I spoke with the pediatrician, a non-LLMD. He says it's possible that people who have been treating with antibiotics for years and years who then get better are not made well by the antibiotics but that something else came into play that made them well.
How do you answer that intelligently? Are there any studies I could give to him? I'm not sure, but perhaps he's looking for a cause & effect relationship with antibiotics?
Kayda
[ 05. May 2007, 12:41 AM: Message edited by: Kayda ]
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Geneal
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Member # 10375
posted
Does he know what that "something else" is????
Prior to being dx. with Lyme, I still had a couple of "good" days with less symptoms.
However, it is no where near how I feel now..after almost 8 months of antibiotic therapy.
I probably have at least 6 months to a year left of antibiotics.
Maybe the use of antibiotics knocks the infection down to a more "manageable" load.
One that our own immune systems can handle...better.
I believe it is easy to have an opinion about something
That you have never experienced/treated.
One can postulate about the "whys", but there are too many
Here on this board who are living proof of the use of antibiotics to get well.
I wonder if this non-LLMD would volunteer to be infected with Lyme and/or co-infections.
I say let's follow his progress (or lack thereof) and see where he is in 10 years...
I wouldn't put any stock in anybody's opinion who isn't Lyme literate.
My life and yours, just wouldn't be worth the gamble.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Vermont_Lymie
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posted
My initial reaction is like Geneal's -- that is easy for him to say!
That is something that ducks are just telling each other, with no idea of the mechanism or any data to back it up.
How about putting the burden of proof on him? Why doesn't he prove what he is hypothesizing? Why do sick people have to not only prove they are sick, prove that the abx treatment works, and then prove that they need long-term treatment?
These are great questions that you are asking, but the strange reality is that there is very little research done on effective treatment of late-stage lyme.
The studies and evidence that you are looking for, I think are the task of the new Columbia Lyme Research Center.
That said, I hope some of the experts here, like Sarah, treepatrol, and Cave, come by because they have a better knowledge of the peer-reviewed literature on lyme than all the ducks in the US put together!
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Aniek
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Member # 5374
posted
Kayda,
There is really a lack of studies looking at the longterm use of antibiotics for Lyme. There are number of reasons, including the difficulty in diagnosis, the difficulty finding people who haven't had treatment before, and the difficulty in having treatment compliance before a few months.
As far as I've discovered, there is only one published study looking at more than a month, and that was not in our favor. It was a 3 month study, it showed no difference. But there are many faults with the study.
When published the Columbia study should be positive, but I believe it also looked at only 3 months.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Yes, maybe you could mention alien abduction. The lyme cure must be in the blue (maybe it's green)retracto beam that wisks unsuspecting earthlings into the mother ship. Besides long-term abx, this must be the "other" cure!
I think my theory holds about as much water as this non-llmd's. I love when doc's make things up to suit their view of the world. It helps us all so much. Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Thanks everyone! I think you're right. If they're so sure of themselves, let them volunteer to get Lyme, let it disseminate and let it go untreated, undiagosed. Then they can tell us it's not real!
Sojourner, you crack me up! Yes, the cure must have been aliens!
At first I thought he was one that I could work with, i.e. send him some studies, etc. But, did I misinterpret his intentions? He didn't sound sarcastic.
Do you think his questions aren't really honest ones? In speaking to him, he did say: "In mainstream the Igenex test isn't positive; Holistically, maybe; Likely, no. However, he did say he's learned never to say never. That gave me hope that perhaps he was open.
BTW, my LLMD says my dd's Igenex test is positive and she needs treatment.
Not to sound morbid, but given a choice between cancer & Lyme, I'd rather have cancer. At least it's recognized as a disease with different stages & there are different treatments for it.
Just as a side note, medical mainstream recognizes late stage sypillis, how come they don't recognize late stage lyme? It seems so obvious!
Kayda
[ 05. May 2007, 09:41 AM: Message edited by: Kayda ]
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Kayda,
Until there is more research, the majority in the medical community just will not accept what we experience as the truth of Lyme.
There are very strong voices pushing their own viewpoint. This is what doctors are taught. I have found you can't always blame the doctor, since they are subject to so much propaganda related to Lyme.
The only way you can change so many minds is by proving it. Unfortunately, that's not so easy. And some of the proof that has occurred has been dismissed and never reached most doctors.
But people keep fighting for the research. The opening of the Columbia Center should help us.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Foggy
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Member # 1584
posted
Please tell him that when he discovers a safer more efficacious treatment modality, we're all ears. Until then, this is all we have that's effective.
Also remind him that when he looks behind the curtain, he'll find the Wizard of Oz. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
This is so sad, I do not understand doctors/ducks who refuse to look at the evidence. How many people on this board alone have had lesions on their brian and they are gone after treatment, SPECTS scans that improved with abx treatment, were blind and now they see, were in wheelchairs and now they are walking.
What can the ducks possibly say about that, are we are all just making it up?
This stuff never seems to end.
Posts: 6639 | From Michigan | Registered: Jun 2001
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
all i can say on this one is runrunrun!!!
My fahter was given a dx 27 years before he passed away of MS but 18 months prior to him passing on we had him tested for lyme ..( don't ask why but turns out the whole family has this .. ) He was positive we treated him for it. and even though he died..(probably from not be treated for so many years of being infected with it and since no one ever ran a test for all those years he was sick we will never be able to PROVE it)
in the short time before he died, he went from bed ridden and a mental vegetable to beginning to walk alone and mentally sharp as a tack..
before treatment he was as dull as a ball and could not talk with anyone for more than 10 minutes it would completely drain him of all energy... after 6 months of treatment: he would make the ride to the LLMD eager to speak with him and sit up the whole trip there and back ..(asking are we there yet,, the whole ride, just like a kid, eager to viist the grandparents!)
when we first started the trips it was almost impossible to get him in the car from the wheel chair and he would sleep the whole way there and in the office... His PT case worker even siad .. I am not sure I beleive int he Lyme Disease diagnosis but nothing else can explain after my three years of caring for this man .. why he was improving so much before he passed away
His death was a shock to everyone,,, but after the years of damage done to this man's body it is a wonder that he lasted that long... but he held on long enough for fate to direct the rest of his family to HOPE that we will all not suffer as much as he did..
It is sad that a family has to loose a loved one SO young and after so many years of pain for NO reasons other than to find help for the rest of the family so they may live a better life...
I have to go now, I can not see through my tears
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
It is amazing the things docs will say, just make up, figuring dumb patients, what do they know.
If you look at H. pylori, which is well known now as the culprit in ulcers and gastric cancer.....at least half of the people with it in this country still don't get treated right. What causes this kind of inertia and ignorance? Assembly line medicine?
I think the majority of docs just go along with the few loudmouths in lyme. It is easier than thinking for themselves or challenging the loudmouths.
Posts: 8430 | From Not available | Registered: Oct 2000
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dmc
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Member # 5102
posted
I had written this letter to the editor of the Hartford Courant.
Of course they didn't print it. They didn'y print any letters in response to that article. Yep, "Welcome Connecticut-FIRST in Lyme, LAST in Treatment" Quote from the Hartford lyme support faclitator.
Regarding the Front Page story on Wednesday, March21, 2007 titled ``Lyme Disease Experts: Butt Out, Blumenthal", if these ``experts'' truly believe long-term antibiotics are not necessary for Lyme Disease then they should prove short courses cure Lyme.
I believe the noble thing would be to get a bunch of the black-legged ticks and let the buggers bite them.
Do not remove them when attached, since as the Infectious Disease ``experts'' state you can't get lyme unless the tick is attached for more than 24 hours.
Now comes the truly noble part...do not take any antibiotics until you get a ``tell-tale sign'' of the bulls-eye rash.
Even if no rash but you get the``flu-like'' symptoms, no antibiotics for you. That's just a virus and everyone know antibiotics don't kill viruses.
You may take an ELISA blood-test, but if that comes back negative, there is no-way you got Lyme. You cannot take antibiotics.
You may treat if you get Bell's Palsy, but only if you rule out MS, Lupus, ALS first with those costly tests.
If you do get joint swelling, if not the knee, no antibiotics for you. You have an arthritis that has nothing to due with the tick bite.
It's Fibromyalgia, Cronic Fatigue, but nothing due the bite.
Remember your ELISA test was negative, you can't have Lyme. You'll just use steroids long term, since all the experts know it's not Lyme and steroids don't harm anyone.
Now if you do take antibiotics, make sure it is only for 21 days, 30 the most, but know you are cured even if symptoms do not disappear and new ones begin.
It is not Lyme, you're cured. Come-on guys, do the noble thing, be the hero for your ``treatment guidelines''.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Ducks Gerrrrr
Most of them love to spout off without knowing how bb lives, multiply's & survives. It's really easy like Lou said to except the old info of the loud mouth ducks.
Here is a link that show's the survival of bb> I think if you feel up to it you could copy & just pop it in an envolope for the duckj to read:
Here's the link. Specially check out the "advanced cyst form"..which prove one of the ways bb survives:
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I am one of those poor saps who has gone forever (21+ years)without any ABX at all. By the time I was dx'd with Lyme, I'd become allergic to all ABX except Cipro, which does not kill Bb. Before you ask, yes, I've had skin testing, and it is not herxing, it is true allergy.
Even though the ducks I see have all believed I have late-stage Lyme, since I've not had their magic 3 weeks of ABX , they overwhelmingly hold the view that Lyme is not really a very serious illness. I have no idea where they got this opinion from, but I have seen it over and over again, in all the ducks I have been to.
The only doctor who has ever validated me was a Veterinarian we took our cat to, who when told that I had late-stage Lyme (I had to ask for a chair to sit down due to weakness, which is why I told her), said she was very,very sorry, and she guessed that all that could be done at this point was to keep me comfortable. She looked like she was going to cry, and I almost cried.....it was so wonderful to be understood. Vets seem to be way ahead of the loop on this, compared to people ducks.
Example: I had surgery to remove my gallbladder a week ago. Before the operation, I asked my surgeon what the percentage of complications was. He knew I had tertiary Lyme. His response: "We hardly ever see complications in otherwise healthy people such as yourself".
Even my Cardiologist, who has other Lyme patients with heart problems like mine, thinks I am "doing pretty well living with Lyme" and dismisses complaints, despite the fact that I can't walk around the block, can't drive, can't walk at all without drugs to reduce muscle spasms, have 3 heart conduction problems and 3 leaking heart valves, and on and on.
Believe it or not, I have the best ducks in my area, having gone through most of them early on in my search. So, this idea that Lyme is not a big deal is a widespread misconception that I have not seen addressed here.
Does anyone have any ideas why the ducks think that even active, untreated Lyme is no big deal? As long as they think this way, it's no wonder they are dismissing the need for long term tx.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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I have no idea why that is the case, but I've run into it myself! All the things you said are absolutely true!!!!
Lyme ranks right up there with poison ivy and that's it. Unless, like you said, you're at the vet. Then it is a different story.
LivinLyme: That's remarkable about your father! His story reminds me so much of Pat Pepper's story. She was misdiagnosed with ALS and went to the best drs. (30 neurologists) in the country. Not until she met Dr. Burrascano and was treated by him did she see improvement! But like your father, it was too late. She died. But if it had been caught earlier, a person really wonders what the outcome would have been! She could not believe the medical politics involved and she was the former Mayor of West Palm Beach. Isn't that something for a politician to say?
How did this disease get so politicized anyway? One of these days, the truth has to prevail!!! it has to, or there will be a lot more people dying.
Don't you think that a lot of Alzheimer's patients really have Lyme? I do.
Beverly, I have a SPECT scan that shows Lyme lesion. However, the radiologist says it is from an infarction (stroke). So, at every turn, there is someone telling a lie!
Geneal, I'm so glad you are feeling better after antibiotic treatment!
Aniek, The amount of propaganda is unbeliveable!
Foggy, I had a good laugh about the Wizard of Oz! So, true.
dmc, I read your letter and wished I was a publisher. I'd publish it. Maybe you could re-send it or publish it like a flyer.
Vermont, You're right, why does the burden of proof fall on sick people!
Lou, thank for the info about H. Pylori. It really is sad that it still isn't being treated properly by all physicians! If I remember right there was quite a fight about it.
Dana, Thanks for the link. I'm going to take a good look at it.
The pediatrician offered to treat for Lyme with some safe herbs (not antibiotics). Maybe that will be part of the protocol? Maybe not. I also have to go to the GI drs/ducks and plan to bring the article on Bell's Palsy of the GI track. I'd appreciate any words of wisdom and prayers when I do this. It's the end of May.
Thanks, Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Kayda, it is political is you read the book LAB 257 by Michael Carroll.. it clearly outlines how it is a government issue... Yes it is sad that so many people will die as a result .. of neglect on who's part.. I say look straight to the TOP of the LIST.. who does the most covering up in the USA.. who lies straight to the people (unsuspecting, trusting people) and who ever said that the USA is any different than Germany..
I say it is a modern day Hitler stand when a country this big can allow it's people to die one by one ten by ten.. hundreds by hundreds because 1. they refuse to acknowledge it 2. they refuse to run standardize testing for it 3. they refuse to find accurate testing even though there are tests that seek the actual bacteria 4. they allow the people to be fed misleading information 5. they choose to turn their backs
the strangest thing is that this all could have been prevented or at least placed under control if it had not been covered up and ignored for this many years...
but you think of how many generations have been exposed to it and no tests are run on all these generations.. so people who have it and don't know they have it ( very similar to syphilis) continue to have families not knowing that they too are helping spread the disease further the babies aren't tested so they in turn have babies and more and more infections and strains are created until there is no stopping it.. okay so now who really won WWII????
catch 22 if you ask me.. ultimately we are none the wiser how many years passing..
my blood boils when I think of this disease and now the thought that possibly cancer is an advanced form of lyme gone untreated.. I mentioned this to my LLMD many years ago in PA and now he tells people that he believes this is probably what is happening....
I had said to him I don't have a PHD but who is to say that advanced stages of Lyme with no where to go and nothing more to destroy,, can mutate and that this change takes the form of cancer.. he said you know you may have something there...
I mean adaptation is a known factor in survival and since this bug is so strong and cleaver .. I hate to think.. really I do.. but I just plain hate this illness...and how it came to be an issue in the USA...
Hugs to all I have had enough for a while again.. I get my pain patches again in three weeks maybe I can get my book finished then.. and be of more support.. I get so darn negative and hurtful.. GTG LindaD
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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I don't know what to say. There seems to be no other logical explanation. Some brave souls are trying to help patients like us and then they are slammed to the ground. My own dear LLMD in NC & now our precious Dr. J is facing something similar.
The legislation that was signed into law is completely ignored. It would certainly help all of us who are suffering from Lyme. The fact that dogs & cats get much better treatment by vets and they even have a vaccine that works! What does that tell you.
Anyway, there is so much mis-information out there, it's hard to get help.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Cobweb
Unregistered
posted
quote:Originally posted by Kayda: Hi,
I spoke with the pediatrician, a non-LLMD. He says it's possible that people who have been treating with antibiotics for years and years who then get better are not made well by the antibiotics but that something else came into play that made them well.
Kayda
Even when you make it to an LLMD treatment for Lyme disease is a crap shoot. I have been treated with oral antibiotics(by Ducks for various resons) for what seems like years and years-really only three-and what seems to have finally made a difference is IV Rocephin-at least for me.
Bottom line- what "came into play" for me was the switch to IV antibiotics.
quote:Originally posted by Cobweb: [QUOTE]Originally posted by Kayda: [qb] Hi,
I spoke with the pediatrician, a non-LLMD. He says it's possible that people who have been treating with antibiotics for years and years who then get better are not made well by the antibiotics but that something else came into play that made them well.
Kayda
Even when you make it to an LLMD treatment for Lyme disease is a crap shoot. I have been treated with oral antibiotics(by Ducks for various reasons) for what seems like years and years-really only three-and what seems to have finally made a difference is IV Rocephin-at least for me.
Bottom line- what "came into play" for me was the switch to IV.
posted
And just to show you how smart I have become-I don't even remember how to delete a repeat post.
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livinlyme
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Member # 3773
posted
Cobweb, thanks for that cause now I am finding out that since 2001 of orals and only orals I am no better. as soon as I go off the ABX I am full of relapse...
I have asked a number of LLMD's since I have had the opportunity to do so.. only because we had circumstances that changed our paths a number of times...
but none of them will put me on them.. they say they will look into it and as time passes I loose benefits and have no way to afford to have the PIC line done...
I am trying to get a member of my family to at least get this done so that at least one of us wil know that it works..
my mother wont ask dr S and I know Dr F won't do it for my sister she can't even afford for him to fill out a disability form and she is no where near able to work anymore; she has CNS Lyme real bad..
her boss has recently threatened her job so she is looking to sell her house and move in with my mom...
as for us we are located 1,000 miles form them and that was for my back .. we have no one to turn to if we sink... only each other... there has got to be something that can be done about this...
it is a sad situation when animals get better health care than humans..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Kayda said.. "He says it's possible that people who have been treating with antibiotics for years and years who then get better are not made well by the antibiotics but that something else came into play that made them well."
Is it still illegal to shoot people?
Livin...
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, they overwhelmingly hold the view that Lyme is not really a very serious illness. I have no idea where they got this opinion from, but I have seen it over and over again, in all the ducks I have been to. ![[Roll Eyes]](rolleyes.gif)
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