Seeing new GP - humor me?

[outdamnspot]

I contacted the CFS society here in Australia (Emerge) and was given a list of practitioners with an interest in CFS. One of the GPs is in my area, so I made an appointment to see him tomorrow. I'm doubtful much can be done for me at this point, but out of interest, are there any tests I should ask him about running?

I recently had my ANA and ENA checked, which were normal. All of my standard bloodwork (CRP, ERP, lymphocytes, monocytes etc.) is normal. B12, folate, Magnesium etc. are all normal. I have low Vit D, but can't tolerate supplements so just get in the sun when I can. The only anomalous result I've had to date it as a positive antibody (anti-smooth muscle) but was told it didn't mean much because my liver readings are fine. I'm not positive for any of the viruses like EBV etc. I've had thyroid antibodies in the past, but they were in range.

Is there any more in-depth immune testing a GP could do, bearing in mind I'm confined to the public system?

My primary symptoms on top of severe CFS are food intolerances, weight loss, weakness/fatigue.

@Learner1 @BeADocToGoTo1

 

[Learner1]

I recently had my ANA and ENA checked, which were normal. All of my standard bloodwork (CRP, ERP, lymphocytes, monocytes etc.) is normal. B12, folate, Magnesium etc. are all normal. I have low Vit D, but can't tolerate supplements so just get in the sun when I can. The only anomalous result I've had to date it as a positive antibody (anti-smooth muscle) but was told it didn't mean much because my liver readings are fine. I'm not positive for any of the viruses like EBV etc. I've had thyroid antibodies in the past, but they were in range.

Tis is not a comprehensive list if tests and were they even the right versions, like did they do the gold standard methylmalonic acid or serum B12, which is fairly useless. Ranges can be deceiving, generally they're the two and a half percent to 97 and a half percent of the population so you can fall anywhere within that range and be "normal". If you want to PM your results, ill have a look and see if they're so normal.

Other tests that may provide insight may include:

1. Ferritin and iron panel
2. PCRs not titers if possible for EBV, CM, HHV6and 7, HSV1 and 2, parvobius B29, toxoplamosis, Ross River Virus, chsmydoa pneumonia. If titers make sure they're IgG, IgM, and IgG. (My RBV got missed before a PCR was run.
3. Cancer markers
4. IgG with subclasses, IgM, and If a and SIGA, CD57 panel, T and B differential panels
5. Cytokine panel
6. Organic acid test
7. Amino acid panel
8. Trace minerals, including selenium, zinc, copper, and iodine
9. Glutathione and homocysteine
10. Heavy metal testing - particularly for stzenic, cadmium, lead, and mercury (any mines near you?)
11. Mycotoxin testing
12. Growth hormone test, ACTH stim test, 24 hour saliva cortisol panel
13. Thyrpid panel - FT3, FT4, reverse T3, TPO and thyroglobulin antibodies. (What was your "normal TSH,? .5-2, or 4-10? If it was above 3, you have a problem.
14. Testing for celiac or gluten sensitivity
15. Mast cell testing, preferably plasma Prostaglandin D2 and Chromagranin A, which must be kept onice to properly process. Tryptase and histamine are not aleays useful.
16. Parasite testing for your gut, or a from test.
17. If you think you might have some weird and wild infection of unknoen origin, UC San Francisco gas some magic machine that can figure out what it is from a sample of your cerbral spinal fluid.

Hope you find something!! Most of us do, and the problems are treatable with a bit of curiosity on the doctor's part to find answers.

 

[outdamnspot]

I'm guessing if I don't get headaches/neck pain then CCI is probably unlikely and not worth investigating? I also had a brain MRI 3 years ago (supine) which was normal.

 

[YippeeKi YOW !!]

@outdamnspot
How'd your appointment go? Hoping that you got some support, some concerned involvement, and some genuine help !!!

 

[Zebra]

Hi @outdamnspot!

I realize you already had your appt, but I'm just now seeing your post.

I'm chiming in to suggest that you do not dismiss your anti smooth muscle antibodies (ASMA), just because your liver function tests are currently normal.

I am ASAM positive and my liver function tests are normal more often than not, but what IS abnormal is my liver imaging. Started out as mild changes in liver texture in 2012 and progressed to fibrosis by 2016. (I do not drink alcoholic beverages. This is an autoimmune process.)

If you haven't had a "Liver Ultrasound with Elastography," perhaps your PCP will be sympathetic to your circumstances and be willing to order this very INexpensive imaging, if only to rule out a visible liver disease process.

In doing my own research on ASMA, I learned that while primarily ordered for hepatic disease testing, these antibodies have been linked to mononucleosis, melanoma, and breast and ovarian cancer.

I don't say all this to scare you, but when I saw that your previous healthcare providers dismissed your positive ASMA because your current liver function tests are normal (but you have weight loss and fatigue) it caused me to become concerned for you.

My user name on PR is "Zebra," but I'm honestly thinking I should change it to: "Zebra: A Cautionary Tale"!

 

[YippeeKi YOW !!]

@outdamnspot
Soooooo .... how'd your apptmnt go? Concerned.

 

[outdamnspot]

@YippeeKi YOW !! no magic answers at this point He was cognizant of CFS, but all of my bloodwork is normal and he didn't see the point in further testing. He did offer Clonazepam, but unfortunately benzos give me paradoxical agitation.

 

[YippeeKi YOW !!]

@outdamnspot

He did offer Clonazepam

One of the worst benzos on the market, tho it's hard to choose. It was created initially for epileptic seizures, but when it didn't unseat the reigning champion, it was quickly pushed to Drs as an anxiolytic. It has a short half life, really screws with your brain and neuro system, and generally isn't worth a warm bucket of, uh, kitty litter.

Don't Drs have anything useful to offer? Never mind , it's a rhetorical question.

unfortunately benzos give me paradoxical agitation.

I'd say that's the one really good break you've had lately.

Do you have copies of the blood work the Dr ran and the results? They might come in handy down the road, when you find a Dr who's willing to use 2 or 3 of his 6 brain cells to actually focus on what might be wrong.