I think it would be great if he would have a panel of people with lyme disease and/or LLMD's on also.

I wonder if any of them have ever been tested for lyme. Symptoms are so exactly similar to so many of our symptoms. One woman called in and said she had MS and was diagnosed at age 65. It is a well-known fact that MS does not affect older people, just young adults.

It was so maddening to sit there and not be able to ask questions (you can never get through on the phone).

For example, I have a cousin who is around 50. She was bitten by a tick many years ago, had a huge bull's eye rash and a stiff neck that put her in the ER taking steroids to relieve it. She now has terrible rheumatoid arthritis, plus hives and weird rashes all the time. Tested in the normal dumb ways for lyme and came up negative.

So here we have a woman who says she has RA, when she has untreated and undiagnosed lyme disease. Why could this not happen with MS as well.

People with lyme have scars on the brain also, just like MS patients. Also with one exception most of the people on the panel wre diagnosed since the 80s, when lyme began to spread so rapidly.

The lawyer on the panel had my exact symptoms. I had a moment when I thought maybe I have MS and not lyme, but MS patients do not get sick when they take antibiotics do they?

Either we are all nuts or the medical community is in a state of ignorance that is beyond anything I could ever imagine. (I was married to a surgeon at one time, so believe I know that doctors are far from the smartest creatures on the earth).

Last night's show made me ralize more than ever, that we have got to do something to tell the world about this!!!!!!!!

Lymelady

I'm quite sure that esteemed doctor on the show has heard about
- the "Lyme masquarading as MS",
- MS patients being cured with antibiotics, and
- the geographical overlap between MS cases and Lyme cases.

But that sad fact is that MS is BIG business.

MS patients are treated for their symptoms FOR THE REST OF THEIR LIVES.

IOW, the medical companies will be selling medication to these patients for the rest of their lives.

But what's the doctors motive? Well they are probably highly political!

I wonder how much funding the dear doctor will get if he ventured down the "Lyme road"?

And I also wonder how the dear doctors reputation would turn upside down, once his esteemed colleagues found out that he was going down the "Lyme road"? Cause this will affect their funding situations as well.

I'm sorry to be so cynical. But I can see no other explanation why doctors, who I'm certain are highly intelligent, can't see the forrest for trees.

We live in a world where everybody has an agenda and a career to think about. And that includes the doctors.

The more I think of it, the more credit I give to the LLMDs. They are really sticking their heads out for grabs.

I have written emails to a number of the participant on the Larry King panel yesterday asking them if they have been tested for Lyme and if they are aware that people with Lyme are sometimes misdiagnosed with MS.

Quite frankly, I think a percentage of those people have lyme and not MS.

Saturday, the Colorado Support System had a meeting and 2 physicians were there. One of them had been misdagnosed and later discovered he had lyme.

Another perfect example of what were talking about!

Michael, your post is right on. The LLMD's do stick there necks out for us. If people were being diagnosed properly instead of an MS dx, where would the drug companies be?

These are the CNN websites. I printed out the transcripts.

For these people to seem so smart, they sure are a bunch of dummies or maybe we are but I don't think so.

quote:

---

Originally posted by firsttwin:
I caught the tail end of the show. I was so mad that I was talking to the TV. I said "It's Lyme disease you dummys". People trust doctors was too much.

For these people to seem so smart, they sure are a bunch of dummies or maybe we are but I don't think so.

Maria

---

I don't think anybody on that panel is dumb.

For the patients on that panel, the proper classification is more like "misled by" and "too trusting in" their doctors, IMO.

For the doctor on that panel, the proper classification is more like "denial" and "self-serving".

I do think that infectious diseases in general is behind MS.

And it wouldn't surprise me if Lyme turns out to be one of the main causes of MS.

I am sick as a dog (herxing on mino) so just getting here to the computer and writing to Larry King did me in completely.

Writing to the participants on the panel is brilliant, particularly that lawyer friend of Larry King's. He seemed smart and a good friend of King's which could help our cause if he would get tested properly.

Let's bombard them all, what have we got to lose. Although we cannot mention any docs' names without their express permission

any proof of borrelia infection being the sole root of MS is completely far fetched from reality at this point.

any "evidence" of latter is completely theoretical, casual and unproven at this juncture.

it's a LARGE step from borrelia being the cause of MS.

the fact that a subset of MS patients have responded beneficially to antibiotcs, specifically minocycline, doesn't in anyway prove that the are harboring a latent borrelia infection either.

the pharmacokinetics�of antibiotics, specifically minocycline, can have other "unintended consequences" than just killing bacteria.

it would be more fruitful to lobby for a panel on Lyme disease, wholy seperate from this MS episode, with the Larry King producers.

You have Brooke Landau, Amy Tan and host of "controversial" medical doctors to make for a interesting show with star power and climatic dynamism.

This is, IMO, a wiser use of your intellectual energy and efforts. reference the "time for lyme" and "hope to heal" party and conference on the homepage of lymenet as a guideline to this achievement.
http://www.hopetoheallyme.com/

otherwise you just sound like a bunch of marginalized, uninformed whining babies to the producers of the show.

they probably get 2000 complaints a night regardless of the topic of conversation.

Thanks for showing the CONTACT ME for Larry! Here is what I just wrote.

Also, after you send your email, it brings up the thank you for sending screen. At the bottom it shows, TRANSCRIPTS; you can read or print from there! Wanted to include for the person wanting to read the show.

"Please have a LYME/TICK disease show featuring:

lyme patients, Brooke Landau, Amy Tan; and Pat Smith PRES. of Lyme Disease Assn.

Lyme disease mimics 300 OTHER medical conditions.

I tried calling in 1-17-05 on the MS show, but all the lines were busy.

Please ask the participants if they were tested for lyme?

Using WESTERN BLOT IGM & IGG blood tests sent only to 1 of these 3 labs: Igenex, MDL, or Bowen.

Thanks Larry for bringing these educational health shows internationally!

I'd much rather have shows like this than all the depressing ones on those killing their spouses/children, etc.

We have been loyal viewers for 25+ years and listened to your radio show for years.

It would be helpful to get the name of a producer on LKL and lobby them individually.

There was a producer from ABC News in NYC who appealed to many of us for information on a proposed Lyme story.

She picked our collective brains then incredulously killed the story, claiming that Lyme was an "Old story" and had been done before.

ZipZip says she's McPucho.

http://flash.lymenet.org/ubb/Forum1/HTML/029579.html

Here's McPucho's own words again:

http://flash.lymenet.org/ubb/Forum3/HTML/010802.html

"The best thing to do is to completely and utterly ignore him.
If noone notices or replies to his posts, he will get bored.

All morons like mcpucho get bored when they are ignored. Their entire life is centered around starting something."

i said adieu and yet you still speak of my prescence in volumes. is this thread not a dedication in memorium to bashing my existence? is this the lymenet groupthink raison d'etre du jour?

i will live on, sauntering in solitude in the path less taken, but i bid farewell with one more poem. read it, digest it, reflect upon it.

'A New Rule' by Rumi - Ghazels

"It is the rule with drunkards to fall upon each other,
to quarrel, become violent, and make a scene.
The lover is even worse than a drunkard.
I will tell you what love is: to enter a mine of gold.
And what is gold?

The lover is a king above all kings,
unafraid of death,
not all interested in a golden crown.
The dervish has a pearl concealed
under his patched cloak.
Why should he go begging door to door?

Last night that moon came along,
drunk, dropping clothes in the street.
"Get up," I told my heart,
"Give the soul a glass of wine.

The moment has come
to join the nightingale in the garden,
to taste sugar with the soul-parrot."

I have fallen, with my heart shattered-
where else but on your path, and I
broke your bowl, drunk, my idol, so drunk,
don't let me be harmed, take my hand.

A new rule, a new law has been born:
break all the glasses and draw near
to the glassblower."

goodbye dear friends, best of wishes and good luck in all your endeavors.

you may reach me via my email address anytime you wish.

[This message has been edited by mcpucho (edited 07 September 2004).]

Main Entry: tact
Pronunciation: 'takt
Function: noun
Etymology: French, sense of touch, from Latin tactus, from tangere to touch -- more at TANGENT
: a keen sense of what to do or say in order to maintain good relations with others or avoid offense
synonyms TACT, ADDRESS, POISE, SAVOIR FAIRE mean skill and grace in dealing with others. TACT implies delicate and considerate perception of what is appropriate . ADDRESS stresses dexterity and grace in dealing with new and trying situations and may imply success in attaining one's ends . POISE may imply both tact and address but stresses self-possession and ease in meeting difficult situations . SAVOIR FAIRE is likely to stress worldly experience and a sure awareness of what is proper or expedient .

Lyme is a huge story waiting to be broken by some lucky and hardworking journalist; IMO it has the makings of a Pulitzer Prize winner if done correctly.

Also going by "their" rules does not get us anywhere. Lying in bed watching documentaries about Martin Luther King Jr. yesterday, made me think about our struggle to be heard. We are an irritating faction many would like to sweep under the rug for God knows what reason.

Trying not sound like a total radical, I do believe we have an obligation to do more, not only to help ourselves, but the many folks coming after us who will suffer as we have suffered with wrong diagnoses (as our disease progresses), bad doctors, flying all over hell and back for treatment and poor insurance coverage; not to mention trying to explain this to friends and loved ones.

My 2 cents of course and please feel free to disagree. Larry King would have jumped on this story in a heartbeat if it was about bypass surgery when he was having his heart problems.

quote:

---

Originally posted by Recipegirl05:

ZipZip says she's McPucho.

---

first off i'm a he, not that it matters, and second off people ran me off the board for questioning skyking's incessant badgering of his rife protocol, (and now he is coming here to profit off of it) so i reregistered.

i don't really care if you have a problem with that.

foggy - this definitley is newsworthy but has to be approached in a sensible manner not by making outlandish claims that cannot be substantiated.

a show on Lyme differentiated from MS is the way to go. MS and Lyme are two different casualties of modern health. there very well may be a genuine crossover between the two but that isn't definitely known at this time. you have to speak in facts, and when speaking terms of hypothesis they have to be grounded.

loose theories just won't fly. i can see a persuasive representative from the ALDF counterarguing a loose hypothetical point in one fell swoop.

and it is the producers and network exec shows who make the decisions. if you want the airtime to promote a cause you have to follow the right path to be able to speak your mind. airtime is anything but a right, it is a priviledge

(unless you want to go on public access but your audience is going to be close to nothing).

MLK played by the "thier rules" and that is why his argument was heard and accepted where the Black Panthers and Malcom X were not.

MLK was credible and didn't try to win the war in one fell swoop, he marched and won battle by battle. his battles are still being fought.

militantism isn't just bradishing literal weapons but the weapons of posture and procedure as well. MLK took the peaceful approach.

history has shown that radical approaches, unfortunatley, usually falter. this was the difference between marx and lenin, for example.

as for some hardworking journalist Edlow, with Bullseye, tried but the mass medium is television and the journalists have to defer to the higher ups. that's what a beuracracy is.

i 100% agree that it is way past due for a "fair & balanced" expose on Lyme disease. unfortunately, IMHO, the leaders in the Lyme field haven't been very dilligent in making this happen, from my perspective.

... thus it is our obligation to do more but no one seems to acutally do anything. for instance i posted about the congressional tick borne disease bills a while back and that people should write thier senators. i think i got 5 repllies. 2 of which stated that it didn't come down from the top, from the "lyme leaders" (like LDA or LDF).

if people can't think for themselves they can't efficiently mobilize, plain and simple.

the NBC Brooke Landau piece was pretty good but it was short and didn't have any conversational talking points.

you need both "Lyme camps" up on the tube making their arguments. and these need to be credible doctors and researchers with the backgrounds to back up thier arguments.

if you want to organize a campaign to get on Larry King or a similar serial magazine format show i'm 100% behind you. it's onething to talk the talk.

and if you have experience in the field you have a heads up as to how to ascertain going about such a progrom.

anyhow i think the new time for lyme fundraiser and the hope to heal lyme are the moves in the right direction. the importance is to build off of those well thought gatherings and bring it to the larger audience.

quote:

---

Originally posted by nan:
I really admire people who seem to have ALL the answers about EVERYTHING!

---

Nevertheless, zip has some good points.

The main thing is to not get carried away with unsubstantiated, emotional and even incorrect information when approaching these news media.

It's important to keep the eye on the ball and stick to facts.

This is not a "MS vs Lyme" issue, nor a "Most MS is Lyme" issue.

We'll get nowhere like that.

Think about it this way.

Go back in time to before you were diagnosed with Lyme. Do you recall how little you knew about Lyme?

Now suppose someone writes you an email which states that Lyme is often misdiagnosed as MS, PD, ALS, CFS, etc.

What you say? What they talking about? Lyme is something you get from a tick bite. You get rash, fever, headache, flu and joint pain. Then you go to doctor and get abx and it's over.

The email continues to talk about if the LKL panel members have been tested for Lyme, and specifically at Igenex and Bowen?

What you say? Why should they test for Lyme? And what's with the labs? What difference the lab make?

We'll be talking way over the head of Larry et al. They don't know what we already know about Lyme.

Remember, that it has taken us months to learn the "truth" about Lyme, and yet we still don't really KNOW the "truth". But we sure do have a FEEL for what is might be.

Ask yourself this. Did you become convinced overnight about "Lyme can masquarade as MS", "Lyme sexually transmitted through sex", "seronegative doesn't mean you don't have Lyme", etc?

Personally, I only slowly, and at times even reluctantly, accepted these things, some of which are only theoretical, though highly likely to be true.

Thus, we should be talking to these people as if they were baby Lymies who just might have an interest in learning that Lyme is more than a tick bite and two weeks of abx. A sort of slow education like we all experienced.

We'll be spending our time much better by approaching "celebs" who are already sick.

Cause they are much more likely to be motivated to "look into" Lyme and start the snowball rolling.

But even when approaching "celebs" we would have to excersice caution. A few over-the-top-like emails about Lyme and MS/PD/ALS and IGeneX, and they're likely to ignore all subsequent and perhaps constructive emails about Lyme.

Just my 2c.

... and I really don't know much, just to preempt anyone who might think so

quote:

---

Originally posted by zipzip:
while Lyme can certainly be often misdiagnosed as MS, MS does exist and is a seperate disease than Lyme disease.

any proof of borrelia infection being the sole root of MS is completely far fetched from reality at this point.

any "evidence" of latter is completely theoretical, casual and unproven at this juncture.

---

zip, do you happen to know how accurate the MS diagnosis is, and if the evidence (e.g., the lesions in the MRI scan and the abnormal proteins in the CSF) can not be caused by other diseases, incl Bb?

IMO, the real point with the "MS vs Lyme" discussion is that just because someone is diagnosed with a disease such as MS, does NOT mean that that disease is the sole cause of a patients symptoms!

So, for the sake of this argument suppose that someone contracts Lyme and starts to have these MS like symptoms, which many neuro Lymies actually do.

Assume furthermore that later on in the disease the person is diagnosed with MS.

Now which of the two diseases is responsible for the patients symptoms?

Noone can tell for sure...at least not yet!

It would be really interesting to find out how many of the MS people also have an infectious disease.

Finally, noone knows what causes MS, ALZ, etc. But there are probably VERY few doctors that believe that MS is something that happens WITHOUT any outside "help".

Michael

Also, I meant to include the web site pertaining the 300 other medical illnesses,
but slipped up...brain fog!

To fibro/CFS members,
I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, etc.

Hope you each find some good info there.
Saw it's from Art Dougherty, Calif. in 2001.
http://www.geocities.com/lymeart3/misdiag-links.html#disease
======================================

Thank you for the e-mail you sent to Larry King Live. This auto reply is your notification that we have received it.

While we are unable to personally reply to every e-mail, your comments are important to us, and we do read each and every one.

Comments become part of the viewer response report that is prepared and made available each day to our producers and senior management.

If you have mistakenly submitted a question or story idea through this comments section, please allow time for it to be tagged as such and routed to the appropriate persons for handling.

Again, thank you for contacting us, and please visit the attached links for more information on our anchors, programs and schedules:

Would you like to review transcripts of previous shows?

Please visit our transcript at http://www.cnn.com/transcripts

Do you need information on the show schedules?
Please visit us at http://www.cnn.com/programs

Are you looking to purchase a videotape of one of the shows?
You may order a video and/or transcript of a program or segment from any of the following sources:

Multivision can provide tapes or transcripts of CNN for the past year, and for CNNI, CNNfn or Headline News for the past two months. Call or write at (800-560-0111) (925-472-8880), http://www.multivisioninc.com/

Video Monitoring Service can provide tapes or transcripts of CNN, CNNl, CNNfn, or Headline News for the previous 2 months. Call or write them at (877-698-8007) (212-736-2010), http://www.vidmon.com

FDCH can provide tapes or transcripts of CNN programs (domestic only) from October 1996 to present. Call or write them at (800-266-6397) (301-883-2482), [email protected]. Or visit their Web site at www.fdch.com and complete an order form. Their mailing address is 1100 Mercantile Lane, Landover, Maryland 20785.

Thanks again for your interest and keep your browser pointed to http://www.cnn.com/.

I'm sorry for all your troubles.

If I said something to insult you, even indirectly, I apologize.

I don't think anyone around here is trying to insult anyone. They are simply trying to help and to discuss.

Some people can handle that their diagnosis and thoughts are challenged by peers. Others can not handle it.

Look, the CAUSE OF MS IS UNKNOWN!!!

It is widely accepted that MS doesn't happen by itself!

That means SOMETHING CAUSES MS!

That "SOMETHING" could be so many things, obviously.

And it could be Lyme too. Bb is a candidate due to it's ability to mess with the immune system.

As I'm sure you know by know, if someone tests negative for Lyme, that doesn't mean that someone doesn't have Lyme.

And even if someone does have simultaneous Bb infection (or some other immune system debilitating pathogen) and MS, that doesn't mean that the Lyme caused the MS.

But it does mean that that someone should be treated for Lyme. And there is some likelyhood that this treatment might cure the MS as well.

I understand that once you're diagnosed with MS that this to a very large degree "locks you into" the MS category, where even some LLMDs will refuse to treat you for Lyme (if you have Lyme like synmptoms.)

I can see how it's difficult to scale the hurdle to look for other causes.

I wish you and your family good luck.

Clinical Presentation -

*Neurological examination reveals objective abnormalities of CNS function.

*History indicates involvement of two or more parts of CNS.

*Involvement of CNS follows one of two patterns:

-Two or more episodes, each lasting at least 24 hours and at least one month apart.

-Slow or stepwise progression of signs and symptoms over at least 6 months.

*Patient aged 10 to 50 years old at onset.

*Signs and symptoms cannot be better explained by other disease process.

Diagnostic Presentation -

*2 or more objective clinical lesions on spinal cord or neck (as observed by diagnostician); also known as L'Hermittes sign

*positive CSF oncological bands but not in blood serum; 95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap

note - Positive oncological bands upon spinal tap are indicative of an immunological response but they are not diagnostic for a particular condition per se

The primary purpose of CSF analysis should be to rule out other conditions than multiple sclerosis. Although they can be highly suggestive of MS, they do not, in themselves, provide definitive disgnosis.

However, CSF analysis technology is still advancing and researchers continue to look for definitive molecular markers of MS. Should they find such a marker, spinal taps will reassume their importance.

*2 or more MRI lesions consistent with MS

note - MRI scans give detailed high resolution images of cross sections of the brain and to a lesser extent, the spinal cord. Multiple Sclerosis lesions show up as paler areas on those images.

From an MRI, the neurologist can not only identify that there have been probable demyelination events but can also see where those lesions are and use them to explain both present and potential signs and symptoms.

*Insidious neurological progression suggestive of MS
(primary progressive MS 2 )

- evoked potential tests :

*postive VEP (visual evoked potential); 85-90% of people with definite MS and 58% of people with probable MS will have abnormal VEP test results

*positive BAER (brainstem auditory evoked response);67% of people with definite MS and 41% of people with probable MS will have abnormal BAER test result

*positve SEEP (somatosensory evoked potential); 77% of people with definite MS and 67% of people with probable MS will have abnormal SSEP test result

i hope this is clear enough. and hence the importance of a spinal tap in the differential diagnosis for Lyme disease (regardless of low serum capture of borrelia in CSF).

info taken from http://www.mult-sclerosis.org/diagnosingms.html

Furthermore, skeptics are to be appreciated, especially in lyme. And in unproven alternative treatments. I have gotten weary of being the only fly in skykings rife ointment and would like to have company once in a while!

It seems like MS probably has more than one cause, and is sometimes misdiagnosed as Lyme. So is chronic fatigue, fibromyalgia, ALS, and a number of other things which, IMO, are probably caused by more than one agent and probably are infectious diseases (not contagious necessarily, just infectious). Repeating that this is just my opinion.

When the experts are flummoxed, the amateurs get to speculate. I just made that rule up.

quote:

---

Originally posted by lou:
Zip was run off here once before by someone who mistook him for a troll. I am personally glad he returned since he has posted lots of useful info and isn't a troll at all.

I guess everyone is remembering the Brorson paper that found cystic forms in all of a small number of Scandanavian MS patients?

---

Well, I don't think zip is troll either.

On the other hand, do we know how zip looks? (absolutely no insults intended)

And I agree with the important role of sceptics. I often find myself in this role, though zip seems to take the cake...not that there's anything wront with that.

Here's the Brorson paper you referred to as well as a fresh of the press paper by Fritzsche:

O.Brorson et al,
"Association between multiple sclerosis and cystic structures in cerebrospinal fluid.",
Infection, 2001, Dec, 29(6), 315-319.

Abstract - BACKGROUND: The aim of the study was to search for infectious agents in the cerebrospinal fluid (CSF) of patients with multiple sclerosis (MS). PATIENTS AND METHODS: CSF from ten patients with the diagnosis relapsing remitting MS and from five controls without MS were examined by transmission electron microscopy (TEM), dark field microscopy (DF), interference contrast microscopy (ICM) and UV-microscopic examination of acridine orange staining (AO). All CSF samples from patients and controls were cultured. RESULTS: Cystic structures were observed in CSF of all ten patients by AO and TEM. DF revealed eight cyst-positive patients out of nine. One of five control persons had such structures in the CSF; this person had suffered from erythema migrans. Spirochete or rod-like structures emerged after culturing two of the MS patient CSF samples and these structures could be propagated. CONCLUSION: A significant association of CSF cysts and MS was identified in this small study among residents in a coastal area of southern Norway. The cysts could be of spirochetal origin. Our study may encourage other researchers to study larger patient groups.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11787831

M.Fritzsche,
"Chronic Lyme borreliosis at the root of multiple sclerosis - is a cure with antibiotics attainable?",
Medical Hypotheses, 2005, 64(3), 438-448.

Abstract - Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15617845

Does anyone have a copy of Fritzsche's paper? Is it available for free somewhere?