Topic: Do most people get better? If better, do you live in fear of relapse?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So...I'm about 1/4 of the way through "Cure Unknown." Overall, I like the book.
I notice how Dr. B says that, for difficult disseminated cases, he has successfully treated up to 80% of the people with chronic, disseminated lyme. But 20% are a challenge, although with more aggressive treatment he has narrowed this a bit more.
My question here is...do most people on lymenet eventually get better assuming they have proper treatment? Are we part of the 80% or the 20%?
I wish there was a way to go back in the achives of Lymenet 5-7 years to see who was posting back then. It seems most posters now are recent, in the last 2-3 years. It is more rare to find longer term folks.
I love / need to hear success stories. They give me hope. I think that most people, when they get well, get on with their lives and move on. I appreciate Wildcondor, TF, Sixgoofykids, and others who have kicked this who still contribute and share their personal stories of success.
One last question for the cured...do you live in fear of having a relapse. Not a reinfection..but a relapse? Do you worry when you have a headache or muscle ache "oh god, it is Lyme again.?
I'm hopeful I will be looking back at this period of my life 5 years from now as a blip.
Thanks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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cactus
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Member # 7347
posted
I'm better! I've been posting here since 2005. So I'm maybe not one of the real old-timers, but still here...
I've been off of all systemic abx for more than a year, and doing well.
I have issues that are a result of long-term, untreated infection - adrenal and thyroid.
And I am struggling with relapsing C Diff - not a good thing, but not Lyme and co's either.
So yes - I think you can get past this part of your life.
In the meantime, take care of your adrenals, your thyroid, and take your S. boulardii everyday!!!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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BackinStOlaf
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Member # 23725
posted
bcb- I always have the same thoughts. I figure the people on here are mostly the ones not getting better. The ones that are better usually are not tied up here posting all the time.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
What are the best ways to take care of my adrenals and thyroid?
Cactus...thanks for helping out!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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quote:Originally posted by bcb1200: Do you worry when you have a headache or muscle ache "oh god, it is Lyme again.?
No. Lyme pain is very different, I haven't had that "lead suit" feeling since the Lyme left.
I have been sick numerous times (six kids, you know!!), but it's been with illnesses that my kids have brought home from school, so I knew I had the same thing they had. At first, I was worried about Lyme coming back after one of those illnesses, but now that I've had so many, I don't worry about it anymore.
That being said, I am working on changing the terrain. I do not have symptoms, but I do work continually on detoxification. My body is not the same body that got sick, and I want to get it even more so. I think everyone who lives in our toxic world needs to work on detox. Again, it's not because of symptoms, it's to improve the terrain.
I have inherited my family's gut issues, so I'm also continually working on my gut. I'm fine as long as I get enough ferments, and I'm reading the Body Ecology Diet to get even more ideas.
I do ask my husband if fatigue is normal in given situations. For example, we took a 25 mile bike ride and afterward I was a bit tired. You would think I would know what type of fatigue is normal and what is not, but I've had Lyme most of my life so I did not. He tells me that's normal, LOL, and he was more tired than I was afterward.
Also, I find that as a pilates instructor, if I don't watch it and I workout as much as I like to, I get fatigued. My adrenals are still healing and this is improving all the time. This is more along the lines of normal fatigue, not Lyme fatigue. If I weren't an instructor, I don't think I'd have this problem at all. It's an over-training type issue, but I'm more prone to it because my adrenals are not back 100% yet. I find I like to workout too much because I'm amazed that I can.
I live more in fear of tick bites than relapse, though I know relapse is possible.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I lived in fear that this was going to happen to me again, and here it is. I lived my life the best I could until it hit again. It's deceiving cause you think its over and then, bam, back with a vengeance. I was symptom free for about a year and a half. good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
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Member # 20157
posted
I have been feeling pretty depressed about this myself. I finally decided it was best to go out from a failed liver than the insanity of lyme disease and bartonella. I try to remain hopeful but I have been treating for two years and this is the quote from Burrascano.
"A patient with uncomplicated Lyme disease who had been sick for less than a year required, on average, four months of oral antibiotics to get well. . .If the case was especially complex, or if the patient had gone undiagnosed and untreated for over a year, longer treatment was required. . . . .Much longer treatment."
"17 percent of these late stage patients got well in the first month and remained so. Another 20 percnet got well in the second month. There would be a plateau between the fourth and sixth month, at which point 67 percent of the patients, in total recovered."
"I a patient remained ill 6 months after commencement of treatment, only intravenous antibiotics would do the trick".
The problem is that even though these patients seemed well after 3-6 weeks of IV treatment, they relapsed after a month. They needed much longer treatment which is expensive.
I guess we are part of the 33 percent that did not get well with 6 months of oral abx and we should probably be on IV.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I started treatment in 2004 and finished in 2007.
Haven't been treated since.
Had Lyme, treated for Babs, Bartonella, have EBV, herpes and Mycoplasma.
Am not back to 100% but am working on damage to pituitary gland which is the cause of my severe fatigue.
Since starting HGH injections am getting better and better.
Started working temp jobs this year after a 10 year gap in jobs.
There is light at the end of the tunnel.
I ended up having to go to my GP and an Endocrinologist to deal with residual problems after my Lyme treatment.
Hang in there, you'll get better, but it takes time.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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posted
I'm sick for the second time now. Although i'm not sure if it was a second bite, or a relapse. I
I can say that when i was well (and i felt 100% for almost a year) i took care of myself but never really thought about lyme disease.
I was so happy to be back to my old self and didn't dwell on it. Even now that it's back .. i'm glad i spend the last year enjoying myself. I hope to be back there soon!
I think the point is to remain educated and take care of yourself, but don't let worry consume you!
Posts: 339 | From Outer Space | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Nefferdun...I"m not sure about that. TF was sick for 10 years and it took her 3 years to get well...1 year with a good doc.
I always try to figure out how to classify myself. I have only been symptomatic for 4-6 months, but I've had it for more than a year. So does that early or late disseminated? It is a bit unclear from Dr. B.
I have a long way to go as I am only on day 15 of treatment. Pulsing flagyl today.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I was first treated in 1999-2001. Two years of all drugs from Dr. B's protocol. I really was pretty normal for 8 years. Last summer relapsed... knew the symptoms and got back into treatment last Aug. I was a member in here by in 1999-2001 but couldn't remember my login so made another one in 2004, and at that time, since I was feeling good... my name came up 'hadlyme' ha! Still having it too!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Once better, if one has gained education enough to get better, I see no need for fear. If symptoms return, one would KNOW what to do - seek proper care ASAP. Most of the problems now come from delay or lack of treatment.
Probably, there would always be mindfulness and strict attention to excellent self-care but everyone should be doing that anyway. If I'm lucky enough to get better, I'll not loose a moment on fear. There's been enough already.
Knowledge can make fear evaporate. Being proactive can leave fear in the dust. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have been in treatment 4 years...still treating. I started treatment within 4 months of becoming symptomatic. My LLmd thought it would be 4 months of treatment since I caught it so quick...I wish.
My son had Ld at age 7 got well and relapsed at age 17...he got well again in 2 years.
Honestly, I have met many people w/Ld and most have been in treatment for years..I am discouraged because no one I know is getting well it seems, even with aggressive treatment. My son is the only one I know. Other's that are well, I "met" them well online.
In my opinion and from what 3 LLMd's have told me...it is a crap shoot, you have to hit the right combo of abx for your strain of LD and kill all co's. I have heard success rate is close to 70% but who knows really.
It is nice that many well people have stayed here, but I don't think we hear of most of the success stories. There are millions sick with LD/co's and most aren't at forums online...I wish too there was a definitive way to know the percentage of people who get well.
You are considered late disseminated within a year. Having had any corticosteroids can make you "late stage" disseminated even quicker. I went from a local Ld infection to late disseminated in 4 days - after having cortisone shots.
RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
A little confused about late disseminated.
My bite was a year ago, but I have been on abx nearly 11 months.
Is my case now considered late disseminated?
My LLMD said my treatment should only take 5 months....here I am 11 months later.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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beths
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Member # 18864
posted
Ok-chin up folks. I "caught" my lyme 3 months after bite. I got really. really sick-couldn't function at all, heart involvement, severe fatigue etc. Basically lived on my couch for 1 year.
Been on abx for 3 years-pulsed this last year... I see my LLMd next month. I am at 95%-I work out 5 days a week. Today I walked in 80 degree heat for an hour. 2 years ago, my POTS was so bad, I could not walk for 5 minutes.
I honestly think I am "done" Am going to talk about going off abx. @ years ago, I couldn't really see the light, and had no desire to live my life the way it was.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
up
Posts: 747 | From Utah | Registered: Apr 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
How depressing - just as this is pulled up Beths is writing messages about her relapsing. Same ole' Lyme stuff. Tough to handle.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I wonder so much about this as well.
I was sick with lyme since childhood, age 43 now, diagnosed almost a year ago. I had 2 months of IV treatment, then a 4 month break of no treatment, then 4 months of oral treatment, and my doc and I are starting to talk about tapering down to eventually get off the antibiotics. So, I am not done, but getting close.
That quote above that nefferdun posted makes it seem like "normal" is more like a year or two. Anyone know what "average" time is?
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
For the record .. I do not live in fear of Lyme returning. I used to. But after so many years have gone by I feel "safer".. but then again.. maybe it should make me more worried!!
I have a rife machine .. so that is my go-to treatment if I were to go downhill. I admit I do not use it as often as I should, but at least it's there and if I start feeling bad, I'll "get after it."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
unsure... have you tried artemisinin and zith?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Camp Other
Unregistered
posted
lyme in putnam,
Your story sounds similar to mine. I was nearly back to a normal level of functioning and went back to work full time - only to get ill at work and have to leave my job. I tried to find a part time less demanding job but failed, and also found myself getting much sicker and less able to keep up with all my daily tasks.
I've improved after treatment of Babesia but I'm not completely well yet - or back to where I was before the last crash.
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chiquita incognita
Unregistered
posted
I think caring for the immune system and the endocrine balance is key to recovering, and to staying well.
This might behoove us as an ongoing discussion topic.
An excellent book:
Boosting Immunity edited by Len Saputo, MD
Balancing adrenal and thyroid hormones were part of the get-well and stay-well strategy of the late John Finnegan, med school graduate and nutritionist/herbalist specializing in environmental illness and who was enormously successful in healing people. Dr Richard Shames writes about it in his book Thyroid Power too, that thyroid health is key to immune strenghtening.
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posted
Trying to be positive, but maybe we should expect some form of relapse. IF and when it happens treat it again...almost like cycle therapy Dr B talked about. Hit it hard when you relapse then get back into remission. Repeat as necessary. More layers of the onion are peeled and then hopefully one day no more layers. Some folks will be lucky enough to not have to retreat while others will need to.
I can not speak from personal experience as I am not in remission yet, but that is how I would like to handle it atleast when I get there. Posts: 747 | From Utah | Registered: Apr 2010
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posted
Slightly sick for 2 years, VERY sick for 2 years (4 years total prior to dx/infection) over 2 1/2 years treating on multiple orals, including babesia and bart treatment, supps, some detox etc. Now 4 months into IV Rocephin.
So 3 years since dx and tx began, still very sick, all neuro symptoms.
Needless to say, I'm discouraged. Looks like I'm likely an "antibiotic failure." Now...what to do next. I'll continue IV (probably with a different abx) for awhile longer...but, hard to be hopeful. Don't mean to be pessimistic, just realistic - this is my current situation. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
It's been about nine months since I wrote my original response to this thread. I've come a long way since then in not only being rid of infection as I was then, but also in healing my damaged body.
I can now eat normally. I can eat anything again. I am not reliant on ferments to pull me through though I still take Bio-Gest when I eat to help digestion.
I feel great. I no longer get tired if I work out more than four times per week. I'll get a little tired on days I teach for several hours, but so does my 22 year old non-Lymie daughter, so that's in the realm of "normal."
I do not fear relapse at this point. I am fearful of ticks, however. I KNOW what a tick bite can do to me. I do not go anywhere where I might get bitten. It's not worth it to me. I've always been a "city girl' anyway, so this is not a big sacrifice for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Yes, it does stink with a relapse..however, maybe I wasn't done with treatment. I also felt symptoms creeping back, but was in denial. Perhaps I should have gone on abx sooner, when I first started relapsing.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Let me just start by saying that yes people do beat this horrible disease. Every case is different and as hard as it is nobody can give you a timeline for how long it will take to get better. I first got infected in 1993 but did not start treatment until 2007. I always believed that I would get better and I can tell you first hand that you need hope. I have been told by some great llmd's that I am the worst of the bunch and I remain positive.
I am not cured yet, but I am 70% better than where I began. Make sure to be happy if you improve at all and don't get down if you have a bad month, its unfortunately the nature of this disease and altough it may be tough hope gets you through a lot.
I was diagnosed around the time as 4 other people that were in bad shape. they have all been able to go back to work and school and led normal lifes. My brother is currently symptom free after a year of treatment for neurological lyme.
Stay positive, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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bcb1200
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Member # 25745
posted
Wow, someone resurrected an oldie but a goodie. I was the original poster and this was about 3 weeks post diagnosis, but about 6 months after I first started to feel unwell.
Fast forward to today. I am SO MUCH BETTER! Brain MRI..normal!! Energy, returned. Etc etc. I'm 95% most days. I'm still treating as I have some mild sx. We suspect Bart and maybe Babs. But I have confidence and evidence that treatment is working.
I will probably worry about relapse for a bit after I'm done. But I'll know what to do should I relapse. I'm educated now. I am a bit fearful of new bites, but we are treating out yard / woods, adding a 3' mulch border, and will use skin so soft.
I will win!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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quote:Originally posted by unsure445: Lymetoo, I was on Malarone for about a year, was feeling good and switched to artemesia and biaxin but quickly relapsed.
- Why not try again with artemisinin and zith?? Worth a try... maybe you didn't take high enough dosages.
As for what Six said... I agree. I fear TICKS because I know what they can do. I basically do not walk on grass unless forced to. Seriously.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The mind is a powerful thing and for me I've worried from the day I stopped ABX back in January. I've got a sinus thing going on but my anxiety has returned which for me is a tell tale sign something isn't right. Never had that before and was my biggest symptom. Have a call into my LLMD. I know how good I can feel and am confident I will get there again but I will stay on ABX longer than the first time.
Posts: 239 | From NC | Registered: Aug 2010
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