posted
I've seen so many posters here saying so many different things that I'm terribly confused.
Some say they've been symptom-free for 5 years- does that mean they're cured and it won't come back?
I've seen others say they've been fighting it for years and years and are still struggling with it.
I read an essay by Amy Tan in her autobiographical book "The Opposite of Fate" where she says that any time she goes off antibiotics her symptoms coome right back.
And then I've read that it can be cured with the antibiotics. To be honest, I've seen my LLMD three times so far (in two months) and I haven't asked him because I was afraid of the answer. I wanted to just assume that his plan of giving me several months of oral antibiotics followed by at least 2 months of IV antibiotics would just knock it out entirely.
Does the prognosis depend at all on how long the person went having the disease without being treated? I remember exactly when I had the EM rash (I had no clue what it was at the time) and it was in the year 2000. Hallucinations, memory problems, light and sound sensitivity, and extreme anxiety and emotional lability started about 6 months later. It progressively got worse over the years.
I was finally diagnosed in February and started antibiotics and a zillion supplements.
So having had it that long, can I be cured? DO people get cured, or is it always there with the possibility of becoming active again?
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
Lyme disease can be cured. The bacteria cannot be completely eradicated from your body, but it can be put under control enough that you won't have to think about Lyme disease ever again should you choose not to.
I'm sorry that you've been sick so long, and your treatment and recovery will most likely take a long time, years probably. However, most people (95% say many docs) are able to return to their pre-Lyme state after proper treatment.
Also, there is a recent quote from Dr. Burrascano who says that if you don't relapse after three years of ending treatment, you will not relapse ever.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lyme in Putnam
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posted
I'm stuck on the remission side. Just from my experience. God bless those who are symptom free and stay that way.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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map1131
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posted
I'm not giving up that the cure is found for all someday. I believe some are very blessed people and had the right treatment at the right time and it goes away.
But remission is attainable for good percentage of those ill with lyme & co. I believe that there are some great minds working together to make this more probable.
I don't believe the 95% number. Does that number include early dx with an obvisious bulls eye mark? Does that # include the acute and chronic ill with lyme & co?
Is that someone that has lyme only? As long as there's a 95% cured number out there, why do we need change in awareness, education, treatment funding?
If that's true, then heck we just need to get over it. Take a anti-depressant and more on.
Jennifer, patience is a virtue and one must learn that virtue during this illness.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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desertwind
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posted
IME it is hard to say whether one is in long term remission or "cured".
The possiblity of re-exposure/infection needs to be kept in mind when one is well for months or years and then gets sick again - especially in epidemic areas.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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map1131
Frequent Contributor (5K+ posts)
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posted
My problem is I'm a tick magnet. I've lost count since '05 how many times I've pulled a tick usually nymphs off me.
Really hard to narrow down which enemy you are fighting.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Well hopefully I'll never get bitten again. I'll be extra careful when out in wilderness areas. I live in the desert, so I doubt there's much if any danger here.
In fact, it's rather surprising that I got bit at all. I know mosquitoes and ticks are different but they both suck blood and mosquitoes hate my blood. I've maybe had one or two bites my whole life and I used to live in an area full of them.
My brothers and dad used to be full of bites while they avoided me and my mom. Our blood apparently isn't very tasty.
Too bad the tick liked it. Or maybe that's the reason I never saw the little bugger- he took one taste and was so disgusted that he quickly detached and went in search of another meal. Maybe he made sure to leave the Lyme as revenge because he was a dissatisfied customer.
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
There is some evidence that those who have chronic lyme are not able to get better. This is more true for those with co-infections such as XMRV. Unfortunately, the medical community has responded only slightly to this problem.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Especially since I was treated my first time in 1999-2001 and great until 2009..
I've been back in treatment after all those years of being good.
I believe we can put it in remission.. but never cured. Believing that someday we will have a 'cure' for it.. but for now, I know I have this babs/fry bug, whatever you want to call it... in my redblood cells...
I feel its the co infections that we all deal with that we need to put into remission. Maybe lyme spirochete is gone, but those other little buggers seem to be the ones that are harder to control.
Just my take on it from all these years listening to others and what my body is going through.
-------------------- 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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I think it really depends on how you define remission and cure. I am either cured from Lyme Disease or I am in remission from chicken pox .... because if I am in remission from Lyme, why would the terminology for chicken pox be any different.
I was in remission for 12 years from Lyme until I got bitten again about 8 years ago. That remission was different than this time around. Then, I had to do things to stay in remission, like get enough sleep, avoid stress, etc.
I do eat healthy and exercise, but I'm 48, that's a good idea for general health. I also detoxify, but so does my husband who has never been sick from Lyme. But, if I fall off the wagon, I don't get symptoms like I did when I was in remission.
IMO, I am just as likely to break out in shingles as have the Lyme come out. Possible? Sure it is. I think it's more possible that I would get sick from another bite, which is why I avoid places where I might be bitten.
Remission and cure are just terminology. You can get better and not think about Lyme anymore. That's what's important.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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BackinStOlaf
Frequent Contributor (1K+ posts)
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posted
Asked my LLMD this yesterday. He also used the chicken pox analogy.
-------------------- 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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tickled1
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posted
Six,
What do you think made the difference this time around?
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
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posted
Six,
What do you think made the difference this time around?
Posts: 2541 | From Northeast | Registered: Jan 2008
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lululymemom
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posted
quote:Originally posted by thehause: There is some evidence that those who have chronic lyme are not able to get better. This is more true for those with co-infections such as XMRV. Unfortunately, the medical community has responded only slightly to this problem.
I believe this to be true, and even Dr. B. states that the prognosis he delivers is that many will have to have ongoing maintenance therapy.
What do you think made the difference this time around?
Diagnosis and treatment. I knew there was a problem last time around, but never got diagnosed. I had known tick bites and all the symptoms of Lyme. I had been disabled months at a time by the fatigue and fibromyalgia, but I learned that various supps, diet, exercise, and sleep would keep me functional.
this time, I treated with abx for 20 months, then 9 months with the Bionic 880, various herbs for detox and parasites, and other natural treatments.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
Frequent Contributor (1K+ posts)
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posted
Six,
Did you do the entire 9 mos. of Bionic in Germany or did you finish up here somehow. Is it available in the states?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Cured? Hmmm. I am feeling pretty good right now. No major Lyme symptoms for well over a month. I have had periods of up to 9mo without symptoms. I'd like to think this time I am cured...
My thought though is what about the damage done by the *cure*? Due to the damage done to my gut from abx, I still deal with nausea/vomitting, poor digestion/leaky gut...The 'lyme arthritis' damage is still there, didn't go away because the bacteria did...
I am sure we can somehow, someway erradicate the bacteria...my concern them becomes how do we deal with what's left...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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Did you do the entire 9 mos. of Bionic in Germany or did you finish up here somehow. Is it available in the states?
I finished it here. The Bionic 880 is not commercially available in the US, you have to buy your own in Germany or use someone else's. Some use the PE1 instead because it's available in the US.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Raw vegan, you are right, it takes a long time to deal with the damage left behind. It took a VERY long time to heal my gut. Almost two years.
I still have some damage in my left shoulder. It had been locked up and I thought it was permanent damage, but it finally is getting some more mobility. The damage is hardly noticeable, but I feel it and have slightly less mobility than my other shoulder.
It takes time. A friend with cancer said they are told that it takes the length of time of treatment to get back to normal. So if treatment was 6 months, then it takes 6 months to recover from treatment. I think we deal with a bit of the same problem.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
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posted
IMO we can always speculate why there are lingering symptoms after treatment. They can be attributed to damage done by treatment or they can be bacteria that still has not completely resolved. I think there is no sure fire way of knowing for certain. There is no test that tells you "okay now you are cured."
I think the danger comes in when people are encouraged to stay on antibiotics until they are symptom free for 2 months. That could literally take forever and, again, in my opinion really bad and dangerous advice. There are very few that are completely symptom free. As it has been discussed here, many still have some "symptoms" or "damage" even after remission is achieved.
In my heart I feel that people are being misled that total and complete symptom free remission is likely from chronic lyme disease.
posted
lulu, I TOTALLY agree with you. If I had stayed on abx until I was *symptom free* I would still be on them, feeling awful, toxic and doing even MORE damage to my gut. Now, at least I can assess what it what, and try to deal with the damage done vs. symptoms that may be lingering, that may/may not be from *active* Lyme.
Many of us have Lyme/Co's AND other issues, which makes it hard to truly know what's what. I think that is the biggest challenge we face in all this is being able to figure out what is Lyme, and what is say...thyroid, or yeast or insert-malady-here.
Right now, I believe I am in some sort of remission. Mostly, bc the brain-numbing fatigue is gone. I can run 5-6m a day, recover fine and function like a reasonably normal person. BUT, I still have hedaches, temperature regulating issues, pain in some joints, gut issues, random nausea/vomitting...is that Lyme? Or, is it just what's left after Lyme...no way of truly knowing.
So, I treat this on a symptom basis rather than a disease basis and hope for the best. I feel much better OFF the abx than I did on, and simply have to accept that there is still some stuff needing to be dealt with.
Chronic Lyme Disease is exactly that- chronic. I don't know that those of us who have had this disease 10, 20+ years will ever be *symptom free* though I do believe we can be better, even well...if that makes sense. We will always have some sort of *souvenier* though, I fear...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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lululymemom
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posted
Absolutely, for long term chronics like us, treating on a symptom basis seems to work best. It does for me anyway. I still use natural abx to keep the bacteria under control and to keep other things at bay.
I was pleasantly surprised to see (in lymetwisters previous post) that the trend is turning towards alternatives rather than abx for long term.
posted
Can you be in remission but still suffer from nuero issues such as obsessions / compulsions / being 'fogged out'?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
thehause, I can only speak for myself but I feel like I am in a remission right now, and I still have headaches/mood *issues*/confusion and memory crap that was/is part of my Lyme. I have to think that damage was done from both the Lyme and the treatment that has left me with lingering issues. I am hoping to clear them up...
Here is the part that gets tricky, imo...
I was totally against antidepressants and pain meds the last 5 years during my active treatment. Reason being, until I had a Dr. who believed me, I did not want my symptoms to be blamed on *depression* etc. Now, that I know where I am at, and have a good Dr. I would be willing to consider other meds if needed, because I can sort the symptoms out...if that makes sense.
So, my point is, if you believe you are in remission and still have those symptoms, I would consider treating those symptoms as a separate issue(even though it is from the Lyme)Perhaps there is an herbal combo that would help, or even a low dose of some med that would aleviate some of these lingering issues.
Does this make sense? I am dealing with a sinus infection right now and my brain is full of snot... Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Six...GAH! I have been treated on and off for 5 YEARS! I hope it doesn't take that long! But, I suppose if I look at it in a more positive light...if you are consistantly getting better through that *recovery period* I guess that is a good thing Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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nefferdun
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Member # 20157
posted
My analogy is your lawn covered in weeds. You spray out the mature plants but you will never get rid of all the seeds - which can be in the millions. You have to keep the lawn healthy so the weed seeds do not have a chance to germinate.
If you do go into remission but don't take care of yourself, you are much more likely to get sick again. So there is no return to "our old selves" in the sense that we can throw caution to the wind and eat whatever we want, not get proper rest or exercise.
I hope I will eventually get off the abx and use herbs to control things. I know now that I can't slip up. I have to eat healthy which means no sugar, no red meat, no processed refined foods and very few high glycemic foods.
But on the pessimistic side, I have read that dogs with Ehrlichia that was not treated in the early stages, often require antibiotics for the rest of their lives. That is main stream. What about people? Probably the same. And I have ehrlichia which I have discovered is a primary problem.
-------------------- 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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posted
Yes, raw vegan, it seems like a long time, but it does allow you to be more patient with the aftermath.
I had Lyme for over 30 years and am symptom-free. And now, my gut functions well, too .... GI issues had been ongoing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh, believe me I don't go in tick known areas. We sold our lake home which is where I was infected in the first place.
Everyone thought I was just the unlucky one, besides a beautiful family dog Rusty of my sister and her family, also had lake home close to ours. Summer '99 Rusty and I went down.
Rusty had a bulls eye on his belly. The vet said Rusty had cancer. When we realized what a bulls eye was, my sister put Rusty on abx and steroids.
Vet said Rusty would die within 3 mths from this "cancer". Rusty went up and down for 2+ years and eventually the lyme killed him.
'03 & 04 my husband got lyme and co sick. 2 mths abx took care of him. So he thinks?
'05 I pulled 2 ticks out of me and another out of hubby. I hated the lake house. I saw ticks, not good times.
My husband got tired of working his butt off 6 weeks and some weekends at the lake. He wanted to sell. I jumped for joy, I thought I was leaving tick world behind.
I can't go to my sister's house in the suburbs(same sister)surrounded by woods and 3 dogs and 1 cat without being bite by something. Mites and fleas come running at me.
I refused to go into their theatre room again until it was professionally defumed. Seriously, that's how scared I was after a very bad attack by mites on me.
This sister has another dog that has been ill and going down hill since they built this house 3 yrs ago. I get so angry seeing this suffering dog. This dog is up and down and has arthritis. Sure?
I live in patio home community, mostly blacktop. Suburbs too. A group of deer walk our community down the blacktop street and eat grass and plants at night.
My husband plays golf. Three times in the last few years I've found an embedded deer tick on me after his golf outings. They must think he tastes bad and get off as soon as I get in the bed and are happy happy happy. There's my favorite meal.
He says he doesn't go deep in the woods for his ball. He only walks the edge of rough areas. Sure?
I've tried to live in a world where I should be safe. I think all ticks are looking for me. I see ticks coming after me. They are running as fast as their little legs will carry them.
I'm not crazy. This is the my reality.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
sixgoofykids - You have been relieved of any neuro-issues? Are you 'normal' in your head?
I feel like I'm at a crux - I need a day of feeling better - a day of being "myself" or i need relief some other way.
I am in a lot of neuropathic pain and stress. I don't think "well". I can still perform on certain intelligence tests but my mind is just not up to performing deeper functions. This can't be permanent... I won't make it.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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I won't make it either...I am at a really dark place right now...8 weeks of IV doxy really plummetted my brain into the depths of BAD!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I'm about ready to take the easy way out... sad.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You need to take herbs that support the neuro issues.. They can make a difference. Magnesium and CoQ10 are necessities.. For my brain I take RNA (ribonucleic acid) and sublinqual Vit. B12.. There are many things that can treat mood disorders.. Please look into them. Pharmaceuticals are not always the answer.
posted
i take the same B12 and fish oil and vitamin c and alpha GPC and ALA and glisodin and Cysteine and vinopectine and aspirin and fish oil and piracetam and brocco max and folate and Trimethylglycine...
when do you raise the white flag?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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lululymemom
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posted
Fish oil does suppress inflammation but in the long run, inflammation is a way of your body fighting infection. I personally would not want to suppress it.
posted
i could care less about bodily inflammation - i'm used to it.
i'm more talking about the inflammation and perfusion issues resulting from the 'thickened' blood and nerve tissue in my brain. those which you've maybe just tangentially referred to as "mood" related. I see it the other way. I am not having mood issues. I am having neuro issues which scare and frustrate me to the point of wanting to "QUIT". They are a byproduct of a situation not a real issue themselves.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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quote:Originally posted by thehause: sixgoofykids - You have been relieved of any neuro-issues? Are you 'normal' in your head?
Yes. I no longer have any symptoms. I was severely cognitively impaired when I was sick and am fine now. I don't have the mood swings or rage any longer either. My memory is now normal. Etc.
If you haven't treated bartonella and/or parasites, if you're having those kinds of symptoms without relief, you might look into both, treating those two things helped me most with those symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by thehause: i could care less about bodily inflammation - i'm used to it.
i'm more talking about the inflammation and perfusion issues resulting from the 'thickened' blood and nerve tissue in my brain. those which you've maybe just tangentially referred to as "mood" related. I see it the other way. I am not having mood issues. I am having neuro issues which scare and frustrate me to the point of wanting to "QUIT". They are a byproduct of a situation not a real issue themselves.
I actually addressed the mood disorder to those who are suffering from it. I have dealt with this illness a very long time, and neuro issues have always played a part in my symptoms. It comes with the Bartonella infection. I will stick to what helps me. Seems it doesn't work for everyone.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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t9im
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Member # 25489
posted
Hi Jenn and everyone:
I believe it can be cured, it is my daughter who has Lyme and hopefully is almost over Babesia.
As most of you know the Lyme spirochete is the super bug main stream MD's worry about but our LLMD's know is here.
It does take a course of long term drug treatment. Minimun of two drugs including a cyst buster.
Of course we are not helped by main stream research as they've abandoned us so our LLMD's have to go by trail and error. Everyone is different.
Good luck and don't lose hope.
The conflicting data of course is confusing.
A spirochete report indicating the bacteria doesn't leave the tick gut until almost done feeding conflicts with the mice being infected in 15 minutes.
The mice study on persistent infection even with mice cured of symptoms. Of course this was with mono drugs and not going after the cysts.
I wonder if there are other ways to go about it besides the heavy drugs (worry about this all the time due to side effects) but have not really bought into some of the alternative treatments.
I naively thought our daugher would be cured by now (11 months in) but realize we still have quite a ways to go. You all know this. It takes longer, requires more time and resources but you can be cured.
Best,
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Lulu - sorry if that came across harshly. I'm frustrated and about at my limit. Maybe the mood issues exist?
I really need to get some resolution / improvement... This can't be how you have to live for the time you've got.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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