posted
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?
Posts: 995 | From somewhere out there | Registered: Oct 2010
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Camp Other
Unregistered
posted
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).
IP: Logged |
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
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?
Posts: 3996 | From Ohio | Registered: Oct 2000
| IP: Logged |
posted
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.
-------------------- NWOODS WI/ bit May08 diagnosed Jul08 Lyme March 09 symptoms return Ehrlichiosis pos.no Lyme? Feb 11 CD57=26 Mycoplasma 343 Babesia 55.2 HHV6 5.8 WB CDC POSITIVE 31++ 39+ 41++ 58++ 66+ 83+ WB IGG POSITIVE 31++ 34 IND 39 IND 41++ 58++ Posts: 55 | From the Lyme Mine | Registered: Dec 2010
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
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
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
posted
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.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
| IP: Logged |
posted
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.
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
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
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
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.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic