried on some lupus patients; I think, if we can't knock them out quickly and completely with the big guns, a better approach might be keeping the bugs on their toes with just enough antibiotic to make them think they're under constant attack ... keep them in their cystic form until they simply expire, while preserving as much of the host body as possible.
I have not tried IV treatment. I took two months of doxy six months after the tick bite and EM, a week of Cipro about six months later, ten days of Avelox three months after that (the Cipro and Avelox were for "throat infections"), and just recently a month of Mepron combined with zithromax, and then another five months of the zithro combined with plaquenil. The doxy caused a pretty significant herx (and also induced serious Lyme rage for a day or two ... very scary), although no other antibiotic I took induced any unusual reaction, nor the fever, chills, and body aches that come with a herx; I did herx severely when I started taking cat's claw, of all things (102 fever ... my body felt like it had been hit by a semi), which I started two months before going off the prescribed meds.
I think even the most experienced of doctors are still struggling to figure out what the best approach to this disease is. My philosophy is this: as long as you're not Rifing, drinking colodial silver, or injecting yourself with peroxide, etc., if it works for you, keep at it; for those still looking for their ideal treatment strategy: as long as you're not being diagnosed via Applied Kinesiology or voodoo witch-dance, keep your mind open and be willing to give a few different options a try. What works for one person might not work for the next, although some consistencies in treatment among all patients do also likely exist.
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Post by itsybitsyone on Oct 31, 2007 11:17:52 GMT -8
Keep them in cystic form until they expire...
See that's why I have been trying to figure out these bugs...how long they live, how long they can exist in hiding...and they life span. If I knew how long that would take, we could all guage how long how long to be on this stuff.
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Post by LymeEnigma on Oct 31, 2007 11:42:15 GMT -8
Still looking for studies on their lifespan ... it seems everyone is more interested in the Bb's life cycle in ticks than in humans....
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I'm a refugee from LymeNet, checking out this board. Had Lyme for 10 years now, been doing great for years & years- no symptoms, a full life, a good life.
