posted
umm, after some early initial success, things are going downhill.
My doc wants me to start 6 weeks of Zithro plus artemisinin...
But at this point, I'm open to some new ideas. I'm almost a tabula rasa - I've had v. little treatment so far... if you had it to do all over again, what would you do?
Any success stories out there who didn't use mega-abx doses? Any who did? Which ones etc?
Feeling discouraged. Please, need to hear some success stories with particulars - what did you do etc?
V. interested in low-dose or "non-standard" (if there is such a thing in Lyme) approaches...
THANKS! Am feeling ridiculously bad and discouraged right now
posted
no no no no no. I don't want to hear about four years of abx!!!!!!!!!!!!!!!!!!!!
who got better no low dose? or pulsed? or the marshall protocol? or using heparin? or or or doing bee stings or all othe other crazy things people do...?
I WILL NOT take four years of abx!!!!!!!! no way!!!!!!!!! I'm having a fit even thinkng about it!!!!!!!
sorry. but there has to be another way.
i've barely taken any abx yet!! aren't there people who get better just on IV something or other for a few weeks? aren't there new and different approaches?
This board is extremely beneficial, but it can confuse/deject. I think you do find a high majority of the extremely problematic cases on this board. I don't think this is by and large the majority of Lyme sufferers. I live in CT where this disease runs rampant and have talked to numerous success stories that didn't take 800 years of antibiotics. My jury is still hung. Yes, Lyme is complicated, yes it's very tricky. I have a close friend who had neurological lyme and he was better on 5 months. A woman diagnosed with MS for 13 years and better in 6 months. I just don't think those people come back to live on this board. They are out living their lives. If you do the math, you'd realize that. That being said, there are some smart people who know a lot about Lyme over here that can help educate you on what it takes to get better. This board is excellant in that regard. Just be smart in picking and choosing what to believe in or else you'll get yourself down. My advice, get your treatment under control, get your immune system back up, understand whether there are any complexities in your specific case(co-infections, any other contributing factors). Take it from there. My jury is still hung on what it takes. I was in pretty bad shape, I mean, REALLY bad shape last fall. I've been treated now for 4.5 months, now on IV, and I feel much better than I did. If you are late stage, it may take a while. I'm expecting at least a good 6-7 months of antibiotics.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
It takes time treating it and it all depends how long you have been infected and if theres coinfections and how your immune responce is. Anyway you look at it you just dont have a choice if you want to get better.
Sorry good luck.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
BorreliBrain, I too had some initial success with abx and the things started going down hill fast. Waxed and waned for about 2 yrs and then I hit the wall.
Continued the abx routine and then after 3+ yrs, I decided there's got to be another way. Abx just was'nt going to cure me. In fact, my gut told me it was doing more damage.
Tried many different remedies, heparin, hormones, supplements. It just went on and on. Finally one day I was drawn to a thread about rife machines.
I have made lots of progress in 2 yrs. I'm not using the cured word yet because I continue to have symptoms. But my bad days are nothing compared to where I'd been.
There has been a couple times in that 2 yr period, that I thought I would try an abx again. Within 3 days I'd say no way am I going to go back to abx hell. That is what they do to me, so I completely understand you not wanting to go there anymore.
It can get better with alternative treatments. I'm not saying they are a quick fix either. The really bad thing about most of these treatments is they're not covered by insurance. I've paid some major $$$$ out of pocket. But it has been so worth it.
Of course I can say this now, because I'm on the other side of lyme hell.
You've really will need to think outside the box. Do lots of Gigi & skyking reading, it will get you thinking about different things.
posted
Hi BB, So sorry you are going through this. That's ok don't be sorry....what you are feeling is normal and what many of us have been through on our road to getting better.
I stayed away from here because after 6 months of abx I was 70% better.
I even wrote about how I knew I was going to be a success story when they were soliciting for those here. I still think I will be.
I had a relapse recently and my doctor thinks I have a co-infection that is treated with other things and not just antibiotics!!
The idea of co-infections is new yet new research is pouring in about how these are part of the problem in chronic lyme cases. Some of the chronic cases you see here are highly co-infected and have not recieved proper treatment for these infections.
I do not want to "live" on this board either!!! If i had my way I would not be dealing with this anymore. I was diagnosed about a year ago and have had this a long time. This is a way to cope but people do get better when treating for everything. antibiotics are really rough the first few months. I was in really bad shape when starting treatment and thought it would never let up. It did.
You are going through the stage all of us went through...just don't miss the treatment and let it get worse...the fear is normal and also part of the neuro stuff with these TBD's
hang in there and come here when you need to We are all in this together!! Hugs for you!! -pippy
Posts: 446 | From California | Registered: Jul 2004
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posted
Thanks for your post BB! And thanks for your response, Ruffy! I had thought that same thing myself. There is some "selection bias" here because if you're feeling GREAT, you're probably not hanging around message boards trying to figure out what tx to try next! I am only 2 weeks into abx tx and feeling very discouraged at the long road ahead (and thus visiting the message board looking for encouragement and new ideas....and FINDING THEM...so thanks everyone for that).
Thanks again for your post, and we can try to hang in there together!! Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Hang in there BB! There are certain things you just can't rush. I remember once in high school, my brother cooked dinner or his girlfriend. He was running out of time, so decided to just cook the chicken at a higher temperature for a shorter period of time. You guessed it. The chicken was raw on the inside and burnt on the outside.
I have heard of some quick fixes and miracle cures for Lyme. But I am nervous to try them, because I can't help but think that they cost a lot of money and don't do much good. It's my body we are talking about, and I will put the time into making it better.
When I started treatment, I promised myself I would give it 1 year. You may think 1 year is so long, but honestly, it's nothing compared to the year before treatment when I couldn't use my hands.
At about 6 months, I started doubting the treatment. At about 7 months, things just turned around. I looked and felt healthier. It's now month 16 and I am still on abx, but hope to be off in 2 months.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
It really depends on how long you have had Lyme, whether you get well quickly. If it was caught within hours of the inital bite then maybe 6 months to a year of Abx.
But if you have been undiagnosed for months or years. It will take alot longer to get well.
I do believe you can get better on low doses if you have had LD undiagnosed for years. If you just get it, you can actually tolerate higher doses. (Just my opinion)
I certainly do not want me or my kids to be on abx for years but I have no choice. I actually feel very gratefull that I have an EXCELLENT LLMD who is willing to treat me for four years or longer, cause Lord knows I could Not get that kind of care in my own state.
Be gratefull you know what you have and you can get the treatment you need to get better. Some doctors are trying to stop that very thing.
Lisi
Posts: 986 | From Michigan | Registered: Dec 2004
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Posts: 17 | From Bend, Oregon, USA | Registered: Jul 2005
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liz28
Unregistered
posted
I had hopeless, disabling Lyme for four years, then found out I also had babesia and bartonella. I've been on my current Lyme abx protocol for four months, and my babesia treatment for nine months. It's all mega-dose, so this isn't a recommendation or suggestion you should follow, it's just a list.
What I've found is that this protocol immediately reduced my symptoms of bart and babs. They still flare, but they are no longer disabling.
Unfortunately, the Lyme is not gone, but it did change. I started exercising about two months ago, and have been having many Lyme relapses. The relapses only come up, however, when I do a lot of stretching. It looks like Lyme has a successful ability to hide, and the stretching flushes them out.
Luckily, the abx I'm on right now are so strong, they knock out every relapse in 4-5 days. It feels like forever, but at least I can still get to work.
Liver support is absolutely, unequivocally required with this protocol. I take a supplement called Dr. Zhang's hepa formula 2, N-acetyl choline, and alpha lipoic acid.
Lyme: ketek 400mg/2x day omnicef 300mg/2x day
You'll also want to add flagyl or tinidazole at some point, but they are too strong to take with this combination.
Bartonella: rifampin 150mg/2x day
Babesia: mepron 10ml/2x day artemisinin 300mg/day ketek
Yeast: nystatin coptis extract probiotics
Systemic inflammation: Celebrex 200mg/2x day theanine
Omnicef takes about a month to kick in at first, so if you try it, don't get too frustrated.
And I don't think megadosing is the key, so much as appropriate drug combination, and using the strongest versions or generations of each drug. Like ketek is the latest generation of zith, artemisinin is much stronger than malarone, both rocephin and omnicef are stronger than ceftin, and minocycline is stronger than doxycycline.
Whatever you decide--there's lots more choices out there--the jury is in that if you have babesia, you cannot recover from Lyme.
[This message has been edited by liz28 (edited 20 July 2005).]
posted
Ha, BorreliaBrain, I like that. Sure described me for a long time. I had Lyme almost 17 years undiagnosed, along with erlichiosis and bartonella. Were not a pretty sight. Life pretty well shot, and so was I.
Finally found a good LLMD, with help of folks on this board. I thought it'd be a few weeks on IV, too. Dr said better results with fewer complications on combo of orals. Ok, I'd rather drop pills than IV anyway, and I didn't have the money. Though I'd do it if it were the only option (and for some people it is).
I was so sick that we eased into abx slowly so I wouldn't herx too badly. Gradually worked up to the full combo. Also took a several Chinese herbs, which helped immensely with managing symptoms and herxes.
First round was 16 months. Took time for infection to do its damage and weasel into the recesses of my body; took time for abx to do their job too. Off ten months, then had a relapse, aggravated by stess (bought house), not as bad as before, but enough to know I needed to go back on abx. Ten more months, and I was doing so much better I couldn't beleive the difference. I am probably more active than most people my age.
Dr said that it is possible I could relapse again, but that each time I am treated, the time will be shorter, my immune system gets stronger and my functional level gets higher.
It worked: some things improved rapidly, some have taken longer. Abx gave my body chance to begin to heal on its own. I am doing professional level work again (I am a field scientist). I can hike mountain trails for miles and still cook a meal and tend to the house and animals when I get home. I not only read novels and technical articles, I write and it actually makes sense. I go out with friends. I go to conferences and the occasional concert.
I still have some things I have to deal with: hyperacusis is still an issue, but it is nowhere as bad as it was, and is still improving. Klonopin and earplugs helps with what is left.
Denial can keep you sick. When I was finally diagnosed, I determined I'd do whatever it took to get well. Can't say I'm cured, but I do consider myself "well". It was worth the effort, every pill, every herx, physical therapy to regain strength and function.
Got a great photo of me standing at the top of a mountain in hiking boots and a hard hat. Never thought that would happen again. Next is the kayak...
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
I think I am a success story. No, I am not cured. But my Lyme is under control. I have been on and off of meds for over 5 years.
I am able to live my life pain free. What more could I ask? I have a good Dr & I have family and friends who care.
Yes. I still take medicine, but I dont mind. I thank G-d for every pill I put into my mouth. There are people who would literally give everything they own to have the medicine that I am so fortunate to be able to consume.
It can be frustrating at time, but part of it is having realistic expectations.
I think for me as a former burn patient, really I am just grateful to be alive and pain free. All the rest is icing.
[This message has been edited by Kara Tyson (edited 21 July 2005).]
posted
I'm at work and can't write long, but want to run this by people. It may not be one we have an answer to.
I've been on the right abx for four months. My bartonella and babesia symptoms, while still around, are very mild and almost gone.
My Lyme was minor until three weeks ago, when I reached a point in jogging where you begin to experience something called the "training effect." It's the point where your body starts conditioning: your muscles build up, you aerobic capacity is increased.
Until this point, I was working seven days a week, and exercising, and was able to handle it. Suddenly, I've gone into a horrendous relapse of Lyme only. Even stranger, the abx are still working. They consistently kill every new generation of Lyme in four days. But suddenly, I'm getting hit with wave after wave of Lyme, and each new generation is not a little one, but as big as I had after the initial tick bite five years ago. I'm exhausted and feverish all the time, and am getting to work later and later because I can barely move.
So if these relapses are not related to stress (I was able to exercise and work), and oxygen is supposed to kill them, not make them stronger, and I'm almost rid of the co-infections, and I'm clearly on abx that work, what's going on?
posted
Thanks for everyone's replies. I am still in a totaly fury about this. I just DO NOT want to take abx for years on end. NO NO NO NO. I've spent years trying to get my gut stable and fighting what I thought was "yeast" (before I knew I had Lyme).
What about taking Dr. Schardt's Diflucan cure? That's only 60 days or so. What about herbal stuff, like Cat's Claw... surely someone got better doing that stuff?
Grrrrr.
As for my own story - well, I don't know how long I've had Lyme, but scarily enough, we had a summer house on Long Island. When I was in 8th grade my knees used to swell up. The docs said I had "water on the knee" and gave me a brace to wear. I also had permanent sinusitis from that point on. I think that is ominous....
But I really got "sick" during a stressful time in college and haven't been well since. Mostly, insomnia, myoclonus, depression. So we're talking years and years (I'm in my late-30's now).
So that would mean, from what I am reading, with such a disseminated infection, that I would require years and years of abx to "knock it out" wouldn't I? At that point, maybe its just better not to treat at all and try and live with this?
I am freakin' out.
But thanks for your replies... I'm sorry to hear that some are relapsing even after long stints on abx. Something is wrong here. We need more research.
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