Hi Everyone,
I'm at a loss on what to do next, please could I get some advice from you knowledgable lot!
I have moderate/severe ME and POTS and have had this for two years. I have managed to go from being bed bound to house bound in this time due to intensive resting and taking various medications (ivabradine & aciclovir) and supplements (Dr Myhill's protocol).
I'm not sure which drugs specifically worked (apart from ivabradine) but I'm staying on these as something has helped I'm at the stage now where I'm no longer making improvements and looking to gain more functionality.
The main symptoms I am unable to manage are: PEM, swollen and painful thyroid with hypothyroid symptoms, face pain, arm pain, viral/poisoned feeling, swollen armpits, severe acne on back and chest.
Since being ill I have constantly had mildly/moderately raised blood work showing chronic inflammation:
Lymphocytes
White blood cells
CRP
ESR
Plasma viscosity
Further testing at immunology showed these results (no help was given and discharged)
Increased:
Cd4:cd8
cD3 absolute
Cd3/4 absolute
complement C3
complement C4
Low
CD3-/CD56=16 percentage 6.0 (7-31)
Thyroid - T4 T3 ratio low and reverse t3 low (not optimum but have been told that I wouldn't benefit from medication as these results are usually due to inflammation and need to sort out adrenals first
NB: I have paid for testing and ruled out a lot of other chronic illnesses (lupus, MS, lyme, auto immune conditions)
I have some treatment options but I don't have a doctor who can look at the whole picture to advise where to go next so I'm relying on my own instinct and forums. Here are my options:
Dr Myhill (can be monitored)
Valcyte
(Concerned whether I need this as unsure if it's a reactivating virus on not, been tested negative for EBV. Maybe my high inflammatory markers warrant it) Also there's the cost factor to consider as I could afford it at a push but only if it's the right path for me.
NHS cardiologist:
Fludrocortisone
Garabetin
(Concerned that pain meds would mask the real root cause and not help long term. Fludrocortisone may not help ME symptoms and could affect adrenals/thyroid negatively. Could however help with lowering inflammation) Completely monitored and free.
Online GP: (no monitoring or advice)
Low Dose Naltrexone (LDN)
(Heard this can be tolerated well, can regulate the immune system but I wouldn't have anyone monitoring me as no doctor apart from online will prescribe.
Buy online: Imunovir (Don't know much about this drug, would not be monitored and have no help)
I am based in the UK so don't have any other options apart from above.
Thank you in advance
K
I'm at a loss on what to do next, please could I get some advice from you knowledgable lot!
I have moderate/severe ME and POTS and have had this for two years. I have managed to go from being bed bound to house bound in this time due to intensive resting and taking various medications (ivabradine & aciclovir) and supplements (Dr Myhill's protocol).
I'm not sure which drugs specifically worked (apart from ivabradine) but I'm staying on these as something has helped I'm at the stage now where I'm no longer making improvements and looking to gain more functionality.
The main symptoms I am unable to manage are: PEM, swollen and painful thyroid with hypothyroid symptoms, face pain, arm pain, viral/poisoned feeling, swollen armpits, severe acne on back and chest.
Since being ill I have constantly had mildly/moderately raised blood work showing chronic inflammation:
Lymphocytes
White blood cells
CRP
ESR
Plasma viscosity
Further testing at immunology showed these results (no help was given and discharged)
Increased:
Cd4:cd8
cD3 absolute
Cd3/4 absolute
complement C3
complement C4
Low
CD3-/CD56=16 percentage 6.0 (7-31)
Thyroid - T4 T3 ratio low and reverse t3 low (not optimum but have been told that I wouldn't benefit from medication as these results are usually due to inflammation and need to sort out adrenals first
NB: I have paid for testing and ruled out a lot of other chronic illnesses (lupus, MS, lyme, auto immune conditions)
I have some treatment options but I don't have a doctor who can look at the whole picture to advise where to go next so I'm relying on my own instinct and forums. Here are my options:
Dr Myhill (can be monitored)
Valcyte
(Concerned whether I need this as unsure if it's a reactivating virus on not, been tested negative for EBV. Maybe my high inflammatory markers warrant it) Also there's the cost factor to consider as I could afford it at a push but only if it's the right path for me.
NHS cardiologist:
Fludrocortisone
Garabetin
(Concerned that pain meds would mask the real root cause and not help long term. Fludrocortisone may not help ME symptoms and could affect adrenals/thyroid negatively. Could however help with lowering inflammation) Completely monitored and free.
Online GP: (no monitoring or advice)
Low Dose Naltrexone (LDN)
(Heard this can be tolerated well, can regulate the immune system but I wouldn't have anyone monitoring me as no doctor apart from online will prescribe.
Buy online: Imunovir (Don't know much about this drug, would not be monitored and have no help)
I am based in the UK so don't have any other options apart from above.
Thank you in advance
K
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