seems to be working well

[dmbaken]

My wife started on the a version simplified protocol a couple of weeks ago. She has been on 1/4 Folate, 1/4 Folopro, 1mg Meth B12 (used this because when we tried this protocol with my daughter a few years ago and she used the Hydroxy B12 there was no change) and is now up to 1 of the neuro multi. Have not used the other supp as did not have any.

We have done no testing.

Had a week of miserable headache, stomach pain, nausea, diarrhoea, and had a numb lip for a few days.

She estimates that functioning has risen from about 15% to 30%. Has more energy but no improvement in brain function.

Other things she has started at about the same time is taking Thyroid Energy and monitoring her heart rate with a HR monitor.

So far so good.

Don

 

[determined]

Hi Don,
I'm glad to hear of your success. Please keep us posted in a few weeks/months.

 

[richvank]

Hi, Don.

I'm happy to hear this, too. Hope the improvement continues.

Rich

 

[dmbaken]

Hi,

Wife wife continues to improve. She spent 5 hours in town today. Prior to this she would struggle with one hour in town and would then have to rest the next day. We are so impressed by the improvement we have put two of our daughters on the protocol also.

Don

 

[richvank]

Hi,

Wife wife continues to improve. She spent 5 hours in town today. Prior to this she would struggle with one hour in town and would then have to rest the next day. We are so impressed by the improvement we have put two of our daughters on the protocol also.

Don

Hi, Don.

This is sounding really good! I hope it continues.

Rich

 

[sianrecovery]

My experience of the first two weeks is that I definitely have more energy, but deeper lows too - but they are more transient - kind of like waves in the sea being ruffled by a stronger wind. I am also slightly nauseated, which is new, but is perfectly tolerable. Lets keep keeping on...

 

[richvank]

My experience of the first two weeks is that I definitely have more energy, but deeper lows too - but they are more transient - kind of like waves in the sea being ruffled by a stronger wind. I am also slightly nauseated, which is new, but is perfectly tolerable. Lets keep keeping on...

O.K., Sian. I like your waves image. Hang in there. Hopefully there is a calm coming!

Rich

 

[determined]

This is great news! I'm so happy for you and your family.

 

[dmbaken]

Hi all,

My wife (MA) is still experiencing more energy which has been great in the lead up to Christmas.

Over the last 3-4 years MA's ME had improved with lots of meditation calming down her HPA axis. Then last year she slipped a disc in her back and after the physio did not work she had a steriod injection into the site which worked great. MA did this becasue she had forgotten that steriods make her ME significantly worse (after having avoided them for years). So her pain went away but her ME has been bad all year. In fact it only improved with the simplified meth protocol.

Unfortuneately about 6 weeks ago MA seemed to have slipped a disc in her back which is causing her alot of pain. She is going to physio but it is not working. So of course we are now wondering about another steroid injection but MA does not want her ME to get worse again.

So the question is: Is her response to the steroid likely to be better not that her methylation cycle is working well? Logic (with my very limited knowledge) says it will but we would be interested in the opinions of some more knowledgeable people.

Thanks

Don

 

[heapsreal]

Hi all,

My wife (MA) is still experiencing more energy which has been great in the lead up to Christmas.

Over the last 3-4 years MA's ME had improved with lots of meditation calming down her HPA axis. Then last year she slipped a disc in her back and after the physio did not work she had a steriod injection into the site which worked great. MA did this becasue she had forgotten that steriods make her ME significantly worse (after having avoided them for years). So her pain went away but her ME has been bad all year. In fact it only improved with the simplified meth protocol.

Unfortuneately about 6 weeks ago MA seemed to have slipped a disc in her back which is causing her alot of pain. She is going to physio but it is not working. So of course we are now wondering about another steroid injection but MA does not want her ME to get worse again.

So the question is: Is her response to the steroid likely to be better not that her methylation cycle is working well? Logic (with my very limited knowledge) says it will but we would be interested in the opinions of some more knowledgeable people.

Thanks

Don

instead of steriod shots, look into toradol shots. Toradol is a non steriodal anti-inflammatory and is quite strong, can only be used for a few days, but it is a good pain reliever alternative to steriod injections for back problems. In my experience its not stimulating in any way.

cheers!!!

 

[Vegas]

Steroids

If she had reacted adversely to corticosteroid injections in the past, I would continue to avoid these. This would include oral and injectable forms. I think your premise is correct, that improvement in the HPA axis would likely lead to tolerance of these, but judging from what you have written, I don't think she is far enough along. Ketorolac tromethamine (Toradol) might be an option for some relief, but I don't see this prescribed very often on an outpatient basis. Unfortunately there are lots of problems for folks in this situation, with Acetaminophen (paracetamol) lowering glutathione and NSAIDS contributing to peptic ulcers among other gi problems. That said, if she is having some discogenic pain, she should continue to try the physical therapy, but with a practitioner who is truly a spinal expert. There is definitely a difference in those having this extra specialization. Although it may not be effective for true discogenic symptoms, she make get some relief from topical analgesics...lidocaine or fentanyl patches. The latter being a narcotic, but since it is absorbed transdermally the concentration passing through the CNS is relatively small. If she is having radicular pain, she can consider some of the neruo-epileptics. These unfortunately cause drowsiness; therefore, they may be intolerable. Above all, I would not rush into surgery as these problems typically resolve over time, particularly with appropriate therapy. Also, avoid any invasive disc procedures like IDET or Discography. That said, if all else fails, you have to do what you have to do, even if that means steroids because the pain response is certainly a stressor that taxes her resources as well. Regardless, keep doing the B12/folate. Sorry, I couldn't be of more help.

 

[dmbaken]

Hi,

Thanks Vegas and Heapsreal for sharing your knowledge. I was thinking that maybe a better methlylation cycle would mean that she could handle the corticosteroids better but we will heed your warning.

Yes we will continue with the B12 etc and physio.

This is such a pain (excuse the pun) as MA is enjoying the extra energy and clearer head (she estimates that she has gone from a 1 to a 3 on the EIPS). The back pain came about the time she started the Methalation protocol so we wonder how good she would be without this pain.

Thanks again.

Don

 

[dmbaken]

Hi,

My wife continues to improve.

She decided she would prefer the extreme pain in her back than getting her bad ME symptoms back (helped me realise just how bad it must be for her). As it turns out her pain is reducing with physio etc.

Her ME symptoms are now much less and she is off her bed most of the day.

Two of our daughters are on the protocol now too (about a month I think). It is harder to tell with them as they communicate less about it but at least one seems to be doing better.

I hope this update encourages others to give this a try.

Don

 

[dmbaken]

Hi,

My wife continues to improve. Since being on the Simplified Meth protocol she has gone from being on her bed all day except for a couple of hour to only needing an hours rest a day. She is even doing gentle exercise for 20-40 minutes a day. One interesting difference is that in the past if she had exerted energy in the evening she would have trouble getting to sleep and would need to meditate and then it would still take an hour or two to get to sleep. Now there is none of that needed and she goes straight to sleep (she is still using melatonin).

Two of my daughters have now been on it for 6-7 weeks but there is not such obvious change (but they were not as bad to start with). I would have thought that with the same genes (or at least very similar) they would have got the same result (we have not done any testing as it would have cost way too much with 3 people). Does anyone have any ideas about why it might not be working so well for them?

Thanks

Don

 

[richvank]

Hi, Don.

I think it's really hard to say. Of course, your daughters would have received only half their genes from their mother, so there clearly will be genetic differences. They could also have different nutritional status, different pathogens or toxins, and other differences. Sorry that testing is not feasible. I think that's about the only way to nail down what might be different.
Hopefully this treatment will help them, too, if they also have ME/CFS.

Best regards,

Rich

 

[topaz]

Hi Don

CAn I conclude that your daughters do suffer from ME but not to the same severity as your wife?

thanks

 

[dmbaken]

Hi,

Thanks for your replies. Yes these two daughters satisfy the Canadian critieria (I have a 3rd daughter with similar symptoms but she does not satisfy the CCC).

 

[dmbaken]

Hi,

I just thought I would update where we got to.

Things improved well for my wife and by March she was able to do 40-50 minutes light exercise (stretching etc) a day and be reasonably active. Then at the end of March she did too much and has been struggling since then to recover.

Two of my daughters are also trying the simplified protocol but there does not seem to be any response for them.

Maybe we should try testing (expensive with 3 people and complicated) or play around with supplements (complicated).

Don

 

[richvank]

Hi, Don.

I hope your wife will be able to recover again soon.

With regard to your daughters' lack of response, here's something I posted a short time ago in another thread:


"What are some possible reasons why a PWME would experience no response from the methylation treatment? One obvious possibility might be that the person does not have the vicious circle mechanism described above. Though this mechanism appears to be fundamental to the pathophysiology of ME/CFS, there may be some people who have similar symptoms but do not have this vicious circle. This is one of the main reasons it is helpful to run the methylation pathways panel (I refer here to the biochemical panel, not the genomic panel with a similar name.)

"I suspect that another possibility is deficiency in one or more of the essential nutrients for the methylation cycle and related pathways. There are several vitamins, minerals and essential amino acids needed to support this part of the metabolism, and many PWMEs have been found to be deficient in some of them. Those who have hemopyrrollactamuria (HPU) are a subset of this group. Again, testing is available to determine whether there are deficiencies. This includes direct determination of the levels of the nutrients in the blood, measurements of certain enzyme activities that are specific to particular nutrients, and inferring deficiencies from metabolic tests (such as urine organic acids and amino acids in the urine), hair mineral tests, and essential element tests in the urine. The interpretation of hair testing is not simple or straightforward and requires considerable understanding and experience. Testing for HPU is also available.

"Another possibility is high body burdens of one or more toxic metals, such as mercury, that are capable of blocking enzymes in this part of the metabolism. Testing is available to look for these in urine, blood, feces and hair, and chelation may be needed if the levels of the toxic metals are high."

I hope this is helpful.

Best regards,

Rich

 

[Freddd]

Hi,

I just thought I would update where we got to.

Things improved well for my wife and by March she was able to do 40-50 minutes light exercise (stretching etc) a day and be reasonably active. Then at the end of March she did too much and has been struggling since then to recover.

Two of my daughters are also trying the simplified protocol but there does not seem to be any response for them.

Maybe we should try testing (expensive with 3 people and complicated) or play around with supplements (complicated).

Don

Hi Don,

The other half of the shoe is the adb12-l-carnitine fumarate. It often has as large an effect as the mb12 on healing and more on energy and muscle things. Also, the nausea, headaches etc was most likely low potassium and low folate. There is a post that helps you identify which it is in an "IF... THEN" type format.