posted
My LLMD and a few others have said that there is No such thing as Cyst Busters ???
Is this so ???
???
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It probably varies by LLMD. My former LLMD didn't treat with nor mention drugs like Flagyl. He did recommend Plaquenil though once.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Went out to Chinese / Japanese Restaurant with the Family & few friends, ate lots of Sushi, got drunk...
lol
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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adamm
Unregistered
posted
DaveNJ---could you please elaborate? Is it that they were wrong about the properties of Flagyl, etc., or has the organism been modified since those drugs were first indicated?
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
well-WHAT is happening when you use flagyl...something is happening. i'm one who had to start with 1/8 and very gradually work up to where i plateaued (sp?)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmm, my doc says yes there is. he go by singleton's book.
and he gives flagyl.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My llmd/PA worked directly for Dr. B, and is in constant touch with him, and he believes in flagyl as a cyst buster.
Posts: 455 | From Maryland | Registered: Jul 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
We're so screwed. These LLMDs can't even make their minds up. Ridiculous. We wonder why ILADS physicians don't get credibility w/the general public.
I know it's new, but I'm just referring to the image this presents to the general public.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
This is only my opinion, but most LLMD's are doing their best with what little is truley know about Lyme & co.
There are billions of dollars spent on research for Parkinsons, Alztimers, M.S., Cancer,(as there should be!!) then you have that grants and funding on 'discovering how to extend the life of an digested camera to be able to diagnose any disease of the digestive tract of the Whale'!!!!!!!!! HOLY COW----I CAN'T EVEN COME UP WITH A COMMENT FOR THAT ONE AS IT IS SO REDICULAS!!!
How much is spent, or granted to research facilities, Dr.'s, pathologists, scientest for Lyme and co infections????????????????????????
VERY LITTLE!!!!!!!!!!!!! So our LLMD's can ONLY go by what little research is done and MADE PUBLIC!!!! Much by trial and error. What else are they supposed to do??????? Keep in mind, I said "most"----not all!
How many Dr.'s----Internal Medicine, Infectious Disease "specialist??", Neurologists, Psychirotists that continue to insist Lyme doesn't exsist is 'your area'? How many have been diagnosed with 'Post Traumatic Stress Syndrome' with no known past traumatic event???????????
Are there ANY tests for P.T.S.S.-----------NO!!! It is merely an opinion of any Dr. and yet this is excepted by the gereral public!!!???? Your insurance will pay for YEARS of continual care from the Pshychritist and several anti-depressants. If you are filing for SDI; use the diagnosis Deppresion, Anxiety, PTSS, Mood disorder and it IS NOT QUESTIONED AND AUTOMATICALLY APPROVED!!!!!!!!!!! Yet there is no test for any of these DX. Of course there are thousand that do suffer these disorders---just an example.
YET----they are respected and their dx is not questioned!??? Then you have Lyme--several differant strains, babesia---several differant strains, etc............ Yes, some are clinically dx, and many---MANY have several positive blood test and with results in hand----------and still told they don't have Lyme, Babesia, etc............UNBELIEVABLE!!!!!!!
NOW THAT IS REDICULAS!!!!!!!
We---the public give credibility to these Dr.'s!!!! The general public has heard the word Lyme, but have NO ideal what it is!! EXAMPLE-----every Home Health Nurse that has been to my home does not know ONE thing about Lyme!!? NOT ONE!!!!!!!! However when they see me and how sick I am and ask what is wrong---they are very eager to listen and learn.
So it is not the fault of the LLMD's---------it trickles down to no funding, ignorance, etc............
The next time anyone see's their LLMD, please ASK them what made them become an LLMD??!! A HUGE percentange did not become one until a family member, close friend, ect.... was dx with it!!!!!!!!
I'm sorry---I could go on and on. I got on a rampage here, but didn't mean too! It just angers me soooo much!
Posts: 351 | From Georgia | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I know what you mean Scared08. It's just frustration setting in. I realize there's little out there and few dollars for research. It's just too bad docs in the same organization (ILADS) can't agree on issues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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Member # 8552
posted
I don't think it's important for docs to agree on all the issues. In fact I think that would be detrimental in our situation.
It seems that there is a wide variety of differences in people suffering from chronic lyme. Individual genetics, pathogen strains, co-infections etc..
Our doctor's need to be open enough to find what works in their area and to keep trying different things until they find the most effective treatments for their population of patients.
We will be in trouble if they ever subscribe to the IDSA mantra of one size fits all.
We need more research, more understanding of the pathogens but we don't need an IDSA mentality.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I never learn new things from someone who agrees with me.
posted
YES, there are cyst busters, Virginia. Some drs don't believe in cysts, but they are wrong.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Eric,
If your doc does not belive in the cyst form of lyme, your doc does not believe in the Burrascano lyme disease treatment guidelines.
This should give you pause.
Also, I hope you were kidding about getting drunk. If you drink any alcohol, you are lowering your chances of getting rid of this disease. Read it in Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I really wish there was a group of docs listed who believe in the Burracano treatment protocol. I'm sick of the generic term LLMD or ILADS member having no meaning. It's deceiving to patients and costly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the ducks don't know what they are doing...they just think they do. they do what they are told and don't think for themselves.
seekhelp and others upset about the llmds:
1. there has been a problem for awhile...anyone can call themselves an llmd and some do it to make money-not so much to tx
2. ilads has been aware of this and trying to figure out how to handle it-without cutting down on number of docs willing to risk txing us---cuz there are so few docs who will
3. recently ilads came up with a plan-i can't tell you where i read this but i am sure it is true. docs who go to a workshop get a special certification or credential or something that shows they did that. it has to be updated every couple of years. if you contact ilads -go to site and email them-they will explain i am sure. then when you call a new llmd for appt ask if they have that cert. or whatever it is
4. but when it is all said and done...we are still learning new stuff...really new stuff that is going to make a difference-so the ilads doc really has to keep up and be able to think for themselves. the top llmds all do things a little different(but the cyst thing i think is pretty standard)
i always suggest ppl give a doc a good year or two...but after that if you are not happy and getting good results-try another---they do all have different ways of doing it-and we all need different ways to get better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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This just was his opinion and I had decided to state it here, to see what the good folk here have to say about it, and unfortunately seems to be a split in decisions.
We surely need much more funding, research, cures, and admital by all those who are in denial.
As far as getting drunk, obviously I did type that night after I got home, so was not wasted, and it was my B-day, so I let little loose, drank some Amaretto on the rocks, good stuff...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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