I've gone from 30% to 60 - 80% functionality recently ..

[xchocoholic]

Hi All,

I hesitate to say this because it may change, been there done that, but I recently went from being 30% functional to 60 - 80 %. I still feel better if I lay down and rest several times during the day but I expect that after almost 21 years of CFS/ME.

The change came about when I started pregnenolone, DHEA, testosterone, MB12, ADB12, folate and taking liquid probiotics so I don't know if one or several factors are involved. My labs indicated that I was low on hormones, have dysiosis and based on my harsh reaction to cyno B12, Freddd's info indicated that I'd do better with MB12 and ADB12.

Also, I noticed that as long as I'm feeling healthy overall (eating too much xylitol nailed me recently) that I don't have any sudden muscle weakness now. I can fold clothes or play in the surf at the beach. I suspect that the ADB12 is responsible for this.

FWIW .. (For those who don't know this about me already).. I've only been learning how the body works since 2005. I was put on the elimination diet because nothing was staying in me and noticed within 24 hours that I no longer felt jittery. Since that time I've been determined to try to heal myself despite being told that it was impossible especially after all these years. When I started walking normally, after being on the diet for one year, the gloves came off ... lol ...

Since personally witnessing how diet and supplements can heal our bodies, I no longer believe solely in traditional medicine or "real science". I'm open to the possibility that our bodies can heal themselves if we provide it the nutrients it needs.

tc ... x

PS. Let me apologize in advance if I don't respond here. I'm having too much fun to sit at the computer nowadays. I'm also in the process of trying to understand how bacteria and digestive enzymes work. Learning all these medical terms and how our bodies work has been quite a journey for me. And everytime I think I understand it, I learn something new.

PPS. Medicare pays for these tests ... You just need a doctor to interpret them for you.

hth ...

 

[BEG]

Since that time I've been determined to try to heal myself despite being told that it was impossible especially after all these years. When I started walking normally, after being on the diet for one year, the gloves came off ... lol ...

Since personally witnessing how diet and supplements can heal our bodies, I no longer believe solely in traditional medicine or "real science". I'm open to the possibility that our bodies can heal themselves if we provide it the nutrients it needs.

YAY :victory: Good for you xchocoholic! You are an inspiration. Here's hoping you have fun, fun, fun before your Daddy takes the T-bird away. (That was so . . . goofy, I know) But you get my drift?

 

[Sallysblooms]

Since personally witnessing how diet and supplements can heal our bodies, I no longer believe solely in traditional medicine or "real science". I'm open to the possibility that our bodies can heal themselves if we provide it the nutrients it needs.

I say that all of the time. Our bodies do want to heal. If the doctors know the blood tests to order and know about supplements, it gives us a very good chance. I have two integrative doctors very knowledgable about supplements and blood tests needed. This time last year, I could not lift my head from my pillow. I struggled to the bathroom, bathing was a nightmare. This is after POTS hit me, POTS is horrible. I am now doing so much better! I have had CFS for 18 years so I may never be perfect, but I am so happy, like you, with my progress.

Congratulations on your progress and I hope it continues!!!!!!!!!

 

[Esther12]

Great news. I'm jealous though - playing in the surf sounds lovely. I don't have the energy or weather for such treats.

I hope things keep improving for you and you keep this virtuous cycle going.

 

[L'engle]

That's great news! What are ADB12 and MB12, anyone? Can you get them from a naturopath?

 

[Wayne]

That's great news! What are ADB12 and MB12, anyone? Can you get them from a naturopath?

Congratulations xchocoholic! -- and thanks for taking the time to post on your progress.

Like L'engle, I am also interested in more specifics on ADB12 and MB12. I can't seem to follow the B-12 threads, as a number of things are mentioned but often have no supporting information to help me sort it all out. I realize it should probably be a simple matter to do so, but my cognitive function doesn't even allow me to talk and eat at the same time (really).

So, I would be interested in knowing how you got the ADB12 and MB12. Did you purchase them retail, and if so, what brand names are you using? Also, is there a convenient place to order them?

Also, are there specific descriptive names for the tests you had done, and is there a specific place you would recommend having them done. Being on Medicare, I would be interested in knowing how to ensure that these tests were covered. Little things can often make a difference in whether something is covered or not.

Thanks again for posting on your progress. Sorry to put out so many questions for specifics. I hope you don't mind. :innocent1:

Best, Wayne

 

[Snow Leopard]

80% is being able to work full time and still have plenty of energy on weekends. Congratulations is in order if that is the case!

I think in many cases gut dysbiosis and resulting nutrient deficiencies plays a large role in this disease, regardless of the underlying cause of that dysbiosis.

 

[Tony]

Hi Wayne,

I took this from the large B12 thread: http://www.forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story
It's part of Fredds formula.

# Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
# Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
# Solgar Metafolin 800mcg
# Jarrow B-Right b-complex, 1 capsule twice a day

I'm pretty sure that iherb.com sell all these supplements. FWIW my own doc recommends 200mcg of Metafolin per day with the hydroxocobalin B12 I inject daily.

Nice one xchoco! Enjoy the beach...

 

[*GG*]

80% is being able to work full time and still have plenty of energy on weekends. Congratulations is in order if that is the case!

Why do you say this Andrew?

 

[Cloud]

That's fantastic xchocoholic! I can just see your smile. Hoping it continues for you. Please be careful, especially taking the Prednisone and Testosterone.

May I ask about the liquid Probiotics?

 

[aquariusgirl]

cloud.. think she's talking about kefir and maybe kombucha..but u can double check her previous posts to be sure.

 

[Wayne]

Hi Wayne,

I took this from the large B12 thread: http://www.forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story
It's part of Fredds formula.

# Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
# Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
# Solgar Metafolin 800mcg
# Jarrow B-Right b-complex, 1 capsule twice a day

I'm pretty sure that iherb.com sell all these supplements. FWIW my own doc recommends 200mcg of Metafolin per day with the hydroxocobalin B12 I inject daily.

Nice one xchoco! Enjoy the beach...

Thanks Tony for taking some time to lend a helping hand. Much appreciated! :Retro smile:

Wayne

 

[xchocoholic]

Thanks Brown eyed girl ... I'm working on the t bird ... lol ...

Thanks Sally ... Good to hear that you're on this path too. Two integrative docs sounds great. I only have one but she's a keeper. : ) It seems that a lot of us here are being diagnosed and treated for leaky gut. In my case, running the right tests is what was missing all along ...

Esther ... sorry to hear you're not feeling well. I didn't feel this good until I started taking these last supplements. It's been great ... Are you seeing an integrative doc ? I'm not medically trained at all but just from what I've witnessed over the last 5 years, functional medicine is the way to go. tc ...

L'engle ... Freddd has a thread on ADB12 and MB12. These are the active forms of B12 and some of us aren't getting these from our foods or supplements. Granted his threads are a bear to read ... ; ) ... but his info is easier to comprehend if you go to ... http://forums.wrongdiagnosis.com/showthread.php?t=62327

here's a link to my posts on his B12 thread ... I'm still taking what I started taking back then. 1 MB12, 1 ADB12 and 400 - 800 folate. Since I'm feeling this much better, I can't see increasing the dosage.

http://www.forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story/page160

hth ...

Wayne - the most important things I've done to help my brain fog were to remove foods that I was intolerant of, treat my chronic hypoglycemia via the Paleo / low carb diet and to treat for dysbiosis / candida. The ALCAT is expensive and Medicare doesn't pay for this so I never had it done but it looks for food intolerances. The CDSA will look for antibodies to gluten, casein, soy and egg and these are the most common. The CDSA looks for dysbiosis and parasites too. Medicare paid for this for me .. but I'm not a Medicare expert so you'll need to check with your doc or your state to see if they pay.

If you don't have an integrative doc all you do is google integrative doctor and your county or state to find one. Other holistic doctors use these tests I just like seeing an integrative doc since they understand drugs, procedures, etc too ...

You can always use the elimination diet to find most of your food and chemical intolerances too. It took me a few years to see what all foods were affecting me. And that has changed over the years too.

Medicare also paid for nutritional deficiency testing by Spectracell, saliva hormone testing for testosterone, cortisol and estrogen ... and they just paid for NutrEval testing ...

An integrative doc will run traditional tests as well as holistic to see how your body is functioning ... my pregnenolone and DHEA deficiencies were discovered this way. Quite honestly, my integrative doc is always surprising me with what she's learning about my body ... it's been great !!!

I just get my supplements from local Health food stores and my doc ... Vitacost has some good prices if they carry these. It's just too hot in Florida right now to order anything online.

hth ...

Andrew - I had to google Bell's functionality scale for this one ... http://www.cfids.org/community/pcpep/disability.pdf

I'm certainly not ready to go back to work yet. I've been housebound and / or couchbound for almost 21 years so I'm still fascinated with just getting out of my house most days now ... lol ... I said 60 - 80% because it seemed like a good description of what I'm experiencing. Some days I still need to rest which means I'm still getting some PEM (post exertional malaise) but other days I'm out working in the yard in the hot sun for 6 - 8 hours and feeling fine. And then there are days like this past Monday that I was on the go from 8 am till 11 pm without any rest periods. Most days I'm up and busy for at least 8 - 12 hours with rest periods of 1 hour every few hours. It's a HUGE change from where I was ... My biggest handicap is still brain function. My energy and stamina are holding up but my thinking isn't ...

I stopped having symptoms at rest in October 2007 so I'm not sure what Bell is saying. I remember telling my docs that I felt great so long as I didn' do anything but I felt like crap after being up for more than 15 minutes. Later I figured out that this was from my orthostatic intolerance (OI - BP dropping while upright) and chronic hypoglycemia. I took care of most of my hypoglycemia problems via the Paleo / low carb diet. My last GTT + insulin showed that my fasting glucose is normal now .. yeah ... but for some reason I produce too much insulin. I was so surprised to learn how my brain and vision was being affected by low glucose. I stopped having petite mals when I washed my car at least 6 months ago ... : )

I'm still dealing with OI, but to a lesser degree since I've learned to use salt water to keep my BP up and I'm back on Virastop. I've been taking Virastop 95% of the time for several years now and when I tried to stop it my OI got so bad I could hardly stand. When Catseye told me to look at "sticky blood" treatments for dysautonomia / OI, I suddenly remembered that I'd stopped this ... duh ... within a few days I was back to my old OI where I need to lay down every few hours for an hour if I want to think clearly. I'm still hoping to figure out what's causing me to need to lay down somedays and not others.

hth ...

Thanks Tony ... The beach has been great !!

Hi Cloud - I'm not using prednisone, I'm taking pregnenolone which my labs showed was incredibly low for my age. I think the results on in my journey section here ...

For probiotics, I've discovered that I do better with liquid or food sources of probiotics so I have several sources now ... Since I'm gluten and casein free, I'm taking So Delicous coconut probiotic drink, pouring some into a clean, lightly covered jar and letting it sit out overnight. I'm making my own Kombucha. And I'm making an approximately 1 quart probiotic drink using 3 Country Life dairy free power dophilus + 1 Megaflora + 1 cup Lakewood cranberry juice + 2 cups water + 3/4 sugar and allowing it to ferment in my garage where it's hot for 12 - 24 hours. I'm also making cultured veggies .. And using Body Ecology Kefir grains + young coconuts.

Whew .. that too me an hour ... tc ... hope this helps ... X

 

[xchocoholic]

I'm such a dummy ... I keep forgetting that everytime I have to increase my sleep supplements, I feel tired the next day. I'm experimenting with Twinlab Pancreatin right now and the first few days I took this it made me too hyper to sleep so I had to take 3 mg Melatonin, 100 - 200 mg Theanine and 100 - 200 mg 5HTP. I was so wound up that I couldn't sleep without taking all 3 .. WELL, Pancreatin is no longer making me hyper so I need to back off these. DUH !!! Sleep supplements are something that you only need when you need them and not if you don't ...

So, I'm off the Melatonin, down to 50 mg of Theanine and 100 mg of 5HTP and still sleeping great. When I can get off the Theanine and down to 50 mg of 5HTP I'll feel perkier ... I can't tell you how many times I've done this ... lol ...

I just wanted to post this here in case you all are feeling sluggish during the day and don't know why .. with CFS head it's hard to remember all this ... tc .. have a great day everyone ... X

ps .. Here's a link to everything I've learned about probiotics. I'm GFCanary over there. If you're interested, my journey details all the stuff (technical term ) I've learned and all the BS I've gone through since 2007 too. Now I'm off to clean, run errands and possibly finish installing a raised flower bed.

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=4784&highlight=

 

[xchocoholic]

Ok, so I've been busy cleaning kale to make dehydrated kale but this was bugging me ... I knew that I'd read somewhere that Myhill used the term "healthy at rest" ... here it is ... I've been at this stage since 10/2007 but couldn't figure out why I couldn't conquer my energy / stamina problems until lately. KOW .. I sure hope this is it ...

http://www.prohealth.com/library/showarticle.cfm?libid=14450

Myhill ... "Get the regime tight until you get to a stage when you feel absolutely fine doing absolutely nothing!"

In this article she tells us to go on the stoneage diet, get some rest, etc ... She's been a great resource for all of us ...

I'm emphasizing this point because in my experience our CFS traditional doctors aren't aware of how the body heals as they haven't witnessed this in their patients. GRANTED, they aren't exactly steering their patients in how to do this either.

I'm not knocking traditional doctors as much as I'm knocking what they don't know. I understand though and I still really like my "clueless" traditional doctors. You see, I used to be a computer systems analyst in a very large company and I KNOW how hard it is to keep up on the latest. One of my customers asked me about scanners back in 1989 and I had no idea how that new fangled box worked ... lol ... so they just need to familiarize themselves with the latest in medicine. AKA Learn about leaky gut ... you know if I can learn all that I've learned in the last 5 years with OI and CFS, they can certainly learn it too ... tc ... back to cooking ... x

 

[xchocoholic]

Hi all,

I wanted to update you on this ...

I started having energy rushes and crashes from the supplements I started taking back in July ... pregnenolone, DHEA, testosterone, MB12, ADB12, B6, etc so after some experimenting I decided it was the DHEA and stopped it. So far so good ...

I noticed too that I was having more brain symptoms than previously so I've backed off this a bit. I have a life long history of petite mals and/or staring episodes and didn't notice how often I was doing this. I also have a history of my brain shutting down completely if I overdo it but I never saw a neurologist to see why this is happening. We think these are TIAs though ...

I started an excercise program, on 10/12, that I'm doing while laying down in the hopes that my blood will circulate better and help me detox and heal. so far so good ... kow ...

tc ... x

Ps. In case I missed anything here, I just updated my journey thread too ... tc ... x

 

[Esther12]

Hope things keep going well with you. Thanks for letting us know how you're doing.

 

[xchocoholic]

Hope things keep going well with you. Thanks for letting us know how you're doing.

I'm happy too ... People sharing their stories on these message boards has literally saved my life ... tc ... x

 

[Cloud]

Thanks for the update Choco....Just wanted to add that for me (and you prolly know this already), when I take anything that assists my system to function better, I get a surge of feeling good...then crash. So, it's not always what I was taking that's the problem.....it's that my system can't handle that level of function. I have to work very hard at pacing during those surges. Just because I feel so much better, doesn't mean that I am. A good example for me is Hydroxycobalamin. It works really well for me. I have a script for 1mg. IM per day and have to be really careful because many times I will get those surges due to the B12 opening the gate.

 

[Andrew]

MB12, ADB12

Hi xchocoholic,

I just noticed this thread. I'm glad you are doing much better.

I did a search on MB12 and found an association with helping autism sufferers. This is interesting considering that CFS and Autism are both neuroimmune diseases.

http://www.childrenscornerschool.com/mb12nasalspray.htm
http://www.drneubrander.com/pageVid.html
http://autism-nutrition.com/folic-acid-vitamin-mb12
http://www.youtube.com/results?search_query=MB12+autism&aq=f

I'm feeling too foggy right now to read these, so I don't know how good these links are.

I can't find anything on ADB12 though. Do you have a llink for that?

BTW, I stopped testosterone a long time ago. I stopped DHEA a few months ago. I stopped pregnenalone a few weeks ago. I have not noticed any difference from stopping these. OTOH, differences can creep up slowly, so who knows. Maybe I'd be even better if I stuck with it.