The Dark Matter of Medicine

[jmj11]

One of a hundred things wrong with healthcare, knowing the unknown and listening to what the patient is saying: Blog Post: The Black Matter of Medicine.

[Mayamom]

Very interesting.    Hope you health is improving.  I too was diagnosed with a rare neurological/pain issue a few years back.  Never recovered from it.  Luckily all the providers I was evaluated by believed what I had to say but had no idea/diagnosis what was wrong with me.    And the funny thing I was hysterical because my life was being taken away from me due to pain.  Keep writing I enjoy reading what you write. 

[turnedintoamartian]

Great read, thanks for sharing. It’s a very worthwhile topic and your perspective is appreciated.

[camoman1234]

3 hours ago, Mayamom said:

Very interesting.    Hope you health is improving.  I too was diagnosed with a rare neurological/pain issue a few years back.  Never recovered from it.  Luckily all the providers I was evaluated by believed what I had to say but had no idea/diagnosis what was wrong with me.    And the funny thing I was hysterical because my life was being taken away from me due to pain.  Keep writing I enjoy reading what you write. 

Try Functional Medicine, look into the root cause of the issue, not trying to figure out a diagnosis from a cluster of symptoms....

[camoman1234]

6 hours ago, jmj11 said:

One of a hundred things wrong with healthcare, knowing the unknown and listening to what the patient is saying: Blog Post: The Black Matter of Medicine.

Great read! I hope you keep seeking answers. Never give up. I agree that if the doctors and other providers don't have a name for a "symptom or symptoms" then they deem it not real which is such a ignorant thing anyone could do. One should learn from past history and not keep repeating it by this manner. I would encourage you to look into further testing such as food sensitivities (we do eat all day ever day; leaky gut/leaky brain/leaky liver), heavy metals, mold, infectious/stool (CMV, EBV, tick borne, parasites, bacteria), dental (amalgam, cavitations from root canals or improper pulled teeth) would be a great start. Functional Medicine and Biological Dentistry could help you. Duckduckgo search engine my afford you more answers than other search engines as well. I hope this truly does open some doors and you find help. You are always welcome to PM me as well. Keep up the writing. I truly enjoyed reading that. 

[jmj11]

On 5/11/2020 at 7:37 PM, camoman1234 said:

Great read! I hope you keep seeking answers. Never give up. I agree that if the doctors and other providers don't have a name for a "symptom or symptoms" then they deem it not real which is such a ignorant thing anyone could do. One should learn from past history and not keep repeating it by this manner. I would encourage you to look into further testing such as food sensitivities (we do eat all day ever day; leaky gut/leaky brain/leaky liver), heavy metals, mold, infectious/stool (CMV, EBV, tick borne, parasites, bacteria), dental (amalgam, cavitations from root canals or improper pulled teeth) would be a great start. Functional Medicine and Biological Dentistry could help you. Duckduckgo search engine my afford you more answers than other search engines as well. I hope this truly does open some doors and you find help. You are always welcome to PM me as well. Keep up the writing. I truly enjoyed reading that. 

I think if you are suggesting that I personally looking into these alternative explanations for my (one illustration and only a minor point in the article) symptoms, that I don't think you understood my story. We know what  has caused my symptoms. It is well known and established that living in a state of uremia can cause neurological damage. The mechanism of that damage is poorly understood and attributed to some unknown neuro-toxin produced in the state of uremia. There is also no reliable treatment for what I have except renal transplantation or if the native kidneys return to near normal functioning. My point was the gross lack of curiosity among my healthcare providers, save the one PA.. It would be absurd for me to think that a dental amalgam was causing my neuromotor disorder when I was unknowingly walking around with a BUN of 165 and a creatinine of 14, not to mention a potassium of 7 for weeks. For some of my patients, which I've alluded to, they have truly had not answers and I do think something going on within that Dark Matter of medicine, of which we don't fully understand. I do understand why these patients start grasping for unproven theories for their answers, which is equally a travesty for many and would be best left said as "we don't know" but with a mind of curiosity and compassion.

[DogLovingPA]

Thank you for the reminder that next time I think to myself "omg this pt is crazy" that maybe I should stop and listen to the patient.

[camoman1234]

8 hours ago, jmj11 said:

I think if you are suggesting that I personally looking into these alternative explanations for my (one illustration and only a minor point in the article) symptoms, that I don't think you understood my story. We know what  has caused my symptoms. It is well known and established that living in a state of uremia can cause neurological damage. The mechanism of that damage is poorly understood and attributed to some unknown neuro-toxin produced in the state of uremia. There is also no reliable treatment for what I have except renal transplantation or if the native kidneys return to near normal functioning. My point was the gross lack of curiosity among my healthcare providers, save the one PA.. It would be absurd for me to think that a dental amalgam was causing my neuromotor disorder when I was unknowingly walking around with a BUN of 165 and a creatinine of 14, not to mention a potassium of 7 for weeks. For some of my patients, which I've alluded to, they have truly had not answers and I do think something going on within that Dark Matter of medicine, of which we don't fully understand. I do understand why these patients start grasping for unproven theories for their answers, which is equally a travesty for many and would be best left said as "we don't know" but with a mind of curiosity and compassion.

Don't know your entire story and frankly sounds like you would never allow "alternative medicine" to help you since there is "no proof" of it. Living in a state of uremia is from a cluster of symptoms, we just put a fancy name to it (a diagnosis) but not is the root cause(s). Root causes and basic functional approaches was all I was talking about, not treating symptoms and trying to optimize, not normalize your body (i.e. a Vit D level 40 is normal, but not optimal to most peoples health). I didn't even mention about genetic testing, SNPs, etc. but sounds like we will get no where with this discussion so I will end it here. The best of luck to you!

Edited May 15, 2020 by camoman1234

[camoman1234]

3 hours ago, DogLovingPA said:

Thank you for the reminder that next time I think to myself "omg this pt is crazy" that maybe I should stop and listen to the patient.

I agree. That is why I see Functional Medicine as solving these problems, not just maintaining a disease. History and time is very important to eliminating a disease. "Crazy people have issues too."

[jmj11]

58 minutes ago, camoman1234 said:

Don't know your entire story and frankly sounds like you would never allow "alternative medicine" to help you since there is "no proof" of it. Living in a state of uremia is from a cluster of symptoms, we just put a fancy name to it (a diagnosis) but not is the root cause(s). Root causes and basic functional approaches was all I was talking about, not treating symptoms and trying to optimize, not normalize your body (i.e. a Vit D level 40 is normal, but not optimal to most peoples health). I didn't even mention about genetic testing, SNPs, etc. but sounds like we will get no where with this discussion so I will end it here. The best of luck to you!

I have renal failure from light chain deposition from cancer, multiple myeloma. Please, know your patient before you make a diagnosis on line. Knowing what I've been through this past year, in the throes of death for much of the year, I find comments from people like you who have no clue what you are talking about when you address my case as highly offensive. I was making a point in my original posting about how we need to take patients seriously. I regret using one personal example from my own experience to illustrate the point about listening, not knowing that someone would not "listen" to my personal story and then exploit it so they could market their own alternative agenda. There is nothing more offensive to a cancer patient than having someone try to profoundly oversimplify their nightmare to suit their own worldview.

Edited May 15, 2020 by jmj11

[FiremedicMike]

7 hours ago, camoman1234 said:

Don't know your entire story and frankly sounds like you would never allow "alternative medicine" to help you since there is "no proof" of it. Living in a state of uremia is from a cluster of symptoms, we just put a fancy name to it (a diagnosis) but not is the root cause(s). Root causes and basic functional approaches was all I was talking about, not treating symptoms and trying to optimize, not normalize your body (i.e. a Vit D level 40 is normal, but not optimal to most peoples health). I didn't even mention about genetic testing, SNPs, etc. but sounds like we will get no where with this discussion so I will end it here. The best of luck to you!

In a thread created to say "listen to your patient, don't automatically dismiss what they're telling you", you started your post by essentially saying "I really didn't listen to your story but.." and then proceeded to give a rather condescending opinion on what he should or should not have done.

Fascinating.

 

[camoman1234]

10 hours ago, jmj11 said:

I have renal failure from light chain deposition from cancer, multiple myeloma. Please, know your patient before you make a diagnosis on line. Knowing what I've been through this past year, in the throes of death for much of the year, I find comments from people like you who have no clue what you are talking about when you address my case as highly offensive. I was making a point in my original posting about how we need to take patients seriously. I regret using one personal example from my own experience to illustrate the point about listening, not knowing that someone would not "listen" to my personal story and then exploit it so they could market their own alternative agenda. There is nothing more offensive to a cancer patient than having someone try to profoundly oversimplify their nightmare to suit their own worldview.

Sorry for your diagnosis of MM, I hope you are doing well. Also, sorry you misinterpreted my words, I understand it is hard to get a true context of one’s words from a quick comment. I made a comment on general functional health NOT on treatment or “a diagnosis online”. That is where you might be taking the wrong way. Everyone should be taking a functional approach to their health: a clean diet (organic, local, minimally processed, etc), cut out or change as many exposures to chemicals as you can from your daily life (from dryer sheets to candles to soaps to air purifier, etc), look at genetics and SNPs, go to a Western PCP, but also utilize others such as chiro, massage, meditation, acupuncture, personal trainer, etc so you can get a well rounded look at your body. I don’t see how this “alternative agenda” is a bad one? Please correct me if I am wrong (supporting local clean farmers/restaurants, exercise, optimizing vitamin levels (due to our food not being nutrient dense), having a clear/as stress-free brain as possible. I take your rude comment on my agenda personal as this is what is wrong with Western medicine. I make a comment about TRUE health and you lash at me about having some agenda like I am Hilter. Come on man, you are wise enough to think outside the box and know that this is NOT a “alternative agenda.” These tips I gave you can help pre and post cancer, disease, etc. This is not treating a disease, it is healing the body. That is the difference. Again, I am sorry you took my words the wrong way and hope you can tell I am coming from a place of love and care, nothing else.  

P.S. there are two sayings I like; “What gets measured gets managed” and “Genes load the gun but your environment pulls the trigger”

[GetMeOuttaThisMess]

2 minutes ago, camoman1234 said:

Sorry for your diagnosis of MM, I hope you are doing well. Also, sorry you misinterpreted my words, I understand it is hard to get a true context of one’s words from a quick comment. I made a comment on general functional health NOT on treatment or “a diagnosis online”. That is where you might be taking the wrong way. Everyone should be taking a functional approach to their health: a clean diet (organic, local, minimally processed, etc), cut out or change as many exposures to chemicals as you can from your daily life (from dryer sheets to candles to soaps to air purifier, etc), look at genetics and SNPs, go to a Western PCP, but also utilize others such as chiro, massage, meditation, acupuncture, personal trainer, etc so you can get a well rounded look at your body. I don’t see how this “alternative agenda” is a bad one? Please correct me if I am wrong (supporting local clean farmers/restaurants, exercise, optimizing vitamin levels (due to our food not being nutrient dense), having a clear/as stress-free brain as possible. I take your rude comment on my agenda personal as this is what is wrong with Western medicine. I make a comment about TRUE health and you lash at me about having some agenda like I am Hilter. Come on man, you are wise enough to think outside the box and know that this is NOT a “alternative agenda.” These tips I gave you can help pre and post cancer, disease, etc. This is not treating a disease, it is healing the body. That is the difference. Again, I am sorry you took my words the wrong way and hope you can tell I am coming from a place of love and care, nothing else.  

 

P.S. there are two sayings I like; “What gets measured gets managed” and “Genes load the gun but your environment pulls the trigger”

 

And we still lose 100% of our patients at some point or another.

[camoman1234]

3 hours ago, FiremedicMike said:

In a thread created to say "listen to your patient, don't automatically dismiss what they're telling you", you started your post by essentially saying "I really didn't listen to your story but.." and then proceeded to give a rather condescending opinion on what he should or should not have done.

Fascinating.

 

Please don't be a little Sh*t stirrer. You can see I said " Don't know your entire story". I think it would be rude to ask him about his medical history over the computer, that is why I did not (so that doesn't mean I was not listening to him, just trying to be respectful). Giving someone more options (NOT opinion) to better health is a bad thing? I think you might have your medical practice backwards if that is condescending... we are here to first do no harm and make people better in health...a opinion would be telling him that if he ate clean, and meditated 12 times a day he would not have gotten cancer. That is something you are basically stating I did. If you don't have a true comment please don't come into threads and stir sh*t. 

[camoman1234]

4 minutes ago, GetMeOuttaThisMess said:

And we still lose 100% of our patients at some point or another.

I agree! Quality of life is much more important than quantity (in my personal opinion). I would rather live 5 good years then 10 bad years. 

[turnedintoamartian]

The idea that science based medicine doesn’t explore the cause of disease is unfounded. 
Listening and believing your patient should not be equated with a lower standard of evidence for disease, diagnostics, and treatment.

 

[camoman1234]

On 5/16/2020 at 7:58 AM, turnedintoamartian said:

The idea that science based medicine doesn’t explore the cause of disease is unfounded. 
Listening and believing your patient should not be equated with a lower standard of evidence for disease, diagnostics, and treatment.

 

It explores the disease that needs a pill or intervention. Doesn't explore other aspects such as nutrition (we got so much of that in PA school), whole body approach, "alternative" therapies that aren't lead by the pharma industry. I was never told even once about prevention on HTN, just how to lower it and other risk factors. These are just simple things that are missed. As well as the body is put into different "boxes" which is totally not true. We have different specialties for everything. You don't think your diabetes is affecting your joints or your gut is affecting your depression? This is what I mean. I think you are missing the point or haven't researched functional medicine to understand it fully. Let me know if you have questions and I will be happy to answer then or point you in the best direction I can. 

[turnedintoamartian]

I genuinely appreciate the offer but I have been quite exposed to functional medicine and will simply say: Pass.

[True Anomaly]

In the interest of not having this thread further devolve, am locking it

If you wish to continue discussions about topics raised on this thread, please continue it in another thread