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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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Test Results Help
- Thread starter b1ueman
- Start date
There are many here who would be happy to help if we knew more. Every person with CFS/ME has different medical issues, although there are some issues that are common to many of us.
For example, some but not all of us have Lyme disease, thyroid and adrenal issues, orthostatic intolerance, nutrient deficiencies, cognitive impairment, etc.
We would need to know more about your wife's issues to be able to help.
For example, some but not all of us have Lyme disease, thyroid and adrenal issues, orthostatic intolerance, nutrient deficiencies, cognitive impairment, etc.
We would need to know more about your wife's issues to be able to help.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
Its as helen said, we need to know a lot more about your wife before we can suggest things eg the various abnormalities they found and certain test results she got back. Note if they dont test for the ME/CFS abnormalites (other then just trying to rule out other things), she still wouldnt know which abnormalities she has.
Also she wouldnt have all the recommended by ME experts, ME/CFS tests... the English hospital would of given her very few, there would be quite a few important ones which have been missed. We cant suggest what else should be tested for without knowing what tests she's had and what exactly are her symptoms.
ME/CFS is an extremely complex disease and the treatment needs to be tailored for her.
Also she wouldnt have all the recommended by ME experts, ME/CFS tests... the English hospital would of given her very few, there would be quite a few important ones which have been missed. We cant suggest what else should be tested for without knowing what tests she's had and what exactly are her symptoms.
ME/CFS is an extremely complex disease and the treatment needs to be tailored for her.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
b1ueman. I strongly suggest you read the Canadian Consensus CFS Document and see if your wife fits this CFS definition and if she does, there is in that document is a list of recommended ME/CFS tests to find the abnormalities of ME/CFS http://sacfs.asn.au/ (if you scroll down, you will see the link for it on the right). I suggest to read the whole thing as i think you will learn a lot from it, it will also be helpful to your wife if she is not fully familiar with this illness yet..
caledonia
Senior Member
- Messages
- 4,610
The gut is always a good place to start, as it contains 70-80% of the immune system. Also malabsorption will make it difficult to fully utilize nutrients from foods or supplements.
Did any bad bacteria, parasites or yeast show up? You can take probiotics if the good gut flora is low. I'm thinking the malabsorption is probably due to the low good bacteria. Any leaky gut?
Do you know what thyroid tests were run? It's possible to have a normal TSH test while the thyroid antibodies are abnormal, indicating autoimmune thyroiditis. This happened to me.
If she has a history of toxin exposure, and now she's sick, that screams methylation cycle problems to me. This is how I became sick. She should definitely reduce toxin exposure by stopping smoking and avoiding dyes. I agree on toxins possibly causing the weight gain.
It would be good if you could tell us what kind of detoxification program she's on. If you go too fast, and don't take into account her methylation cycle and detox genes, it could make her worse. You can get gene testing through 23andme to see what those are.
I don't know if the anti-viral would be the thing to do or not. I agree on trying to detox first (and work on the gut), before trying an anti-viral. It's possible the other therapies would restore her immune system enough that she wouldn't need it.
Check out the links in my signature, starting with the Methylation Made Easy videos.
Did any bad bacteria, parasites or yeast show up? You can take probiotics if the good gut flora is low. I'm thinking the malabsorption is probably due to the low good bacteria. Any leaky gut?
Do you know what thyroid tests were run? It's possible to have a normal TSH test while the thyroid antibodies are abnormal, indicating autoimmune thyroiditis. This happened to me.
If she has a history of toxin exposure, and now she's sick, that screams methylation cycle problems to me. This is how I became sick. She should definitely reduce toxin exposure by stopping smoking and avoiding dyes. I agree on toxins possibly causing the weight gain.
It would be good if you could tell us what kind of detoxification program she's on. If you go too fast, and don't take into account her methylation cycle and detox genes, it could make her worse. You can get gene testing through 23andme to see what those are.
I don't know if the anti-viral would be the thing to do or not. I agree on trying to detox first (and work on the gut), before trying an anti-viral. It's possible the other therapies would restore her immune system enough that she wouldn't need it.
Check out the links in my signature, starting with the Methylation Made Easy videos.
Here is a website which discusses dysautonomia:
http://dinet.org/
all the best to you both.
http://dinet.org/
all the best to you both.
The doctor sounds like he knows what he's talking about it. Were the antivirals and allergy testing tried?
Ema
Senior Member
- Messages
- 4,729
- Location
- Midwest USA
I don't trust for one moment that there aren't abnormalities in the endocrine system. I would ask to see those test results directly if it were me.
I also think it is interesting that only the high IgM to HHV6 was focused on when all the viral results were high. And what a huge difference between prescribing Immunovir (a fairly benign supplement) or Valcyte (heavy duty viral artillery).
How is she doing on the Valcyte? What dose is she taking?
My doctor likes to see ferritin between 70 and 90 so if she is below 27, I would seriously consider iron supplementation.
Also, a good probiotic may be helpful to improve gut function.
Ema
I also think it is interesting that only the high IgM to HHV6 was focused on when all the viral results were high. And what a huge difference between prescribing Immunovir (a fairly benign supplement) or Valcyte (heavy duty viral artillery).
How is she doing on the Valcyte? What dose is she taking?
My doctor likes to see ferritin between 70 and 90 so if she is below 27, I would seriously consider iron supplementation.
Also, a good probiotic may be helpful to improve gut function.
Ema