Distraught after seeing my GP :(

[Lae]

After joining this forum and reading more about ME I went ahead and got a mitochondria function profile done with Dr Myhill. I'd been to see my new GP before ordering the test to see if she would support me in it - she (refreshingly!! ) said that she was open minded about ME and would be happy to receive the letter of results and take any action that was medically appropriate. I was overwhelmed and felt SO optimistic!

The results came back last week which were interesting and gave me hope to have some sort of potential treatment plan for the first time. So I organised an appointment with my GP to see what she thought and whether she was happy to support me in treatment such as B12 injections, certain further tests.

I was surprised to walk in and find my GP sitting with a copy of the letter with annotations on it, having obviously been through it thoroughly.

She was kind about it (which in itself is a first for me with GPs in the UK in recent years), but used words such as "baloney" "no medical or scientific grounding" "hot air" to essentially say that most of what Myhill said was a load of rubbish! She said that some of it made sense and was important such as pacing, a healthy diet (but not stoneage, too extreme for someone underweight), sleep, certain supplements but she said that some of the tests were nonsensical. She said the advice given was potentially damaging. She also said that CoQ10 shouldn't be taken orally anyway as it just gets digested into the stomach! Basically she won't be supporting me with Dr Myhill.

There was also a recently qualified Cambridge doctor observing who was also very kind but she agreed that it made very little medical sense beyond the basics.

Now I don't know what to think. I feel so distraught and like all my hopes have come tumbling down around me. I just want to get better I hate this illness, I see or hear of old friends building lives around careers, buying houses with their partners as they have two incomes, starting families that they are able to care for. I want that too.

Sorry. Had to share.

 

[heapsreal]

After joining this forum and reading more about ME I went ahead and got a mitochondria function profile done with Dr Myhill. I'd been to see my new GP before ordering the test to see if she would support me in it - she (refreshingly!! ) said that she was open minded about ME and would be happy to receive the letter of results and take any action that was medically appropriate. I was overwhelmed and felt SO optimistic!

The results came back last week which were interesting and gave me hope to have some sort of potential treatment plan for the first time. So I organised an appointment with my GP to see what she thought and whether she was happy to support me in treatment such as B12 injections, certain further tests.

I was surprised to walk in and find my GP sitting with a copy of the letter with annotations on it, having obviously been through it thoroughly.

She was kind about it (which in itself is a first for me with GPs in the UK in recent years), but used words such as "baloney" "no medical or scientific grounding" "hot air" to essentially say that most of what Myhill said was a load of rubbish! She said that some of it made sense and was important such as pacing, a healthy diet (but not stoneage, too extreme for someone underweight), sleep, certain supplements but she said that some of the tests were nonsensical. She said the advice given was potentially damaging. She also said that CoQ10 shouldn't be taken orally anyway as it just gets digested into the stomach! Basically she won't be supporting me with Dr Myhill.

There was also a recently qualified Cambridge doctor observing who was also very kind but she agreed that it made very little medical sense beyond the basics.

Now I don't know what to think. I feel so distraught and like all my hopes have come tumbling down around me. I just want to get better I hate this illness, I see or hear of old friends building lives around careers, buying houses with their partners as they have two incomes, starting families that they are able to care for. I want that too.

Sorry. Had to share.

Tell her how you feel by not going back there. The health systems not going to help you so looks like u will have to do things on your own. Plenty of info and people here to help you with supplements etc. If u need basic prescription type medications like sleep meds etc I would find a new doc and use them for everything non cfs/me related, dont even tell them u have cfs/me as this can sometimes change the way they may treat you. eg if need sleep meds just tell the doc the basics thatyou are having problems getting good sleep and u feel tired from it, dont mention cfs. Maybe ask around here for other Britts who have a half decent doctor they can recommend to you.

Sorry you had to go through that crap from an ignorant doctor,
Dr phoenix rising can help alot more then most docs anyway.
cheers!!!

 

[snowathlete]

Sorry to hear what you've been through.
Unfortunately even if your GP thought the science had standing, they are seriously reticent to go beyond the NICE guidelines anyway. I had that exact problem. It is very frustrating and I feel your pain. There are things you can read about on here that you may want to try and hopefully your GP may be more open about them.

Keep hope because there is some very promising research being done now and if we're lucky we will get a game changer soon. In the meantime, we are all here to support you sand each other.

 

[Enid]

Yes I agree with heaps and snowathlete too - nothing doing with my GPs except the obvious - thyroxine, osteoporosis treatment and pain treatment. My Neurologist despite measured abnormalties "couldn't help" (though he agreed maybe ME and thought viral) so Dr Phoenix Rising the best advice all round. It is an enormous disappointment to discover the medical inertia here I well know - so keep going Lae and hope you will find aids here from the very well informed.

 

[maryb]

lae - my experience was totally the same, hearing them speak about dr my-hill like that made my blood boil, I saw a copy of some correspondence between my GP and a GI consultant who was a friend of hers, basically mocking Dr M's letter, they are pitiful in their ignorance- overpaid idiots.
heaps has given you the best advice, change your doctor and don't mention me/cfs, you're more likely to get more treatment or support. As he says just deal with each symptom on an individual basis, I just go in every couple of years and say I'm feeling tired, not able to do anything, they run a few blood tests which save me money, apart from that they will not help. Don;t think because its on your record they'll notice, they don't bother reading beyond the last visit normally, lazy to boot.
It is upsetting and comes as a shock but the bottom line is we're on our own.

 

[ukxmrv]

It may be that your GP heard of Dr Myhill and the ceaseless percecution by the GMC and decided that it was too risky for them to get involved in, so basically they chickened out.

There are so many of us reliant on private funding for medical treatment in the UK and often this means just a few supplements when we can afford them.

 

[Tally]

Lae I wish I could help you, but I have same problem. Doctors unwilling or unable to help, and life is passing me by while I watch everyone else move on. It's frustrating and heart wrenching.

 

[Esther12]

Personally, I think it's quite likely that your GP is right, and Myhill is making false claims. I don't know much about the specifics, but I know that Dr Shepherd at the ME Association is critical of the testing she uses, and says that it has no value. From what I've read of her, Myhill does seem willing to make claims very boldly and confidently, even when the evidence does not seem to support them.

To me, it sounds like your GP tried to do a good job, and put in a surprising amount of work to try to investigate the claims being made by Myhill. Unless you're aware of good evidence that your GP is wrong, I don't think it would be fair to blame them, even if their views are disappointing.

From what I've seen, there is little evidence to support any particular treatment for CFS, and sometimes false hope and inappropriate treatments are worse than nothing at all. I'm actually rather impressed that your doctor was willing to go through and investigate the claims that were being made by Myhill - a lot of GPs would not bother to do so, but would just take a 'caveat emptor' approach, and leave you to follow treatments which they thought were wrong, just because they did not want to get involved.

 

[Lae]

Thankyou for your replies and kind words. I just needed to vent - I was so looking forwards to a treatment plan that was actually supported by my GP and had got my hopes up far too much. Thats my own stupid fault, although I'm sure you have all had similar moments in your own quests for answers and "cures". There is a wonderful wealth of information on "Dr" (I like it!) Phoenix Rising, albeit difficult to wade through when your brain isn't co-operating!I live in a fairly rural location and we only have 3 GPs - this one is the very best of the 3! The other 2 are VERY dismissive and don't listen. At least this one is interested in ME...

Esther, I do not blame my GP at all. I sincerely thanked her for taking the time to read through the letter that Myhill had sent - I do appreciate her opinion, especially as she was kind and said that "I can see why you wanted to try this" as she had obviously picked up on the fact that I'd do anything to get better. I was just very upset that I didn't hear what I had wanted to hear - deep down I wanted to hear something along the lines "Oh yes! wonderful idea! Do as this lady says and you will feel healthy again! I'll get some b12 into you now! Here, have some CoQ10 and VegEPA whilst I contact the press and tell them we can now cure ME!"

I don't understand much about ME, and I don't know if Myhill is a quack or a saviour of the sick. I suspect she has some success cases, some real critics and many people somewhere inbetween. I have no idea where to go from here now. I guess the sensible option is to start by doing what I can - try some supplements that I can afford long term, greatly reduce sugar in my diet, eat only food that nourishes, look at pacing again. Or the other option is to just say $*^% it and throw myself into Myhills recommendations despite my GPs warnings.

My partner came home at lunch to talk about the outcome of my appointment and his views are equally confused. He said on one hand conventional medicine hasn't helped you until now, so why listen to a dismissive doctor. On the other hand he thinks for once this is a GP that was willing to at least consider treatments for ME and maybe we should heed her advice..

What are your opinions?

 

[Lae]

PS UKxmrv, she did mention the GMC hearings actually which suprised me that she had looked into it so much. She seemed concerned by this - although I did of course say that it had all been overturned.

 

[Esther12]

Esther, I do not blame my GP at all. I sincerely thanked her for taking the time to read through the letter that Myhill had sent - I do appreciate her opinion, especially as she was kind and said that "I can see why you wanted to try this" as she had obviously picked up on the fact that I'd do anything to get better. I was just very upset that I didn't hear what I had wanted to hear - deep down I wanted to hear something along the lines "Oh yes! wonderful idea! Do as this lady says and you will feel healthy again! I'll get some b12 into you now! Here, have some CoQ10 and VegEPA whilst I contact the press and tell them we can now cure ME!"

lol - yeah, I understand. I didn't mean to imply that I thought you'd responded poorly, as I didn't. I know how disappointing these sorts of things can be. My short-term advice: do something nice, relaxing and pleasurable to help yourself get over feeling upset. Spend a bit of time getting over any negative emotional reaction before you feel that you need to decide how to move forward. Venting here can be helpful too!

 

[Valentijn]

I've had the "bad doctors" too. At best they admit they don't remember anything about mitochondria since taking a pre-med physiology course. At worst they imply that you have a psychological problem that medical doctors can't help you with.

Depending on what was being tested, some of it is reputable, even if it isn't mainstream. That is, you can find reputable publications, discussions, sources, etc. If you post your results here somewhere, you can probably get some feedback about what it might mean, or at least where to look.

 

[Lae]

Thankyou

I'll post my results here, although I'm sure theres a more appropriate place to post them eventually. In fact, I recall reading a thread of people posting their mito function results, maybe I should dig that out later.
Test Normal range Result Interpretation (alternately emboldened just to make it easier to read for us foggies)
ATP levels 1.6-2.9nmol/106 1.39 Deficient

Ratio ATP/ATPMg More than 0.65 0.60 Deficient

Oxidative phosphorylation More than 60% 51.1 Slow due to deficiencies

Degree of blockage Up to 14% 4.3 Slow due to deficiencies

Vitamin B3 14 – 30µg/ml 13.7 Mild deficiency

L-carnitine 34 – 48 umol/l 32.8 Low

Co-enzyme Q10 0.55–2.00 umol/l 0.40 Low

Translocator protein ‘out’ More than 35% 29.2 Mildly blocked

Translocator protein ‘in’ 55 - 75% 85.8 Rapid depletion of ATP

Mitochondrial function score 1.00 - 3.00 0.49 Very poor Equivalent to 45/100 on CFS disability scale

Cell free DNA Up to 9.5ug DNA per dL plasma 12.8 Some increase in cell degradation <-- GP was particularly against this

SODase More than 40% 42 Normal

Glutathione peroxidase 67 – 90 U/gHb 74 Borderline selenium status

Glutathione 1.7 – 2.6 mmol/l 2.15 Normal

I also have the recommendations but too exhausted to copy/paste/format them too!

 

[Sparrow]

Did they happen to mention any test in particular that seemed meaningless?

It sounds like your doctor was sincere, and wants to help you. There is a difference between doctors who do not care, doctors who are misinformed, and doctors who are informed but do not see solutions. I'm not sure which category yours fits into, but I suspect it is some combination of the last two.

It's easy to decide that doctors who do not support use of supplements are uncaring (I'm not implying that's what you're doing, but it tends to be a trend here sometimes), but I don't think that's always the case. I think our challenge is in separating what stems from a lack of information, and what comes from a valid place of skepticism. Not all treatment protocols have as much basis as they claim. And there may very well be problems with absorbing Q10 through the stomach, or there may be special kinds of delivery used in some brands of supplement that help to bypass that which your doctor is not aware of, or there may be large problems with absorption but with a tiny gain that is worth it.

I have done Myhill's tests and protocol. I believe her to be dedicated and very well-intentioned. I think that many of her suggestions are good for helping to take some of the extra strain off the body and allow it to heal better on its own. But it isn't a miracle program. I think less activity probably made a bigger difference to my health than all of the thousands of dollars of supplements I've taken. Pacing and respecting your limits is critical.

On the plus side, almost none of Myhill's suggestions require doctor involvement. Sublingual B12 can help take the place of injections, and transdermal magnesium spray can help offset those injections some. So you might still be able to give it a try on your own.

I think it's a natural part of this illness that we all go through a stage (especially shortly after our diagnosis) where we are desperate for answers, and we try protocol after protocol, and have hope that each will be the answer, and feel like the doubters are uninformed, or that people who didn't recover didn't undertake the full program, etc. And we're so hopeful that there is an answer out there for us. And that we will be one of the ones who responds. And we will try just about anything that promises hope.

I'm still there. I've moved on from just supplements to antivirals. But I still want to believe that something out there can help me. I'm not sure that any of what I've done or plan to do is worth the money. ...But I don't want to give up trying.

Good luck to you. I wish you all the best in your recovery efforts, and I'm truly sorry that there aren't more answers out there for you.

 

[Shell]

Can't add much to what others have said here Lae, other than the hope-despair roller coaster is a nightmare and I'm sorry you've joined so many of us here on the damn thing.
Sometimes I feel fighting the disease is as exhausting as having the disease.
Your results look like good pointers for something, so perhaps your GP would go with those results even if she doesn't accept Dr Myhill's recommendations???
I've tried Co E Q10 orally in some wild hope I could get my tacky and arrythmmias under some kind of control. No change yet, so maybe your GP is right. (sigh).
Hang in there.

 

[Valentijn]

Does it say what "Mitochondrial Function Score" is based on? "Degree of Blockage" and "Oxidative Phosphorylation" aren't clear either. I can understand a doctor getting annoyed by those if they aren't fully explained.

 

[Valentijn]

Cell free DNA Up to 9.5ug DNA per dL plasma 12.8 Some increase in cell degradation <-- GP was particularly against this

Did the GP say why? It's not a specific marker of anything beyond cell death (or DNA getting out somehow), but it looks like it's a fairly credible test to run in various diseases. It's also sometimes elevated in healthy people, but that doesn't mean it isn't significant when you're severely symptomatic.

But I think the suggestions here are good ... try supplementing the things you're deficient in, and see if it helps. You don't need your doctor to help you with that, though I suppose it would be nice to get medical input beyond "there's nothing wrong with you, hence any abnormal tests results are meaningless"

 

[Xandoff]

Thankyou for your replies and kind words. I just needed to vent - I was so looking forwards to a treatment plan that was actually supported by my GP and had got my hopes up far too much. Thats my own stupid fault, although I'm sure you have all had similar moments in your own quests for answers and "cures". There is a wonderful wealth of information on "Dr" (I like it!) Phoenix Rising, albeit difficult to wade through when your brain isn't co-operating!I live in a fairly rural location and we only have 3 GPs - this one is the very best of the 3! The other 2 are VERY dismissive and don't listen. At least this one is interested in ME...

Esther, I do not blame my GP at all. I sincerely thanked her for taking the time to read through the letter that Myhill had sent - I do appreciate her opinion, especially as she was kind and said that "I can see why you wanted to try this" as she had obviously picked up on the fact that I'd do anything to get better. I was just very upset that I didn't hear what I had wanted to hear - deep down I wanted to hear something along the lines "Oh yes! wonderful idea! Do as this lady says and you will feel healthy again! I'll get some b12 into you now! Here, have some CoQ10 and VegEPA whilst I contact the press and tell them we can now cure ME!"

I don't understand much about ME, and I don't know if Myhill is a quack or a saviour of the sick. I suspect she has some success cases, some real critics and many people somewhere inbetween. I have no idea where to go from here now. I guess the sensible option is to start by doing what I can - try some supplements that I can afford long term, greatly reduce sugar in my diet, eat only food that nourishes, look at pacing again. Or the other option is to just say $*^% it and throw myself into Myhills recommendations despite my GPs warnings.

My partner came home at lunch to talk about the outcome of my appointment and his views are equally confused. He said on one hand conventional medicine hasn't helped you until now, so why listen to a dismissive doctor. On the other hand he thinks for once this is a GP that was willing to at least consider treatments for ME and maybe we should heed her advice..

What are your opinions?

Lae, ....It took me seven years of slamming my head against the medical brick wall of my local GP who is a good and competent Doctor. What started out as a little chip on my shoulder grew and grew till the weight was unbearable. My Doctors belief system was built here in the U.S. on the CDC's (Center for Disease Control) propaganda that ME CFS is all in your head. I finally found a real ME-CFS Doctor 160 miles from where I live through the Co-cure list here in the United States, and that as they say made all the difference. Althouh I struggle daily with this insidious disease, my ME-CFS Doctor does not think I am crazy, he also ran all the tests the proved that half my immune system is dormant. (see my profile). Lae,.....you are not crazy. I encourage you to IGNORE your local GP and the conventional medical system entirely. They can not help us because they have been brain-washed. Many disease like Lupus were thought to be "hysterical". Ulcers were thought to be caused by "stress" not by a bug that anti biotics can kill. H-pylori something that I can't remember or can't spell cause ulcers, not stress!!!
You are not crazy. Co-Q-10 helps me at 300mg a day. My free Irish advice is to stay away from the traditional medical system unless you break a bone or having something else they can help you with. God bless you Lae, we have all been where you are. There is hope. Don't give up!

 

[Sallysblooms]

SO odd that doctor has no clue about CoQ10. That supplement is so very good for us! I guess some doctors just don't want to know how supplements heal. I hope you can find a good doctor. They make all the difference when you find them. Integrative MD's are the best.

 

[heapsreal]

Quick look at your test and i would suggest some varied antioxidants q10, lipoic acid, vit e, acetl l carnitne, vit c. then add creatine and ribose to help with ATP. AFter that make sure your getting a good amount of sleep , medicated if neccessary.

If u could get some immune and viral testing would be great, hopefully other britts can help u with that one.

cheers!!!