Treament Plans

Lyla Arthurs

New Member
I just recently switched doctors because the one I had wasnt really doing much to treat my ME/CFS. My new doctor doesnt know a lot about it but is very proactive and willing to learn.

He wants to meet again next Tuesday to work out a treatment plan. I've obviously suggested B12 injections as part of that as in the past when I've had them, I've felt fantastic. I've suggested one injection a week as the sources I've come across in my research suggests something along those lines.

I would like to know how often others out there get B12 injections AND I'd like to know what meds people are taking that they are finding helpful in managing the symptoms of ME/CFS. I dont really know a lot about the meds people take for it so would appreciate any input on what people have found works for them.

I know it will be trial and error finding a plan that works specifically for me but we need a starting point. Also I'm based in New Zealand so I'm not sure what meds are available to me here.
 

Who Me?

Well-Known Member
Dr Cheney used to rx hydroxycobalamin 10,000 mcg/ ml I think I used to it every day.

If it makes you feel good that's great but it's really not a treatment.

Depending on what your labs show, will determine what you need to do treatment wise.

Have you been tested for viruses and infections? That will help. Ebv,
Cmv, HHV6, CPN, Varicella zoster, mycoplasma. Probably more I'm forgetting. Any of these would need antivirals and antibiotics.


If you have sleep issues then stuff for that.

Pain, stuff for that. I'm not sure what labs you can get done there.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Diet is important -even if you don't have gut symptoms. I do best on paleo-like low glycemic diet that emphasizes protein and vegies and de - emphasizes carbs. I would cut out gluten and dairy for a month or two and see how that goes. The nightshades also produce problems with inflammation for me.

I'm also trying Dr. Craigs quickie fasts - not eating after 7pm or so at night and then eating again at lunch...She claims they're very helpful in allowing your body to rests.

For pain definitely check out low dose naltrexone and if you have access to it medical marijuana - it's good for sleep as well.

The Synergy fatigue formula - pretty expensive - works well for me on the supplement side - it contains mitochondrial and immune support.

A pleasant and cheap surprise for me is home-made kefir - loaded with probiotics. You can also make your own sauerkraut. There are some posts on fermented foods in the gut treatment section.

Of course there's pacing and thinking good thoughts - that always helps if you can manage it.

I'm going to be looking into some brain nutrients and AHCC.. .

http://www.cortjohnson.org/forums/threads/four-must-have-brain-nutrients-for-me-cfs-and-or-fm.2635/
 

Who Me?

Well-Known Member
@Cort all good suggestions but they are not treatments. You can't just change your diet and take some supplements, no matter how expensive, and expect to work towards feeling better. . IMO of course.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
I would be wary of looking for a complete recovery. It does happen and it does happen diet occasionally but when it happens it often takes a variety of things working together.

I'm more focused on getting better and in that regard each of those things can help some people get better - and not doing them makes some people feel worse. For instance, in Dr. Rowe's experience if you have a sensitivity to dairy and don't cut dairy out - then nothing will work...the immune reaction to the dairy overwhelms any attempts at improvement.

At this state I think treating ME/CFS/FM is like making a bunch of small wins in hopes that the healing process will assert itself.
 

Who Me?

Well-Known Member
I agree, and I misspoke when i said recover. I'll go back and change that.

I just meant that diet and supplements alone, IMO and in my case, will not work. I think it depends on the cause of your illness to start with. Of course you if have dairy or food allergies you have to address that.

If viral, as in my case, you have to take AV's.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I agree, and I misspoke when i said recover. I'll go back and change that.

I just meant that diet and supplements alone, IMO and in my case, will not work. I think it depends on the cause of your illness to start with. Of course you if have dairy or food allergies you have to address that.

If viral, as in my case, you have to take AV's.
I think in the vast majority of cases you are absolutely right....
 

Lyla Arthurs

New Member
Diet is important -even if you don't have gut symptoms. I do best on paleo-like low glycemic diet that emphasizes protein and vegies and de - emphasizes carbs. I would cut out gluten and dairy for a month or two and see how that goes. The nightshades also produce problems with inflammation for me.

Unfortunately in this country our most expensive food sources is fruit and veg, followed very closely by meat. To eat extremely healthy here is next to impossible when you can't work and have to live on benefits. When I was in the States and Canada last year I was shocked by just how much cheaper it is to buy food there. So I am limited by money on how well I can eat.

Secondly, in regards to being tested ( I know you didnt say this but I can't go back and quote it) for viruses. I was diagnosed with ME/CFS almost 2 years ago. I've had test after test after test on a regular basis. C-Reactive Protein is always an issue, B12 is slightly down but of course the levels in your cerebral spinal fluid can be way lower than your actual bloods. All tests point to ME/CFS.
Doctors here are way behind in how to treat this illness. In fact most doctors dont believe its a true illness here. So its not a case of do I have it. Its a case of teaching a doctor how to treat it the way the rest of the world is treating it. Hence why I'm here asking for advice on what other meds people have been using that they find have worked. So that myself and my doctor can now start to go through the process of finding what works for me.

Thirdly, thanks for the advice on LDN I was reading up on this yesterday and the results seem positive. There is only one doctor in my entire area that prescribes LDN (Not an easy thing to get prescribed in New Zealand) so I will have to contact him tomorrow and see what he can do or if he can contact my doctor regarding it.
 

Who Me?

Well-Known Member
CFS is a disease of exclusion. It's helpful to find out what might be the source if your illness

I know mine is from a virus. I have been tested for viruses and treat them with antivirals. If your immune system is a mess then you have to work with that.

Do you know how you got sick?

I know people in New Zealand and Australia and you can get tested for these things. Maybe not as sophisticated as in the US but you can get it done.

Without an understanding of what may be causing your disease you are just stabbing in the dark at what will work to help you feel better.

We all do the best we can with the money and resources we have. Some are more fortunate. Bless cort's heart but most if what he suggested is hugely expensive. Many of us can't afford that.

If I had to choose between veggies and labs to give me more info I'd do the labs in a heart beat

You can't mess around with this. The sooner you start doing things the better chance you'll have to feel better.

Re LDN. If you can get s doc to rx naltrexone you can make your own LDN. That's what I did and it was much cheaper. I got no benefit from it however and it's just one thing in the arsenal you need to smash CFS/ME
 

Lyla Arthurs

New Member
They believe I got sick from having Endometriosis. The two often go hand in hand with ME usually showing up after the body has had to fight the Endo for some time. No doctor has ever pinpointed a particular virus.

I appreciate Cort's suggestion. And I have tried the whole suppliments, eat a healthy well rounded diet approach and yes it obviously did make me feel better. But I did some research on the suppliments and enzymes that one should be taking for ME/CFS to help. None of them are funded in this country and it would cost on average $70 a week for them. I have between $50-$70 a week to spend on food and here that doesnt buy much at all. Its an ongoing argument with the government of this country that they should be lowering the price of healthy foods, fruit, veg etc to encourage better diets. But they just dont seem to really care all that much about the health of their people.

I've been fighting with doctors for 2 years now to get them to listen to treat me properly for this. Most of them just want to send me to see a therapist and not bother actually treating the illness because as far as they are concerned its all in my head. Or they've tried to treat me with things that just didnt work and wouldnt listen to me about what was and wasnt working.

If I could have got this sorted sooner I most definitely would have but this is the first time I've had a doctor that actually is willing to learn about ME and actually do something about it.

How does one go about making LDN?
 

Who Me?

Well-Known Member
Lots of us have to decide between supplements and food. RX's and food. It's a problem world wide.

I didn't mean "make" your own LDN. You get your doc to RX naltrexone which is 50 mgs. Then you crush it, put it 50 ml water, and each day draw off the amount you want.

So if you want 1 mg. you draw off one ml. 2.5 mgs then 2.5 ml.

If you are going to take LDN, you have to start really low, maybe no more than .5 mgs for a few days and slowly go up.

I'm sure you read that you have to take it between 9 pm and 3 a.m. This is so it works with an endorphin rush.

I was unable to take it at night, I never slept for the 3 days I tried it. I took it in the am and others do because of the same issue. After 6 months I just found I got no benefit from it.
 

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