I feel like whenever I just regular non-lyme educated people that I have lyme, they always say to me "oh once you have lyme you will ALWAYS have it, theres no way to get rid of it".
I dont understand why so many people think that. I mean YES i know its hard to eradicate and so on. and I know it takes a while to get better and that there are relapses and such but. it is possible to get rid of. with correct treatment and the correct length of treatment
Is this because of the whole IDSA's "post lyme" crap. because theyve undertreated people for so long and they end up still having symptoms that are just labeled as "post lyme permanent symptoms"?, I think that must be the reason.
anyone else hear this alot from random people?
Posted by canefan17 (Member # 22149) on :
I don't believe anybody with chronic Lyme will ever complete rid themselves of the infection.
I think Lyme drives too deep into the CNS.
Posted by Lymetoo (Member # 743) on :
moving to general support
Posted by Paul Mall (Member # 27581) on :
I never hear that
people I talk to wonder why I have not finished treating it after 6 months
Paul
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Paul Mall: [QB] I never hear that
people I talk to wonder why I have not finished treating it after 6 months
That's the usual response. Or "Oh good, I guess you'll take some antibiotics and be well soon." IF they even know what you're talking about.
Posted by sixgoofykids (Member # 11141) on :
Most of the people here, if they've even ever heard of Lyme, think it's easy to get rid of.
I'm no longer ill.
Posted by Camp Other (Member # 29797) on :
lymegal23,
I don't hear it from a lot of random people, no. I have mostly heard from people that they either know nothing about Lyme Disease or they think they know all they need to know already and it is solved with a few weeks of antibiotics.
sixgoofykids,
Which "here" do you mean when you say most people here? Do you mean on LN or where you live?
My impression on a number of Lyme mailing lists I'm on is that people have been sick a long time and it's taking a long time for them to get better. Even on treatment. Not that people don't, as you have gotten better and others do... just I think a lot of times the lists and support groups might be a bit self-selective: You are more likely to be there because you are still unwell; those who are better are off doing other things.
On the other hand, according to Kathleen Dickson, she thinks Lyme is a permanent brain infection (if you can get through her web site, that's buried in there somewhere).
Posted by MADDOG (Member # 18) on :
Hi, I have had Lyme for 26 years.
It has beat 3 months Iv rocephin.
Years of doxy.
6 months zith.
6 months amox.
9 months cipro..
14 months deep intramuscular benzathine pen b shots.
6 months tetracyclene.
18 months col ag colodial silver.
And months and months of antibiotics i cant even remember the name of anymore.
Rife,vitamin c and salt.
3 weeks suprax.
erithromycin.
8 months biaxin.
Tinidazole for months.
Clorixan for months.
Ledum.
bangshil.
wild Yam.
elderberry extract.
about everything at the health food store that could kill lyme.
Any more Questions?
Posted by Derek B. (Member # 29752) on :
Usually I hear the same blah oh its gone after short antibiotic treatment. I think its a battle and once its in your brain and effects your cns, an even more difficult battle. We must all stay positive and remember we are fighting against a form of biological warfare. Plain and simple. Operation paperclip. Going to a LLMD for first time after 2 half years. Can you get ehrchliosis without lyme? Thurday is the day for me to get answers.
Posted by phyl6648 (Member # 28522) on :
I am new at this but from what I have been told and read..Early stage lyme is curable with treatment. Late stages, no cure but management with treatment.
Since I am in the late stages I think why but my body through all the abx etc. if there is no cure but isn't it the same with mone once positve always.. We have to treat infections, and keep our body in balance and work on a healthy immune system.
Just my 2 cents worth. phyl
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Camp Other: sixgoofykids,
Which "here" do you mean when you say most people here? Do you mean on LN or where you live?
I just read my response and realized it was ambiguous myself. Here where I live.
Posted by TxCoord (Member # 9204) on :
Well said MADDOG. After 84 injections of rocephin, several courses of different abx and even two bottles of mepron, friends, family and church members could not understand why Silverwolf was not "better" if not "cured".
I think some of it has to do with our (generic) medical mentality. Take a pill, get better. Get a shot, get better.
Until a person experiences this illness firsthand they have no frame of reference.
Posted by Blackstone (Member # 9453) on :
This mentality is even spreading amongst some doctors, which is disturbing because there is considerable evidence to the contrary. There are plenty of people, some on this very forum that have Lyme (and documented coinfections) who are treated and recover (meaning in this case, come back to at least 80% of their functionality, do not seem to backslide/degenerate, and don't require active treatment to maintain this state). I state the 80% because there are some symptoms that may remain due to damage but do not indicate infection - like arthritic pain.
The idea that you "Have it forever" is bad science and seems to be predicated on two issues - hopelessness, and profit. Both are of course, detrimental.
While it is understandable that patients (and to some extent practitioners) get discouraged with the difficulty of treatment, it is the duty of physicians and professionals to not "give up". Syphilis, Tuberculosis, Malaria and all sorts of other pathogens were once thought to be incurable but thanks to scientific advances today they are addressed with relative ease. The same will happen for Lyme - we are just behind the curve thanks to all the infighting. Research will provide better diagnostics and treatment as understanding of the disease improves. There are people today who are cured through standard ILADS protocol and this will only become more useful.
The second issue is more insidious and I consider it a ethical issue that afflicts much of the medical community as a whole, including "alternative" therapy. Whenever you relegate a disease as a condition to be managed for the rest of a patient's life, it basically becomes a neverending cash flow. Yes, there are some occurrences where we simply don't know enough at the present time to provide a cure, but in all aspects of medicine it seems that are a percentage of practitioners who don't seem really enthused to look for one as it would put an end to constant treatments.
Patient quality of life absolutely comes first, but it is important to never allow either discouragement or greed to get in the way of resolving any disease permanently. There are already those that are winning the battle against vector-borne illness and living happy lives today.
Posted by phyl6648 (Member # 28522) on :
Maddog, Gee you have had a lot of treatments. Are you saying you are cured? Would love to hear about how sick you were and how you are doing now. If you would like to comment if not I understand.
Tks, Phyl
Posted by Camp Other (Member # 29797) on :
Hear, hear, onbam!
Posted by lymeladyinNY (Member # 10235) on :
I feel it in my guts, my bones, and my heart - for me, this disease is incurable. I've treated hard and heavy for years now, and I've improved a lot - but I've not had one symptom-free day in 8 years.
Posted by randibear (Member # 11290) on :
the llmd i was going to had lyme in his family. i believe his wife had it.
he said there is no cure, just years of treatment and remission.
i believe him. once you have it, you have it fore life.
sad but true...
Posted by lymegal23 (Member # 28573) on :
Im confused what do you mean by you have it for life randi?
I don't understand why all the bacteria cant be killed off
Im a bit confused about all this
Posted by randibear (Member # 11290) on :
meaning that i'm 60 and i'll have it the rest of my life.
he said it's almost totally impossible to ever get completely cured, remission maybe, but it lies dormant and can emerge again and again.
i've been treating since oh about 2006 and have not seen any improvement. i've tried abx, herbs, etc., nothing...
and i can imagine that a doctor's wife would get excellent care. it didn't help her either.
Posted by MADDOG (Member # 18) on :
Hi phyl6648 I was undiagnosed for 6 years,I had multiple problems.(I called it pick a joint disease).
It would pick a shoulder, hip, elbo, or some other joint and hurt it so bad I couldent use it for awhile.
Heart fibs terrible joint damage every joint memory loss damaged optic nerves rages seisures cant sleep other problems I wont mention.
All of these get better with treatment ,then get worse when I stop.
The longer I treat with antibiotics each time the longer the remission.
But it allways comes back in one or more symptoms.
I usually notice rages anger paranoia first,then joint pain,loss of eyesight,my touretts gets real bad.
Then a crash of all energy to the point the touretts stops due to exhaustion.
So I have told my friends to let me know when I start getting angry and paranoid ,to tell me to go back on the antibiotics pronto.