What disease/symptom description do you identify with most?


  • Total voters
    5

LA2SD

Active Member
Hello new fatigued friends,

I suppose we can make this my introduction. :)

I have unfortunately stayed away from the ME/CFS community for awhile, not totally, intentionally trying to, but there are reasons I've been away, but I should not have to. And now that I've joined Health Rising, which I'm grateful to Cort for, I feel I need to address those issues upfront because they are hurting the community as a whole (not speaking of Health Rising specifically here, but of the entire ME/CFS community), and now that I'm trying again here, I don't want these things to harm ME/CFS or even FM or MS sufferers here.

1. I've been pushed out of a past CFS forum for telling medical truths that could save lives in the past. The moderators were literally deleting my posts before anyone could read them in response to their questions.

Please, folks, let's never censor medical information or research, regardless if it's hard for you to believe at first. Let people hear everything, and let the reader decide what's helpful or not, because - let's face it - most of us are NOT fully healed, most of our doctors are baffled - if we don't have 100% a final, full answer and proper diagnosis that leads to 100% healing, then we must be open to learning. In other words, I'm tired of the ignorance, albeit mostly sincere and innocent, of my own ME/CFS community.

So far, I am proud and thankful to report that my initial comments here have not been deleted - thank you, Health Rising! So we're looking good here so far at Health Rising. Let's keep it going. There is still a naivete and sincere ignorance still in the worldwide ME/CFS/FM community, and maybe even MS, that I will discuss in due time. Many wonder why our needs are not being addressed and taken seriously more. I hope they can in due time, but it would behoove everyone to finally realize that the medical system in Western nations has been corrupted, to include the CDC, FDA, and NIAID. Because we tend to use our own personal feelings to understand the world, we assume others care about humanity as much as we do. Please understand that those in power who stand to gain billions off our ignorance do NOT care, and would like to keep it this way and stay in power, and those leading Big Pharma do not care whether you heal or die, but they do care how much they can gain from your suffering. So if getting you on pharmaceuticals to only manage disease and not heal is something they can do, then they will do it over healing you. Truly, we could have easily cured these things 30-40 years ago or more. But many of the cures have been covered up and the doctors that used them have been attacked by the FDA or murdered by Big Pharma (the two are in bed with one another, and many just rotate in and out as the heads of each others' organizations, including the NIAID who is in cahoots w/their corruption and paid well). The list is now getting huge of the doctors that have been attacked. Eventually I will tell you what doctors have told me themselves, and many are scared for their lives and medical licenses right now in SoCal if they do too much for their patients to heal them of seemingly incurable diseases, or if they write them too many letters of support. Literally, all 4 clinics I go to in SoCal that are trying to help people are all under attack in small or large ways. Also, a potential cure has just been banned by the CA State Pharmacy Board. Somebody's payin' somebody some big bucks, if you know what I mean. But if they can keep banning cures here, then they know they will succeed in the rest of the USA, and maybe the world, with California being one of the most open and liberal regions when it comes to unconventional therapies in the Western world. I.e., the corruption at the top doesn't represent We, the People.

In other words, to understand what we're up against, dear friends, this is an all out war, and you must learn to become a Spiritual Warrior now, even as fatigued as we all are. It is too much to explain it all now, but give me some time and I will try. I do think a lot of it will be too hard for some to believe though, so let me give it to you little by little. ;)

Please know I am NOT a conspiracy theorist and I hate the term, so don't write me off or accuse me of being one (that term was first coined by the C I A as part of a public psychological operation to shame those that were questioning JFK's murder, because, yes, our own leaders had him killed. He was doing too much for The People and not enough for the slave masters and their families who still run the Western world till this day. You can actually read about this in Freedom of Information Act requests.) The psyop was a success, and those telling the truth contrary to the lies the C I A spreads through their paid-off media that run every mainstream outlet today, are still shamed and unheard by those taught to write the truthtellers off as just "conspiracy theorists." Little by little I will try to teach you how deep the brainwashing goes over our people and medical institutions and the full reasons why, if you will allow me.

I am a TRUTH Warrior, and I will always come back and correct myself if I'm wrong. I spend more time in the Truth community than I do in the ME/CFS communities, but we need to change that. You need me as much as I need you, and God willing I heal one day, I'm going to fight for your right to be heard. I cannot take it to hear some of our sufferers have committed suicide. ;( I will not stand for the injustice and is why I'm coming to you here to wake you up to the bigger picture out of my love for you all. I hope you and Cort receive me. I am a force to be reckoned with and I know you all are too, and that is why darkness has tried so hard to silence us and take us out.

2. Please, let's stop arguing about the terms ME or CFS, as I've had ME people be offended by my use of CFS. We all know CFS is just an easy way to describe a set of symptoms. We all know we need to be seeking further diagnoses than both ME or CFS and many have found them. It's fine to relate to one term more than the other. Me, I personally relate to CFS more than ME, but I see markers and symptoms that crossover to ME, and I learn from ME sufferers. My doctors have never used the term ME though. I can relate to people with FM too though, as we all have some similar symptoms. If I didn't do what I do to heal, I think I would have FM or MS. Others have tried to argue about this with me elsewhere, totally ignoring more life-saving info I was trying to give them. Understand it is easier to write "CFS" than to spell out "Chronic Fatigue." Allow us to use it to even describe symptoms as our doctors do. It seems this offends those in other countries though, maybe like in Denmark where CFS patients have been shamed. It's fine if you don't think they are related in your own case, but in all cases I've looked at, the causes do look related, the difference seems to be where the virus travels, if there is a viral influence, and there does seem to be more and more as the honest doctors and researchers speak out. Nevertheless, I'm open to hearing different case studies if you want to share in your experience of ME and FM and MS or even CFS so we can all get to the bottom of it together.

We have to become our own experts, our own doctors, and our own advocates.

Where I'm from in SoCal, CFS is NOT to be shamed, nor do my doctors shame me for having it. They may not know how to fully help me, and they think it is mostly related to PTSD and insomnia, but it is not an embarrassing diagnosis until we get to a proper diagnosis. Where CFS is limited is when we need to apply for things like insurance. I'm hoping to learn more from you guys that have succeeded. Also, my friends may not fully understand, but they also do not shame me. CFS is becoming more and more common here, and I do expect the cases will continue to grow for reasons I've said in previous comments.

So if you have ME, please don't be offended if I talk about CFS. Some of you may be fatigued, some of you may not. Can we just all bind together and help each other? Personally, I do think CFS is NOT a syndrome anyway. Again, there are times I need to abbreviate CFS for sake of conversation and communication, so please allow grace in that and let's focus on what we need to focus on - how to help one another. Fatigue does happen to be my most debilitating symptom though, in regards to my ability to provide for myself. This doesn't mean I don't have chronic neck issues and even migraines at times. But for me, the fatigue is daily, year after year.

The Bible says "The curse causeless shall not come." Some may interpret this differently, but how I take it is that there is a cause for everything. Our job is to find what that cause is. Just because ME/CFS/FM/MS are names of things the medical institutions have not agreed on a direct cause for, does not mean there are not direct causes - there are. Usually though, when causes are not figured out by a standard consensus in conventional medicine early on, it is usually because those that hold the control and power do NOT want us to know! And sometimes... they don't want us to know.... because they CAUSE it. I will try to share more soon what I think the causes of my CFS have been and I look forward to hearing yours and what you've learned!

Thank you so much for reading my 1st Health Rising post! :)
 

Oboe

Member
I'm trying to get back to southern California as I'm totally lost for care.
When one adds hEDS etc I just look too good
 

LA2SD

Active Member
I'm trying to get back to southern California as I'm totally lost for care.
When one adds hEDS etc I just look too good
Hi Oboe, thank you for sharing!

Where are you at now? Do you have some good, affordable CA doctors in mind?

And I, too, need to look into hEDS more... Do you think that diagnosis did not help you?
 

Oboe

Member
Hi Oboe, thank you for sharing!

Where are you at now? Do you have some good, affordable CA doctors in mind?

And I, too, need to look into hEDS more... Do you think that diagnosis did not help you?
IM 66 and have been diagnosed with hEDS since I was 17. I grew up in S cal and I never experienced lack of care and outright bad behavior as I have in the Bay Area. I feel that being hyper mobile defiantly has a lot to do with brain stem compression. I have spinal leaks adhesion's in my spinal canal,I have a referral to Cedars spinal leak clinic. If I could just get back to my old PCP id be overjoyed.
 

Baz493

Well-Known Member
I keep pushing the same statements as yourself on various forums. I've experienced CFS decades ago, due to toxic work exposures, and been forced to identify the problem and cause myself without any assistance from doctors. I hate hearing their standard claim for when they don't understand something; 'I'm sure it's nothing to worry about. Just go home, drink lots of water, and get plenty of rest'. After I became completely disabled nine years ago my condition was initially diagnosed as completely psychological, with medical investigations terminated and my negative response to treatment put down as evidence that I was faking my condition. All of this despite my continued claims of toxic workplace exposures. I was forced to do all of my own research into my condition with the result that I now have clinical evidence of severe respiratory failure, autoimmune myopathy, and a range of other conditions. Within months I should know whether they are all the result of toxic exposure induced Parkinson's disease; which both the exposures, health issues, and symptoms, all fit the pattern of. Until then, with recognition from a specialist, I'm still officially faking my condition. It's just impossible to find specialists who are prepared to put their careers on the line in contradicting hospital specialists, even when those specialists have skipped investigations and just guessed what is wrong; Yes, my medical records actually detail how the hospital psychiatrists weren't really sure of their diagnosis but decided that if enough of them thought it was the same thing then they would go with it.
 

LA2SD

Active Member
IM 66 and have been diagnosed with hEDS since I was 17. I grew up in S cal and I never experienced lack of care and outright bad behavior as I have in the Bay Area. I feel that being hyper mobile defiantly has a lot to do with brain stem compression. I have spinal leaks adhesion's in my spinal canal,I have a referral to Cedars spinal leak clinic. If I could just get back to my old PCP id be overjoyed.
My heart goes out to you, Oboe!

Forgive me, y'all, as I'm crashing right now. I had to move from one storage unit to a better one next to it, and even though my friend did most of the physical labor, just even the mental work of it and staying up late has harmed me so much.

I need to study hEDS more myself. There is def. something going on with our heads/ spinal cords / necks / brain stems. My head, neck, and shoulders, especially on the right side are in so much pain today. Dealing with the light and noise intolerance today too. It was bad. ;(

Here is something I'm wondering... for those that know the brain stem is part of the issue... Did it start with whiplash from a car accident for you? I know whiplash has been a factor for me.

Also, do you guys know about Upper Cervical Chiropractors, also called Brain Stem Specialists? I wonder how everyone would respond to this treatment. They do not "crack" your neck as regular Chiropractors might (though I must say, for some reason, that "cracking" often brings me some relief), but these Chiro Specialists further their training and only deal with the area around the brain stem: atlas, C1, C2, and maybe C3, as they teach any pinched nerve in this area will affect healing in all areas of the body. The Upper Cervical Specialist's goal is to correct any blockages that are keeping the brain stem from sending out its healing messages by using 2 fingers to literally push the atlas back into place with a quick movement. Sometimes you will feel a rush of energy when they do this, and then your body wants to sleep and rest after to recover.

Oboe, I know the best one in Los Angeles if you can get to him. Just let me know if you're interested and I'll fill you in more. I'm having a hard time traveling myself, and I may just try to get to one in SD that was a student of the one in LA. I'll let you know the results. I used to see the LA one, and you know what? I WAS doing better then. It could be (among many other things) that we are all out of alignment right now.
 

LA2SD

Active Member
I keep pushing the same statements as yourself on various forums. I've experienced CFS decades ago, due to toxic work exposures, and been forced to identify the problem and cause myself without any assistance from doctors. I hate hearing their standard claim for when they don't understand something; 'I'm sure it's nothing to worry about. Just go home, drink lots of water, and get plenty of rest'. After I became completely disabled nine years ago my condition was initially diagnosed as completely psychological, with medical investigations terminated and my negative response to treatment put down as evidence that I was faking my condition. All of this despite my continued claims of toxic workplace exposures. I was forced to do all of my own research into my condition with the result that I now have clinical evidence of severe respiratory failure, autoimmune myopathy, and a range of other conditions. Within months I should know whether they are all the result of toxic exposure induced Parkinson's disease; which both the exposures, health issues, and symptoms, all fit the pattern of. Until then, with recognition from a specialist, I'm still officially faking my condition. It's just impossible to find specialists who are prepared to put their careers on the line in contradicting hospital specialists, even when those specialists have skipped investigations and just guessed what is wrong; Yes, my medical records actually detail how the hospital psychiatrists weren't really sure of their diagnosis but decided that if enough of them thought it was the same thing then they would go with it.
Man, I so hear you, Baz493! Thank you for sharing your experiences. I am angered on your behalf at the injustice. :( Do you know the exact toxic exposures that started your symptoms originally?

And I, too, am not into just looking at Parkinson's as a normal aging disease, nor do I see Dementia that way either. There are causes and we need to find them. Biblical characters in ancient times often didn't die of diseases in their old age. When it was time to go, they did things like climbed a mountain and released their Spirits to return Home to their Creator. I.e., I don't believe these things are supposed to be "normal" as much as they want us to accept this new norm created for us.

As I learn more from everyone's experiences and seeing them in my own, I may be leaning more toward needing at least an "ME" or, ideally, a "CIRS" diagnosis. I think you and Oboe here know of the past discussions of CIRS in Dr. James' helpful experiences with Dr. Heyman shared on this forum? I think having a CIRS diagnosis will simply help our doctors know what to do from a helpful angle.

Forgive me, everyone, as I'm too still learning, and I hope this original post didn't come off too harsh. I have been amazed at how much I've been allowed to say here, and I'm amazed to find that others have shared here and there that things such as "vaccines" have been causative factors for them. Maybe I did not need to say my concerns upfront, but had such bad experiences before that I was afraid of running into them here, so thought it best to say them all upfront to get them out of the way.

Nevertheless, ME people from Europe who reject the CFS term, while they do have a point, and I see that point now, I do wish they could have shared with me in patience as to why exactly they would encourage others to use "ME."

In any case, at the end of the day, the diagnosis for all of us seems to really be something like, "Victim and survivor of injuries and crap forced on me, in me, and all around me that God never intended the human body to have to constantly deal with."

In any case, Baz493, I hope you too feel you've been welcomed and able to share openly here?

Also, the VA sees my CFS as only psychiatric as well. While I do appreciate the Mental Health teams there, because they were the only ones writing me letters of support, of course, ONLY treating me from those angles cannot fully heal me. I really was having MH issues on top of everything else, though, because, as you know, when people don't understand what we're going through, it often ends up leading to more abuse of us, which happened to me. Because no one believed me how much I was suffering after my Army vaccinations, when I did actually get injured and fractured my ankle/foot, they, of course, didn't believe that, and I was forced to continue marching on it all night, where one leader kicked me in the injury, and another Physician's Assistant forced me to stay in a Medical Hold w/out an elevator, so that I would be forced to climb up and down multiple flights of stairs all day, almost falling so many times in my crutches. As you can imagine, my ankle/foot never fully healed. Because of the intense brain fog and cognitive decline, despite being known as pretty intelligent my whole life, it was also credited to me as being stupid because I could no longer understand orders right in front of my face being screamed at me.

Just a little of the b.s. I've been through too, so please know I understand and you're not alone! :)
 

Baz493

Well-Known Member
Man, I so hear you, Baz493! Thank you for sharing your experiences. I am angered on your behalf at the injustice. :( Do you know the exact toxic exposures that started your symptoms originally?

And I, too, am not into just looking at Parkinson's as a normal aging disease, nor do I see Dementia that way either. There are causes and we need to find them. Biblical characters in ancient times often didn't die of diseases in their old age. When it was time to go, they did things like climbed a mountain and released their Spirits to return Home to their Creator. I.e., I don't believe these things are supposed to be "normal" as much as they want us to accept this new norm created for us.

As I learn more from everyone's experiences and seeing them in my own, I may be leaning more toward needing at least an "ME" or, ideally, a "CIRS" diagnosis. I think you and Oboe here know of the past discussions of CIRS in Dr. James' helpful experiences with Dr. Heyman shared on this forum? I think having a CIRS diagnosis will simply help our doctors know what to do from a helpful angle.

Forgive me, everyone, as I'm too still learning, and I hope this original post didn't come off too harsh. I have been amazed at how much I've been allowed to say here, and I'm amazed to find that others have shared here and there that things such as "vaccines" have been causative factors for them. Maybe I did not need to say my concerns upfront, but had such bad experiences before that I was afraid of running into them here, so thought it best to say them all upfront to get them out of the way.

Nevertheless, ME people from Europe who reject the CFS term, while they do have a point, and I see that point now, I do wish they could have shared with me in patience as to why exactly they would encourage others to use "ME."

In any case, at the end of the day, the diagnosis for all of us seems to really be something like, "Victim and survivor of injuries and crap forced on me, in me, and all around me that God never intended the human body to have to constantly deal with."

In any case, Baz493, I hope you too feel you've been welcomed and able to share openly here?

Also, the VA sees my CFS as only psychiatric as well. While I do appreciate the Mental Health teams there, because they were the only ones writing me letters of support, of course, ONLY treating me from those angles cannot fully heal me. I really was having MH issues on top of everything else, though, because, as you know, when people don't understand what we're going through, it often ends up leading to more abuse of us, which happened to me. Because no one believed me how much I was suffering after my Army vaccinations, when I did actually get injured and fractured my ankle/foot, they, of course, didn't believe that, and I was forced to continue marching on it all night, where one leader kicked me in the injury, and another Physician's Assistant forced me to stay in a Medical Hold w/out an elevator, so that I would be forced to climb up and down multiple flights of stairs all day, almost falling so many times in my crutches. As you can imagine, my ankle/foot never fully healed. Because of the intense brain fog and cognitive decline, despite being known as pretty intelligent my whole life, it was also credited to me as being stupid because I could no longer understand orders right in front of my face being screamed at me.

Just a little of the b.s. I've been through too, so please know I understand and you're not alone! :)
LA2SD,

As you mention veterans affairs dismissal of your condition as being simply psychological I feel it necessary to point out the weight of evidence of damage done to veterans exposed to the smoke from the burn pit at Camp Lejeune. Between exposures like that and exposures to depleted uranium, used in shells designed to penetrate armor, there really isn't any question that physical harm has been done to people in the middle eastern wars. In researching my own condition I noticed that US army mechanics had experienced toxic exposures from lubricants containing similar engineered silica nanoparticles to those which caused my own Parkinson's disease.

As I knew that my own condition was caused by coating sprays which place the friction resistant coating on the outside of glass bottles, due to the fact that it always burned my airways when I accidentally inhaled it, the problem was to identify precisely what was in the sprays. They call it polyethylene but it's actually a mixture of engineered nanoparticles derived from polyethylene resin. 3-aminopropyltriethoxysilane, or another similarly toxic nanoparticle, is required to bond the coating to glass and that turned out to be what burnt my airways. Companies are supposed to use protection for workers just for that one nanoparticle alone yet they don't. I'm just lucky that researchers have now also connected inhalation of even supposedly safe engineered silica nanoparticles with Parkinson's disease as well as a wide range of other diseases. All of the doctors I have proven this to, with the ton of medical research and patent information on the coating sprays, have looked extremely sheepish at the implications. They appear to have trusted that the Australian government was monitoring toxic workplace exposures when, in reality, such activities were entrusted to companies around two decades ago. That just means that workers are now responsible for protecting ourselves from the companies which employ us. I know of two other workers from my shift, exposed to the same sprays, who both developed 'psychiatric problems' and were forced to retire due to ill health. Governments, through the diagnosis of toxic exposure-induced disease as psychiatric conditions, have been removing responsibility for the resulting damage from the companies and placing the financial and social burden on the public purse, taxpayers, and employee's. I guess that nothing ever really changes despite everyone's claims about how wonderful the world is becoming.

Barry
 

Oboe

Member
LA2SD,

As you mention veterans affairs dismissal of your condition as being simply psychological I feel it necessary to point out the weight of evidence of damage done to veterans exposed to the smoke from the burn pit at Camp Lejeune. Between exposures like that and exposures to depleted uranium, used in shells designed to penetrate armor, there really isn't any question that physical harm has been done to people in the middle eastern wars. In researching my own condition I noticed that US army mechanics had experienced toxic exposures from lubricants containing similar engineered silica nanoparticles to those which caused my own Parkinson's disease.

As I knew that my own condition was caused by coating sprays which place the friction resistant coating on the outside of glass bottles, due to the fact that it always burned my airways when I accidentally inhaled it, the problem was to identify precisely what was in the sprays. They call it polyethylene but it's actually a mixture of engineered nanoparticles derived from polyethylene resin. 3-aminopropyltriethoxysilane, or another similarly toxic nanoparticle, is required to bond the coating to glass and that turned out to be what burnt my airways. Companies are supposed to use protection for workers just for that one nanoparticle alone yet they don't. I'm just lucky that researchers have now also connected inhalation of even supposedly safe engineered silica nanoparticles with Parkinson's disease as well as a wide range of other diseases. All of the doctors I have proven this to, with the ton of medical research and patent information on the coating sprays, have looked extremely sheepish at the implications. They appear to have trusted that the Australian government was monitoring toxic workplace exposures when, in reality, such activities were entrusted to companies around two decades ago. That just means that workers are now responsible for protecting ourselves from the companies which employ us. I know of two other workers from my shift, exposed to the same sprays, who both developed 'psychiatric problems' and were forced to retire due to ill health. Governments, through the diagnosis of toxic exposure-induced disease as psychiatric conditions, have been removing responsibility for the resulting damage from the companies and placing the financial and social burden on the public purse, taxpayers, and employee's. I guess that nothing ever really changes despite everyone's claims about how wonderful the world is becoming.

Barry
 

Oboe

Member
Excuse my typing on my phone. Something must be done to educate the ignorant before permanent medical harm is done .
I never had problems with diagnosed illness or being born with hEDS , having local Metastatic breast cancer, lymphedema, RSD, Dupytrens Contracture , full rotator cuff tear after taking one Cipro.
I just now got so sick in my soul. I had paid to get my medical records since no one in the bay area of California believed I even had a medical history let alone spine surgeries and numerous odd EMG reports , A fib etc.
What has scared me the most is not being believed about my genetic pharm issues.
I'm 66 , and since I was injured at work and my lower back went .
I've been on a stack of medication for 20 years that I found out in 2016 that I can't metabolise at all. Gee no wonder chemotherapy didn't work or Tamoxofien.
All the SSRIs.
I thought I just had chemo brain.
I've been given IV meds I'm allergic too and then cannot process .
Imagine my horror to be sent to a ER for a full MRI because my PCP thought I might become paralyzed, the notes were lost in transition.
Low and behold I'm listed as " chronically homeless" with fictional disease and instead of getting a MRI I'm being assessed for commitment and given medication ( with the gene sight report in my hand that is toxic too me)
I have no voice. I have no credibility. I'll never get pain relief .
I came up to the bay area because my house was on the woods and my lymphedema could not be controlled at that altitude.
I had won a voucher for housing in Berkeley, been petm disabled since 1994.

It's been 13 years without care at all .
I finally paid to go to the center for Complex Diesese.
I couldn't even get my pertinent medical records to the center.

I can't lift them since a Lyft driver shut the trunk on my head when he refused to remove my mobility device.
The non profit organization that was supposed to be assisting me only knows that anyone who has ever been without a roof must be insane and a addict etc.
Silly me thinking a LCSW or a psychiatrist would believe my medical history..
Jokes on me.
How can I ever fix 13 years of fraud .
This isn't just able a label and cut and paste it's billing for service never received and cover ups.
Crazy, I have proof of 3/4 of what's been written about me in medical records and evidence to prove otherwise.
I'm not referring to subjective comments.

Patient thinks she had had XYZ and I have the surgeries and pathology reports from Southern California to correct this mess .
I fought hard to get out of the full service partnership.
Now they are refusing to give me accomadations to function in a environment that does not have positive mold
.
Now I'm diagnosised with CCI , CFS/ME, adhesive Arachnoiditis, Familial Dysautonomia Riley-Day, MCAD, spinal leaks, on and on..
I just got the tox report back and then the invatie report .
I'm scared.

How as a rare diesese group can we fix this stigma so we will get care

We certainly are not alone and we need representation because we are all too damn I'll to get from point a too b let alone advocate for ourselves when it only makes it worse.
My trauma is so bad.
I'm terrified to go to a obgyn appt this morning because no one will comprehend that I was diagnosed with endometriosis 30 years ago and they refuse my records from my hands

With my non existent tech skills i guess I now have created my own documents.
I think I advocated myself into a predicament .

Quality of life is non existent. I'm paying to see a wonderful physician who has diagnosed me finally, but no one will incorporate her records or diagnosis into the country system.
I'm being sent to in house physicans who don't even examine me and look at a standard x ray and tell me I don't have CCI and take off the collar.
I've been advised to get back to Los Angeles California.
Referral to Cedars Sinai LA spinal leak clinic.
No one will believe me.

I need to find a PCP who has a clue .

I'm scared.





.






.
 

Baz493

Well-Known Member
Excuse my typing on my phone. Something must be done to educate the ignorant before permanent medical harm is done .
I never had problems with diagnosed illness or being born with hEDS , having local Metastatic breast cancer, lymphedema, RSD, Dupytrens Contracture , full rotator cuff tear after taking one Cipro.
I just now got so sick in my soul. I had paid to get my medical records since no one in the bay area of California believed I even had a medical history let alone spine surgeries and numerous odd EMG reports , A fib etc.
What has scared me the most is not being believed about my genetic pharm issues.
I'm 66 , and since I was injured at work and my lower back went .
I've been on a stack of medication for 20 years that I found out in 2016 that I can't metabolise at all. Gee no wonder chemotherapy didn't work or Tamoxofien.
All the SSRIs.
I thought I just had chemo brain.
I've been given IV meds I'm allergic too and then cannot process .
Imagine my horror to be sent to a ER for a full MRI because my PCP thought I might become paralyzed, the notes were lost in transition.
Low and behold I'm listed as " chronically homeless" with fictional disease and instead of getting a MRI I'm being assessed for commitment and given medication ( with the gene sight report in my hand that is toxic too me)
I have no voice. I have no credibility. I'll never get pain relief .
I came up to the bay area because my house was on the woods and my lymphedema could not be controlled at that altitude.
I had won a voucher for housing in Berkeley, been petm disabled since 1994.

It's been 13 years without care at all .
I finally paid to go to the center for Complex Diesese.
I couldn't even get my pertinent medical records to the center.

I can't lift them since a Lyft driver shut the trunk on my head when he refused to remove my mobility device.
The non profit organization that was supposed to be assisting me only knows that anyone who has ever been without a roof must be insane and a addict etc.
Silly me thinking a LCSW or a psychiatrist would believe my medical history..
Jokes on me.
How can I ever fix 13 years of fraud .
This isn't just able a label and cut and paste it's billing for service never received and cover ups.
Crazy, I have proof of 3/4 of what's been written about me in medical records and evidence to prove otherwise.
I'm not referring to subjective comments.

Patient thinks she had had XYZ and I have the surgeries and pathology reports from Southern California to correct this mess .
I fought hard to get out of the full service partnership.
Now they are refusing to give me accomadations to function in a environment that does not have positive mold
.
Now I'm diagnosised with CCI , CFS/ME, adhesive Arachnoiditis, Familial Dysautonomia Riley-Day, MCAD, spinal leaks, on and on..
I just got the tox report back and then the invatie report .
I'm scared.

How as a rare diesese group can we fix this stigma so we will get care

We certainly are not alone and we need representation because we are all too damn I'll to get from point a too b let alone advocate for ourselves when it only makes it worse.
My trauma is so bad.
I'm terrified to go to a obgyn appt this morning because no one will comprehend that I was diagnosed with endometriosis 30 years ago and they refuse my records from my hands

With my non existent tech skills i guess I now have created my own documents.
I think I advocated myself into a predicament .

Quality of life is non existent. I'm paying to see a wonderful physician who has diagnosed me finally, but no one will incorporate her records or diagnosis into the country system.
I'm being sent to in house physicans who don't even examine me and look at a standard x ray and tell me I don't have CCI and take off the collar.
I've been advised to get back to Los Angeles California.
Referral to Cedars Sinai LA spinal leak clinic.
No one will believe me.

I need to find a PCP who has a clue .

I'm scared.





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Oboe,

Your treatment at medical hands sounds even worse than my own. There is just such a massive level of arrogance and incompetence in the profession of allopathic doctors. An expert here recently stated that Australia doesn't just have some of the finest doctors in the world but that it also has many of the most incompetent doctors in the world. I keep hearing stories like yours coming out of people living in the US as well, reinforcing my view that the US and Australian medical systems are of a pace with their levels of failing patients. When you have a situation where some doctors actually intentionally kill their patients, with the hospitals employing them covering up, you really have to worry. https://www.news.com.au/lifestyle/h...s/news-story/ca73586496e9e14cbf38313f04fcba2e Last year I was reading about an Australian doctor who was known to routinely just walk up to a patient on life support and turn it off. Staff were both scared for their jobs and scared of the consequences if anyone found out yet the hospital management just kept ignoring it happening.

During the 1980's a young man, 17 and straight from his initial training, arrived at the army unit I was stationed with. On his first day he attended sick parade and went to see the bases civilian doctor, who we all knew never tried to help his patients. He spent half the day, trying to get treatment but just being accused of malingering, before being hospitalised with the threat that the doctor would prove he was faking his condition and have him put in hospital. After three days of the doctor taking no action a nurse put his whole career at risk and forged the doctors signature on a referral for a medical investigation. That one action saved the boys life. He had to be raced for emergency surgery for a burst appendix. I never heard how long it must have been poisoning his body but the facts were that he died on the operating table, was revived, and had to be paid a huge compensation payout because, at the age of 17, they said he would never be able to work another day in his life. Huge investigation by the army and government. Knowing that just a single doctor has so much power and malevolence that it can completely destroy someone's life should make everyone wary of the profession.

Barry
 

buckey

Member
WOW...somebody thinks like I do....re:1st initial post.
I've had a lot of time to think about what these blanket illnesses ACTUALLY are.when a person is sick, they have nothing but time to think...when I could get my brain to think.
I live in Canada where the health care is Free, ..it comes with a lot of control as well.in 35 years of searching for answers, I never got an answer
Scientifically...which I always thought drs. Had to have to treat an illness.But with these blanket illnesses the science got thrown out the window and replaced with any drugs they could find.

If we look at the business side of medicine, we quickly come to realize, they are mostly in it for financial gain....and I was soooooo nieve for so many decades. WOULD THE TRUE HEALERS OF THE WORLD PLEASE STAND UP!!!
 

Baz493

Well-Known Member
WOW...somebody thinks like I do....re:1st initial post.
I've had a lot of time to think about what these blanket illnesses ACTUALLY are.when a person is sick, they have nothing but time to think...when I could get my brain to think.
I live in Canada where the health care is Free, ..it comes with a lot of control as well.in 35 years of searching for answers, I never got an answer
Scientifically...which I always thought drs. Had to have to treat an illness.But with these blanket illnesses the science got thrown out the window and replaced with any drugs they could find.

If we look at the business side of medicine, we quickly come to realize, they are mostly in it for financial gain....and I was soooooo nieve for so many decades. WOULD THE TRUE HEALERS OF THE WORLD PLEASE STAND UP!!!
Buckey, You are right. Pharmaceutical companies have taken the business model of programmed obsolescence and applied it to the practice of medicine. Programmed obsolescence involves the fact that, if a company permanently solves a problem then, market demand for the companies product quickly ceases. In practice this has been demonstrated by producing things like washing machines designed to last a lifetime. Once you have bought one you never need to buy another and, once every household in the neighbourhood has bought one, market demand ceases. In medicine, if you cure a disease then you cease to make money from it. So you are left with the question of whether to acknowledge the disease, and simply treat it for the life of the patient, or to leave the diagnosis of the disease very 'murky' so that the patient continually spends money searching for the solution to their health issues. It is estimated that only a small percentage of people with conditions like coeliac disease, MTHFR mutations, mitochondrial diseases, etc, are actually being diagnosed, so leaving them repeatedly returning to their doctors for answers only to be gaslighted for being hypochondriacs. Once you have received that diagnosis you officially fall under mental health, rather than any clinically provable disease, and no further medical investigations are required from doctors regardless of how often you seek advice from them. My own exposure to toxic engineered silica nanoparticles, used in work coating sprays, led to the destruction of my health. I was gaslighted, with my condition being claimed to be completely psychological and no clinical investigations pursued. Doctors are now faced with the evidence of massive damage throughout my body, resulting from those exposures, with questions over many years I still have to live as a consequence of the exposures having been ignored. I am aware of two other workers exposed to the same sprays whose careers also ended with psychological diagnoses; a situation now identified by medical researchers as being common in response to exposure to the engineered silica nanoparticles. Once doctors become accustomed to gaslighting patients for less severe conditions and health issues they are going to also do so with more and more severe conditions, as they have with exposures like my own. In Australia, we are looking at our public health system gradually collapsing because so few people are actually being cured yet with a continuingly increasing number of new cases entering the system. The irony is that it isn't the health system being blamed but the politicians who fund it despite the fact that it isn't doing what it was originally designed to do.
 

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