posted
this is a question (well, many questions) not just for people who are "recovered" but for everyone...
first can someone with Chronic Lyme Disease ever say they are "fully recovered"?
Ok..so...there's no CURE for LD...so when is someone put in the category of having "HAD lyme disease"??
is there a medical "official" line drawn where if you pass it, you no longer HAVE chronic lyme but you HAD lyme?? is it at the discretion of your doctor to decide when you're "better" (as in "all better")??
Or is it purely subjective? based on how you feel? when could you say to family or friends..."i don't have lyme disease anymore."
If you go off abx, and after a certain amount of time (weeks? months? years?) you haven't felt sick again or had a relapse...only THEN are you considered someone who once had lyme disease?
testing doesn't seem like it would determine "has" vs "had"....as we know..they aren't 100% accurate. especially for people (like me) who are seronegative.
I don't know how many "all better" people there are out there in lymenet world...but i'd love to hear when you felt you could put lyme disease in the past.
is there any known data on how many people with chronic lyme disease relapse after...say...1 year after treatment ends? when you have chronic lyme, does it just go into remission or can someone say they have recovered fully and no longer have lyme.
and i'd also like to know what, if any, permanent damage from lyme disease there was. how long did it, for example, take the arthritis to fully go away or have congitive function return? when do you determine that something like arthritis or cognitive problems are permanent as opposed to things that will just take a long time to clear up?
Did anyone do cognitive therapy? or vision therapy (ie, if you got dyslexia or convergence insuffiency from having lyme)? or physical therapy? as part of the post-treatment recovery process? how long did you do it?
i know...lots of questions!
my lyme doc took me off abx, Plaq etc. He said there is nothing more to be done with those..at that point where that stuff won't benefit me he says... and i guess from here on out, see how my body handles it and do more complementary treatments for things like heavy metal toxicity..
but i still FEEL sick...joint pain, muscle pain, cognitive problems, vision problems, headaches, other aches etc. etc.
I"ve had lyme for 8 years...and been dx and treated for 19 mos. including 2 mos of IV Rocephin. of course i am hopeful that i will continue to make improvements off "lyme meds"...but also fear a relapse..either soon...or later on down the road...and I don't want to be TOO hopeful...
so i want to know when i can say "once upon a time..i HAD chronic lyme disease"...or can i ever say that?
i know i'm asking alot but I hope there are many of you out there who can/want to share what they know or have experienced with recovery from chronic lyme disease...
and i think it would be inspiring to hear some stories from people and of people who "once had lyme disease"....
Thank you! Thank you!
[ 07-19-2009, 03:30 PM: Message edited by: stjohn ]
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've been sick for decades and still treating after 3+ years of abx and still making improvements in my health. Some of the major improvements have happened long after 19 months of treatment.
Bottom line for me, I'll be in treatment for as long as I have symptoms. Waiting for symptoms to clear *after* treatment is completed is not recommended by ILADS from what I've read.
Have you had treatment for babesia, bartonella and other possible co-infections? How about parasites? Have you considered biotoxin treatment and methylation cycle testing/treatment? What about the newly discussed PKU issues that people are treating? How aggressive is your detox protocol? Are you currently being exposed to mold?
Keep reading lymenet to learn about these issues. Do some searches in the archives for discussions about these issues.
Is your doctor an ILADS member? Whether he is or not, I'd be looking for another doctor.
Keep searching for answers. Don't give up expecting to get well.
There are a lot of different opionions about chronic lyme disease but I personally expect that I will always have to deal with it. I hope to put it into remission someday but I think that I will always have to keep an eye on my immune system in order to keep it at bay.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I think just about every illness out there (Viruses bacteria parasites ect) never really leave the body 100%
It is all in getting the immune system to control it/them.
Posts: 458 | From Miss | Registered: Mar 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hello, neighbor. I had undiagnosed lyme disease for about 10 years. So, if that's what you mean by chronic lyme, I had it.
I treated for 2 years with a local "lyme literate" doc who didn't know enough to cure me--recommended by a lyme support group.
Then, I switched to a local Burrascano doc and I was finished with treatment in 1 year. Had lyme, babesiosis, and bartonella.
I knew I was finished because all my symptoms were gone. Still, the doc made me stay on meds about 5 more months because he won't let anyone stop meds if winter is starting. Says it's a strain on the body. So, I stayed on meds until spring.
Finished my lyme treatment 4 years ago. I am still symptom-free, enjoying my life--the same life I had before lyme disease.
All of my problems went away. So, I would say that I have no permanent damage from lyme. I have a number of friends and acquaintances who had the exact same experience. Good lyme treatment makes all of your symptoms go away in my experience.
If you would like to know the name of my doc to get another opinion about whether or not you truly are finished with lyme and company, send me a private message.
I am concerned because many of your symptoms are typical lyme symptoms. Maybe your doc just felt he could not help you any further? If so, maybe someone with more expertise can.
If you have permanent damage from lyme, it won't ever go away. For example, permanent cognitive problems. But I have known people with lyme for over 20 years undiagnosed, and they don't have permanent cognitive damage. So, I wonder if you still need treated.
One lady asked the lyme doc if her cognitive problems were permanent lyme damage. The doc said that if she still had periods of mental clarity, then she would regain her cognitive function. The last time the patient had had any period of mental clarity was about 3 months prior to starting lyme treatment. Still, she regained all her mental function in the 2 years of lyme treatment.
If your symptoms can be attributed to some other illness, then get treated for that illness. For example, do you have osteoarthritis? If you have joint damage from arthritis, that damage is permanent.
What is the cause of the vision problems? If an eye doctor can't find anything wrong, then I would assume it is still lyme affecting your optic nerve.
You have way too many symptoms. You either have a number of different medical problems (which I consider unlikely), or you still have lyme and coinfections.
It is not unusual to have a doc who can't get rid of all your symptoms. I decided not to quit looking, and I found one who could and did get rid of all of mine and got me to the point where I could stop treating lyme diseae and not relapse.
So, consider that a change in doctors may be in order. I know this is terrible to contemplate, but in my case, it was the best decision I ever made.
To answer your questions, I consider myself cured. I realize that my body may still contain some lyme germs, but that is true of every person who has had chicken pox too. Do you say you are "in remission" for chicken pox? I don't. Even though, you could get shingles from that chicken pox virus some day down the road.
I guess once I was rid of lyme disease about 1-2 years, I started saying I was cured.
All I did was oral antibiotic therapy as per Burrascano (with herbs, supplements, etc.). This included the Burrascano type exercise program. My doc said it was a MUST if I was to ever get rid of lyme disease. Exercise boosts the immune system. I started the exercise program a few months into my treatment with the Burrascano doc.
This was the most difficult thing for me, because my main symptom was extreme muscle weakness (which is neurological in origin). I had to work up to a 1-hour weight-lifting routine. I started with the ability to do about 5 to 10 minutes of light weight lifting. It was pure will power doing this every other day. It took me a long time to work up to the one hour.
I really believe in the Burrascano protocol because that is what got me and all my friends and acquaintances well. If your doc did not closely follow Burrascano, then why not try one who does. We have them in our area.
Read through them and see if your treatment lines up with what Dr. B. recommends.
I thank God every day for the lyme doc who got me well. It is my desire that every lyme sufferer get good lyme treatment and get rid of this disease from hell.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Wow, TF, great post, and glad to read you have been in remission for so long. Congratulations!
stjohn,
Currently there is no cure, as you mentioned. I perceive the situation as reaching remission, like you would with certain viruses that you catch in your life but can never completely get rid of (like Chicken pox, or EBV/Mono). People can have reactivated infections of Mono (EBV) or chicken pox (shingles).
You can beat down the disease to keep it in check, like with Mono, but a stressor, even things like time and normal decline of the immune system with age, can cause it to get a foothold again and begin to cause symptoms (or a disease state), thereby taking you out of remission.
To answer you more succinctly, I view it as a person who has had Lyme Disease will always have it, but they can go into remission, or become aysmptomatic. That does not preclude them from either going into relapse, or even being infected a further time.
posted
TF's post is about the best success story I've read on this board so far! I hope it makes it to the success stories collection. Congrats, TF! YAY!
Posts: 57 | From western Virginia | Registered: Apr 2009
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posted
TF's success is great, isn't it! crossed fingers that will be me someday!
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I ran into this article today, and it is very informative and helpful:
"Why Is Chronic Lyme Borreliosis Chronic?" (link to pdf article)
The article approaches an explanation of Chronic Lyme Disease via a visible manifestation of Lyme, ACA presentation:
..."Chronic Lyme borreliosis (CLB) can present not only in different organs but also in different patterns.
Although many theories exist about the mechanisms leading to CLB, it is known that viable Borrelia burgdorferi can persist for decades and cause late skin manifestations of acrodermatitis chronica atrophicans (ACA).
Thus, the immunopathogenetic findings in ACA can serve as a model for studying the chronic course of Lyme borreliosis."...
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Good news for TF
Thoughtful questions from stjohn.
It is so hard to explain that I am so very sick from Lyme when a lot of other people say things like, "oh, I got bitten by a tick and got a rash. My doctor gave me doxycycline and now I'm over it".
It would be easier to understand if Lyme were "graded" so to speak. Like a rash only could be Lyme, stage 1 whereas a person with horrific, debilitating symptoms would be considered Lyme, stage 10 with stages in between.
Does that make sense? In a perfect world there would only be Lyme, stage 0.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
wow...a great deal of informtion to absorb...hopfully more to come i am a slow reader these days but i'm going to print everyones post out and follow links etc.
alot to think about...thanks!
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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posted
i was reading that a great deal of stress or trauma or crisis in one's life can trigger a relapse. for those who have recovered or relapsed...have you found this to be true?
i used to be one of those overachiever types...i had a 4.0+ GPA in grad school for social work (until i had to drop out..from lyme.. 1 semester short of my degree). I put alot of pressure on myself and had high standards...
I'm wondering if i get better, do i have to be careful of things like that...i hope that overachieving mindset i had has gone away with having lyme... at this point i don't care about OVERachieving at something big...i just care about achieving anything..however small...tying my shoes, putting my pants on without having to sit down to do it, following the plot of an entire movie..
If you used to be Type A, have you gone back to a Type A lifestyle after "recovery", and if so, what happened? or did you choose to avoid a Type A lifestyle (high pressure job, high standards for youself, long hours, perfectionism, having to get all A's in school etc)?
How careful have you been (or plan to) to live healthily for the years following "recovery"? diet, caffeine, alcohol, sleep, exercise, etc.
thanks!
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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