I have read online from various sources that many (~80-90%) of chronic lyme patients are able to fully recover (remission) from using abx treatment for an extended period of time...and that the small percentage of those who are still struggling are those individuals you find on message boars.
I also read posts on here pretty much saying the same thing, "you don't read success stories on here because people that get better have no reason to come back to the forums." That is the most common response I tend to read.
I guess my question is, do you think the success rate is "most" chronic sufferers do recover, and we on these boards are just a small percentage of those still struggling? And how do we know the success rate is indeed that high when people leave and never report how they are doing....?
Thanks!
Posted by Lymetoo (Member # 743) on :
That's hard to say. Many doctors say 90% GET BETTER... so how do you define that? It's all relative.
Many many people recover, but most got well within a few weeks. The rest become more chronic.
"Dr. D: The Interface of Chronic Lyme Disease, CFS and FM – lecture presented to Massachusetts CFIDS/ME & FM Association – “Dr. D emphasized that the most important aspect of treatment is that it must be long-term—12-18 months, sometimes 24-36 months. This length is not unusual in the treatment of infectious diseases i.e. TB. In the first few months of treatment patients can expect an adverse reaction—symptoms will increase and you’ll feel worse. You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working. The earlier in the disease process that you start on treatment, the more successful it is. The more chronic the condition the less successful it is, and you’ll need to treat over a longer period of time. This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease. There are 10-20% who do not respond— generally those with a strongly positive Lyme test.”
That is the stuff I tend to read online....
................................................
Editing out doctor name - Robin
[ 02-21-2014, 09:18 AM: Message edited by: Robin123 ]
Posted by desertwind (Member # 25256) on :
I see cure and remission as two separate things.
Cure is the disease completely gone/eradicated
Remission is the disease is still be present but not active. There are no symptoms and the person is back to premorbid state/functioning.
Think of cancer. What does it mean when the person is in remission?
I am chronic but consider myself in remission - not cured but in remission and back to about 75-100% functioning again. It is something that takes work everyday to maintain and an awareness of what factors can push me over the edge into a flare.
Posted by twinnick (Member # 43163) on :
Again, when I say fully recover...I am saying go into remission which I am defininf as symptom free and free of [TBD] meds.
For me, "cure" isn't part of this discussion as I do not feel one can become cured as there are currently no test to prove one has fully erradicated the body of the bacteria...
Hang with me folks... remission remission remission....80-90%?
:-)
Posted by steve1906 (Member # 16206) on :
I also put this in (Terv's post in medical):
Remission is a term that physicians use to refer to the absence of disease activity within a patient in the setting of a chronic disease or illness.
It implies that there is a potential chance for recurrence (relapse), but doesn't tell anything about the chances of this occurring.
Depending on the disease process, in some cases when the patient has been in "remission" long enough, then you would start to talk about "cure".
Will the symptoms or disease come back, no one knows.
It doesn't mean you still don’t have a disease or illness anymore, it may just mean that it is so little that it can’t be detected, or it is not "active.
If you feel you're in remission it's important to do your best to stay healthy.
You may become sick in the future, especially if your immune system is compromised by stress, infection, death of a loved one, accident, divorce, etc.
Then hiding spirochetes can emerge and start to multiply, causing the familiar panoply of symptoms.
Steve
Posted by twinnick (Member # 43163) on :
Yeah....I think most of us understand what remission is.
My question is; is it true 80-90% of chronic lyme patients are able to go into remission and that we [on this board] are just that 10% still struggling?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by twinnick: So are you saying most chronic sufferers do not fully recover [ie. reach remission]?
- That is also hard to say!! (most?)
I had it for at least 40+ yrs when I was diagnosed. I've been well for 9 years now after 4 years of treatment.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by twinnick:
My question is; is it true 80-90% of chronic lyme patients are able to go into remission and that we [on this board] are just that 10% still struggling?
- Probably.
Posted by steve1906 (Member # 16206) on :
quote:I have read online from various sources that many (~80-90%) of chronic Lyme patients are able to fully recover (remission) from using abx treatment for an extended period of time...and that the small percentage of those who are still struggling are those individuals you find on message boars.
I don’t think anyone really knows that number – it’s a guessing game
quote:I also read posts on here pretty much saying the same thing, "you don't read success stories on here because people that get better have no reason to come back to the forums." That is the most common response I tend to read.
(Some go away and never come back – And some do come back) – (Some never leave and continue to help others with these diseases) – (Many do write success stories)
quote:I guess my question is, do you think the success rate is "most" chronic sufferers do recover, and we on these boards are just a small percentage of those still struggling? And how do we know the success rate is indeed that high when people leave and never report how they are doing....?
I do think most chronic sufferers recover to the point that they can function, and recover totally. Unfortunately there are some that never recover, no one has the true numbers.
Steve
Posted by TF (Member # 14183) on :
Many lyme doctors have kept track of their success record and post it on their website or will tell it to you.
For example, this is what my former lyme doctor (who cured me) says on his site:
" Although I hesitate to use the “cure” word in relation to chronic Lyme, the principles in this book have resulted in a greater than 90% response rate in my patients. At least 60% of my patients achieve long-term improvement that allows them to get off of antibiotics completely."
So, it is not a complete "guessing game." The doctors are collecting their own statistics.
Those patients who cannot get off antibiotics without feeling ill can go on one week of antibiotics per month. This enables them to feel well, eat a normal diet, and have a normal life. So, that isn't so bad.
I have at least one friend who is doing this (had undiagnosed lyme for at least 20 years) and she is very happy with this life. She is back to her old self as I knew her before the brain fog made her totally "stupid," slow, and unable to function. You would not see anything wrong with her if you met and talked with her. She is normal.
So, there is lots of hope with a good doctor.
See this quote from the Burrascano Guidelines:
"Unfortunately, not all patients with chronic Lyme disease will fully recover and treatment may not eradicate the active Borrelia infection. Such individuals may have to be maintained on open-ended, ongoing antibiotic therapy, for they repeatedly relapse after antibiotics are stopped. Maintenance antibiotic therapy in this select group is thus mandatory.
In patients who have chronic Lyme, who do not fully respond to antibiotics, one must search for an explanation.
In many cases, these patients are found to have pituitary insufficiency of varying degrees. The abnormalities may be extremely subtle, and provocative testing must be done for full diagnosis. Persistent fatigue, limited stamina, hypotension, and loss of libido suggest this possibility.
Similarly, a small but significant number of these patients harbor toxic levels of heavy metals. Challenge testing by knowledgeable, experienced clinicians is necessary for evaluation. Treatment must be directed toward correcting the specific abnormalities found, and post-treatment retesting to assess efficacy of treatment and endpoint of therapy should be done. Suspect this when poor immune responsiveness and persistent neuropathic signs and symptoms are present." (pages 20-21)
Posted by twinnick (Member # 43163) on :
Thanks all..these are the responses I was hoping for.
We will get through this!
Posted by twinnick (Member # 43163) on :
Anyone else have positive numbers and think there are more success stories than what we read here? We, the still sick, out number the success stories on this board....so that's a bummer.
Posted by Lymetoo (Member # 743) on :
I think my LLMD says 90% "get better." I'll see if I can find that. I don't know if he has updated stats on that or a more detailed stat.
Posted by seekhelp (Member # 15067) on :
Sorry, I don't believe the 90% number one bit. Just my opinion though.
Posted by twinnick (Member # 43163) on :
Lymetoo,
From your past posts, I believe I see the same LLMD from MO. On my last visit to him i asked him exactly what that number meant. He is a numbers guy.... . And he clarified that 90% of his patients return to "normal", symptom free, and off all meds.
Seekhelp,
Why is that?
Posted by momindeep (Member # 7618) on :
My daughter is well...going from very ill...I mean very ill...to productive, married, enjoying her life...things her father and I seriously questioned would happen for her...BUT she still sees her LLMD every 6 to 8 months to keep a watchful eye on it...she has been better for about four years plus.
We go to her doctors for peace of mind, if a problem surfaces she can address it quickly (not just lyme but total body health). Trying to keep an optimum functioning body to keep her healthy.
Posted by surprise (Member # 34987) on :
'Off all meds' I think very few adults in general are 'off all meds' in this day and age.
If you mean off all antibiotics or Lyme killing herbs, I'd say yes to 90%.
But health supplements (Curcumin, fish oil, vitamins, digestive enzymes, probiotics, etc.)
And medications such as thyroid meds, antidepressants, perhaps a stimulant ADD drug, sleeping pills, heart medication, PPI's, on and on, no, no way 90%.
Maybe it gets to a point where you've treated as long as you can, all out of pocket, of course, and cannot afford it financially, nor emotionally, so people move on to whatever their insurance covers for pharma items to help,
and a $500 monthly health supplement bill.
And they don't come back because it's like post traumatic stress disorder. Or post a success story, because I for one am never really 100% sure it will never resurface, so we tread quietly.
I also think people don't come back because they realize they can't keep thinking about themselves and their health problems all the time, it can spiral into negativity.
Personally, I am slow witted when it comes to my own health, having lived with symptoms for decades I thought were 'normal.' It's been a gradual descent and a enlightening rise back, with a heck of a lot of hard work and self education.
And acceptance.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by surprise:
If you mean off all antibiotics or Lyme killing herbs, I'd say yes to 90%.
- I would say that is what he means.
Posted by kam (Member # 3410) on :
Not able tor ead what others wrote this am.
But, if someon could put a program together for CALDA, I think they are still interested in doing a survey on the opic.
Of course there are so many vairable.
But, it would be nice to know what the stats are on the topic.
Posted by kam (Member # 3410) on :
Ca't recall his name now. But, a well known lym edoc stopped practice in order to get the records from other lyme docs and put togheter a universal plan for treatment.
It seems that was yearas ago.
He wa strying to find out what works for what infections...
In hope of getting insurance companies to help pay for treatment.
Posted by jjourneys (Member # 39813) on :
I have a success story - at least for the time being - scared that problems will surface again, but at this time success.
I've was on high dosage ABX and herbs/supplements from Jan 13 through Dec 13. I have chronic Lyme, misdiagnosed as IBS and Fibromylagia for 40 years.
Took a cruise last Sept, went off ABX for 3 wks to ensure no sun sensitivity issues will cruising. Begged Dr for ABX as soon as I got back, I was worse than ever after the cruise. Back on high dose ABX.
Went on another cruise in Dec, off ABX again, was dreading the return of all symptoms. I have been off ABX since Dec - no issues so far. Feel better than ever. Dr appt after 2 mos coming up next week - only a few small issues, nothing I can't live with at the moment.
I'm on a few supplements, Magnesium, Vitamin C and a Probiotic - that's it.
To Surprise - yes, hubby and I do NOT take meds. I only started ABX when diagnosed with Lyme Disease. We are in our mid-late 50's and neither of us take medicines, other than an occasional Tylenol. There are some of us out here that do not take medicines.
To answer the other question: yes, I've been afraid to post this information for fear that someone here will scream at me and tell me I'm doing it all wrong, that I don't have Lyme, etc. I did not say I'm cured, only saying at this time, that I feel better than ever. I watch for symptoms all the time. Will call LLMD as soon as I need to, but at the moment, all is going good.
Posted by surprise (Member # 34987) on :
jjourneys, that is GREAT to hear :-)
Maybe it was your December cruise ;-) God knows I could use some R & R.
Thank you for posting.
Posted by jjourneys (Member # 39813) on :
Surprise - thank you. It may have just been that Dec cruise! First time we've taken 2 cruises in a year. Needed to get away from all the drama during Christmas - it was great and just what I needed.
Hoping everyone is having the best weekend that they can!
Posted by Lymedin2010 (Member # 34322) on :
Is there any mention as to the average time frame one goes through treatment after being chronically sick? Is it 3 years, 6 years.....???
Posted by faithful777 (Member # 22872) on :
I don't intend to ever stop supplementing. I do take a thyroid medication but outside of abx, not on any other kind of medication.
When I stopped abx in July, I weaned myself off of every medication I was taking. I use my oils for sleep or pain.
If all goes well, I will be off this abx pulse in April.
![[Smile]](smile.gif)
. And he clarified that 90% of his patients return to "normal", symptom free, and off all meds.