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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I've was diagnosed with CFIDS in September. Is this what you were asking, sorry maybe I don't understand "with what have you been diagnosed"
I will write up the list of tests this weekend for everyone, sorry I work and and rest after work as much as possible.
Hi Leokitten,
As someone new to CFS with initial onset 2/2012, started treatment 5/2013, I am grateful to any assistance you can provide as far as interpretation of the scientific literature around this disease. I look forward to reading your posts.
Regarding the following:
I think we may be seeing the same CFS specialists so I hope I've got everything covered test wise but I'd be interested in seeing your list of must haves.
It would be good if you could list the tests leokitten thanks. x
Hi Leokitten,
As someone new to CFS with initial onset 2/2012, started treatment 5/2013, I am grateful to any assistance you can provide as far as interpretation of the scientific literature around this disease. I look forward to reading your posts.
Regarding the following:
I think we may be seeing the same CFS specialists so I hope I've got everything covered test wise but I'd be interested in seeing your list of must haves.
Hi all, I quickly made a starter list of lab tests only so far (no clinical tests like tilt table, etc), please excuse me if I forgot anything I will add to it if I did:
HSV-1,2 IgM IgG
EBV VCA IgM IgG
EBV EA (R+D) IgM IgG
EBV EBNA IgM IgG
EBV PCR
HHV-6 IgM IgG
HHV-6 quant PCR (whole blood)
CMV IgM IgG
CMV PCR
Enterovirus Ab panel
Coxsackie Ab panel
Parvovirus Ab panel
Borrelia burgdorferi (Lyme) IgM IgG
Babesia microti IgM IgG
Anaplasma phagocytophila IgM IgG
Mycoplasma pneumoniae IgM IgG
Mycoplasma pneumoniae PCR
Chlamydophila pneumoniae IgA IgM IgG
Streptoccocus pneumoniae panel (14 serotypes)
Toxoplasma gondii IgM IgG
Helicobacter pylori IgM IgG
TB
Ova and parasite stool and smear
Comprehensive stool analysis (for yeast, etc)
IgG Subclasses panel
IgA Subclasses panel
ANA w/ titer
Cardiolipin antibodies IgA IgM IgG
CPK
RF
Natural Killer (NK) cell functional assay
Immunoglobulin E
TSH
Total and free T3 T4
Thyroid antibodies panel
24-hour cortisol, urine
24-hour aldosterone, urine
ACTH
Adrenal antibodies panel
Total and free testosterone (men)
LH
FSH
Prolactin
IGF-1, IGF-2
CBC w/ diff
CMP
ESR
Vitamin D, 25-Hydroxy
Fasting glucose
With what have you been diagnosed? Early diagnoses should shed light on the cause(s) of this disease.
- TSH has been decreasing quickly ever since I fell ill in January (measured many times in these months, has gone from 2.0 to now 0.7. In normal people TSH shouldn't change much at all in such a short period only slowly as you age). My free and total T3 and T4 are always in the high end of lab reference range so I seem to be becoming hyperthyroid because of this disease. Maybe this is some kind of adaptive response or dysregulation due to something else or maybe because an infection is causing some kind of thyroiditis?
- Cortisol I wish I knew before I fell ill, I want to know whether it is the disease that is causing it to be so low. It was measured twice after I fell ill in January and has just gotten lower. Also wonder if this is an adaptive response, dysregulation due to something else, or due to infection.
Did you test thyroid antibodies? It is possible to swing hypo to hyper in autoimmune thyroiditis
I think it probably is the disease causing the dysregulation as it is a fairly common finding in our population.
Infection is a good guess because infections are intricately tied to cortisol metabolism in ways that are not totally understood (at least by me!)
However, I would be wary of Diflucan because there are rare reports of adrenal inhibition (reversible) at doses as low as 200 mg.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585724/
It's amazing to me how often supposedly rare complications show up in our population!All my thyroid antibodies are negative.
The low cortisol happened months before I started taking Diflucan, but thank you for the heads up though it is a very rare complication.
It's amazing to me how often supposedly rare complications show up in our population!
I didn't mean that the Diflucan had caused the low cortisol, but that it *might* worsen it at doses higher than 200 mg. People with AI are often advised to take no more than 100 mg of Diflucan a day as a precautionary measure. Since you don't have AI, this may or may not apply.
I know several people that alternate Diflucan with an OTC product called Candistroy.
Ema
I forgot I also take large amounts of probiotics every day at the right times spaced far away from the antibiotic therapy.
leokitten
I see you had low Vit D3. I'd second Ema's comment about checking more into that before doing high dose supplementation. There is an unusual pattern in a percentage of us where Vit D 25 is low and Vit D 1,25 is high. If you supplement on the basis of the low D 25 you can run the risk of raising Vit D 1,25 to a dangerous level--dangerous in that it often rises in tandem with calcium.
Checking for SNPs in the Vit D receptors is another way to go but it won't give you information about what is actually happening now with your Vit D levels.
Sushi
Sorry to ask, since the receptor and SNP tests are more difficult to get, why not just get a 1,25-Dihydroxy Vit D3 test in addition to the 25-Hydroxy?
- TSH has been decreasing quickly ever since I fell ill in January (measured many times in these months, has gone from 2.0 to now 0.7. In normal people TSH shouldn't change much at all in such a short period only slowly as you age). My free and total T3 and T4 are always in the high end of lab reference range so I seem to be becoming hyperthyroid because of this disease. Maybe this is some kind of adaptive response or dysregulation due to something else or maybe because an infection is causing some kind of thyroiditis?
- Cortisol I wish I knew before I fell ill, I want to know whether it is the disease that is causing it to be so low. It was measured twice after I fell ill in January and has just gotten lower. Also wonder if this is an adaptive response, dysregulation due to something else, or due to infection.
- ANA was 1:40 early on in the disease when my body seemed like it was fighting everything like crazy, now is negative, probably due to a huge immune response that resulted in some autoimmunity but now has settled.
- 24-hr Holter monitor showed 800 PVCs/day early in the disease and I knew it because my heart was going nuts literally a week after falling ill I could feel it in my chest. This lasted for a few months and went away on its own without treatment, now no more PVCs.
I wonder what is the first domino to fall right in the beginning of this disease before I knew what was going on and got any labs?