Early stages of M.E

[Elph68]

Hi

Thank you all so much for your quick replies

Sorry, I should have made it clear in my original post, I live in the UK so testing and finding a decent doctor is very difficult! Hence why I've had to take things into my own hands and try different things.

I have a reasonably good GP who has been willing to do some tests but is clueless about M.E. I also went to A&E early on with the hope of getting some help as I felt so bad and they luckily sent me to the infectious diseases department. The tests I have also had done so far are apart from in original post are:

EBV
CMV
Lymes
Toxoplasma
Hepatitis
Full blood count
Thyroid function (not specific one though)
Liver function (was high)

Do you think its likely that I have a viral infection? The only ones left could be HHV6 or Enterovirus.

I read that high CRP and lymphocytes are common in early stages of M.E.

Thanks
K

Hi K,

If you have swelling of the glands in your neck (cervical gland lymphodynia) and/or a chronic/recurring sore throat, then viridans strep species, specifically streptococcus sanguinis/parasanguinis would be high on the list.

If it is this one .... the wrong antibiotic choice will likely make it worse ....

This species is resistant to macrolides, fluroquinolines, penicillin, clindamycin, doxycyclene and others.

As far as auto-immunity goes, Strep Sanguinis bacteria has been shown to produce antigens ..... stimulate membrane expression of hnRNP A2/B1 in endothelial cells which is what LgA antibodies attack .... Or what our medical people call auto-immune disease ....

Mono and EBV can do the same .... Streptococcus has the ability to to activate the immune system to 100% .... and that is not enough to stop it .... In any body ......

The immune system over activation is the most likely cause for the fatigue .... Any further activity that takes energy totally zaps the body leaving it unable to provide energy for all the body systems ..... This is on top of the poisons and toxins coming from the gut ...

 

[taniaaust1]

I have done a fair bit of research into doctors who can help in UK and there looks to be three possible options:

I have got appt with an NHS doctor at the end of March. She specialises in orthostatic intolerance and POTS which I have got. Im confident she will help in that area but I'm not confident she will prescribe a good treatment plan overall for M.E.

Secondly, I am sending off my bloods to Dr Myhill who looks at the mitochondrial aspect of this illness. I think her treatment plan looks good.

Lastly, the only other doctor I've heard of is Dr William Weir who is based in London. This is private so I'm saving money for that. He MAY prescribe anti vitals but I'm just guessing.

Otherwise, looks like I'm on my own for a while anyway. that's why I was considering Humic Acid but I'm not sure.

I also read that high dose probiotic could help with enteoviruses, this I can get and start immediately.

What are your thoughts

K

What you are doing there is the kinds of things I'd recommend.. very important to have good doctors.. (I havent heard of Dr William Weir before thou, make sure he's a doctor who believes ME is a real physically illness before going to him. Not all UK ME/CFS specialists are good).

Seeing you know you have POTS.. you should be increasing your fluid, drinking 2-3 litres of water or electrolite solution per day (I myself like soda water) and also increase your salt intake. You could also try compression socks, I know they help some with POTS here but often medical compression stockings are needed.

I cant answer your question of the Humic acid.. Ive never heard of that before and yeah its easy to do the wrong thing with this illness so do take care.

High dose probiotic may be good.

You could consider something like getting a 23andME test done so you can find out about your methylation and if you have any issues there which could be affecting you too eg MTHFR mutation or anything else.

Sounds like you are on top of things early so have best hope of recovery.. the most important thing is to not over do it and make yourself any worst.

 

[MeSci]

Seeing you know you have POTS.. you should be increasing your fluid, drinking 2-3 litres of water or electrolite solution per day (I myself like soda water) and also increase your salt intake. You could also try compression socks, I know they help some with POTS here but often medical compression stockings are needed.

I agree with most of what Tania says but would advise against drinking a lot of water, as both POTS and ME are characterised by low electrolyte levels, so drinking pure water will exacerbate this by diluting the body fluids further. Drinks high in electrolytes would be preferable, and preferably without added sugar or artificial sweeteners. I drink fruit juice, but common hot drinks also contain electrolytes, especially cocoa. Definitely agree about increasing salt intake unless you have been warned not to for a good reason (but even high blood pressure is not necessarily a good reason to avoid salt).

 

[Katyw]

Thanks for your reply.

Yes, I have reoccurring sore throats but strangely no swollen glands in my neck only under my armpits (very painful!) does that mean anything?

The other strange thing is before I got ill with M.E I was getting loads of colds (never before suffered with them) and cold sores at least once a month which put down to a weakened immune system. But there's definitely something in the autoimmune argument. Maybe my immune system is no over active as my blood work shows that I'm fighting off things. It's so hard to know what the problem is!!

K

Hi K,

If you have swelling of the glands in your neck (cervical gland lymphodynia) and/or a chronic/recurring sore throat, then viridans strep species, specifically streptococcus sanguinis/parasanguinis would be high on the list.

If it is this one .... the wrong antibiotic choice will likely make it worse ....

This species is resistant to macrolides, fluroquinolines, penicillin, clindamycin, doxycyclene and others.

As far as auto-immunity goes, Strep Sanguinis bacteria has been shown to produce antigens ..... stimulate membrane expression of hnRNP A2/B1 in endothelial cells which is what LgA antibodies attack .... Or what our medical people call auto-immune disease ....

Mono and EBV can do the same .... Streptococcus has the ability to to activate the immune system to 100% .... and that is not enough to stop it .... In any body ......

The immune system over activation is the most likely cause for the fatigue .... Any further activity that takes energy totally zaps the body leaving it unable to provide energy for all the body systems ..... This is on top of the poisons and toxins coming from the gut ...

 

[Katyw]

Hi

It's great to know that I'm doing the right thing, sometimes you feel quite alone in your endeavours to self treat!

Yes, Dr William Weir is a good UK doctor who is known and advocates a solely M.E diagnosis and refuses to use the CFS name. He is private though.

That's really interesting info- I haven't heard for the 23andME test? Where can you get that done. I also haven't looked into the methylation problems. Really don't know much about that. Looks like something I need to research - thanks

I've got another 6 months of work so I can totally rest. I'm hoping I might be able to get a bit more though. How long do you think is recommend for complete rest. I have been doing this for 4 months now and it is really working. I knew I had M.E about two months into being ill as my mum suffers with it too.

K

What you are doing there is the kinds of things I'd recommend.. very important to have good doctors.. (I havent heard of Dr William Weir before thou, make sure he's a doctor who believes ME is a real physically illness before going to him. Not all UK ME/CFS specialists are good).

Seeing you know you have POTS.. you should be increasing your fluid, drinking 2-3 litres of water or electrolite solution per day (I myself like soda water) and also increase your salt intake. You could also try compression socks, I know they help some with POTS here but often medical compression stockings are needed.

I cant answer your question of the Humic acid.. Ive never heard of that before and yeah its easy to do the wrong thing with this illness so do take care.

High dose probiotic may be good.

You could consider something like getting a 23andME test done so you can find out about your methylation and if you have any issues there which could be affecting you too eg MTHFR mutation or anything else.

Sounds like you are on top of things early so have best hope of recovery.. the most important thing is to not over do it and make yourself any worst.

 

[Katyw]

Hi

Thanks for that info

I'm seeing the specialist at the end of March so hopefully she can test me for OI and POTS. Unfortunately, I do think in one of the few who have high blood pressure so I am reluctant to do much until I find out.

Will definitely enjoy a mug of coco though
K

I agree with most of what Tania says but would advise against drinking a lot of water, as both POTS and ME are characterised by low electrolyte levels, so drinking pure water will exacerbate this by diluting the body fluids further. Drinks high in electrolytes would be preferable, and preferably without added sugar or artificial sweeteners. I drink fruit juice, but common hot drinks also contain electrolytes, especially cocoa. Definitely agree about increasing salt intake unless you have been warned not to for a good reason (but even high blood pressure is not necessarily a good reason to avoid salt).

 

[philpot]

Katy, in answer to your question re brain scans, yes. I agree with your points that there are not enough specialists and how easy we be pushed into a category because they cannot find anything else. As you said, unless we have some easily diagnosed illness we have to become our own doctor. But I try my best to keep it as objective as I can.

I tend to look at complex systems and pick up early signs of things and this includes my own complex system and so I was at my doctor at the very earliest sign of something which was not correct. I think many people would have simply passed it off as something else and maybe 2 years later found themselves ill and completely forgotten about that very minor thing two years earlier. Yes maybe I am sad to pay attention to such things but there you go.

I think this gave me some influence later on and is why I have been able to get blood, muscle, nerve, brain, coordination tests etc. So we have gone through a process of elimination. Also of course I know all of my symptoms and how some have come and gone and yet others have remained and what has been a pattern.

However, my doctor has made his judgement and I know my symptoms, as does he, and I am in full agreement with his judgement, based on the evidence available. So what happens next?

My issue has been with me for 5 years, not six months.

6 months ago there was a 2 week period when it completely switched off, why? This also means it's possible!

I have some symptoms which are related to interference with the subconscious (automatic) control but when I then concentrate I can overcome them, why?

I have some symptoms which no matter how I concentrate I cannot overcome, why?

Our subconscious makes many decisions 6 seconds before our conscious is aware of it.

I had my muscles and nerves tested in the neurology department and they tested 100% ok. So does a muscle not get enough energy or is the brain process or nervous system or both being interfered with and either not requiring delivery of energy or else not picking up the correct feedback?

I noted that when I start to struggle with certain words or else struggle to talk generally that I could not form the words correctly in my brain, why? There are no muscles in my brain.

With regards to my memory I started to forget things so I did an experiment. Two things, an older tutors name and an entertainers name, which I could not recall for the life of me I made a point to not read anything where their names could possibly be. 5 weeks later I was feeling quite good again and hey presto I could remember their names with ease, why?

I did another experiment when I started to have issues reading. I noted that over time I was simply avoiding the reading or else making it easier for myself and then even that became an issue. I noted I had drifted into a poor situation. So I instead started reading more complex stuff and more or it and every time I had an issue I willed myself to read it.....I gave my brain no alternative but to read and absorb.....I was not going to be defeated. Now my reading has improved considerably, not perfect/easy, but I can now read scientific journals again.

I believe that my immune system is unbalanced and it has been and still is interfering with my brain processes. That interference will over time cause multiple other issues which then of course themselves cause other issues and so on. We cannot deal with them all because our self healing body needs to do it; we are not clever enough.

I do not have the solution at this time but I believe that we have to find a way to 'kick' our immune system back into sync or else minimise its interfering.

Regards.

PS: I am not really looking for answers to my questions as such I am more sharing my situation and thinking because I think we will solve ME collectively rather than one doctor or person comes up with a solution.

 

[MeSci]

I am not really looking for answers to my questions as such I am more sharing my situation and thinking because I think we will solve ME collectively rather than one doctor or person comes up with a solution.

You will find answers to a lot of your questions on Phoenix Rising. Re why muscles and brain won't work properly, you should find the Phoenix Rising article on mitochondria helpful. Both muscles and brain contain mitochondria, and they are, as you probably know, the 'batteries' of the cells. Ours don't work properly.

I have succeeded in improving my muscle mass and structure significantly with diet and supplements (as have others), which does help me to do more, but there is still no improvement in the amount of energy each mitochondrion can produce, so that I still run out of energy quickly. I still harbour hopes that they will start to function again properly one day...

 

[philpot]

MeSci, I thank you a lot for taking the time to post that reply and link, it was very interesting. As I have no solution here I must of course be objective and appreciate and respect that somewhere in that article there could be the real cause of our issue; I must as a scientist accept that.

Regards.

 

[MeSci]

MeSci, I thank you a lot for taking the time to post that reply and link, it was very interesting. As I have no solution here I must of course be objective and appreciate and respect that somewhere in that article there could be the real cause of our issue; I must as a scientist accept that.

Regards.

There is a range of theories as to the root cause(s). Personally I think that the mitochondrial problems are downstream of earlier links in the chain of causation. You can read about my preferred hypotheses in my blogpost here.

 

[Snowdrop]

@Katyw
Here is a link to 23and me:
https://www.23andme.com/

Welcome to PR. Hope you find treatments that help you.
SD

 

[philpot]

There is a range of theories as to the root cause(s). Personally I think that the mitochondrial problems are downstream of earlier links in the chain of causation. You can read about my preferred hypotheses in my blogpost here.

Many thanks again, your preferred hypotheses are interesting and well argued.

Regards.

 

[Katyw]

Hi

Thanks for your input.

Yes, I agree that the immune system is unbalanced. It's such a complex disease!

I think writing everything down and keep notes is essential and good practice. It's seems to have helped you get the message across to the doctors. If we are to be are own doctors then we need to understand our symptoms, any changes and improvements or new issues.

K

Katy, in answer to your question re brain scans, yes. I agree with your points that there are not enough specialists and how easy we be pushed into a category because they cannot find anything else. As you said, unless we have some easily diagnosed illness we have to become our own doctor. But I try my best to keep it as objective as I can.

I tend to look at complex systems and pick up early signs of things and this includes my own complex system and so I was at my doctor at the very earliest sign of something which was not correct. I think many people would have simply passed it off as something else and maybe 2 years later found themselves ill and completely forgotten about that very minor thing two years earlier. Yes maybe I am sad to pay attention to such things but there you go.

I think this gave me some influence later on and is why I have been able to get blood, muscle, nerve, brain, coordination tests etc. So we have gone through a process of elimination. Also of course I know all of my symptoms and how some have come and gone and yet others have remained and what has been a pattern.

However, my doctor has made his judgement and I know my symptoms, as does he, and I am in full agreement with his judgement, based on the evidence available. So what happens next?

My issue has been with me for 5 years, not six months.

6 months ago there was a 2 week period when it completely switched off, why? This also means it's possible!

I have some symptoms which are related to interference with the subconscious (automatic) control but when I then concentrate I can overcome them, why?

I have some symptoms which no matter how I concentrate I cannot overcome, why?

Our subconscious makes many decisions 6 seconds before our conscious is aware of it.

I had my muscles and nerves tested in the neurology department and they tested 100% ok. So does a muscle not get enough energy or is the brain process or nervous system or both being interfered with and either not requiring delivery of energy or else not picking up the correct feedback?

I noted that when I start to struggle with certain words or else struggle to talk generally that I could not form the words correctly in my brain, why? There are no muscles in my brain.

With regards to my memory I started to forget things so I did an experiment. Two things, an older tutors name and an entertainers name, which I could not recall for the life of me I made a point to not read anything where their names could possibly be. 5 weeks later I was feeling quite good again and hey presto I could remember their names with ease, why?

I did another experiment when I started to have issues reading. I noted that over time I was simply avoiding the reading or else making it easier for myself and then even that became an issue. I noted I had drifted into a poor situation. So I instead started reading more complex stuff and more or it and every time I had an issue I willed myself to read it.....I gave my brain no alternative but to read and absorb.....I was not going to be defeated. Now my reading has improved considerably, not perfect/easy, but I can now read scientific journals again.

I believe that my immune system is unbalanced and it has been and still is interfering with my brain processes. That interference will over time cause multiple other issues which then of course themselves cause other issues and so on. We cannot deal with them all because our self healing body needs to do it; we are not clever enough.

I do not have the solution at this time but I believe that we have to find a way to 'kick' our immune system back into sync or else minimise its interfering.

Regards.

PS: I am not really looking for answers to my questions as such I am more sharing my situation and thinking because I think we will solve ME collectively rather than one doctor or person comes up with a solution.

 

[philpot]

Doctors keep notes and when visited with the same types of records they tend to respond favourably. It's also easier to look back at notes rather than try to remember what happened 18 months ago.....it's often suprising the differences between what we initially thought and what we then think after checking our notes. Keep your chin up and remember you are not alone Katy. Regards.

 

[Katyw]

I'm going to keep on at my GP and like you said make sure lots of notes are being taken, then at least there is a trail of information that can be looked through. Even in just 6 months I've collected a lot!

I know that there are many people who have been having to deal with this terrible disease for many years so I'm just starting out on my journey. However, I've been through many years with my mum having it so I know the difficulties that are to be overcome.

Thanks

K

Doctors keep notes and when visited with the same types of records they tend to respond favourably. It's also easier to look back at notes rather than try to remember what happened 18 months ago.....it's often suprising the differences between what we initially thought and what we then think after checking our notes. Keep your chin up and remember you are not alone Katy. Regards.

 

[MeSci]

Doctors keep notes and when visited with the same types of records they tend to respond favourably. It's also easier to look back at notes rather than try to remember what happened 18 months ago.....it's often suprising the differences between what we initially thought and what we then think after checking our notes. Keep your chin up and remember you are not alone Katy. Regards.

The multitudinous errors in medical records make it even more important for patients to keep their own notes. I found my own medical records to be riddled with errors when I was eventually given copies - sent via the post inadequately packaged and falling out of the packaging.

I have sent pages of corrections to my GPs, but the corrections are not actually made in the relevant places - the patient's submission is simply appended to the records, and as most of us know, other doctors will tend to accept what was written by a colleague rather than the patient's corrections. All my childhood records are missing.

Some of the errors in my records are pretty serious, stating that I have conditions that I do not have, despite the copious evidence I have provided that I do not have these, and some would be libellous in any other context.