Cfs/me part 1-2-3 -4 current condition, surgeries, medications

pamojja

Senior Member
Messages
2,790
Location
Austria
It's intriguing how such details can already determine later life. Mother actually wanted a home birth, GP declined. How such small details can change the course.
in the states, I doubt you could find a GP who would ever agree to such a thing.

In those days, GPs routinely did home-visits. In this case, his refusal and the hospital birth did precondition in my childhood innumerable infectious diseases. And the irony - too many home-visits by this GP.

It's sort of moot considerations: without hospital care I probably wouldn't have survived the pneumonia.
But without the hospital stress causing negligence, I probably wouldn't have suffered pneumonia in the first place. The only positive about my bad state of health as toddler: I've precautionary, got only the bare minimum of vaccines. Mumps and Measles childhood diseases I withstood better than my sister, with. But that's probably also, because I already was expert in enduring pains and fevers from early childhood.

Now my sister is too disabled to work, with a dozen medication and still worsening on multiple issues. While I still can work part-time, and experienced remission of debilitating symptoms from 3 chronic diseases. My only medication is LDN. Destiny - what a strange thing.
 
Last edited:
Messages
88
Great, you kept them. With lab-tests, it's important to know, that normal range is usually a statistical construct only. Thereby, the lab calculates normal ranges by subtracting the upper and lower 2.5%, considered too high and too low, and determines the middle 95% as normal. From all their tested result. With the caveat, that most people get their labs tested rather sick, than healthy.

For determining rare MDs take reverence ranges out of literature, where subsequent lowest mortality was found, or out of integrative and functional clinical medicine practice. Such optimal reference ranges are what I compared it too, and thereby found problems, no MD would even mention. Because their education didn't really prepare them to, nor do they usually have the time to communicate disease prevention. Easier than treatment.

For example, my postprandial blood-glucose was consistently pre-diabetic (above 140 mg/dl), and adjusting diet accordingly could prevent a sure T2D.

As you know, individual lab-tests are only a momentary picture, and can fluctuate widely. Then there are the complexities, for example with other issues, where out of range values could momentarily even be beneficial. Individual lab errors also do occur. And due to biochemical individuality, optimal ranges still might not be your optimal ranges. You seem to be are aware too, that some values have little meaning, as with B12, if already supplementing, or serum magnesium. Where, for example, MMA or RBC magnesium, testing gives more predictive values.

To overcome all such shortcomings, one better documents all repeated lab-test in a spreadsheet, like that:

Code:
  - longevity range | optimal | normal       | Jul | Apr | - |

Ferritin |  119-200 |   50-90 |  24-336 ng/m | 313 | 355 | - |

Also ordering the test according to body or metabolic system, does give clues, where underlying problems need to be addressed. And as time passes, one can correlate interventions (supplements, life-style changes and medication) to improving or worsening lab markers. Especially with changes, which would take too long, and aren't felt through symptoms.

In another post, you mentioned:


It took me years to find a GP who at least tested more than usual, following most of my suggestions. Others already felt offended by such. Where I live, only MDs privately insured or paid out of the pocket would do. The 2 private MDs I trialled, didn't. And in the long term wouldn't be affordable for my low income.

Also, my former life-experiences with medical care taught me the hard way, mistakes do happen. Which only the patient has to bear with the bad-health consequences. One still needs to go to MDs, at least for diagnostics.

You are in a different situation. And my approach to monitoring lab-tests might not be feasible or practical for you. In my case, it was the means to affect multiple unlikely remissions. With the slight aid of MDs, without trusting one who can spend only minutes on my case, or temporary results only. I wouldn't even trust myself with so little consideration.

Feel free to do, as your situation allows. My approach does take time and efforts in self-education.
Hi pamojja
I am working on getting a referral to try for the second time to see an endocrinologist, the last time i had a referral it had a one year waiting list!
And I canceled it.
Hopefully this time it will only be a few months wait?

I understand everyone's body is different , what might be normal for the majority of most people is completely wrong with me .

I am very lucky my daughter is brillant in healthcare data analytics. And we constantly analyze and debate our symptons and our test results.

I am not rich either , so we find lower cost alternatives too.
If you can list certain test of mine you would like to see specificaly I can post a three year graph of them if I have them, some test are new and I only have limited results.

I do have a lot more test results on different things that have been tested in the last 3 years, some are from low income mobile facilties but the tests are accurate.
Thank You
 
Messages
88
In those days, GPs routinely did home-visits. In this case, his refusal and the hospital birth did precondition in my childhood innumerable infectious diseases. And the irony - too many home-visits by this GP.

It's sort of moot considerations: without hospital care I probably wouldn't have survived the pneumonia.
But without the hospital stress causing negligence, I probably wouldn't have suffered pneumonia in the first place. The only positive about my bad state of health as toddler: I've precautionary, got only the bare minimum of vaccines. Mumps and Measles childhood diseases I withstood better than my sister, with. But that's probably also, because I already was expert in enduring pains and fevers from early childhood.

Now my sister is too disabled to work, with a dozen medication and still worsening on multiple issues. While I still can work part-time, and experienced remission of debilitating symptoms from 3 chronic diseases. My only medication is LDN. Destiny - what a strange thing.
Hi
Do you and your sister have similar conditions ?
Ldn was only approved here in 1984
Here we cant get some medications due to the FDA not approving them so our Doctors are also limited to treatment options .
A friend of mine was in stage four cancer with little hope of living,
They gave him six months at most.
He found a Dr that was willing to try an experimental procedure, he had to take it at her home since it was not legal to do in an office or medical facility.
It was a certain arsenic dose through an iv. Hes is still alive and doing good 3 years latter.
 

pamojja

Senior Member
Messages
2,790
Location
Austria
Do you and your sister have similar conditions ?

No overlaps. Chronic degenerative diseases for both.

While she trusted her MDs with invasive surgeries and every medication. I declined all, after reviewing risks and marginal benefits.

Here we cant get some medications due to the FDA not approving them so our Doctors are also limited to treatment options.

LDN I have to get oversea's too.
 
Last edited:
Messages
88
Endocrinologists were the least helpful, in my case. Wish you good luck.



Great to hear, you're already given it a deep dive.
Hi
I apologize I gave you the wrong name for the referral , I just caught it when I read what the Dr said in the referral.
Dr said I am suggesting a nephrology consult to make sure we are doing this as best we can for him.

I dont know where I came up with
Endocrinologists
 
Back