mattyb
Moderator
- Messages
- 833
Hello everyone,
Lately there has been lots of productive discussion, but I believe we need to be more organized in order to further our understanding of the variety of disorders and symptoms that affect people here.
I have created a very basic anonymous survey that members here can take to outline their condition, the suspected causes of these conditions, their symptoms, the treatments they have tried out, the efficacy of these treatments and the significant results from any lab tests (blood, hair, urine, stool, and gases). This is by no means comprehensive or anything like that, but it may help us pin things down. I will post a spreadsheet so anyone can look at the survey results as responses start coming in, and I will update it regularly. I will also analyze the data myself to see if I can find any trends. I am thinking cluster analysis might be acceptable, but we will see.
Just keep in mind this is not an official study, and I can't legally guarantee your results are kept private (although I will try my best). By doing this survey, you are implicitly agreeing that you won't hold myself legally responsible for any actions that happen as a result of doing this survey.
This is a very basic survey, with many open fields, and as such requires participants to be consistent, brief, and direct with their entries. Some pointers:
- Keep all responses to two words or less, if possible, and in lower case.
- Use proper spelling and medical terminology when possible. This will save me a ton of effort if I don't have to go back and edit responses to make them consistent when doing statistical analyses. E.g. "low libido" instead of "no sex drive", "urticaria" instead of "hives", etc.
- Use full words, not abbreviations.
- Leave fields blank when necessary.
- If you don't know the answer to something (like if a symptom resolved itself spontaneously) just write "Unknown".
- When writing in disorders or symptoms, write in the disorders/symptoms from most to least severe/controlled/life-affecting.
- Include lab tests from when you were actually sick, not from when you were completely treated/healthy.
- Do not write values into the labs, as everyone lab uses different terms (e.g. mmol/L vs ng/dL). We will stick to basic things like "high progesterone", "low iron", "high cortisol".
- Only include lab values that are out of the norm or very borderline out of range (e.g. a sodium of 136 [RR: 135-145] would be borderline, and saying "low sodium" would be acceptable in that case). This will help simplify things significantly.
An example of what the survey should look like in full, using an imaginary case:
Gender: M
Duration of Significant Health Problems: 2 years
Primary Disorder: post-finasteride syndrome
Cause of Primary Disorder: finasteride
Duration of Primary Disorder: 2 years
Disorder 2: ulcerative collitis
Cause of Disorder 2: unknown
Duration of Disorder 2: 10 years
Symptom 1: low libido
Symptom 1 Resolved?: Partially
Symptom 1 Treatment: ru-486
Symptom 2: bowel movement urgency
Symptom 2 Resolved?: No
Symptom 2 Treatment:
Symptom 3: urticaria
Symptom 3 Resolved?: Yes
Symptom 3 Treatment: mattyb protocol
Blood 1: low sodium
Blood 2: high ferritin
Blood 3: high CO2
Blood 4: low iron
Hair 1: high calcium
Hair 2: high calcium
hosphorous
Hair 3: low potassium
Hair 4: high sodiumotassium
Hair 5: high lead
Urine 1: high succinate
Stool 1: high histamine
Blood gas 1: high carbon dioxide
Blood gas 2: low oxygen
Blood gas 3: high carboxyhemoglobin
Blood gas 4: low bicarbonate
The survey can be found here: https://goo.gl/forms/ihkchlTFwI0L6rgn2
Good luck and thanks!
Lately there has been lots of productive discussion, but I believe we need to be more organized in order to further our understanding of the variety of disorders and symptoms that affect people here.
I have created a very basic anonymous survey that members here can take to outline their condition, the suspected causes of these conditions, their symptoms, the treatments they have tried out, the efficacy of these treatments and the significant results from any lab tests (blood, hair, urine, stool, and gases). This is by no means comprehensive or anything like that, but it may help us pin things down. I will post a spreadsheet so anyone can look at the survey results as responses start coming in, and I will update it regularly. I will also analyze the data myself to see if I can find any trends. I am thinking cluster analysis might be acceptable, but we will see.
Just keep in mind this is not an official study, and I can't legally guarantee your results are kept private (although I will try my best). By doing this survey, you are implicitly agreeing that you won't hold myself legally responsible for any actions that happen as a result of doing this survey.
This is a very basic survey, with many open fields, and as such requires participants to be consistent, brief, and direct with their entries. Some pointers:
- Keep all responses to two words or less, if possible, and in lower case.
- Use proper spelling and medical terminology when possible. This will save me a ton of effort if I don't have to go back and edit responses to make them consistent when doing statistical analyses. E.g. "low libido" instead of "no sex drive", "urticaria" instead of "hives", etc.
- Use full words, not abbreviations.
- Leave fields blank when necessary.
- If you don't know the answer to something (like if a symptom resolved itself spontaneously) just write "Unknown".
- When writing in disorders or symptoms, write in the disorders/symptoms from most to least severe/controlled/life-affecting.
- Include lab tests from when you were actually sick, not from when you were completely treated/healthy.
- Do not write values into the labs, as everyone lab uses different terms (e.g. mmol/L vs ng/dL). We will stick to basic things like "high progesterone", "low iron", "high cortisol".
- Only include lab values that are out of the norm or very borderline out of range (e.g. a sodium of 136 [RR: 135-145] would be borderline, and saying "low sodium" would be acceptable in that case). This will help simplify things significantly.
An example of what the survey should look like in full, using an imaginary case:
Gender: M
Duration of Significant Health Problems: 2 years
Primary Disorder: post-finasteride syndrome
Cause of Primary Disorder: finasteride
Duration of Primary Disorder: 2 years
Disorder 2: ulcerative collitis
Cause of Disorder 2: unknown
Duration of Disorder 2: 10 years
Symptom 1: low libido
Symptom 1 Resolved?: Partially
Symptom 1 Treatment: ru-486
Symptom 2: bowel movement urgency
Symptom 2 Resolved?: No
Symptom 2 Treatment:
Symptom 3: urticaria
Symptom 3 Resolved?: Yes
Symptom 3 Treatment: mattyb protocol
Blood 1: low sodium
Blood 2: high ferritin
Blood 3: high CO2
Blood 4: low iron
Hair 1: high calcium
Hair 2: high calcium
hosphorousHair 3: low potassium
Hair 4: high sodium
otassiumHair 5: high lead
Urine 1: high succinate
Stool 1: high histamine
Blood gas 1: high carbon dioxide
Blood gas 2: low oxygen
Blood gas 3: high carboxyhemoglobin
Blood gas 4: low bicarbonate
The survey can be found here: https://goo.gl/forms/ihkchlTFwI0L6rgn2
Good luck and thanks!
