Mitochondrial tests and treatments

[justy]

Sorry I haven't been able to take part in this discussion as I haven't been too good recently and spreading myself too thin. In bed now with a chest infection.

So I haven't read all the thread, but wanted to say briefly (and perhaps ill say more another day) that I had mitochondrial function testing with Dr Myhill in 2010. Initially I was very excited to get some results that showed real disease process in my body.

My results were similar to many other PWME and it showed I was very very ill with a functioning score of only 25% on Bells scale. I also had problems with ATP, numerous nutritional deficiencies, very high cell free DNA, problems with translocator protein membrane, severe antioxidant issues etc etc.

I since tried all the mito support supps suggested. Most of them I couldn't tolerate so haven't been able to pursue this. The ones I could made no difference to me at all. I still take them in case they are helping in ways I cant feel.

In the end I have spent a lot of money on this when all it really showed was that I am very sick. It isn't specific enough to PWME - people with flu or having chemo have high cell free DNA. My GP dismissed it and despite symptoms they are not interested in muscle biopsies for testing. One GP told me the report and testing was 'too difficult' for him to understand. Despite low levels of CO Q10 I was refused a prescription for it in the UK, which would have made it free for me.

I don't honesty think mitochondria is the ROOT cause of this illness, or my illness. It was a red herring that sent me off on years of trying to fix it when I have now found out that I actuall have two possible bacterial infections which need treating. No amount of mito support is going to fix those, although I do believe it is part of the picture.

all the best
Justy

 

[justy]

Now that I have read through the thread (phew that was exhausting) I would like to say that despite a gradual improvement in symptoms over the last 6 years (been ill to varying degrees for 20 years, but last 6 severe relapse from long remission after measles) I do not think waiting any longer is ok. I don't think spending most of my life in the house resting and only going out with my kids in a wheelchair a couple of times a month is good enough, nor is the quality of my life good enough.

Subsequently I have been to see a top M.E specialist in Europe who has done extensive testing and I will be happy to try treatments for the bacterial infections that have been found. Why would I not do this, why would I let an untreated infection that has ruined my life carry on damaging my body when I could try antibiotic therapy.

I have to have some hope beyond, oh well, maybe in another 6 years i'll be a bit better.

 

[AndyPandy]

Now that I have read through the thread (phew that was exhausting) I would like to say that despite a gradual improvement in symptoms over the last 6 years (been ill to varying degrees for 20 years, but last 6 severe relapse from long remission after measles) I do not think waiting any longer is ok. I don't think spending most of my life in the house resting and only going out with my kids in a wheelchair a couple of times a month is good enough, nor is the quality of my life good enough.

Subsequently I have been to see a top M.E specialist in Europe who has done extensive testing and I will be happy to try treatments for the bacterial infections that have been found. Why would I not do this, why would I let an untreated infection that has ruined my life carry on damaging my body when I could try antibiotic therapy.

I have to have some hope beyond, oh well, maybe in another 6 years i'll be a bit better.

I appreciate where you are coming from @justy and others. I feel life is pretty much passing me by every day.

I have adopted a conservative approach so far, not being willing to take a gamble on treatments that aren't targetted to my specific situation, particularly due to my long history of adverse reactions.

When the Gold Coast clinic opens I am keen to have extensive testing done.

When I get the results I will be in a better position to decide what to do next.

Best wishes to all on PR who are doing what they think is right for them in their search for better health.

I am indebted to you all for sharing your wisdom and experiences.

 

[Gingergrrl]

This post is for everyone @justy @AndyPandy @Valentijn @heapsreal @Sushi @SOC @NK17 @SDSue and anyone I missed who has tried various treatments and taken that leap of faith that it will work. You guys are all my heroes and the info that I have learned on this board has been invaluable.

For me even with certain supplements & even Florinef I was afraid to start but am glad I did or I would never know. Once I see the specialist and they can pinpoint which infections I actually have, I may be doing some more radical treatments too. But believe me I will be asking you guys a lot of questions first and doing my research too!

 

[Dr.Patient]

@justy The mitochondrial support treatments are just basic and nonspecific. It's like putting bandages on a bleeding body. The medical community needs to find that specific artery that is bleeding and fix it.

 

[Dr.Patient]

The current mitochondrial diagnoses are pretty good, they do show objectively a physical basis of our illness, and show the main problem which is lack of energy. What would be interesting is if any ME patient had these tests and they came back normal.

 

[Gingergrrl]

The current mitochondrial diagnoses are pretty good, they do show objectively a physical basis of our illness, and show the main problem which is lack of energy. What would be interesting is if any ME patient had these tests and they came back normal.

@Dr.Patient I am going to be having the ION panel test by Metametrix done soon. It is supposed to look at mito issues. I asked about it in another thread but now I can't find the thread and I don't know if you saw it. Do you think that is a good mito test along the lines of Sarah Myhill's?

 

[Gingergrrl]

Is it normal in wanting to reach across the desk and whacking the ignorant & arrogant so and so?!?

Had a dose of this debacle today. Was in tears later on. It has been a while since I last had this kind of thing happen

@end so sorry this happened to you today and YES it is normal!

 

[Dr.Patient]

@Dr.Patient I am going to be having the ION panel test by Metametrix done soon. It is supposed to look at mito issues. I asked about it in another thread but now I can't find the thread and I don't know if you saw it. Do you think that is a good mito test along the lines of Sarah Myhill's?

I am not familiar with that test, thx

 

[Leopardtail]

I consider (and some may not) as "radical" anything that is injected, like glutathione, Myer's cocktail, IV Vit C, etc which are not "mainstream" medicine. Also things like Valcyte, Ampligen, Rituxan, multiple antibiotics, etc which involve multiple visits, testing, risk of complications, etc with some patients benefiting and some worsening - not good enough for me. I can understand if desperation can drive people to these...

In my case before, and in three other people who have shared their stories, taking care of symptoms and some "low risk" treatments, and doing "Aggressive Rest Therapy", have helped them recover to almost normal, so I choose to do that.

Again, it may depend on every person's individual illness.

I agree to some extent with the points you are making and they have special relevance to ME patients. Many of us are much more likely to respond very badly to 'conventional medicine' and much better natural versions of it. That does create a dilemma of it's own though in that the most effective treatments for us, get very little research done. Where it is at all possible my own approach is a little closer to a doctors: if it's not found in food, test first then act. If on the other hand it's a vitamer - try a small amount and see what happens, increase slowly.

Having said that some of the safest and most effective treatments have not been subjected to high degrees of repetition in studies (funding issues and snotty medical attitudes amongst funding bodies). The big issues with disease such as ME is that medics are great at understanding what an organs function look's like from the outside, or what it looks like under a microscope, but often not great at all when it comes to organic chemistry or much else that goes on inside cells.

We actually need a lot more biochemists and less doctors involved in researching our diseases if we are ever to move forwards. The 'standard' medical tests often used to compare the usefulness of measures are in of and themselves profoundly inadequate. the level of Vitamin B9 within cells can be very different to levels outside of them - yet because medics do not understand cells well enough they compare intra-cellular measures against serum measures to establish 'accuracy'.

The other thing you need to be aware of with safer but still unconventional treatments is that waiting to long can force you onto stronger and nastier treatments. Recovery rates are widely regarded as much better with prompt diagnosis and prompt treatment. Hence, yes I agree care is necessary - however dithering is a very bad idea. I ended up 'being my own medic' only after long periods of inaction because I believed the nonsense information from my doctor, and had to wait a very long time to get a correct diagnosis. In that time I have developed vastly more symptoms, stronger symptoms and very likely more nasty biochemistry.

 

[Leopardtail]

I am not familiar with that test, thx

MyHill et al. have published three papers detailing the test, the correlation with symptoms etc. All available free on Pubmed.

 

[heapsreal]

I think cfs/me needs to be treated aggressively. Studies have shown that full recoveries are most likely to occur within the first 3 years. If i had the knowledge i have now and resources i would be hunting down every dam infection i could find and using immune mods to get my immune system functioning to clear any infections. A big variety of antioxidants to to help reduce any type of damage and aggressively rest/pace myself.

I think that 3 years could possibly expand to maybe 4-5 yrs. For myself it was 7 yrs after onset of cfs/me that i started antivirals which made a big impact. This is referring to my circumstances, but i always think that if i was treated at the onset of my illness, things would have been different. I just wonder if any case of mono(ebv/cmv/hhv6) and chickenpox in adults were treated aggressively with antivirals that the incidence of cfs/me would be greatly reduced. Decent enteroviral testing for those with onset of gastro/flu type symptoms and early treatment for those who have EV with interferon or interferon inducers could greatly reduce the incidence of cfs/me??

I think the current practise of doctors saying to just take it easy for 6 weeks and you will get better on your own needs to be changed. Im sure there is a percentage that will but there is a good percentage of teens/adults that are never the same after these infections. It should be treated like a shingles outbreak where antivirals are used at the onset, but unlike shingles u cant visibly see ebv/cmv etc. I think it would be good preventative medicine.

Many other types of treatments to me seem to be down stream effects of whats going on, not that they arent helpful but aggressive early treatment may prevent these down stream issues from occurring in the first place??