This is topic ever wonder what we will do when this thing REALLY kicks in???????? in forum General Support at LymeNet Flash.


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Posted by LisaK (Member # 41384) on :
 
so I know I am not always a "glass is half full" kinda gal, but ....

feeling especially ill the last couple of days has reawakened a giant in me.

what is going to happen when ALL THE PEOPLE in the land get this? get diagnosed with tick disease ? and no one can find a dr to help. when everyone will be going crazy with pain, or mental symptoms, and the sheer horror of this entire thing and the potnetial it has to destroy everything we know??????????????????????????????????


<breathing deep>

why can't this all just stop!!!!!
this madness end!!!

I am going to take valerian now...lots of it
 
Posted by lpkayak (Member # 5230) on :
 
The rich ones will get help. The non-brain fogged will figure out buhner. The rest of us will suffer til we die

And drug and health insurance companies will live happily ever after
 
Posted by lpkayak (Member # 5230) on :
 
Ps. Im in a mood.
 
Posted by Lymetoo (Member # 743) on :
 
I think so many are already suffering from it and it's just been labeled as some other disease.
 
Posted by lpkayak (Member # 5230) on :
 
I agree. Often its the all in your head disease
 
Posted by Robin123 (Member # 9197) on :
 
I don't think everyone's going to get it. A lot are going to escape this fate. Still, we do what we do for everyone's sake.
 
Posted by beaches (Member # 38251) on :
 
Personally, I can't worry about that "global" stuff. I have to focus on what I can control and who I need to take care of.
 
Posted by LisaK (Member # 41384) on :
 
I think global hysteria might ensue. just sayin.

like everyone getting super aggressive and killing for it. not knowing why. all that. killing over nonsense. going nuts. feeling helpless. and to even mention the lack of meds there will probable be.

not looking forward to the future even though I am trying to remain positive about my own story and how it will play out.
 
Posted by MADDOG (Member # 18) on :
 
Fibromyalgia

Parkinsons

Cronic fatigue

MS

The list goes on and on what Lyme is called.

So it is carved up in smaller pieces!!!

MADDOG
 
Posted by duncan (Member # 46242) on :
 
Chronic fatigue is a symptom. It is not a disease.

The disease is Chronic Fatigue Syndrome. It is characterized a by cluster of debilitating symptoms that are almost identical to those caused by Borrelia.

Actually, the most commonly accepted acronym for CFS these days is ME/CFS, short for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

As everyone here knows about neuroborreliosis, Lyme patients too can be diagnosed with encephalomyelitis - although encephalopathy is more commonly diagnosed. We also have our share of myalgias.
 
Posted by LisaK (Member # 41384) on :
 
if CFS is a disease why don't they let you get a handicap plate to use on your car if you have it?
 
Posted by duncan (Member # 46242) on :
 
Cool acid test. [Smile]
 
Posted by Marz (Member # 3446) on :
 
Maybe this will get their attention in the UK.

http://www.dailymail.co.uk/news/article-3244080/SEBASTIAN-SHAKESPEARE-Billionaire-s-family-struck-Lyme-disease-Phones-4u-founder-admits-completely-devastating-diagnosis.html
 
Posted by beaches (Member # 38251) on :
 
I really do believe that there is a subset of LD pts who have ME/CFS as a primary dx/cluster of sx.

And Lisa, what do you mean that "they" don't let you get a handicapped plate? Who are "they?" In my town, the doc fills out a form.

My doc told me "they" might not "accept" my dx. I was shocked. And, who the hell are "they???" Town employees with easy jobs and no medical background. And they're going to go up against me? Don't think so.
 
Posted by duncan (Member # 46242) on :
 
I agree, beaches. The lines criss-cross here and there, but that some Lyme patients have ME/CFS, and visa-versa, is just common sense.

Certainly one is not exclusive of the other

Where it gets interesting is trying to establish a relationship...Can Lyme lead to or trigger ME/CFS? Is ME/CFS unrecognized Borrelia? Does chronic Lyme equal the causative agent behind ME/CFS (e.g.,retrovirus?)plus Lyme?

A thing to keep in mind is that CFS is not chronic fatigue. CFS, or ME/CFS is a cluster of symptoms of which fatigue is just one - and often not the most significant. Many blame the CDC for mishandling that fiasco back around the same time as Lyme was being thrown under the bus...
 
Posted by LisaK (Member # 41384) on :
 
beaches, when I asked a dr for the plate because of CFS she said they dn't give the plates for that.

was she wrong??????? ugh I need that plate!
 
Posted by Madam Summerland (Member # 46894) on :
 
LisaK: I'm not Beach but I'll try to help.

It would depend on the extent of the patient's symptoms as far as I understand it. Did this doctor know your history or abilities well? I found the list (below the link after my babbling) on the DMV; You might want to check your specific state.

By the way, be sure it is in the doctor record that you requested one from your doctor. (I'd ask for a print-out of that doctor's visit). And also ask their specific reasons for not giving a placard (form or whatever you need). If they refuse without cause, then a fall (or other issue) happens where it could have been avoided if you had the placard, it's good to have it on record that you asked.

Sometimes just having it *on record* gets them to act a bit less ... jerky.

I have heard doctors SIGH and speak in a very dismissive tone about many patients unfortunately. If they don't respect you--keeping looking until you find one who does.

http://www.dmv.org/articles/what-qualifies-as-a-disability/

Quoting the above site:

Most states consider a driver disabled if they:

Don’t have full use of one or both arms.

Can’t walk a set number of feet without stopping to rest. Some states set this number as low as 50; others, as high as 200.

Can’t walk without using a cane, crutch, brace, prosthetic device, wheelchair, or the assistance of another person.

Have a Class III or Class IV cardiac condition, as set by the American Heart Association.

Must have portable oxygen to walk.

Have a visual acuity of 20/200 or less in the better eye with correcting lenses.

Have a visual acuity of 20/200 but with a limited field of vision in which the widest diameter of the visual field subtends an angle of 20 degrees or less.
 
Posted by LisaK (Member # 41384) on :
 
thank you madam! the thing is that I didn't ask the dr. I called the office and the nurse on the phone told me no. hmmmm

this does help seeing that list. some days I definitely fit into the need to take a break walking after 20 feet.

it was my GP office I called also and even though my CFS is on that record, they don't really know me. I should ask another dr that knows what I am giong through a bit more. right. makes sense.

actually, I think I may have asked about fibromyalgia. that , I think, is what they said no to. o brother. I realize that I did mess up. I will call my one dr today and ask. thanks
 
Posted by Madam Summerland (Member # 46894) on :
 
Very welcome!
 


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