Meryl's journal of treatments, tests etc.

[merylg]

Today I saw my Immunologist/Allergist/Physician, who I have not seen since 2009. My Rheumatologist ran out of ideas & felt I should go back to see the Immuno.

My Immuno's overall impression is that I have a Connective Tissue Disorder of some kind!!! (and that in 5 yrs time, we will be able to sequence my whole genome & find out what it is!!! )

He is pleased I am seeing the Neurogenetics & General Genetics Clinics through the public hospital

He noted my insulin resistance/fatty liver/difficulty losing weight due inability to exercise much with fatigue & arthritis issues. He thought I may feel better on Diaformin XR (Diabex XR, Metformin HCl) so I am going to try it (500 mg one with dinner) if OK after 2-3 wks increasing to two a day with dinner.

I have a HIDA nuclear medicine scan tomorrow http://www.mayoclinic.com/health/hida-scan/MY00320
so I will hold off starting any drugs til after that. It's a scan to monitor function of liver biliary tract & gall bladder function. This test was ordered by my GP who thinks I may have sluggish/sludgy gall bladder.

My Immuno ordered these tests today:
IgE RAST moulds x 4
Chromatin
ANA/ENA/RF/dsDNA/ACE
MSU & casts, CK
IgGAM, IgG subclasses
Amylase, Lipase
EPG I/E serum, urine
Serum B2M
Tryptase
Chromogranin A
FBE, ESR, CRP
ASOT, DNASE B
B27
TBNK subsets

(A hospital Rheumy I saw last week as an inpatient, said I had Fibromyalgia...with all the classic tender points. He also wrote up that I had Sjogren's Syndrome...regardless that my tests for SS are all negative. He prescribed me Nortryptiline 10 mg once/day and recommended that PACING helps a lot of FM patients ) I have tried Nortryptiline & Amytryptiline low dose before. Am willing to try again...after my HIDA scan. One drug at a time...sigh...

My Immuno said YES it IS possible to have Sjogren's Syndrome but test negative.
And YES it IS also possible to have Lupus but test negative for ANA.

 

[MishMash]

Your story sounds very familiar. I wish you the best of luck. Take care of yourself.

 

[AFCFS]

He noted my insulin resistance/fatty liver/difficulty losing weight due inability to exercise much with fatigue & arthritis issues. He thought I may feel better on Diaformin XR (Diabex XR, Metformin HCl) so I am going to try it (500 mg one with dinner) if OK after 2-3 wks increasing to two a day with dinner.

Did your doc mention the rationale behind Metformin use? I have read that it may help with pre-diabetes; National Diabetes Information Clearinghouse (NDIC) Insulin Resistance and Prediabetes. But the whole notion of diabetes is also a bit of a riddle with the testing level set for diagnosis; Metastudy Confirms Metformin Appropriate Treatment for Prediabetes

Bottom line, I am wondering if it does help with those that may have "insulin resistance/fatty liver/difficulty losing weight due inability to exercise much with fatigue & arthritis issues." For many, it would be nice to get out and exercise, but have not been able to; so that does put a kink in one of the life-style changes that may help to offset thing like insulin resistance and fatty liver. If metformin worked in that capacity it may be nice, especially if it could later be given up if one were able to progress along.

 

[GcMAF Australia]

What does a chromatin test involve and what information does it give??

 

[merylg]

What does a chromatin test involve and what information does it give??

It was hard to read the writing...but I think this is the test:

"Chromatin antibodies

• Mainly used to diagnosis drug-induced lupus
• 50-90% of SLE patients have these antibodies
• Linked to proteinuria, glomerulonephritis, and disease activity
• May be found in Sjögren syndrome and APS "
  
  http://www.arupconsult.com/Topics/SLE.html

 

[merylg]

Did your doc mention the rationale behind Metformin use? I have read that it may help with pre-diabetes; National Diabetes Information Clearinghouse (NDIC) Insulin Resistance and Prediabetes. But the whole notion of diabetes is also a bit of a riddle with the testing level set for diagnosis; Metastudy Confirms Metformin Appropriate Treatment for Prediabetes

Bottom line, I am wondering if it does help with those that may have "insulin resistance/fatty liver/difficulty losing weight due inability to exercise much with fatigue & arthritis issues." For many, it would be nice to get out and exercise, but have not been able to; so that does put a kink in one of the life-style changes that may help to offset thing like insulin resistance and fatty liver. If metformin worked in that capacity it may be nice, especially if it could later be given up if one were able to progress along.

Thanks for the links. My Endocrinologist also wants me on a diabetic diet already as I am in that Insulin Resistance category & my fasting glucose was at the upper limit of the ref range. I have weight gain around the middle, fatty liver & family history of Type 2 Diabetes. With fatigue & arthritis she could see it unlikely I would be able to exercise the weight off.
The Immuno's rationale was that I might feel better & feel a little less hungry, by being on the medication (Metformin HCl).

 

[heapsreal]

Did your doc mention the rationale behind Metformin use? I have read that it may help with pre-diabetes; National Diabetes Information Clearinghouse (NDIC) Insulin Resistance and Prediabetes. But the whole notion of diabetes is also a bit of a riddle with the testing level set for diagnosis; Metastudy Confirms Metformin Appropriate Treatment for Prediabetes

Bottom line, I am wondering if it does help with those that may have "insulin resistance/fatty liver/difficulty losing weight due
inability to exercise much with fatigue & arthritis issues." For many, it would be nice to get out and exercise, but have not been able to; so that does put a kink in one of the life-style changes that may help to offset thing like insulin resistance and fatty liver. If metformin worked in that capacity it may be nice, especially if it could later be given up if one were able to progress along.

Metformin has help with weightloss as well as cholesterol. I think there is a strong overlap with insulin resistance , adrenal fatigue/dysfunction, thyroid, which affects weight.