Went to a rhematologist today just to make my pulmonologist happy just so that maybe she'd use what little influence she has to get me in with the LLMD I'm wanting to see.

Turns out...this rheumie is of the opinion that "chronic Lyme" doesn't exist, blah blah blah, I am in the worst 2% case of fibromyalgia, blah blah blah...

and the FEW medical people that say "chronic
Lyme" are bordering on the CRIMINAL....yada yada...where's the research?... Alan Steere says: 'yaba daba do...' (DR Wiseass wants to know: Who made Alan Steere the big Lyme know it all? Alan Steere himself, maybe?)

Rheumie goes on to say: "If 'chronic Lyme' were real - people from Harvard would have the research & it would be proven that a month's worth of antibiotics would cure it, blah blah blah..anyone who says 'chronic Lyme' is like a CULT member...."

Sometimes I am amazed at my ability to sit still when the Lyme RAGE is..well, RAGING inside & I want to crawl over the duck's desk & choke him. But I didn't. It was a miracle.

After the "cult" comment though, I finally forced an insincere smile on my face & asked that he speak to me with respect with regards to Lyme disease & not attack what I have come to understand about Lyme disease "as being equivalent with a cult"

I assured him that I was not emotionally vested in maintaining a disagnosis of Lyme, that all I really cared about was getting better; did give a @#$% what we label it; YET I didn't care how many medical professionals I had to p#ss off in order to find the one that could pull that stunt (of "fixing" me) off!

I let him know that, although I don't have an overly large piece of paper indicating that I had been to medical school, that by no means indicated that I can't read & understand things of a medical nature - altho I may have a difficult time reiterating it from time to time.

I let him know that I was, in FACT, intelligent enough to attend medical school but that my body just wasn't currently up to the challenge, and for him to conclude that what I have researched is "bogus" simply because it's not what he's read is insulting.

Finally I suggested that we would have to agree to disagree & let's just get on with all the testing crap.

He's gonna run another WB & and ELISA (among all the usual rheumie stuff)..but he's running the WB & ELISA from "reliable" lab - not like the lab I have my positive tests from (directly implying they were "paid off" to get positive results).

I swear - that man doesn't know how lucky he is to still have his gonads still attached to his body.

So HERE'S WHAT I NEED FROM YOU SMARTIES...so when I return in 3 weeks to hear about all the other tests that are surprisingly "OK" - upon my exit I can shove some RESEARCH (Harvard based or otherwise) IN HIS FACE & KINDLY SUGGEST HE SHOVE IT UP HIS.....

I need lists of links to RESEARCH studies that contradict whatever it is that Steere has been preaching all these years.

YES, I'm smart enough to find the @#$% links if I had time. BUT why re-invent the wheel.

I'm so tired & I have some academic competitions coming up (that I'm coaching) -so I need help.

I want links & maybe some of you to spell it out in layman's terms because I probably lied about that whole "smart enough to go to medical school" comment- but that's my business not his.

HELP! I've got 3 weeks to amass some info before my next and LAST vist to this duck. And I'm sure this info will come in handy cause apparently Texas has lots of ducks...apparently we can't get Lyme here in Texas...but WE GOT THE DUCKS!!!!!!

Supply links here or email me directly:
[email protected]

Thanks.

I know there is a ton of info & links out on the great wide web...

I need info I can share with ALL the skeptical docs that will give some VALIDITY to the "chronic" Lyme diagnosis.

I know I'm wordy & it's tiresome to read my @#$%, but I really need help.

I'm fighting like mad not to go mad or stay mad in each & every sense of the word.

Please.

"He's gonna run another WB & and ELISA (among all the usual rheumie stuff)..but he's running the WB & ELISA from "reliable" lab - not like the lab I have my positive tests from (directly implying they were "paid off" to get positive results)."

AAAAAARRRRRGGGGH!
This is such a bone of contention for me.
The doctors here refuse to look at results from MDL or Igenex.

They even go so far as to say they are not "approved" labs. They insist on using Imugen labs ONLY. It is owned by a former Steere pal which I think is a huge conflict of interest.

Imugen is okay as long as you have an early case of lyme. But if you have had it for a long time.....good luck! This lab and many others don't even look for bands 31, 34 or 38. These are the bands that are very specific to lyme in late stage. So...if you don't even test them or look for them....then how can you test positive for chronic lyme? What's up, Doc????

IMO, you are wasting your time trying to educate your rheumie friend. They don't want to believe anything which might have been written by a member of our "cult"!
Our LLMD's are referred to as the "Lyme Mafia"!

Good for you for speaking right up to this twerp. May a tick crawl into his undies and make him get sick as a dog.....with fibromyalgia?

LDA has a new book out which includes all the studies done to date which show that Bb does survive after 4 weeks of treatment.
Might be worth $8 to buy it for him...but my guess is it would end up in his fireplace.

nan

I just read a paper by Steere & colleagues today where his work shows chronic infection. Its in testubes, but hey, all you gotta do is spin it for the rheumy, right?

Since he loves Steere, we'll give 'em Steere. I remember reading a few other papers way back when from his lab about such issues too - I'll try to pull 'em up for you, k?

GO NADS!!! (When I was in college, played for a softball team called "NADS" and guess what our cheer was?)

~DM

They are no longer telling me that my daugher doesn't have lyme disease because they can't figure anything else out and I have given all of them info..Last time they had 5 Doc's stop by the ER to just see her.

Use the medical terms when possible, and I had an advantage, two great lyme doc's that have assisted..Dr. V S talks to their Drs and they speak the same lingo..

But we have been there 5 times in the past 2 years..

The only negative was when the admitting nurse read that the Eliza from a previous visit was negative..I asked her if she knew the validity of the test and then proceeded to give her %'s and explained why there are seronegative tests..Before we left she was saying OMG as she kept reading my material and the story about the mom that refused to give up on her daughter..She switched to then saying how many kids have we probably seen with this?

Thanks for all the replies so far - and I look forward to any more.

Here's the deal - this rheumy ain't my biggest concern. He's just an EXAMPLE of one of the biggest problems at large & that is of
#1 chronic lyme being legitimized & taken seriously...not to even get into the whole
#2 controvery, which IMO is about what treatment for how long.

I'm sure there are many more controversies - but these 2 major ones right here are about all I can take today.

After I catch my breath - I really want to focus on advocacy and that means I need to have all the essential info.

My advocacy, of course, is gonna have to start at home cause even my PCP, altho not disagreeing with me yet about the chronic lyme (God bless her!) doesn't want me to see the only anti-biotic giving LLMD in town - most likely because he just stays in trouble & is persecuted by his peers.

So = if I can't get in to see him...then I'm gonna have to educate her. She seems humble enough to listen & learn - which is why I've stuck around with her.

I honestly don't care about educating rheumy for MY personal benefit - cause I'm just going back for test results & to drop off whatever info I can, so that if some other Lymie soul happens his way (and they're probably already just literally surrounding him & he's too stupid to know it) - then maybe, God will come to him in his dreams & suggest he pull his arrogant head out of his hind quarters and listen up!

Meanwhile, I have other docs NOW (& I'll bet in the future) that I have to battle.

Knowledge is power, and I felt a little weak today. Didn't like it.

Of course, some of the psychiatric symptoms of this disease is inappropriate laughter, hysteria, manic-depressive behavior, blah blah

Lucky for me - I seem to have them. And altho I don't want them - I'll be doing my best to use them to my advantage because I have no other choice.

And you're right dura - I think we need to come up with some sassy "in your face" kind of shirt that we can wear to any necessary duck appts, or the ER....

Keep that info coming. Opinions, too.

God bless you...my fellow "members"

Thanks for caution, but older Steere papers specifically show evidence of spirochetes/infection refractory to treatment. While he currently is most interested in the immune reponse these days, his own data from pre-spin times suggests that ongoing infection is present in at least some proportion of the cases.

Here are just a few tidbits: http://www.annals.org/cgi/content/full/121/8/560
This article looks at how people with Lyme disease remain despite "standard" treatment relative to controls. One of the people died and they found spirochetes in his brain at autopsy - this despite being the most Abx treated of the bunch...

http://content.nejm.org/cgi/content/abstract/330/4/229
These guys found that 37% of folks treated with IV or orals for greater than one month had spirochetes by PCR in their joint fluid.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt= Abstract&list_uids=3357244
This one talks about a woman who died from respiratory problems "refractory to treatment" which included antibiotics.

Wiseass:
As for Allen Steere being head honcho of Lyme Disease, he was the dude who identified a rash (pun intended) of arthritis in kids and adults along the CT coastline back in the '70's. Named it Lyme (after the CT town) arthritis (after the aspect that he was interested in as a rheum-y). Book called "the widening circle" by polly murray details some of this time period in the discovery of Lyme arthritis.

Little did he know that it would cause all these other non-arthritis symptoms too. I think his interest/spin into the immune aspects is more because that is an area of expertise more rheumy related (him) whereas infection would slide it over to the infectious disease guys (not him). But anyway, that's how he got to be "the big cheese."

Stomp on his foot, then kick him in the shin, a knee to the groin, then when doubled over, give him a punch to the sternum, and a haymaker across his forehead, then spin him around about 25 times.

Then inform him that "THIS IS HOW I FEEL ALL THE TIME" !

I'm scheduled to see and LLMD for my Lyme, but want to highlight some information for the GP as I know she is looking to the "standard" medical books for her information.

I figure I can only lead a horse to water....

Here are a couple I was think of besides the basic ones.

quote:

---

Originally posted by NP40:
How to educate a duck ?

Stomp on his foot, then kick him in the shin, a knee to the groin, then when doubled over, give him a punch to the sternum, and a haymaker across his forehead, then spin him around about 25 times.

Then inform him that "THIS IS HOW I FEEL ALL THE TIME" !

Then inform him THAT THE PAIN IS ALL IN HIS HEAD AND HE SHOULD SEEK A GOOD SHRINK !

---

That is classic! Brilliant! Bravo. (In front of the computer laughing and applauding). That was hilarious.

~~~~~~~~~~~
LymeEd:

I hear what you are saying about the doc potentially discounting the data contained in Steere's papers. In that case, they are simply doing what they are accusing us of doing - disregarding some of the available data. As you said, absolutely nothing would satisfy such a person.

However, the degree to which this doc has even a slight ability to read and comprehend a research paper, and at the same time respects the research of Steere in particular, these references do offer the information that infection can be ongoing in a subset of people infected with Lyme.

As for PCR tests, nothing can be done about the "dead antigen" hypothesis. In fact, every test ever devised has some critical flaw and they could sit around and discount each and every one. That argument in and of itself is the only possible reply.

If they reject Steere data (person they seem to respect) and that PCR is valid, then, oh well. The college try that WiseAss wants to go for has been executed and failed. I think your scenario is certainly plausible (and even probable), I'm just suggesting some ammo for an attempt that WiseAss is choosing to make, you know?

If the only idiot I end up educating in the end is me...then so be it.

I think I've learned more about Lyme in the last couple months (what little of it that is) than of all the other kinds of fancy book learnin'I got me during the 7 years it took me to get that useless 4 year bachelor's degree.

Ya'll keep "debating" the fine points about this: I'm reading...I'll eventually get it.

We're all on the same side here...even if we perceive things a little differently or express ourselves differently.

I'm probably the last person who hads Lyme to find this out but I don't know so I have to ask. What does DUCK mean in this context? I'm sure it's not good.

Good thing you let off the very understandable steam here rather than committing mayhem. I would have like to in your situation. I've heard a lot of the other stuff but the cult part would have set me off like a rocket!!

To your health!

NP.. I just love your post!!

Dr. Wiseass, best of luck in teaching a rhematologist!!!

Been there done that with my son, Dominic, walked out "against medical advice" if we would of took his advice no telling where Dominic would be today.

Know what I am starting to think.. we need a jar of ticks... lots of them.

Next time a Duck says there is no lyme, open the jar.. lets see if they get worried?

Why worry there is no lyme??? right???

Starr

quote:

---

Originally posted by lmasch:
What does DUCK mean in this context? I'm sure it's not good.

---

As in QUACK, QUACK!!

A Duck in this context: "Quack, quack, quack".

Star --

A Jar of Ticks...LOVE IT! Sounds like a great summer collection I could start...or perhaps some of you on the East coast could just Fed-EX me some now?

Since today's duck was convinced that "we don't get Lyme in Tx" - I'd love to go to my next appt with a jar of East coast ticks!

WOW! I'm brainstorming now!

Kind of like that scene in Erin Brokovich when they offered the team of opposing lawyers all that special chromium tainted water "brought in for them special...from Hinkle." (or whatever the name of the town was)

I'd loved to see a duck squirm. Thanks for the fantasy.

Hey -- how about a jar of East Coast ticks as a Lyme fundraiser? Kind of a creepy idea - but I"m just fatigued enough to like it.

If the duck in question is responsive to logic (and they usually aren't) you can point out that there are a ton of well-documented ways for Bb to evade both antibiotics and the immune system. By evading abx they persist, and by evading the IS they avoid detection through antibody tests (vs culture, which is seldom sensitive enough to catch active infection even pre-treatment, and surely can't be used to 'prove' that infection has resolved).

I'm not with it enough at the moment to wade through the kazillion or so pub med abstracts I've collected, but will try over next few days to gather citations and post the links here.

Here is a partial list, though, of persistence mechanisms:

For surviving abx:

1) Intracellular localization
2) Localization in poorly perfused parts of the body the abx don't get too
3) Reversion to cyst/l-form with thick, not very permeable membrane
4) Biofilm spheres (photos on this are ghastly and pack an emotional punch)
5) Acquired resistance to specific antibiotics in specific strains
6) Physician ignorance re: MICs (Minimum inhibitory concentrations) of specific antibiotic for Bb.

For surviving immune system:

1) Bb changes surface antigen presentation in response to changes in environment
2) Bb outer surface proteins force lopsided Th1 response that shortchanges development of effective antibodies
3) Bb attacks and kills B lymphocytes
4) See items listed for surviving abx, first three are also relevant for evading immune system.

When you consider how much trouble they have detecting Bb with current tests BEFORE treatment, when Bb have not yet had to adapt to more hostile environment created by ABX, it's perfectly obvious to any rational person that we aren't going to have the means to confirm that Bb has been eradicated AFTER treatment.

Steere has definitely gotten worse with time. I saw something recent from him where the circularity of his reasoning was just stunning. He starts out with this very restrictive definition of Lyme, that excludes many documented cases, then proceeds to show that 'Lyme', defined by these worthless criteria, can be made to disappear. But all he's really showing is that lab tests are as insensitive after treatment as before, while the bugs have gotten much more evasive.

None of this is any help with an intransigent duck, and let's face it, there are legions of them.

Another patient friend and I have decided to research syphillis, an older, better-studied and accepted chronic spirochetal disease with many striking similarities to Lyme. Perhaps with some borderline ducks it would help to talk to them about that.

I find Sherr's piece about being a doctor with Lyme very powerful, and think collecting stories about doctors / researchers who are also patients might also help with borderline ducks.

I'm glad you've gotten some good responses, hope you get more. This is a problem we all face all the time, and it's great to have folks addressing it directly.

Thanks man! Good info that you've given so far & I'm sure I'll understand more of it after I've had that forbidden cup of coffee.

PLEASE keep us posted on your research & its implications. For some of us (me), you're gonna have to regurgitate it out in the smaller words...but I'll bet you can do it.

As for finding docs with Lyme - great idea. Know any? Email me so I can research them - see if they have websites, any published articles, call them up & cry on their voice mail, etc.

Thanks again - & looking forward to more of the info you've amassed. (Is "amassed" a word? It's getting foggy in here...)

I feel truely blessed to have found this site!

So, I Hope I'm still in there somewhere, if the intellegence of the forum is any indication of what I can return to, it's very hopeful!

Someone posted a question about docs with lyme a while back. Here's the link: http://flash.lymenet.org/ubb/Forum1/HTML/031689.html

Also Dr.M co-authored a paper on chronic lyme. I did a google but couldn't find it. I did see an article that talked about it- just not the actual article.

GREAT link - with other links! Thanks!

For anyone interested - check out Cheryl's link from there.

I wish I had more time to read & study today.

BUT must actually do something non-Lyme related.

"IS that even possible DR Wiseass wonders?"

Ah, my body may be performing the expected tasks on my "to do" list...but I'm sure my mind will be elsewhere. It always is.

Matter of fact - has anyone actually SEEN my mind? I think I lost it...somewhere around a duck pond. Reward offered. (Not much, of course...)

I don't have any links saved (how dumb is that?), but perhaps going through Treepatrol's Newbie links may yield something useful.

I'm with NP40 though - maybe you need to speak to Dr. Flintstone in a language he can understand (bring bat next time)

Also, if he brings up that labs are paid to come up with the results certain doctors/patients want, you could equally address the same question to him: "Are you using labs which consistently throw up negative results??".....

In any case, sounds like it's going to be a stressful next visit. Hope those other clear-headed folks on here come up with good stuff for you because as I said, I haven't got any links, and I feel too foggy to research and take much in at the moment.

I'm going for a forbidden caffeine fix too now - sugar free hot chocolate.

start them out with stick figure's and go from there.............gary

quote:

---

Originally posted by lmasch:
How about the new ILADS guidelines for treatment from an impressive bunch of folks. [/URL]

---

quote:

---

Originally posted by Lyma Bean:
...Good luck in your quest to educate. I've more or less given up trying. When a dermatologist can't recognize a bull's eye rash, it pretty much sums up the knowledge of lyme by Texas ducks

---

Don't feel bad. The last time I was bitten, I decided to go to a clinic near where I worked to see what this particular bite was that I had. My LLMD was an hour away and I figured that since I was in NJ (a highly endemic state) they should be able to tell me if this was an erythema migrans.

Boy, was I wrong! Those idiots at that clinic couldn't tell me squat about that bite. A clinic in NJ back in 1995 could not verify for me that this expanding rash with a ring around it and clear in the center was caused by a Lyme Disease-carrying tick! LD had already been running rampant in NJ for years and as far as I was concerned there was no excuse for their ignorance.

If you're trying to convince a camp A duck, I don't think you have a chance unless it's someone that you can spend oceans of time with and who can warm up to the truth about Lyme.

If you're trying to convince your current PCP, then that's another matter.

From what you're telling me, she seems open minded and unpoisened.

You'll quickly find out which camp she belongs to. I'm hoping camp B.

Doctors in camp A do not have the time, let alone the motivation, nor the political inclination, to parse through your links and be objective in their interpretation of the information.

There's only one to sway doctors in camp A into our direction.

And that is if the CDC post new and proper guidelines for the diagnosis and treatment of Lyme, stress the importance of treating coinfections first and irradicating any other deficiencies in the patient even before that (e.g., Mag, heavy metals, ...)

Government, they DO listen to....I think.

You know, most people have the tendency to select a camp, and stick with it for some perverse reason.

It takes some major event, or true openmindedness, for them to seriously and objectively consider the other side.

If your gutt tells you that your PCP is potentially a camp B member, go for it.

If not, drop it.

JMHO.

Michael

I certainly understand what you're saying, as I'm generally a very stubborn person too - which I suppose makes me suitable for the medical profession...perhaps I should get well and try to go to medical school.
(Where I'm sure I'd be promptly kicked out for being such a smart@$$ all the time.)

In the meantime - while trying to save my own life, I thought I'd scatter a few "seeds" with regard to advocating for chronic Lyme et al...

It's not my intent or responsibility to waste what little energy I have arguing with a duck ... especially when I don't intend to return to their so-called "care".

It is my intent to #1 educate ME to protect myself from ducks....and to #2 hopefully educate my PCP enough in hopes she'd pick up the telephone & refer me to the only LLMD in my area.

(Had I not read about steroids being a 'no-no' for lymies - my PCP would have Rxed some a couple of months ago...!!) Knowledge is power...and sometimes life.

As far as the other docs - I have no problem copying off a few bits of info about Lyme & dropping with them on my way out the door. What they choose to do with it will be up to them, and their own conscious.

Meanwhile, as soon as I feel I can write a coherent letter (and yes, WITHOUT ANY @#$%ing PROFANITY in it for all of you who get freaked out by that...) ...I'm planning on spending quite a bit of time making attempts at contacting the media - alerting them to this public health crisis that is not being addressed appropriately. (And yes, I'm sure you guys have done it before. Don't care. It's always time to do it again.)

And before I say anything else - allow me to say that I know some of you get all bent out of shape about "words". Please do yourself a favor and get over it. If I'm breaking some serious rules here on Lymenet, I will be chastized & act accordingly.

Just understand that I go thru phases of trying to be a "good girl" and then I get bashed by some duck, or feel like I'm about to drop dead and this is my place to vent. If you don't like me - do yourself a favor and ignore me, and just thank God I'm not in your family...and know I'll probably be doing the same.

Meanwhile, also know that SOMEONE needs to be getting some attention for this disease...and I don't care who I have to shock, embarass, or p*ss off to do it.

As soon as a decent popular journalist gets ahold of this story...then the public's demand for answers will be greater...which in turn leads to appealing to the government to pull their thumbs out of their @$$es and do SOMETHING!

I agree - a Camp A duck usually ain't gonna listen to little ol' DR Wiseass - or little ol' anybody from Texas or any other place, especially if the duck has already made up their mind.

I was EXTREMELY agitated & frustrated when I started this thread...but along the way I started understanding that I can't afford to waste time educating those that don't want to be educated. But I DO want to be educated. It doesn't really seem to be an option for me now.

I believe there ARE OTHER people out there that DO want to be educated too = especially when it comes to their own health & the health of their loved ones.

That's why IMO I need to learn what I can about the controversies so I can make point/counterpoints in my attempt to make contact with the media.

People will listen to the media. The government will eventually listen to the people.

It is just my intention to plant seeds...and wait for ANYTHING to grow.

Thanks to all who participated in this thread and have given me lots to read.

Feel free to continue sending me links & ideas my way. Email me: [email protected]

Blessings,