Re: Substitutes for Lyme disease

July 5, 2012

I HATE those top two!

Not trying to offend anyone or make light of anyone having some chronic pain issues, but knowing sometimes how my colleagues choose to diagnose, I call fibromyalgia, chronic fatigue, (and I lump sometimes bipolar and PTSD in there) with what I call the "shut-them-up" diagnoses - wherein the patient is so frustrated, or so demanding, or both, that they get one of these diagnoses to shut them up, to put a name to something, and to try to get them to quit bugging the doc so much. And they can't with any certainty be diagnosed as there or not.

But as I always say and feel it's a two way street, as many of us patients are also too trusting, to eager to know "something", or have such a need to validate in our mind and to others why we put on weight and are not weighing at age 40 where we were on our 21 year-old wedding day, or why we're not mowing the lawn, or interested in sex, or aren't doing housework, or whatever. There is a tendency to want to know what's wrong, but also to HAVE something wrong - outside of some obvious things like lack of any real physical activity, eating anything we want, being unhappy in a spouse or friend, or family but not willing to ot too afriad to admit it - so we have reasons for what we percieve as our negative behavior outside the realm of personal responsibility (and it may really not be in our control either - like PA -as I don't think our habits made the adenoma or hyperplasia, but I would not say that isn't a

possiblity, as we on't know, but once we know we do have PA our choices ARE a factor for most of us in making it worse).

But allopathic medicine is not the only culprit....Kind of like the diagnosis of a subluxation with chiropractors who show you a supposed subluxation on an xray (does one listening to the chiro usually have any understanding how little room to sublux there is a spinal canal? ....there isn't is my point) and how you really can't "see" it on an xray - and chiros still show you the film, but when pressed will often acknowledge you "can't really see one as they are so subtle"....yet you get a look at some black and white picture as they point to some disc that looks like all the others AND you then get told 20 visits at $50 a visit will fix it (and yet patients tell me they prefer chiro because they practice "holistic healing" but then I ask how in the hell do they KNOW it takes 20 standard visits if he is treating everyone holistically and as individuals and so how would they know you get 10 and you over there get 20 ...when

really they all usually get the same amount as if it's standard practice - which would make it NOT holistic then...nor about the "individual"...sure they counsel you on diet, but that's also their schtick...and then they attempt to sell you a diet plan, food, herbal wieght remedies, or give you cortisol supplemements ).

AHH.....the "art" of medicine.

So when you get the fibro dx, many times it means your doc is patronizing you and has had enough of you and you're not his or her favorite patient anymore. . I don't know if this is always a mean conscious attempt, as good docs want to help their patient, even if it's for them to quit pestering them, so they fall back on or are too eager to apply the label od a supposed lifelong illness.

This is my opinion from watching who gets the diagnosis (almost completely 100% women) and how they finally "decide" that's what it is. But then again down the other alley there is the patient who goes home happy as many now have their reason and a forever diagnosis that they will fall back on when they are down, depressed, anxious, not interested in sex, the house is a mess, don't feel like going to the in-laws, yelled at their kids and feel guilty, don't exercise,...etc....."My fibro is acting up" ......because were just as ornery as the docs are and they told them is no real cure.

Sometimes it feels like such a game of cat and mouse we're all playing as we all know from experience waiting for our day to get the PA diagnosis. And it's so much about getting satisfaction from both parties. Yeah, that's pretty skeptical, but with those two leading the list you posted Val, I only get more skeptical seeing it.

From: Valarie <val@...>Subject: Substitutes for Lyme diseasehyperaldosteronism Date: Thursday, July 5, 2012, 12:03 PM

In a recent poll done by a Lyme friend, here are the multitudes of diseases people with which Lyme disease get diagnosed before getting a proper diagnosis, sometimes many, many years later. Only 15% were properly diagnosed early on. I've highlighted some of what I've seen on this PA list.

Initial diagnoses were psychosomatic (you're crazy (51.3%), fibromyalgia, chronic fatigue, one of the various forms of arthritis, MS, Lupus, heart disease, ALS, Parkinson's, cancer, autism, Alzheimer's. What showed up as "other" responses: erythromelalgia, Reynaud's syndrome, depression (lots of those), syphilis, rocky mountain spotted fever (which is at least tick borne and treated similarly), CIDP, vasculitis, mmn, a virus, gout, Non-24 hour circadian rhythm disorder, west Nile virus, syndrome, Sjogrens Disease, autoimmune hepatitis, celiac disease, anxiety (many of these), panic attacks,

anxiety (many of these), heavy metal toxicity, chlamydia, ME, Sports related injury (a few of these... makes me think, "really?!?") sarcoidosis, lichen planus, melkerssons rosenthal syndrome, chronic regional pain syndrome (multiple of these) depleted of vit. B12 and vit. D, innerstitial sytistus, migranes (lots of these), thyroid conditions, carpel tunnel, candida, female alopecia, PCOS (several of these) IBS, metabolic disorder, low hormones, dysfunctional pituitary hormone, multiple chemical sensitivity (environmental illness; I'm actually surprised there was only one of these), tremors, vertigo,

ADHD, chronic strep throat, chronic tension headache, chronic ear infection (OK, I know I'm one of those "obsessed with holistic medicine" people, but don't you think, on these last 3 someone should have been asking WHY they had all this stuff chronically?), high ANA count, Marfa's disease, urinary tract infection, transverse mellitus, Epstein Barr (aka Mono... multiple of these), vestibular neuritis, ocular convergence disorder, neurally mediated hypotension, autoimmune disorder, irritable bowel syndrome (lots of these) Hashimoto's thyroiditis, gastroparesis, adrenal fatigue (several) TMJ, Menieres disease, mastocytosis, eczema, early perimenopause (multiples of this one), narcolepsy, GERD, post-viral fatigue syndrome (multiples of this one), degenerative neurological disease, blood clots, seizures, restless leg syndrome, hypermobility syndrome (aka joint laxity),

hypothyroidism, cystic fibrosis, sinusitis, bipolar, TIA, insomnia, schizophrenia, endocrine failures, supraventricular tacchycardia, mid-life issues (gotta love that one-- what? The person bought a new sports car and took up with a 19 year old?), an unexplained heart condition, asthma, bursitis, rosacea, prolapsed mitral valve, food allergies, spastic colon, CMV, mixed connective tissue disease, chiari malformation, epilepsy, hydrocephalus, regional sympathetic dystrophy, primary lateral sclerosis, ovarian cysts, gallstones, insulin resistance, Plantar fasciitis, seasonal allergies, mineral imbalance, overexertion, 's disease, Ehlers Danlos Syndrome, andrenal

hyperplasia, psuedo tumor celbri (spelling?), mega colon, carpel tunnel, peripheral neuropathy, mild, left sixth cranial nerve palsy, orthostatic hypotension, amplified pain syndrome, Lumbar disc prolapse, and transverse myeliti.

http://lymevoices.blogspot.com/

Val

July 5, 2012

Need to correct spelling on Raynaud's and Sjorgen's and myelitis I think. No mention of PA at all? or hypokalemia.On Jul 5, 2012, at 10:03 AM, Valarie wrote: In a recent poll done by a Lyme friend, here are the multitudes of diseases people with which Lyme disease get diagnosed before getting a proper diagnosis, sometimes many, many years later. Only 15% were properly diagnosed early on. I've highlighted some of what I've seen on this PA list.Initial diagnoses were psychosomatic (you're crazy (51.3%), fibromyalgia, chronic fatigue, one of the various forms of arthritis, MS, Lupus, heart disease, ALS, Parkinson's, cancer, autism, Alzheimer's. What showed up as "other" responses: erythromelalgia, Reynaud's syndrome, depression (lots of those), syphilis, rocky mountain spotted fever (which is at least tick borne and treated similarly), CIDP, vasculitis, mmn, a virus, gout, Non-24 hour circadian rhythm disorder, west Nile virus, syndrome, Sjogrens Disease, autoimmune hepatitis, celiac disease, anxiety (many of these), panic attacks, anxiety (many of these), heavy metal toxicity, chlamydia, ME, Sports related injury (a few of these... makes me think, "really?!?") sarcoidosis, lichen planus, melkerssons rosenthal syndrome, chronic regional pain syndrome (multiple of these) depleted of vit. B12 and vit. D, innerstitial sytistus, migranes (lots of these), thyroid conditions, carpel tunnel, candida, female alopecia, PCOS (several of these) IBS, metabolic disorder, low hormones, dysfunctional pituitary hormone, multiple chemical sensitivity (environmental illness; I'm actually surprised there was only one of these), tremors, vertigo, ADHD, chronic strep throat, chronic tension headache, chronic ear infection (OK, I know I'm one of those "obsessed with holistic medicine" people, but don't you think, on these last 3 someone should have been asking WHY they had all this stuff chronically?), high ANA count, Marfa's disease, urinary tract infection, transverse mellitus, Epstein Barr (aka Mono... multiple of these), vestibular neuritis, ocular convergence disorder, neurally mediated hypotension, autoimmune disorder, irritable bowel syndrome (lots of these) Hashimoto's thyroiditis, gastroparesis, adrenal fatigue (several) TMJ, Menieres disease, mastocytosis, eczema, early perimenopause (multiples of this one), narcolepsy, GERD, post-viral fatigue syndrome (multiples of this one), degenerative neurological disease, blood clots, seizures, restless leg syndrome, hypermobility syndrome (aka joint laxity), hypothyroidism, cystic fibrosis, sinusitis, bipolar, TIA, insomnia, schizophrenia, endocrine failures, supraventricular tacchycardia, mid-life issues (gotta love that one-- what? The person bought a new sports car and took up with a 19 year old?), an unexplained heart condition, asthma, bursitis, rosacea, prolapsed mitral valve, food allergies, spastic colon, CMV, mixed connective tissue disease, chiari malformation, epilepsy, hydrocephalus, regional sympathetic dystrophy, primary lateral sclerosis, ovarian cysts, gallstones, insulin resistance, Plantar fasciitis, seasonal allergies, mineral imbalance, overexertion, 's disease, Ehlers Danlos Syndrome, andrenal hyperplasia, psuedo tumor celbri (spelling?), mega colon, carpel tunnel, peripheral neuropathy, mild, left sixth cranial nerve palsy, orthostatic hypotension, amplified pain syndrome, Lumbar disc prolapse, and transverse myeliti. http://lymevoices.blogspot.com/ Val

July 5, 2012

Worth noting is how many of those I was " diagnosed " with before my PA was

correctly diagnosed: fibromyalgia, chronic fatigue, anxiety, depression, tested

extensively for MS. I think a lot of us here have similar stories.

>

> In a recent poll done by a Lyme friend, here are the multitudes of diseases

> people with which Lyme disease get diagnosed before getting a proper

> diagnosis, sometimes many, many years later. Only 15% were properly

> diagnosed early on. I've highlighted some of what I've seen on this PA

> list.

>

> Initial diagnoses were psychosomatic (you're crazy (51.3%), fibromyalgia,

> chronic fatigue, one of the various forms of arthritis, MS, Lupus, heart

> disease, ALS, Parkinson's, cancer, autism, Alzheimer's. What showed up as

> " other " responses: erythromelalgia, Reynaud's syndrome, depression (lots of

> those), syphilis, rocky mountain spotted fever (which is at least tick borne

> and treated similarly), CIDP, vasculitis, mmn, a virus, gout, Non-24 hour

> circadian rhythm disorder, west Nile virus, syndrome, Sjogrens

> Disease, autoimmune hepatitis, celiac disease, anxiety (many of these),

> panic attacks, anxiety (many of these), heavy metal toxicity, chlamydia, ME,

> Sports related injury (a few of these... makes me think, " really?!? " )

> sarcoidosis, lichen planus, melkerssons rosenthal syndrome, chronic regional

> pain syndrome (multiple of these) depleted of vit. B12 and vit. D,

> innerstitial sytistus, migranes (lots of these), thyroid conditions, carpel

> tunnel, candida, female alopecia, PCOS (several of these) IBS, metabolic

> disorder, low hormones, dysfunctional pituitary hormone, multiple chemical

> sensitivity (environmental illness; I'm actually surprised there was only

> one of these), tremors, vertigo, ADHD, chronic strep throat, chronic tension

> headache, chronic ear infection (OK, I know I'm one of those " obsessed with

> holistic medicine " people, but don't you think, on these last 3 someone

> should have been asking WHY they had all this stuff chronically?), high ANA

> count, Marfa's disease, urinary tract infection, transverse mellitus,

> Epstein Barr (aka Mono... multiple of these), vestibular neuritis, ocular

> convergence disorder, neurally mediated hypotension, autoimmune disorder,

> irritable bowel syndrome (lots of these) Hashimoto's thyroiditis,

> gastroparesis, adrenal fatigue (several) TMJ, Menieres disease,

> mastocytosis, eczema, early perimenopause (multiples of this one),

> narcolepsy, GERD, post-viral fatigue syndrome (multiples of this one),

> degenerative neurological disease, blood clots, seizures, restless leg

> syndrome, hypermobility syndrome (aka joint laxity), hypothyroidism, cystic

> fibrosis, sinusitis, bipolar, TIA, insomnia, schizophrenia, endocrine

> failures, supraventricular tacchycardia, mid-life issues (gotta love that

> one-- what? The person bought a new sports car and took up with a 19 year

> old?), an unexplained heart condition, asthma, bursitis, rosacea, prolapsed

> mitral valve, food allergies, spastic colon, CMV, mixed connective tissue

> disease, chiari malformation, epilepsy, hydrocephalus, regional sympathetic

> dystrophy, primary lateral sclerosis, ovarian cysts, gallstones, insulin

> resistance, Plantar fasciitis, seasonal allergies, mineral imbalance,

> overexertion, 's disease, Ehlers Danlos Syndrome, andrenal

> hyperplasia, psuedo tumor celbri (spelling?), mega colon, carpel tunnel,

> peripheral neuropathy, mild, left sixth cranial nerve palsy, orthostatic

> hypotension, amplified pain syndrome, Lumbar disc prolapse, and transverse

> myeliti.

>

> http://lymevoices.blogspot.com/

>

> Val

>

July 5, 2012

And the drs don't listen to the story or ask the correct questions AND the labs. And jump to the "in" Dx May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 5, 2012, at 13:19, msmith_1928 <janeray1940@...> wrote:

Worth noting is how many of those I was "diagnosed" with before my PA was correctly diagnosed: fibromyalgia, chronic fatigue, anxiety, depression, tested extensively for MS. I think a lot of us here have similar stories.

>