Random Thoughts Thread LXX

by **drsmooth** » Mon Dec 12, 2011 18:58:36

Bucky wrote:by the way, my infectious disease doc (extremely highly regarded in his field) is much more forceful than I about this, particularly regarding chronic lyme. He basically spits on that diagnosis.

what's weird is that people would assume that by spitting on the Dx s/he's spitting on the patients, which she doesn't of course.

by **phatj** » Mon Dec 12, 2011 19:09:50

If fibromyalgia weren't real, would Pfizer have made Lyrica? Huh? Huh?

by **pacino** » Mon Dec 12, 2011 19:10:22

my mother has it. she can barely move without hurting.

by **pacino** » Mon Dec 12, 2011 19:11:43

by **Philly the Kid** » Mon Dec 12, 2011 19:17:05

Bucky wrote:by the way, my infectious disease doc (extremely highly regarded in his field) is much more forceful than I about this, particularly regarding chronic lyme. He basically spits on that diagnosis.

I don't care about any brand-name label. As long as you are not denying the pathology or that there is a real illness in play. BTW - the CDC does acknowledge CFIDS/ME and has a definition.

If you aren't up on the research, and most clinicians including auto-immune MDs are not - then you aren't really qualified to discuss much if you are going to make sweeping statements like "doesn't exist".

And yes, sweeping statements of the kind of you intimated reek of gross ignorance. This is an area I know a GREAT DEAL about. Just because your infectious disease doc doesn't know the research doesn't mean he's qualified to speak either. There are people from Dr. Montoya at Stanford Medical to Dr Peterson Incline village Dr Levy , Teitlebaum and I mentioned the two most important Dr. Paul Cheney and Dr. Kenny De Meileir --

I've been to auto-immune docs who had no idea how to even read labs I brought them or what they referenced.

You don't like the name "CFS" or the word syndrome. But the consistent component is that their is an auto-immune-inflammatory-state in the human in question.

There are 1000's of people afflicted. They do not all have the same exact pathology or present the same way, but there are commonalities and there are few tests that can kind of rule you in or out of a bucket. The RNASE-L panel I mentioned upthread to Mrs. Vox, differentiates a person from other things like RA and Lupus or even MS.

RedLabs also does an NK profile on the 6 types of NK cells. There are many tests out there that Quest and LabCorp do not perform and that garden variety docs or so-called specialists have no fluency with.

by **Houshphandzadeh** » Mon Dec 12, 2011 19:23:59

made a really poor choice of pickled veggies as one of my two sides

by **PrattRules** » Mon Dec 12, 2011 19:24:13

No more need for this chronic fatigue debate. I felt a little better today. BSG willed it maybe.

by **Philly the Kid** » Mon Dec 12, 2011 19:26:16

I got too jacked up on caffeine last night - woke up and never got back to sleep. Paying for it now...

by **PrattRules** » Mon Dec 12, 2011 19:56:56

The B1G Piece wrote:Pratt,

I went to pick up some beer at the Cresson Inn yesterday. Quite an experience, as the bartender was older than the city of Philadelphia. He couldn't find the beer I asked for (it was right in front of him and the other patrons broke were yelling at him as he tried to find the beer). He then had a hard time bagging the beer and said to me "I would never make it at an ACME." The patron immediately next to me says, "well, just go work at Shop Rite." I completely lost it...

Why was this addressed to me?

by **jamiethekiller** » Mon Dec 12, 2011 20:06:54

seems like a real dive. you're zone.

by **PrattRules** » Mon Dec 12, 2011 20:08:25

fair enough

by **The B1G Piece** » Mon Dec 12, 2011 21:33:33

PrattRules wrote:
The B1G Piece wrote:Pratt,

I went to pick up some beer at the Cresson Inn yesterday. Quite an experience, as the bartender was older than the city of Philadelphia. He couldn't find the beer I asked for (it was right in front of him and the other patrons broke were yelling at him as he tried to find the beer). He then had a hard time bagging the beer and said to me "I would never make it at an ACME." The patron immediately next to me says, "well, just go work at Shop Rite." I completely lost it...

Why was this addressed to me?

Didn't you want to spend Irene there...I forget?

by **MrsVox** » Mon Dec 12, 2011 21:52:01

Philly the Kid wrote:
MrsVox wrote:
PrattRules wrote:For the doctors out there:

Every day this week I've been tired. Both physically tired and sleepy. I lost interest in doing things and am unsure of what is wrong. I was diagnosed with rheumatoid arthritis about nine years ago but have been off medication for six years. Also, I just started a new job. I've been getting over eight hours of sleep a night, yet still find myself to be inattentive and drowsy. I feel as though it could be a few things, but maybe the doctors here will have more questions to help me pinpoint it. If I'm still overtired for the remainder of this week, I'll be going to the doctor.

To me, it could be an arthritis reoccurrence, depression, or sleep schedule change. If anybody has any other theories or suggestions, I'm all ears.

sleep apnea

You may have some form of chronic fatigue syndrome.
One way to find out - is to get the kit from RedLabs in Nevada for the RNASE-L panel. It's pricey but will very much identify you as in or out of that group.
Obviously, check your hormone (very difficult for women in their 30's 40's to get that sorted sometimes) and Thyroid of course, do a total Thyroid, T3 T4 Free T3 Reverse T3 etc...unfortunately, you may have Thyroid in the blood but not getting to the tissue...
The Rheumatoid Arthritis is a big clue -- that is an auto-immune issue and CFIDS is also --
Other tests you can check are you Vit D levels
Your CD57 marker for Lyme
Your Complement4 for system inflammation

If you want to mess around with supplements - you may try L-Carnitine Di-Ribose

Obvious stuff like anemia ...

This doesnt sound like mental though...

The two leading researchers clinicians on CFIDS are Dr Paul Chaney out of NC and Dr. Kenny De Meileir out of Belgium.

Few docs know anything about what I'm describing to you above including the tests...including auto-immune docs that DO know about RA.

Call RedLabs and ask them if there are ANY docs within a 100 mile radius of you that have ever worked with them.

Another thing you can try to test via a lab in New Jersey is your Nagalese level.

More obscure and controversial is the Marshal Protocol, Trevor Marshal PhD out of Australia. There are modified protocols of his...you need the Vit D profile to even begin to contemplate that.

Finally - if you do think you have a flavor of CFIDS, the latest new treatment considered safe but pricey is called GcMAF (maf = macrophage activating factor) -- get it from Holland about $100 EU a dose - if you need more info, PM me I can connect you to practices that know about this research, tests and protocols...

good luck...

do a full hormone panel -- might even do the 24 hour pee collection version of that...

I want to put up a Drudge siren every time we get a post like this.

by **PrattRules** » Mon Dec 12, 2011 21:53:46

The B1G Piece wrote:
PrattRules wrote:
The B1G Piece wrote:Pratt,

I went to pick up some beer at the Cresson Inn yesterday. Quite an experience, as the bartender was older than the city of Philadelphia. He couldn't find the beer I asked for (it was right in front of him and the other patrons broke were yelling at him as he tried to find the beer). He then had a hard time bagging the beer and said to me "I would never make it at an ACME." The patron immediately next to me says, "well, just go work at Shop Rite." I completely lost it...

Why was this addressed to me?

Didn't you want to spend Irene there...I forget?

Don't remember saying that, but maybe I did.

by **my cousin mose** » Mon Dec 12, 2011 22:26:35

The muppet chickens singing that cee lo fuck you is the best thing since sliced bread. Don't even curr that they play it every five mind on Disney channel

by **Woody** » Mon Dec 12, 2011 23:45:30

It's been so long, I had forgotten how amazing Angry German Kid was

I dare you to have enough stamina to watch the whole thing

by **Eem** » Mon Dec 12, 2011 23:49:13

Evening friends

by **jamiethekiller** » Tue Dec 13, 2011 00:02:00

Eem wrote:Evening friends

hey!

i'm headed to bed!

by **swishnicholson** » Tue Dec 13, 2011 00:04:07

Philly the Kid wrote:I don't care about any brand-name label. As long as you are not denying the pathology or that there is a real illness in play. BTW - the CDC does acknowledge CFIDS/ME and has a definition.

I shouldn't get into this but:

Yes, they define it, but they define it as something for which "The cause or causes ... have not been identified and no specific diagnostic tests are available.Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made." link

So, yes it has a name, but it's basically a long way of saying "of unknown origin" (as are the other syndromes mentioned above). And while I suppose it's of some comfort to have a name attached to one's malady, I can't think of anyone who wouldn't prefer to have a diagnosis of an actual, treatable disease with an established pathology and protocol for treatment. This isn't to minimize the suffering of those afflicted, which is certainly real, or to indicate they can get no relief, since some of the symptoms can be ameliorated. Unfortunately, this vagueness and lack of understanding about the syndrome does open up the field to unscrupulous or misguided people ready to offer "cures" to desperate people.

by **Grotewold** » Tue Dec 13, 2011 00:04:48

Janice Soprano besmirched epstein barr

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