You probably have an autoimmune disease...

[SWAlexander]

FYI = For Your Information

dummy me. Thanks

 

[SWAlexander]

sorry, I don't understand the acronym "FYI".

dummy me. Thanks

...it´s ok. maybe some

 

[ChookityPop]

There is another possibility. All genes (RAW DATA), RS and SNP (single nucleotide polymorphism) (SNPedia), can be discovered by taking an ancestry DNA test.
DNA testing companies are listed: https://promethease.com/

Very interesting. Is there one of the listed companies you would recommend beginning with to look for autoimmune disease?

 

[SWAlexander]

Very interesting. Is there one of the listed companies you would recommend beginning with to look for autoimmune disease?

I don´t advertise ancestry DNA tests. Not everybody would like to know about their mutations.
It is only for people who would like to know when doctors don’t find a diagnosis. It is not fun or a game.

For example: in 2010 my husband was ill for almost one year. Doctors couldn’t find why he has extreme iron deficiency. The only diagnosis they came up with was Parkinson's.
I ordered a DNA and 6 weeks later I was able to gather the most significant gene-markers
and presented to the cancer center.

The doctors from the cancer center and neurology were skeptical at first. However, the tests confirmed the genetic and epigenetic markers.
6 weeks later the diagnosis was: Cancer at the trachea, colon and liver cancer and latent TB.

 

[SWAlexander]

BTW. I have the same test. This is the reason I know sometimes more than doctors, most of all what diagnosis is right or wrong. Unfortunately, doctors don´t like to confirm what you provide, They like to invent the wheel again, testing testing, new appointments - this way they make more money.

I'm not good n deciphering Blood test abbreviations.

 

[georgina699]

There is another possibility. All genes (RAW DATA), RS and SNP (single nucleotide polymorphism) (SNPedia), can be discovered by taking an ancestry DNA test.
DNA testing companies are listed: https://promethease.com/

all those dna health tests are accurate for EUROPEANS(WHITES) ONLY (European males having the highest accuracy)

If you're a woman of color, don't waste your money honey

 

[hapl808]

They like to invent the wheel again, testing testing, new appointments - this way they make more money.

You'll find the same in most countries where healthcare isn't for profit. In my opinion, doctor's hold their egos more closely than even their considerable bank accounts. So the financial aspect may exacerbate things depending on the physicians, almost ALL physicians have planet sized egos and cannot admit that any patient might know anything about anything.

 

[sometexan84]

Blood tests from 2 weeks ago, but no explanation and diagnosis.
In my case:
CRP high, ANA high, Factor 2 (wild type), Factor 5 (wild type), very low vita D, high B12, low Cortisol, Urin Albumin 100. The list is long, still, doctors cannot come to a conclusion.

Sjögren’s syndrome (SS) - if you haven't already crossed this off the list, I'd check for this.

- Usually high ANA speckled pattern
- High CRP is common
- ACTH and cortisol low in SS as well

Also, SS appears to be a comorbidity in ME/CFS. There was one study that found it in 82% of ME/CFS... though that just seems too high to be true....

You should prob test for SS-A (Ro) and SS-B (La) antibodies

Infections (seen in SS): EBV, Coxsackie

 

[sometexan84]

2015: strep infection treated with AB, six weeks later first outbreak of full-blown psoriasis guttate -> ME-symptoms disappeared promptly and we're gone completely during psoriasis outbreak

Weird that you got the psoriasis AFTER you had taken antibiotics. I took antibiotics after my psoriasis, cause that's the reasons I got ASO test, which revealed the Streptococcus Pyogenes... very high.

And off that the symptoms went away during.

 

[SWAlexander]

Sjögren’s syndrome (SS) - if you haven't already crossed this off the list, I'd check for this.

- Usually high ANA speckled pattern
- High CRP is common
- ACTH and cortisol low in SS as well

Also, SS appears to be a comorbidity in ME/CFS. There was one study that found it in 82% of ME/CFS... though that just seems too high to be true....

You should prob test for SS-A (Ro) and SS-B (La) antibodies

Infections (seen in SS): EBV, Coxsackie

Great. thanks.
I was tested for Coxsackie - negative. But Herpes was active.
Can you tell me the Lab-code for SS-A (Ro) and SS-B (La) antibodies? Maybe I was?

 

[SWAlexander]

Weird that you got the psoriasis AFTER you had taken antibiotics. I took antibiotics after my psoriasis, cause that's the reasons I got ASO test, which revealed the Streptococcus Pyogenes... very high.

And off that the symptoms went away during.

I have had psoriasis for 60 years. For me, the pattern, when psoriasis disappears, had nothing to do with antibiotics. My psoriasis didn´t even disappear, after having 6 weeks of vancomycin.
What helps me is being for about 3 weeks on the ocean with high sun intercity and saltwater. that erasedes psoriasis completely and often for months.
It is, in my case, D deficiency and low cortisol. I´m taking in the winter months 2 x a week 20 000 ng vit D and my vit. D level remains low. I have partial relief if I´m on a higher dose of prednisone, but not for long.

 

[sometexan84]

Great. thanks.
I was tested for Coxsackie - negative. But Herpes was active.
Can you tell me the Lab-code for SS-A (Ro) and SS-B (La) antibodies? Maybe I was?

Can I ask which lab you used for Coxsackie?

You should be able to find lab codes for whichever lab you use, can just Google Sjögren’s syndrome lab test... or something like that.

 

[SWAlexander]

Thanks.
The oncology I´m consulting has its own lab.

 

[roller]

What helps me is being for about 3 weeks on the ocean with high sun intercity and saltwater.

focus online reported, that washing with vinegar water (i think 2 tablespoons on 1 liter water) can entirely replace showering with "soaps", long term.
it often helps with sensitive skin.
vinegar eliminates all bacteria, and only they are cause of the smell, i understand.
skin problems were mostly caused by the soaps, the doctor said. even when they are labelled for very sensitive skins, without allergens etc.

 

[sometexan84]

Thanks.
The oncology I´m consulting has its own lab.

I can't speak to how reliable that is, but I can say that ARUP labs is reliable.

In ME/CFS, the type of Coxsackie infection is different, so the lab you use does matter. It's the difference in testing for acute infection vs persistent infection.

 

[SWAlexander]

I can't speak to how reliable that is, but I can say that ARUP labs is reliable.

In ME/CFS, the type of Coxsackie infection is different, so the lab you use does matter. It's the difference in testing for acute infection vs persistent infection.

Unfortunately, I have no access to the ARUP labs because I live now in Germany.
But I will find a lab here. I have already so many tests which I will compare the results with the Mayo Clinic Cascade for reference: https://www.mayocliniclabs.com/it-mmfiles/Connective_Tissue_Disease_Cascade__CTDC_.pdf
I have Psoriasis and possible Dermatomyositis, also a chronic inflammatory disease of the skin.
Thanks for your good information.

 

[Lara]

@SWAlexander Thank you and now I see it with the second page that you posted. If I am reading it correctly then your ACTH and Cortisol are both very low and basically undetectable! You should remove your personal info though to protect your privacy. Was that test from 2007 or it is current? I have a very confusing situation where my ACTH has been undetectable on multiple tests so I have to remain on hydrocortisone.

hi!

I'm new and may I please know if u had weird tingling sensations in ur body along with the muscle weakness?

thanks for answering

Lara

 

[SWAlexander]

hi!

I'm new and may I please know if u had weird tingling sensations in ur body along with the muscle weakness?

thanks for answering

Lara

"weird tingling sensations in ur body along with the muscle weakness"
yes and weakness in the arms as well.

 

[sometexan84]

Unfortunately, I have no access to the ARUP labs because I live now in Germany.
But I will find a lab here. I have already so many tests which I will compare the results with the Mayo Clinic Cascade for reference: https://www.mayocliniclabs.com/it-mmfiles/Connective_Tissue_Disease_Cascade__CTDC_.pdf
I have Psoriasis and possible Dermatomyositis, also a chronic inflammatory disease of the skin.
Thanks for your good information.

I would get w/ your fellow German CFS'ers (if you haven't already) like @Martin aka paused||M.E. and @Badpack maybe collaboration will help you guys more w/ labs and acquiring drugs and supplements and what not.

 

[Badpack]

I would get w/ your fellow German CFS'ers (if you haven't already) like @Martin aka paused||M.E. and @Badpack maybe collaboration will help you guys more w/ labs and acquiring drugs and supplements and what not.

For the foreseeable future, i will retire from posting or answering anything on phoenix rising anymore. If you want to contact me, you know the other ways we have