Saw a good doctor

[outdamnspot]

Well, something actually went right for me for a change and I ended up seeing a good doctor today. I wasn't actually expecting anything, but did say I don't really think enough diagnostic investigations have been done, and asked if I could see an immunologist. She said it's definitely possible, but is running these tests in the interim. I was wondering what people think:

FBE
Iron studies
Active B12/Folate
UECr
LFT
CaMgPO4
Vit D
Amylase
Lipase
CRP
ESR
TFT
Urine M/C/S
thyroid antibodies
ANA
anti smooth muscle ab
anti mitochondrial ab
CK
ENA
anti ds DNA
serum EPG

Also, one thing I was wondering regarding getting the tests done: I take high-ish doses of time-release Vitamin C to sleep (about 5-7 grams before bed, which I believe release over 8 hours). Last time I had an ANA and ENA done, they were normal, but I had taken Vitamin C the night before to sleep. It's kind of tricky because if I don't, I may not sleep (and be too unwell to even get to the lab), but I did wonder if it could affect these inflammatory markers at all. My sleep schedule is off (to work around my noisy family), and I wake up at about 3pm and sleep at 5am. If I had taken Vitamin C, the night before, I wonder if avoiding it before bed and staying up until 7/8am and going straight to the lab would be sufficient. Or I could risk just trying to get some sleep without it, and going in the afternoon. I just wasn't sure if I'm being pedantic or if it could actually have an effect.

 

[jesse's mom]

I don't know how to answer that question, but I am so glad you went to a Dr. Bloodwork is a great place to start.
I have suspected that my bloodwork is off when I go during PEM, but I think I am wrong.

So happy you saw a Dr and have some hope!

 

[xcell]

I would add some more tests for the immune system:

(shortened by me)
decrease of CD56 NK cells;
downregulation of IL-13, IL-2, IFN gamma, TH-1 cytokines

upregulated levels of TH-2 cytokines: IL-4,
IL-10 and pro-inflammatory cytokines: IL-1,
IL-6, IL-8 and TNF-alpha.

elevated levels of TGF beta-1

low wbc (white blood count below
4500), low CD 56. CD 67 (Borrelia burgdorferi)
https://klinghardtinstitute.com/wp-content/uploads/2018/05/IHCAN-Dr-K-article-HERV-05.1.pdf

https://forums.phoenixrising.me/ind...ic-illness-–-a-clinician’s-perspective.61164/

 

[outdamnspot]

I would add some more tests for the immune system:

https://forums.phoenixrising.me/index.php?threads/dr-klinghardt-the-role-of-retroviruses-in-chronic-illness-–-a-clinician’s-perspective.61164/

Would these tests actually lead to any kind of treatment options?

 

[Learner1]

Glad you found a good doctor!!

I agree about having immune testing. Tests that may lead to treatment include:

Immunoglobulins - IgE, IgM, IgA, and IgG with subclasses
Functional NK cells (Natural killer cells)
T cell phenotyping
B cell panel
EBV and CMV PCRs plus titers
HHV6, zoster, snd othrr herpes viruses
Any infection commin to where you've lived/travelled.

LDN, IVIG, Rituximab, artemisinin, antiviral, antibiotics and oxygen therapies might be treatments.

 

[xcell]

Would these tests actually lead to any kind of treatment options?

You could save thousands of $$ if these tests result in bad immune system.
Looking for pathogens with IgM/IgA if your immune system can't fight against them will give you negative results and then doctor says that there aren't any infections...

 

[outdamnspot]

You could save thousands of $$ if these tests result in bad immune system.
Looking for pathogens with IgM/IgA if your immune system can't fight against them will give you negative results and then doctor says that there aren't any infections...

Thanks, interesting. I was tested for every common infection and they were all negative. Are these pretty standard tests it wouldn't be weird to ask a GP to run? I'm already worrying about the tests she's ordered not showing anything.

 

[xcell]

Most doctors do not look (carefully enough) after your immune system.

If possible read this article (link from above): https://klinghardtinstitute.com/wp-content/uploads/2018/05/IHCAN-Dr-K-article-HERV-05.1.pdf

 

[outdamnspot]

Got my results back today. I'm actually disappointed because everything was normal -- I was hoping they would find something, finally.

I did have one positive antibody for anti-smooth muscle, but it was a weak positive, and the doctor said it didn't mean anything because my liver function etc. is fine. Is there any chance it could actually point to something? She said it isn't worthwhile referring me to an immunologist based on my results :/

 

[Seadragon]

@outdamnspot I have positive smooth muscle antibody and also positive ANA and Rheumatoid Factor. I was referred to a rheumatologist but he couldn't find any evidence of Lupus/Rheumatoid Arthritis etc.

One immunologist I saw several years back said these slightly abnormal test results could be due to low grade chronic or recurrent viral infections. (I do suffer from chronic/recurrent respiratory tract infections as part of my illness).

Have you had your ANA checked?

GP's tend to refer to a rheumatologist only if more than one test suggesting possible autoimmunity shows positive.

Your GP is correct - a positive ASMA could sometimes point to possible autoimmune hepatitis but this is only suspected if your liver results are also out of whack. If liver results are OK, GP's don't worry about it.

 

[outdamnspot]

@outdamnspot I have positive smooth muscle antibody and also positive ANA and Rheumatoid Factor. I was referred to a rheumatologist but he couldn't find any evidence of Lupus/Rheumatoid Arthritis etc.

One immunologist I saw several years back said these slightly abnormal test results could be due to low grade chronic or recurrent viral infections. (I do suffer from chronic/recurrent respiratory tract infections as part of my illness).

Have you had your ANA checked?

GP's tend to refer to a rheumatologist only if more than one test suggesting possible autoimmunity shows positive.

Your GP is correct - a positive ASMA could sometimes point to possible autoimmune hepatitis but this is only suspected if your liver results are also out of whack. If liver results are OK, GP's don't worry about it.

Yes ANA was normal. Unfortunately that leaves me at a dead end.

 

[outdamnspot]

Here's all my results if anyone is interested .. wondering if anything stands out or was missed.

HAEMOGLOBIN: 152 (130-180)
Hct 0.45 (0.39-0.51)
RBC 5.1 (4.3-5.8)
MCV 90 (80-100)
MCH 30 (27-34)
RDW 330 (310-360)
PLATELETS 13.1 (11-17)
WHITE CELLS 6.7 (4-11)
Neutrophils 3.4 (2-7.5)
Lymphocytes 2.4 (1-4)
Monocytes 0.8 (0-1)
Eosinophils 0.2 (0-0.5)
Basophils 0 (0-0.3)

ESR 4 (1-10

Iron 8 (5-30)
TRF 2.3 (2-3.2)
TRF SAT 14 (10-45)
FERRITIN 148 (30-500)
AMYLASE 43 (20-100)
LIPASE 31(10-55)

T-Protein 71 (66-83)
ALBUMIN (41-54)
ALPHA-1 GL 2.2 (2.2-4.1)
ALPHA-2 GL 5.1 (4.9-8.7)
BETA-1 GL 4.1 (3.4-5.8)
BETA-2 GL 3.3 (2.1-4.9)
GAMMA GL 9.2 (7-16)

CRP 1 (<5)

Vit D 54 (50-250)

Anti-Smooth Muscle Antibodies: Weakly positive 1:40

@Learner1 I'm going back to the doctor next week so want to ask about anything important they may have missed, though I'm confined to whatever tests are available publicly in Australia.

 

[xcell]

The biggest problem for patients with ME are that standard blood work results all "normal".

I can only give the hint to look on your immune system and ask your doctor to do those tests.

 

[outdamnspot]

The biggest problem for patients with ME are that standard blood work results all "normal".

I can only give the hint to look on your immune system and ask your doctor to do those tests.

I asked my friend's mother (a retired doctor) about those tests. She's never practiced in Australia but said this:

"I have heard of some of them
Cell Flow Cytometry is done in OZ, but not sure the others are
They usually do cell flow cytometry to check CD20 and and CD 40 counts in cancer, immune cell disorders, HIV et

A friend of mine has psoriatic arthritis and I asked her to ask her rheumatologist to check her cytokines and TNF alpha
He said they don’t have that test in Oz
That was 2 -4 yrs ago

They do do interferon tests here I think and immunoglobulins—IgA,IgM, IgD and IgE

But I think you already had those
Also good luck with getting those on Medicare via a GP

Im not sure they test for Borrelia Burgdorfi here because if they did and it came back positive they’d have to emit Lyme disease exists in Australia—something which the establishment strenuously denies"

So I may not have much luck

 

[Learner1]

Here's all my results if anyone is interested .. wondering if anything stands out or was missed.

HAEMOGLOBIN: 152 (130-180)
Hct 0.45 (0.39-0.51)
RBC 5.1 (4.3-5.8)
MCV 90 (80-100)
MCH 30 (27-34)
RDW 330 (310-360)
PLATELETS 13.1 (11-17)
WHITE CELLS 6.7 (4-11)
Neutrophils 3.4 (2-7.5)
Lymphocytes 2.4 (1-4)
Monocytes 0.8 (0-1)
Eosinophils 0.2 (0-0.5)
Basophils 0 (0-0.3)

ESR 4 (1-10

Iron 8 (5-30)
TRF 2.3 (2-3.2)
TRF SAT 14 (10-45)
FERRITIN 148 (30-500)
AMYLASE 43 (20-100)
LIPASE 31(10-55)

T-Protein 71 (66-83)
ALBUMIN (41-54)
ALPHA-1 GL 2.2 (2.2-4.1)
ALPHA-2 GL 5.1 (4.9-8.7)
BETA-1 GL 4.1 (3.4-5.8)
BETA-2 GL 3.3 (2.1-4.9)
GAMMA GL 9.2 (7-16)

CRP 1 (<5)

Vit D 54 (50-250)

Anti-Smooth Muscle Antibodies: Weakly positive 1:40

@Learner1 I'm going back to the doctor next week so want to ask about anything important they may have missed, though I'm confined to whatever tests are available publicly in Australia.

Glad you got to a doctor, but that looks like very standard bloodwork that is almost meaningless for most of us with ME/CFS. Still, it rules out a lot of things.

Your vitamin D could be higher and you should ask about this which is at the bottom of the range. Do you have an antitrypsin genetic issue, or ??

ALPHA-1 GL 2.2 (2.2-4.1)

Things you should have checked, if you can (I have no idea whars standard on your health system, but I've had a major US lab here do them:

• Immunoglobulins with subclasses
• Anti nuclear antibodies (ANA)
  
• ACTH stim test or 24 hour cortisol
• Aldosterone
  
• Thyroid panel, including reverse T3, FT3, FT4, and antibodies
• Testosterone, DHEA, and pregnenolone
• Amino acid panel
• Organic Acid Test
• PCR and antibodies for Epstein Barr, cytomegalovirus, zoster, HHV6, and any other viruses common to where you've lived
  
• RBC zinc, copper, and ceruloplasmin

Others would depend on your symptoms. Other than fatigue, can you remind me what else is going on?

 

[outdamnspot]

Do you have an antitrypsin genetic issue, or ??

Not that I'm aware of. Is there any relevance to that test result?

Things you should have checked, if you can (I have no idea whars standard on your health system, but I've had a major US lab here do them:

• Immunoglobulins with subclasses
• Anti nuclear antibodies (ANA)
  
• ACTH stim test or 24 hour cortisol
• Aldosterone
  
• Thyroid panel, including reverse T3, FT3, FT4, and antibodies
• Testosterone, DHEA, and pregnenolone
• Amino acid panel
• Organic Acid Test
• PCR and antibodies for Epstein Barr, cytomegalovirus, zoster, HHV6, and any other viruses common to where you've lived
  
• RBC zinc, copper, and ceruloplasmin

Others would depend on your symptoms. Other than fatigue, can you remind me what else is going on?

My symptoms are consistent with severe CFS I suppose: I'm bedridden and struggle with sitting/standing etc (frequent crashes), bad GI issues and food sensitivities (vomited blood before but too weak to do colonoscopy), neurological symptoms etc.

 

[Learner1]

Not that I'm aware of. Is there any relevance to that test result?

Yes.

My symptoms are consistent with severe CFS I suppose: I'm bedridden and struggle with sitting/standing etc (frequent crashes), bad GI issues and food sensitivities (vomited blood before but too weak to do colonoscopy), neurological symptoms etc.

A DNA stool test for bacteria, viruses and fungi
Calprotectin
Test for anti-gliadin antibodies (celiac)
Histamine
Tryptase
Prostaglandin D2 and F2
Testing for dysautonomia
CellTrend antibody test:
http://www.celltrend.de/cfs-diagnostics.html

Good luck!

 

[outdamnspot]

Yes.

Thanks! Can you elaborate?

 

[Learner1]

The alpha1-protein fraction is comprised mainly of alpha1-antitrypsin, with thyroid-binding globulin, and transcortin also.

A decreased alpha1-protein band may occur because of alpha1-antitrypsin deficiency or decreased production of the globulin as a result of liver disease (your liver numbers look normal.

Alpha-1 abnormalities are usually due to alpha-1 antitrypsin changes. Decreased levels in congenital alpha-1-antitrypsin deficiency.

https://www.webmd.com/lung/copd/alpha-1-antitrypsin-deficiency-rare

 

[outdamnspot]

The alpha1-protein fraction is comprised mainly of alpha1-antitrypsin, with thyroid-binding globulin, and transcortin also.

A decreased alpha1-protein band may occur because of alpha1-antitrypsin deficiency or decreased production of the globulin as a result of liver disease (your liver numbers look normal.

Alpha-1 abnormalities are usually due to alpha-1 antitrypsin changes. Decreased levels in congenital alpha-1-antitrypsin deficiency.

https://www.webmd.com/lung/copd/alpha-1-antitrypsin-deficiency-rare

Ah, I did see that when I googled. Unfortunately, it seems doctors don't really pay attention to results when they're in range (even if low). Interestingly, I have been having a lot of breathing problems this year, which I just assumed were related to my CFS worsening.