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A LOT of totally incorrect/wrong information and advice given
- Thread starter leokitten
- Start date
And to add my usual bit...
When you are sitting, keep your feet raised, (or better still lie down).
It reduces the amount of work your heart has to do against gravity to get the blood back up in absence of the muscular pump being operational.
Use your own knowledge of of your physiology in these little ways - because it all helps to reduce the amount of energy you are using just keeping your body going.
All these little bits of "savings" add up to a great deal when put into practise all day, every day...
Also, use your knowledge of the body to help to work out pacing.
Brain work, and physical work, eye/seeing work, listening work, leg work, arm work, digestive work, temperature regulation work...
These little things will help make your resting much more effective - but can be applied in general.
When you are sitting, keep your feet raised, (or better still lie down).
It reduces the amount of work your heart has to do against gravity to get the blood back up in absence of the muscular pump being operational.
Use your own knowledge of of your physiology in these little ways - because it all helps to reduce the amount of energy you are using just keeping your body going.
All these little bits of "savings" add up to a great deal when put into practise all day, every day...
Also, use your knowledge of the body to help to work out pacing.
Brain work, and physical work, eye/seeing work, listening work, leg work, arm work, digestive work, temperature regulation work...
These little things will help make your resting much more effective - but can be applied in general.
SOC
Senior Member
- Messages
- 7,849
I suspect the question is "What treatable infections or conditions have you been diagnosed with?" We all know antivirals and abx are not prescribed for ME/CFS; they are prescribed for specific infections. I think the poster was asking which infections you have that you are managing to get treatment for.
Little Bluestem
All Good Things Must Come to an End
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- 4,930
Infections and anything else. What tests were positive and how are they being treated? What tests were negative would be instructive, as well.
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
See list in this thread
See starter list in this thread
See starter list in this thread
Ema
Senior Member
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- Midwest USA
I think this is a pretty good starter list.
I might add that most of us seem to be low cortisol and a urine cortisol test is better at catching excess than deficiency. I would choose a saliva test personally coupled with a serum test and ACTH stim test if warranted.
I would also feel comfortable testing aldosterone in serum.
I would also add RT3 to the thyroid tests and estradiol and progesterone to the sex hormone labs, noting that these are best done in cycling women on day 21 as well as DHEAs.
I would also consider a fasting insulin level.
If supplementing large amounts of Vit D, I would also check for Vit D receptor dysregulation which can cause the active form of Vit D, 1, 25 D to spiral upwards out of control.
I would also add iron, serum and TIBC/UIBC, and ferritin and B12 to this list along with a lipid panel.
A methylation panel by Vitamin Diagnostics might be helpful.
If anyone has any blood left after all this, magnesium can also be helpful since many of us are low.
Ema
Of all the lab tests I've been able to do so far I have:
EBV infection (Focus Dx: VCA IgG 1:5120, EA (R+D) IgG >= 1:640, EBNA IgG >= 1:640)
CMV infection (Focus Dx: IgG 11.4 was 20.4 before)
HHV-6 infection (Focus Dx: IgG 1:1280)
Mycoplasma pneumoniae (IgG > 5.00)
Candida albicans overgrowth (positive stool test)
Low cortisol (24hr test)
Low-normal NK function (13 LU)
Low ferritin
Low vitamin D
There are way too many negative tests to list, everything else lab-wise so far has been negative except here are some weird things that have been going on:
- 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.
Valcyte (900 mg AM + 450 mg PM/day)
Famvir (1000 mg x 2/day)
Immunovir (500 mg x 2/day)
Diflucan (200 mg/day for 6-12 weeks, then will do Nystatin after while still on Doxycycline)
Doxycycline (100 mg x 2/day for 6 months)
Hydrocortisone (5 mg/day)
I have a CBC w/ diff and CMP every two weeks. Plus I take literally so many supplements every day too many to list here, basically everything I've researched that one needs to take for methylation/folate cycle, glutathione depletion, vitamin deficiencies, mitochondrial dysfunction, hypercoagulation, immune support, anti-yeast, etc etc. you guys know the drill.
Ema
Senior Member
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- Midwest USA
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/
Ema
Senior Member
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- Midwest USA
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
Thank you Ema for all of this valuable information. I will definitely have a look since we know Candida can become resistant to Diflucan after a while and its good to alternate therapies. I forgot I also take large amounts of probiotics every day at the right times spaced far away from the antibiotic therapy.
People should also know that melatonin potently inhibits cortisol production so those of you who are using it as a sleep aid at night if you are taking larger dosages it will definitely negatively affect your cortisol the next day!
Wayne
Senior Member
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Hi Leokitten (and welcome to the PR forum),
I just discovered this thread a few minutes ago, and have only read the first 20 or so posts; lots to catch up on. Just to mention briefly, I learned recently that different probiotics have differing degrees of mono-, di-, and polyglycerides, and that many pwCFS don't do well with di- and poly-glycerides, supposedly because they can keep the gut from healing. I believe there's information here on this board about the "Specific Carbohydrate Diet". --- Looks like a lively discussion going on here. Perhaps I'll catch up in a few days (if I'm lucky!
) and try to contribute a bit.Regards, Wayne
P.S. --- BTW, I do agree with your premise about how important it is to be aware of how much totally incorrect/wrong information and advice is given. To me, it's a pervasive problem that we need to confront at every turn in our lives, whether it has to do with health, politics, religion, etc. Many people often like to portray themselves as extremely knowledgeable in areas they really have little or no good perspective on.
I've noticed little of that kind of attitude on this board however, with most posters sincerely trying to help others in whatever way they can. In posting here, it seems to be a given (without always explicitly stating such), that we're all so different, and that what works well for one person may or may not work for others.
Sushi
Moderation Resource Albuquerque
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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
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?
Sushi
Moderation Resource Albuquerque
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That is the way I would go. Most any lab will test for Vit D 1,25, but most insurance doesn't pay for it. Still, it isn't a "break the bank" test.
I had the receptors tested only when being evaluated for GcMAF.
Sushi
- Right after falling ill I lost my appetite completely for months, eating made me nauseous and many times vomit and even the thought of food made me feel ill. Even so, every time they measured my fasting glucose in the first months of the disease it was always in the 90s-100s which is abnormal. Then after this phase and more recently my blood glucose not fasting even just two hours after eating a big meal is always in the 60s.
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?
Sea
Senior Member
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- NSW Australia
One of the things that works against researchers finding this critical info is the criteria that we be sick for six months before a diagnosis of ME/CFS is considered