• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Help with Mini Road Map

H

helenrowena

Messages
22
Mini Road Map - Where do I start ?

Symptoms:

My daughter has had chronic fatigue 10 years.
Bedridden for last 3 years.

Constant brain fog,sore arms and
legs ,fatigue,depression,

Last few months started wearing very dark glasses and noise cancelling headphones all the time.

Prescription ; Amitriptyline,Alverine,Pregabalin, Melatonin

We are located in North Scotland
 
Hip

Hip

Senior Member
Messages
17,858
helenrowena said:
Mini Road Map - Where do I start ?
Click to expand...

That's a good question. There are several ME/CFS treatments which can help, and can sometimes make major improvements; but the trouble is that treatments which one ME/CFS patient finds beneficial may not work for the next patient, and there's not much indication in advance of which treatments might work for a given patient.

So for the most part, it's a case of trial and error, testing out various treatments to see if they work for you. Some treatments just involve supplements which you can buy online, whereas other involve prescription drugs.

Here in the UK, usually GP doctors are very reluctant to prescribe prescription drugs on an experimental basis for ME/CFS patients. So unfortunately that rules out drug treatments, unless you go to an internationally-reknowned ME/CFS doctor like Dr Kenny De Meirleir in Brussels, who will prescribe drugs.

You can of course bypass your GP and buy drugs from prescription-free pharmacies, and that's fine if you are taking the drugs yourself; but it's not really a good idea to buy prescription drugs for someone else.



So let's look at the supplements that you might consider trying:

Some ME/CFS patients find high dose vitamin B12 injections useful for reducing brain fog and fatigue. Injectable B12 is a prescription item, but fortunately there is a freely-available transdermal B12 formulation which is just as good if not better than injections.

ME/CFS is usually linked to either herpesviruses (like Epstein-Barr virus, cytomegalovirus or HHV-6), or else enteroviruses (like coxsackievirus B and echovirus). Taking the right viral blood tests can determine which viruses are involved, but this is tricky, because for enterovirus, we do not have the right tests in the UK, so a blood serum sample must be sent abroad to testing labs. Though sometimes the symptoms of the initial acute infection which triggered the ME/CFS can give some clues as to which virus it is.

If you daughter does have ME/CFS linked to active coxsackievirus B infection, then the herbal supplement oxymatrine has shown benefit for these patients. You can even try oxymatrine without viral testing. My roadmap gives more detail, if you search for the word "oxymatrine".

If your daughter has intestinal issues like small intestine bacterial overgrowth (SIBO), then herbal treatment of SIBO can result in great gains in energy. SIBO is normally tested for by a breath test, available privately in the UK, but hard to find on the NHS. See the SIBO section in the roadmap.

Supplements which have potent antidepressant effects comparable to drugs include Spanish saffron 100 mg twice daily (be careful to avoid fake saffron). Ref: 1

You can test your daughter for POTS very easily at home (see POTS section of roadmap). If she has POTS, then simple treatments like giving salt can help.
 
Last edited:
H

helenrowena

Messages
22
Hip said:
That's a good question. There are several ME/CFS treatments which can help, and can sometimes make major improvements; but the trouble is that treatments which one ME/CFS patient finds beneficial may not work for the next patient, and there's not much indication in advance of which treatments might work for a given patient.

So for the most part, it's a case of trial and error, testing out various treatments to see if they work for you. Some treatments just involve supplements which you can buy online, whereas other involve prescription drugs.

Here in the UK, usually GP doctors are very reluctant to prescribe prescription drugs on an experimental basis for ME/CFS patients. So unfortunately that rules out drug treatments, unless you go to an internationally-reknowned ME/CFS doctor like Dr Kenny De Meirleir in Brussels, who will prescribe drugs.

You can of course bypass your GP and buy drugs from prescription-free pharmacies, and that's fine if you are taking the drugs yourself; but it's not really a good idea to buy prescription drugs for someone else.



So let's look at the supplements that you might consider trying:

Some ME/CFS patients find high dose vitamin B12 injections useful for reducing brain fog and fatigue. Injectable B12 is a prescription item, but fortunately there is a freely-available transdermal B12 formulation which is just as good if not better than injections.

ME/CFS is usually linked to either herpesviruses (like Epstein-Barr virus, cytomegalovirus or HHV-6), or else enteroviruses (like coxsackievirus B and echovirus). Taking the right viral blood tests can determine which viruses are involved, but this is tricky, because for enterovirus, we do not have the right tests in the UK, so a blood serum sample must be sent abroad to testing labs. Though sometimes the symptoms of the initial acute infection which triggered the ME/CFS can give some clues as to which virus it is.

If you daughter does have ME/CFS linked to active coxsackievirus B infection, then the herbal supplement oxymatrine has shown benefit for these patients. You can even try oxymatrine without viral testing. My roadmap gives more detail, if you search for the word "oxymatrine".

If your daughter has intestinal issues like small intestine bacterial overgrowth (SIBO), then herbal treatment of SIBO can result in great gains in energy. SIBO is normally tested for by a breath test, available privately in the UK, but hard to find on the NHS. See the SIBO section in the roadmap.

Supplements which have potent antidepressant effects comparable to drugs include Spanish saffron 100 mg twice daily (be careful to avoid fake saffron). Ref: 1

You can test your daughter for POTS very easily at home (see POTS section of roadmap). If she has POTS, then simple treatments like giving salt can help.
Click to expand...
Thanks ,. Is there a private doctor who can prescribe what GPs don't in UK ?

How does it work if a doctor in Brussels can prescribe to someone in UK_- Armin lab ?
 
W

Wishful

Senior Member
Messages
5,741
Location
Alberta
Hip said:
Some treatments just involve supplements which you can buy online, whereas other involve prescription drugs.
Click to expand...

... and some are either already in your kitchen or at least on the spice shelf in your grocery store. My most effective treatments were accidental discoveries from things that were already in my kitchen. It was mainly a matter of noticing that my symptoms were abnormally lower than expected, and then figuring out what caused that. My feelings on treatments is that there probably are some treatments that will work for any individual PWME, but there's really no way to know what might have a better chance of working than any other possible treatment. Thus an expensive pharmaceutical with nasty side effects is really no more likely to work than a jellybean (lots of potentially bioactive chemicals in them). The produce section has potential to provide treatments too; elderberries make my symptoms much worse, but maybe some other exotic fruit would reduce some symptom.
 
Hip

Hip

Senior Member
Messages
17,858
helenrowena said:
Thanks ,. Is there a private doctor who can prescribe what GPs don't in UK ?

How does it work if a doctor in Brussels can prescribe to someone in UK_- Armin lab ?
Click to expand...

Doctors in the UK are tightly controlled by the General Medical Council. I am not sure of the exact regulations, but I believe doctors are not generally free to prescribe any drugs they like, but only drugs that the NHS say are appropriate for a particular disease. For ME/CFS, no drugs have been licensed as a treatment, because there is insufficient evidence any are actually are effective for ME/CFS.

Dr Myhill in Wales was prescribing the antiviral Valtrex to ME/CFS patients, but the GMC forced her to stop.

In the US, doctors have more clinical freedom, so it's easier to find a doctor that will prescribe drugs experimentally to ME/CFS patients. The chances of benefiting from these drugs though is not great, but you can but try.

Here is a world map of ME/CFS doctors.
 
Hip

Hip

Senior Member
Messages
17,858
helenrowena said:
Okay. Do you know if any doctor abroad would prescribe fir my daughter in
Scotland ?
Click to expand...

Do you mean through diagnosis by video conference or Skype call to you and your daughter? I don't know; some ME/CFS doctors may do this.

But there aren't many drugs that might help anyway. LDN is worth trying, but it only helps a small percentage of ME/CFS patients. Valcyte can be effective for herpesvirus ME/CFS, but is very expensive. Tenofovir can sometimes help. Pyridostigmine works well for some to reduce PEM.
 
You must log in or register to reply here.