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Gry could use your thoughts, prayers, meditations, or what ever you have to offer
Have an appointment for 10 am tomorrow. Got an appointment notification from Olive View in the
mail today. It was not with the pulmonary clinic, nor with oncology.
Three weeks ago, while the individual I was dealing with was maintaining the illusion that they
were going to provide me with the referrals I requested with the pulmonary clinic and oncology,
she took it upon herself to order a CT scan w/ contrast.
The comment she made to me as she did so, was that the pulmonary clinic would want it
anyhow.
Am so disgusted. In the past several months, I have had enough procedures and testing done, so that when it is printed out, it spills onto a second sheet of paper.
When it comes to treatment there is a single item listed; 2000 ml of lactated ringers.
The outcome for treatment of stand alone MAC delivers a 65 % rate of success
with the standard antibiotic protocol. Can be improved by 10% with the addition of
one addition antibiotic taken for 4 months at the onset of treatment.
Dr I spoke with at the health dept said the normal route for treatment would be through the
pulmonary clinic.
Treatment would be the standard antibiotic combination, add one more for the extra 10%
enhancement. Check progress at 4 months with chest xray, drop one antibiotic and
continue with the rest of the antibiotics.
Pretty straightforward.
Once I make it past the gate tender.
Complicating factor, is the cancer and MAC are combined.
Will take a picture of the xray tomorrow.
Two have been taken, one at Olive View,
when I went to the ER, and a second one
by the Health dept 3 weeks later.
Looking at the two side by side
and seeing the difference that 3 weeks made, gives me all kinds of warm fuzzy feelings
about the gatekeeper that has burnt up the past 3 weeks.
A nice public health nurse, in an effort to pick up my spirits while they thought
that I had TB, explained to me how fortunate I was to have TB, as opposed to MAC.
She went on to explain that TB grows very slowly when compared with MAC.
Cuts are still healing well and quickly, and I find sticking to an all vegan diet
to be the easiest thing in the world.
If I had the means, I would just buy the antibiotics myself, and skip the ordeal
with LA Cares.
Need them simply over antibiotics.
Requested an appointment with oncology, with an expectation that chemo will be offered.
Am awaiting response from an herbalist, that I hope
may be able to help with the cancer.
When I lost a kidney to cancer, they wanted to use chemo,
as it had "escaped the margins".
I elected to go with extracted cannabis.
Don't like or trust Rockefeller medicine.
Corrosive as hell to integrity.
mail today. It was not with the pulmonary clinic, nor with oncology.
Three weeks ago, while the individual I was dealing with was maintaining the illusion that they
were going to provide me with the referrals I requested with the pulmonary clinic and oncology,
she took it upon herself to order a CT scan w/ contrast.
The comment she made to me as she did so, was that the pulmonary clinic would want it
anyhow.
Am so disgusted. In the past several months, I have had enough procedures and testing done, so that when it is printed out, it spills onto a second sheet of paper.
When it comes to treatment there is a single item listed; 2000 ml of lactated ringers.
The outcome for treatment of stand alone MAC delivers a 65 % rate of success
with the standard antibiotic protocol. Can be improved by 10% with the addition of
one addition antibiotic taken for 4 months at the onset of treatment.
Dr I spoke with at the health dept said the normal route for treatment would be through the
pulmonary clinic.
Treatment would be the standard antibiotic combination, add one more for the extra 10%
enhancement. Check progress at 4 months with chest xray, drop one antibiotic and
continue with the rest of the antibiotics.
Pretty straightforward.
Once I make it past the gate tender.
Complicating factor, is the cancer and MAC are combined.
Will take a picture of the xray tomorrow.
Two have been taken, one at Olive View,
when I went to the ER, and a second one
by the Health dept 3 weeks later.
Looking at the two side by side
and seeing the difference that 3 weeks made, gives me all kinds of warm fuzzy feelings
about the gatekeeper that has burnt up the past 3 weeks.
A nice public health nurse, in an effort to pick up my spirits while they thought
that I had TB, explained to me how fortunate I was to have TB, as opposed to MAC.
She went on to explain that TB grows very slowly when compared with MAC.
Cuts are still healing well and quickly, and I find sticking to an all vegan diet
to be the easiest thing in the world.
If I had the means, I would just buy the antibiotics myself, and skip the ordeal
with LA Cares.
Need them simply over antibiotics.
Requested an appointment with oncology, with an expectation that chemo will be offered.
Am awaiting response from an herbalist, that I hope
may be able to help with the cancer.
When I lost a kidney to cancer, they wanted to use chemo,
as it had "escaped the margins".
I elected to go with extracted cannabis.
Don't like or trust Rockefeller medicine.
Corrosive as hell to integrity.
Much love and strength, try and keep your head up Gry
Gry it seems like they are repeatedly dropping the ball when it comes to appointments, hopefully it’s possible to call and confirm an appointment exists once a new one happens.
Have you ever considered just going to an ER to at least get assessed by another set of Dr.’s, maybe get lucky and find a more proactive individual who could get you some care options, or somehow fast track the process?
I realize your not wanting a lot of the options like chemo, but as you say your testing images are progressing and that fact might mean something if a caring person saw it. Hate going for care myself, and it sounds like you’ve already had more than your share, so probably an unappealing option, but hopefully you would only lose a day or two of time, if the ER idea didn’t pan out.
I looked into the lactated ringers and as you probably know, they are a prescribed item. Unfortunately I don’t know a dr that would write a script for those.
Hoping you get an actual appointment that helps soon.
Saw some interesting info on ginger, how it was much more effective than taxol on stem cells of cancer, breast cancer in this study.
While the cancer type might not be relevant it seems at least possible it would help with other cancers. Info is from a 2015 study published in the Public Library of Science, and might have been included in the link you shared a while back, but maybe not.
https.www.//greenmedinfo.com/blog/-ginger-10,000x-stronger-chemo-taxol-cancer-research-model-1
If that link doesn’t seem to work, search greenmedinfo ginger 10,000x stronger than chemo (taxol)
Have you ever considered just going to an ER to at least get assessed by another set of Dr.’s, maybe get lucky and find a more proactive individual who could get you some care options, or somehow fast track the process?
I realize your not wanting a lot of the options like chemo, but as you say your testing images are progressing and that fact might mean something if a caring person saw it. Hate going for care myself, and it sounds like you’ve already had more than your share, so probably an unappealing option, but hopefully you would only lose a day or two of time, if the ER idea didn’t pan out.
I looked into the lactated ringers and as you probably know, they are a prescribed item. Unfortunately I don’t know a dr that would write a script for those.
Hoping you get an actual appointment that helps soon.
Saw some interesting info on ginger, how it was much more effective than taxol on stem cells of cancer, breast cancer in this study.
While the cancer type might not be relevant it seems at least possible it would help with other cancers. Info is from a 2015 study published in the Public Library of Science, and might have been included in the link you shared a while back, but maybe not.
https.www.//greenmedinfo.com/blog/-ginger-10,000x-stronger-chemo-taxol-cancer-research-model-1
If that link doesn’t seem to work, search greenmedinfo ginger 10,000x stronger than chemo (taxol)
The Health dept called and told me they want to see me at 12;30 tomorrow afternoon. My intent is to ask them for a referral to the pulmonary clinic at the hospital, which would effectively allow me to bypass LA Cares.
Should that fail, my next appointment is for a CT scan on the 23rd of
this month through LA Cares.
Would think that would result a referral fairly rapidly.
Neat article in the link, have been using it once a day,
will have to look into details of it this evening.
At this point, I there is not much I haven't considered,
I have been far less than pleased with the pace of things.
At the same time, I know that I am going to be dealing
with some rough antibiotics for an extended period in the
real near future . In the mean while my appetite has
picked back up and I have been able to regain
some weight. I have also increased the amount
of walking to try to build up a little stamina back.
Saw the people at the Health Dept, and was able to speak with an MD there, who was able to access the files at LA Cares.
The last time I was at LA Cares, the individual I was dealing with for the second time in two weeks decided they were less than comfortable with my repeated requests for a referral, and they fled the room with my telling them I fully intended to file what complaint was available to me.
The MD at the Health Dept was able to view the notes from that encounter,
as well as the follow up which resulted.
I was set up with an appointment with a primary care provider on the 20th of this month.
Oncology was contacted, and ordered a biopsy, which is to be done by the pulmonary clinic
at Olive View.
I asked the MD what they thought was the reason for the extended time period between
diagnosis and treatment.
The response was that that the public/private 'partnership' with the insurance industry had
not worked out as well as it might.
I was provided a phone number with which to call and confirm the appointments.
Look forward to seeing what the outcome with primarycare will be on the 20th.
Redlaser asked why do I not head back over to the er at Olive View again.
Have given serious thought to going over to the pulmonary clinic, waiting until
a staff member near my age comes out, and show them the paperwork from the health dept,
and to simply ask them for an appointment.
Worked OK for me at the ortho clinic when I had a broken leg a few years back.
Asked the MD today, for a written referral to pulmonary.
Was told that was the standard procedure, but that they have been instructed that
everything must now go through LA Cares.
The last time I was at LA Cares, the individual I was dealing with for the second time in two weeks decided they were less than comfortable with my repeated requests for a referral, and they fled the room with my telling them I fully intended to file what complaint was available to me.
The MD at the Health Dept was able to view the notes from that encounter,
as well as the follow up which resulted.
I was set up with an appointment with a primary care provider on the 20th of this month.
Oncology was contacted, and ordered a biopsy, which is to be done by the pulmonary clinic
at Olive View.
I asked the MD what they thought was the reason for the extended time period between
diagnosis and treatment.
The response was that that the public/private 'partnership' with the insurance industry had
not worked out as well as it might.
I was provided a phone number with which to call and confirm the appointments.
Look forward to seeing what the outcome with primarycare will be on the 20th.
Redlaser asked why do I not head back over to the er at Olive View again.
Have given serious thought to going over to the pulmonary clinic, waiting until
a staff member near my age comes out, and show them the paperwork from the health dept,
and to simply ask them for an appointment.
Worked OK for me at the ortho clinic when I had a broken leg a few years back.
Asked the MD today, for a written referral to pulmonary.
Was told that was the standard procedure, but that they have been instructed that
everything must now go through LA Cares.
M
moose eater
>>>>""The response was that that the public/private 'partnership' with the insurance industry had not worked out as well as it might.""<<<
>>>""Asked the MD today, for a written referral to pulmonary.
Was told that was the standard procedure, but that they have been instructed that
everything must now go through LA Cares.""<<<
----------------------------------------
Precisely as I suspected, Gry. LA Cares, at the instruction of what ever entity, is now the metering agent where control of budgetary obligations is concerned, and they're placing dollars over ethical and other obligations.
SSI has worked under this methodology for decades. Seriously. Deny bennies, then deny them some more, until the applications -can't- be denied further, often as a result of appeals, often in the courts..
They lose a percentage of applicants via attrition, but fail to assess (properly) the additional costs in life, cost of corrective (rather than preventative) care, court settlements (to include retroactive bennies), attorney fees (of course, theirs are often already on retainer), and with arbitration clauses in place, many places even manage to avoid some of that category of tar babies.
But it sounds like you're making some amount of progress, if for no other reason than tenacity and reaching out to the (sometimes hard to locate) empathetic and experienced ears in the System who are still willing at least to be honest with you.
From a legal perspective, and I might've mentioned this before (though I'm definitely not an attorney), it'd be a good idea (if you're not already doing it) to keep a journal of your trek through bureaucratic health care Hell. Otherwise, if your complaint ever gains traction, the only legal record available will be the records at LA Cares, et al, and you already know that the formal records there don't necessarily present history in your favor.
if you have a step-by-step, day-to-day journal of experiences, that's as admissible in a court as their formal, often inaccurate medical records (*If most folks requested copies of their medical records from any clinic in the U.S., they'd be blown away at the inherent inaccuracies contained in them; chronic errors abound. Seriously).
Anyway, I'm glad you're making progress, even if you're having to put chains on your proverbial tires to get any traction.
Hang in there.
>>>""Asked the MD today, for a written referral to pulmonary.
Was told that was the standard procedure, but that they have been instructed that
everything must now go through LA Cares.""<<<
----------------------------------------
Precisely as I suspected, Gry. LA Cares, at the instruction of what ever entity, is now the metering agent where control of budgetary obligations is concerned, and they're placing dollars over ethical and other obligations.
SSI has worked under this methodology for decades. Seriously. Deny bennies, then deny them some more, until the applications -can't- be denied further, often as a result of appeals, often in the courts..
They lose a percentage of applicants via attrition, but fail to assess (properly) the additional costs in life, cost of corrective (rather than preventative) care, court settlements (to include retroactive bennies), attorney fees (of course, theirs are often already on retainer), and with arbitration clauses in place, many places even manage to avoid some of that category of tar babies.
But it sounds like you're making some amount of progress, if for no other reason than tenacity and reaching out to the (sometimes hard to locate) empathetic and experienced ears in the System who are still willing at least to be honest with you.
From a legal perspective, and I might've mentioned this before (though I'm definitely not an attorney), it'd be a good idea (if you're not already doing it) to keep a journal of your trek through bureaucratic health care Hell. Otherwise, if your complaint ever gains traction, the only legal record available will be the records at LA Cares, et al, and you already know that the formal records there don't necessarily present history in your favor.
if you have a step-by-step, day-to-day journal of experiences, that's as admissible in a court as their formal, often inaccurate medical records (*If most folks requested copies of their medical records from any clinic in the U.S., they'd be blown away at the inherent inaccuracies contained in them; chronic errors abound. Seriously).
Anyway, I'm glad you're making progress, even if you're having to put chains on your proverbial tires to get any traction.
Hang in there.
AgentPothead
Just this guy, ya know?
I wish I could do more to help. This bowl is for you Gry. 
Me too,, big up gry
One step after one step after one step...you have many supporters here, Gry. Keep on steppin'.
I mentioned the UK has decent pain meds,, i have Codine,, not the best but its OK,, maybe tramadol and morphine patches from my cousin down south
M
moose eater
I'd earlier been handling distribution of addresses, etc., for Gry. The ICM community had been very supportive earlier when he was in a serious pinch.
It's been done on a case-by-case basis. He's been very grateful for all of the assistance he's received to date.
But the biggest hurdle has been getting the health care folks he has access to, by virtue of his specific insurance, to remember that they're in the health care business, not the abacus or bean-counting business.
There are many fine people on here over the years,and I am glad to have known them all, the support and caring nature shown in this thread is a testament to that fact! ,I want to extend my gratitude to each and everyone who has lifted gry up , if only in thought , but most certainly in those who have gave, living a hard life is not unknown to me,and I can only state for myself, just how important it is to have someone in your corner,when least expected,thank you all for your KINDNESS!!! , chin up gry! Miracles do happen,wanta
I have (edited) on repeat prescription, more than I use and enough to send him some.
I would also send him (edited) to offset the nausea from it.
I have some (edited) too for anxiety.
I would also be happy to buy some groceries online in his area to be delivered to him. I’m thinking protein powder for shakes and vitamin supplements.
M
moose eater
Hey,
I'm all out of rep for anyone, but I'd check with Gry about anything that exceeds canna extracts, or similar. I think he's trying to stick with that, but I may be wrong; as status changes, so do needs.
At any rate, such exchanges might best be spoken of in PM, so as not to fly them up any flag poles in plain view, if you know what I mean. "Danger, Will Robinson!"
Anyway, I suspect Gry appreciates the interest in assisting him. He's certainly been struggling through, and maintained his 'full steam, straight ahead' approach as best as he can.
I'm waiting to hear back from him, one way or another, and will post more, or send you another PM, Spaventa.
And thank you for your sharing of concerns for his plight. His struggle is a barometric reading of the state of the State's ability to absorb the tasks it takes on, while sending too much funding to places/projects that are lesser in priority in the minds of many of us.
Thanks again.
I'm all out of rep for anyone, but I'd check with Gry about anything that exceeds canna extracts, or similar. I think he's trying to stick with that, but I may be wrong; as status changes, so do needs.
At any rate, such exchanges might best be spoken of in PM, so as not to fly them up any flag poles in plain view, if you know what I mean. "Danger, Will Robinson!"
Anyway, I suspect Gry appreciates the interest in assisting him. He's certainly been struggling through, and maintained his 'full steam, straight ahead' approach as best as he can.
I'm waiting to hear back from him, one way or another, and will post more, or send you another PM, Spaventa.
And thank you for your sharing of concerns for his plight. His struggle is a barometric reading of the state of the State's ability to absorb the tasks it takes on, while sending too much funding to places/projects that are lesser in priority in the minds of many of us.
Thanks again.
If I wasn't in a hole atm I'd be sorting more
M
moose eater
Everybody does what they're able or can. The outpouring thus far has been commendable.
From thoughts, prayers, care packages, gift cards, cash, extracts, and more, the showing has been remarkable, and Gry is more than aware of that. He is humbled, and more so, wants to keep everything as straight as possible, including gratitude, so as not to mess up this process for anyone in the future.
He sees this as a model for activist assistance for the future for others.. I see it as a method for others to express appreciation in a time of need for someone who has strived to be a decent person to others, and is in need. An opportunity for -everyone- to feel good about something, all the while dealing with shitty circumstances. Yin & Yang strike again.
From thoughts, prayers, care packages, gift cards, cash, extracts, and more, the showing has been remarkable, and Gry is more than aware of that. He is humbled, and more so, wants to keep everything as straight as possible, including gratitude, so as not to mess up this process for anyone in the future.
He sees this as a model for activist assistance for the future for others.. I see it as a method for others to express appreciation in a time of need for someone who has strived to be a decent person to others, and is in need. An opportunity for -everyone- to feel good about something, all the while dealing with shitty circumstances. Yin & Yang strike again.
