I am a chronic lyme disease patient and I am looking for a little help with an attempt I'm making to gain public awareness and scrutiny for Lyme's current status in the medical community. I have been a usability engineer and mechanical/architectural designer, but at this time I am using my current decent health to try and get a proper debate going on the TV show 'The Doctors'. With input from the right people, I believe the producers of this show can, and will, do a Lyme debate justice, which I hope will assist others in their efforts on behalf of Lyme suffers.
On the show's message boards, in the feedback section, I have made a request for the show to host a lyme debate, fortunately or unfortunately its the only request of its kind.
My goal is to get get the attention of 'The Doctor's' producers with a concentrated, semi-organized voice in one place. But this idea needs help in the form of supporting posts.
If you read the post, please feel free to correct me any where I am wrong, make suggestions for improving my request and offer other suggested experts for the debate panel.
If you support the call for a debate, please add a post on the doctor's site saying anything!
comprehensive neurological experience, Dr. Fallon from Columbia University,
a ILADS rep
and some of the other Lyme heavy hitters and medical representatives, such as Dr. Poretz of IDSA (Infectious Diseases Society of America) supporting current diagnosis and medication guidelines of Lyme as appropriate and adequate.
I'd like to see acute Lyme (stage 1), entrenched Lyme (stage 2 & 3) and long term chronic Lyme (a percentage of stage 3) treated as separate topics.
Even though the cause is the same treatment urgency and acceptable risk is different.
What I would like to see discussed by each member of the selected panel is:
Define Lyme disease.
What is required to diagnose Lyme disease?
What is not required to diagnose Lyme disease?
When can Lyme disease be ruled out?
If misdiagnosed, how damaging can other treatments be, such as steroids?
How do you know when you can stop treatment?
What can other spirochete diseases, such as syphilis, teach us about Lyme?
Can Lyme be sero-negative?
Has any one looked at hyperbaric oxygen treatment in Lyme?
What treatments are available for acute Lyme?
What treatments are available for long term Lyme?
If you think you have Lyme, how can you help your doctor help you?
I would also like to see a segment on exercises and staying fit with lyme.
This is a subject I wish I had gotten correct advice on. To this day, I am fumbling with trial and error with what is too much.
The recommendations are to exercise like a normal person and keep active. However, I did that and kept getting severely worse and worse.
I think the recommendations are different for different patients, but I know of no guidelines available to use with lyme. I suspect that the recommendations for MS would apply at times, while the normal exercise recommendations would apply at other times during the disease.....
Please, if you find some one who has looked at this scientifically, please feature them on the show.
And of course, a general introductory overview of symptoms, risks of long term (and irregular taking of) antibiotics, and what a spirochete is, and what makes a spirochete unique would be in order.
******************************
I am worried about the path American medicine seems to be trending; tests are the only true authority, clinical observations by clinicians are secondary, at best.
What does it say about the path American medicine is trending, when a patient from a lyme designated area, with a history of a lyme bull's eye rash, but a negative western blot for lyme goes unconsidered for lyme at one of the top 50 hospitals in the country, in a lyme designated area?
And then gets `diagnosed' and therapeutic treatment from an acupuncturist with herbal training......
What does it say about where we are going when the mother of a 14 year old girl is threatened with a child abuse charges (long term use of antibiotics) from her school if a lyme test comes back negative - when the CDC considers lyme a clinical diagnosis?
There seems to be confusion about, geographically, where lyme is. In NJ, I was told lyme is rare here, its a New England illness. In New Hampshire I was told lyme is not here, that's in New Jersey.
There seems to be confusion about what negative tests indicate. In the presence of a negative western blot, I had doctors completely ruling out the patient ever had lyme, to the point of discounting and disbelieving previous doctor records of a bull's eye rash and successful treatment of symptoms with the standard recommended antibiotic treatment regimen.
The voice of a long term lyme patient may help give creditability to the debate for those coming from a `lyme patient' perspective.
My ultimate goal is to de-muddy the waters some. With all this 'controversy" flying around, I believe there HAS to be some concessions not yet made.
(I hate cameras with a vengeance [my husband only has about 3 pictures of me....no, really!], but I will do what is necessary to get a good balanced result on this.....including pay my own way).
I hate the underground, a cast aside, ``you're not really sick'', radical/out-law feeling that having this illness leaves me with.
I hate no one knowing how to treat me socially or medically, so they turn away.
I hate how the doctors I did get help from, were either bucking the trend, ``I think you have CNS lyme and you are NOT going to get help at this facility'' or in one case, working out of an office built in his basement.
I hate the way the doctors who help, seem to feel, down trodden, caught between what they see as the facts, an oath to be an advocate, basic human decency and the medical journal and political venom.
This is America....right?
I just want some light shed on what the heck makes this so controversial... the patient is either sick or not, we have therapeutic resources to help or not.
Arguing about whether or not there a new breed of hypochondriacs out there seems a little narrow-minded to me.
People know when they are sick. Even my horse can tell you I'm sick, and he's not even allowed in a medical school, at least not in one piece (ok, maybe that was a bad joke).
****************************** cooter, i hear you! you sent me something online but i was not able to get into that message; so that's why i did NOT respond to you!
cooter, we almost had UNDER OUR SKIN director andy wilson on the dr. show; he was talked to and supposed to tape something within a couple days of when i talked to him by email; IT FELL THRU AS USUAL!
he was waiting for confirmation; it didn't come.
dr. oz was supposed to have a show on lyme after he had viewed UNDER OUR SKIN dvd; big meeting in NY took place, and they were considering it; it fell thru.
greta van ...., cnn or fox news reporter, was going to do a program on this; IT FELL THRU.
every attempt we make, political figures enter into this and idsa to STOP things before they happen.
this forum here is the correct place to put this, and i see you placed same comments in 4 different forums. don't be surprised they are moved or deleted due to this. ........
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
posted
Thanks Betty - especially for the breaking up of the post! I know what you mean about breaking up the blocks of text, being better though, I forget.
I particularly like your comment:
"cooter, we almost had UNDER OUR SKIN director andy wilson on the dr. show; he was talked to and supposed to tape something within a couple days of when i talked to him by email; IT FELL THRU AS USUAL!
he was waiting for confirmation; it didn't come.
dr. oz was supposed to have a show on lyme after he had viewed UNDER OUR SKIN dvd; big meeting in NY took place, and they were considering it; it fell thru.
greta van ...., cnn or fox news reporter, was going to do a program on this; IT FELL THRU.
every attempt we make, political figures enter into this and idsa to STOP things before they happen."
This kind of well communicated comment really helps non-lymies understand our frustration. I really hope you put these comments on the Drs site.
If the link doesn't work, it is: www.thedoctorstv.com > Community > Message Boards > Feedback > "We need a debate on LYME!"
Posts: 45 | From VT | Registered: Jun 2009
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Many of us have been sending emails to several shows. Including The Doctors. They are not willing to put themselves out there like that.
So, we love the enthusiasm, but we have been there. Things always, "fall thru". Why, I think because someone catches wind of the show and treatens them.
Cheers, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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bettyg
Unregistered
posted
cooters & all others,
for the time being, could we NOT respond on this right now.
WE NEED TO GET CONN. GOV. RELL TO SIGN LYME BILL TO BECOME EFFECTIVE THERE.
ALL EFFORTS NEED TO KEEP CONN. POSTS ON TOP.
no offense to anyone, but this is OUR PRIORITY FOR ALL LYME/CO-INFECTION PATIENTS!!
thanks for understanding; we're all working hard.
please let this stay DOWN for now; no replies until gov. rell either signs, vetoes it, or it becomes AUTOMATIC law!!
thanks everyone; i normally don't come across this cross or whatever, but we've got to stay focused on ALL STATES CALLING GOV. RELL'S OFFICE!! ******************************************************
here's what i posted just now on your post there...
Cooter,
I feel THE DRS. SHOW should devote an entire hour to LYME DISEASE! It's shoved under the rug and talked about in 5 minutes, which is HOG WASH!
A debate ... I just want to see ACCURATE info given to the public about the lyme war controversy ... the 2 sets of doctors:
1. our chronic lyme literate mds, ILADS, Intl. Lyme associated disease society ... who will treat us LONG-TERM ANTIBIOTICS to get us into REMISSION!!!!
2. IDSA, Infectious disease society of america, aka infectious drs. who will treat you from ONE PILL to 3 wks. MAX!
They don't believe in chronic lyme, but since they have UNDERTREATED YOU FOR LENGTH OF TIME, you then become chronic and only HOPE to get into remission one day.
TO THE DOCTOR'S SHOW MODERATOR ... WILL THEY DO ONE HOUR ON "ONE SUBJECT" since it is so IN-DEPTH and so controversial?
They have taken pride in what they have done to date; but they have not even got their toes wet on this subject where many patients have lost EVERYTHING including COMMITING SUICIDE!
Question: Shouldn't the Conn effort not be sticky (stays at the top via designation)?
Keebler -
No response from LDA....
Posts: 45 | From VT | Registered: Jun 2009
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bettyg
Unregistered
posted
cooter,
feel free to go to top of page, and send moderator loub a PM...
ask him to make GRANDMOTHER'S post on CONN. a sticky!
although, she has 15 days to do something; she has used 5 days; so only 10 days left ... so since this is NOT LONG TIME; it's best left NOT featured at top.
that's my opinion and lou likes things that are going to be there for quite some time; not less than 2 weeks, like 10 days... fyi only.
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posted
Betty G & any one else that feels our energy could be better spent else where -
Betty -
Can you put your comments on the Drs site, so we can have this discussion there - I think it would be great for displaying our frustration.
"cooter, we almost had UNDER OUR SKIN director andy wilson on the dr. show; he was talked to and supposed to tape something within a couple days of when i talked to him by email; IT FELL THRU AS USUAL!
he was waiting for confirmation; it didn't come.
dr. oz was supposed to have a show on lyme after he had viewed UNDER OUR SKIN dvd; big meeting in NY took place, and they were considering it; it fell thru.
greta van ...., cnn or fox news reporter, was going to do a program on this; IT FELL THRU.
every attempt we make, political figures enter into this and idsa to STOP things before they happen."
Having this discussion about whether its worth the effort to correct them on their site I think would be great!
Posts: 45 | From VT | Registered: Jun 2009
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posted
All, thanks for your support post on the Drs site.
I agree the Drs is a very mainstream outlet. It is one of the primary reasons I have targeted the Drs show. The Drs have set themselves up as an approachable medical outlet focused on informing their audience about the latest, and some times controversial medical news, so their audience may have better dialog and decision making with their physician. And, because they are giving info on Lyme to the general public - what they say, correct incorrect; balanced, biased, all becomes public opinion. So, every time they mention Lyme in an unbalanced way, they are hurting every other Lyme effort out there.
All other shows have a "beyond our scope" argument. Additionally, there is no injury to the efforts being made in other arenas on Lyme if those other shows don't have coverage. There is just no help, that's different than hurt.
If the Drs help they will be an excellent resource to focus attention on the polarization. Until they do, I will be there reminding them they aren't done yet. These are doctors, with a code of ethics.... this is what should be useful to us.
We need more than just exposure. The public at large hears OF Lyme NOT ABOUT Lyme. The public at large is not aware of the polarization in the medical community on Lyme. It is the polarization that needs to be brought to light - after that is exposed, then issues can be discussed better in all arenas.
I agree the exposure needs to be in depth - however one speaker is one view and can only minimally communicate the polarization of the medical community on Lyme, if at all. Bringing the polarization to light requires both sides be represented.
I have targeted the Drs show for very specific reasons. If they don't help they are hurting us.
Posts: 45 | From VT | Registered: Jun 2009
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bettyg
Unregistered
posted
cooter, if you have comments for me .... please what you did ... post above or PM me from here. i'm here everyday.
it's inconvenient for me to go to their board to find/read your posts ok; thanks for understanding .. my time is filled to the brim now ... overflowing!
i'll add my comment above to your post per your request.
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We are still on top of the Drs message board thanks to you all!!!
So keep posting. Say anything. Demand an hour show or tell your story.... doesn't matter each post sends it back to the top. So it only takes one or two posts a day to keeps us at the top in the green!!!
Great Job every one!!!!! We'll get this done.
Posts: 45 | From VT | Registered: Jun 2009
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posted
We are still on top of the Drs message boards!!!!!!! 19 Days and counting!!!!! Great job!!!!
We have 14 voices so far..... Can we get some more...? You don't have to say much or you can say a ton, doesn't matter, each post returns it to the top (where we belong!).
If you don't have much to say, remember those of us not well enough to respond to these things and post something for those of us that can't speak right now!!!
Thanks for all your comments!!! Great job keep it up!!!!!
Posts: 45 | From VT | Registered: Jun 2009
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If the link doesn't work, it is: www.thedoctorstv.com > Community > Message Boards > Feedback > "We need a debate on LYME!"
Posts: 45 | From VT | Registered: Jun 2009
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posted
16 voices is all we have to say that there needs to be balanced coverage of both sides of the Lyme debate?
I'm betting there are a few more of you out there who would like to add comments about the Drs coverage of Lyme.
Lyme has been mentioned in two shows: - April 21, 2009 - Ask Our Doctors: Why Does This Hurt? - CDC was represented - May 20, 2009 - Avoid the Top Five Summer Illnesses - Perry Fields was represented but asked her only about Rocky Mountain Spotted Fever. Perry Fields has a website: http://www.beatlymedisease.com
Total coverage time less than a minute...
Posts: 45 | From VT | Registered: Jun 2009
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posted
All we had a good run for 3 weeks but we are loosing steam.
The summer will slow things down - but during the summer they are preparing their fall shows!!!
Fall and spring are the worst time for ticks!!
I can keep this up on my own - but it will be way more effective if we have 7 gazillion voices calling for the same thing....detailed, balanced coverage on lyme.
My goals are:
- detailed coverage of the Jul 30th IDSA re-hearing - exposure for 'under our skin' THE DRS PRODUCERS HAVE ALREADY BEEN TALKING TO THE OPEN EYE PRODUCERS - detailed coverage of the polarization in the medical community on lyme - main stream exposure.
Every post sends it to the top of the list - where we should be - so post anything semi-relevant.
posted
COOTER, write the md moderators there! i have gotten to know 75% of them quite well as i was instrumental on getting that site begun with many of my good links of info and personal experiences.
be nice, not demanding, and ask why your posts were removed.
we've been very active on their on ACTIVISM as well. when we have something going here on lymenet, i copy the info over there IF they don't have it already.
so please cool off, and write them a nice note inquiring ok. they have always been FAIR IN MY JUDGEMENT!
many of them are quite sick too so you may have caught them on a really bad day; i do not know.
posted
Still on top and almost a 1000 views! And the number of views doesn't record duplicate views if the person is logged in so that's a pretty real representation of the interest - not an artificial one....
Congrats! Keep spreading the word!
Posts: 45 | From VT | Registered: Jun 2009
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