Help for a beginner, please

[bobbygs]

My length of symptoms are relatively short - about 6 months total. Around Christmas time I started experiencing brain fog, fatigue and lack of appetite. I would be hungry, but have zero interest in eating food. I would occasionally experience shortness of breath, dizziness, coldness at my extremities.

I experimented with various things including supplementing magnesium both oral and trans dermal and trying to heavily alkalize my diet and monitor my body PH.

Then one day on a whim I bought a cheap b-complex at the grocery store. That night I took a b-complex and forced myself to eat some dinner. About 2 hours later I felt the best I'd felt in quite some time. I was able repeat this a few times and string together a few periods of feeling normal throughout the course of a week.

I then started reading about B12 deficiency and learned about methyl B12. I bought some 1000mcg mb12 and took a couple per day. Started feeling great! I continued with my cheapo b12 complex + the mb12 for a few days. Eventually it quit working and my symptoms resumed. At that time I dug in, did some more reading and ordered (what I thought were) higher quality supplements. I bought Jarrow 5000 mb12 and Jarrow B-Right complex. I took both on a Friday and again felt great for 2-3 days. After that initial 2-3 days it's been pretty terrible. My biggest symptom seems to be fatigue. Brain fog, no motivation, nausea at times, and poor appetite as well. I work in IT and I literally sit at my desk and fall asleep sitting up while typing. Sometimes I just space out with my eyes open staring at the computer screen for long periods of time. I haven't had any muscle pain, soreness, spasms etc

So I've dug in and done more reading which lead me to this site. I've read about the various protocols, potassium deficiency, etc. I've tried (what I feel to be) large amounts of potassium but I'm unsure if the fatigue I'm experiencing is caused by low potassium? I've been getting approx 3600mg of potassium daily via low sodium v8 + additional through my diet.

I'm just so tired and I'm unsure what to do from here. 6 months ago I was totally healthy and fine. I thought maybe I had a problem with B vitamin deficiency and the vit B supplements I took did provide brief periods of dramatic improvement. However I worry that I've put myself down some odd path that I can't recover from now. It's been about 8 days of feeling terrible. I have three little boys to care for at home and I just don't have the energy to do it. If anyone has any suggestions on what I should try next I'm all ears. At this point I feel like I just need to get myself reset to a stable place where I can regroup and then perhaps start one of the protocol methods the right way rather than stumbling through it unknowingly like I've done.

Here's everything I currently take:
2 x 125mg Magnesium maleate
3-4 TBSP Kava powder
1/2 Jarrow MB12 5000MG for approx 1hr in between lip and lower gum
1 Jarrow B-Right capsule. The newer kind with 5MTHF
1 5000IUI Vitamin D
1 50mg DHEA

Many thanks to all on this site who contribute and make it what it is!

 

[Timaca]

Have you been to a doctor? It might be a good idea to get checked for iron deficiency, thyroid issues, B12 deficiency, etc. Make sure you aren't taking any supplements for a few days before lab work.

Best wishes,

 

[caledonia]

I suggest seeing a doctor if you haven't done so already. To rule out whatever.

 

[bobbygs]

Thanks. I guess I should have mentioned that I went to the doctor twice. I explained all my symptoms and he ordered a bunch of tests. Chest x-ray, gallbladder ultrasound, liver and pancreatic enzyme levels. All came back 'fine' though I have not seen the results. Thyroid was checked as well. I hadn't though of iron. I did mention I thought maybe I was dealing with some type of vitamin deficiency but I don't think he went down that road based on the tests that were ordered. I can try following up with him again.

My experience with doctors is if it's something that can't be solved after talking for you for 2 minutes then they probably won't be much help.... Maybe I'm just jaded... Thanks for the input.

 

[ahmo]

I don't know the cause of your current fatigue. You might need more folate than in the B comp. I don't think low potassium would make you tired. There are links in my signature for Freddd's Protocol, also basic methylation. And am linking a couple B12 references.

Unfortunately it's often quite a slog to get on top of what's underlying our problems, and then to address it. Very hard for a mum w/ young family.

Diagnosing and Treating Vitamin B12 Deficiency‬ Vid


http://www.b12deficiency.info/

This site was created as a hub to bring all the key websites on vitamin B12 deficiency
together in one place.

Also, you might find something useful in this thread re Refeeding Syndrome.

 

[Mary]

@bobbygs - First, low potassium can make you very tired. I'm not saying this is your problem, but I've experienced low potassium and it left me feeling horrible, exhausted, etc. This was a couple of days after starting methylfolate. The methylfolate initially boosted my energy and then I hit a brick wall with severe fatigue, as Freddd describes in his posts about B12 and folate. The good news is that it was easily resolved by taking potassium. I titrated up to 1000 mg. a day of a potassium supplement (over a couple of days) and that horrible fatigue went away.

The daily RDA for potassium is around 4500 mg., so if your total intake for the day is 3600 mg., you can still be deficient. It was a little unclear from your post how you are getting your potassium. If it's just from low-sodium V8 (how much are you drinking?) and your diet, you might need more. I currently take 600 - 800 mg. potassium glycinate (in divided doses) plus a glass of low-sodium V8 plus any other potassium that is in my diet, and I do okay with this, but we're all different.

As ahmo said, you might need more folate than is in your B complex, not folic acid. Folic acid is synthetic and many of us cannot convert it to a form useable by the body. Methylfolate is generally the best way to go and you seem to be aware of this already.

I'm wondering about the Kava powder - 3 to 4 tablespoons seems like a lot to me, though I'm not very familiar with it. But conceivably it could be causing fatigue and brain fog etc. I'd look into this maybe try cutting the dose or just cutting it out altogether to see how you do. People take it for sleep.

And as everyone else here said, unfortunately there's probably not a simple answer. Read the links people provided, and if I were you, I would look into the potassium issue more closely because it was such a huge issue for me. If I hadn't resolved it, I would have had to stop the methylfolate (I'd already been taking B12 for many years). Again, if you're just having a glass of V8 and then your diet for potassium, you quite possibly could need more. But the important thing to know when dealing with potassium is to titrate up gradually - don't take a huge dose all at once. I think I started with 400 mg. divided during the day, then 600 or 700 the next day and by the 3rd or 4th day was up to a 1000 and that's when my low potassium symptoms started to abate.

 

[aaron_c]

@bobbygs

Have you tried carnitine (you will have to experiment to find the right form)? Freddd considers it essential to his high-dose methylfolate and methylcobalamin regimen. My methylfolate and methylcobalamin dosage is much closer to your's, but I still find it helpful for energy, sleep, and appetite.

My understanding is that the more recent the onset of symptoms, the more likely you will recover completely through aggressive treatment. If you want to go the methylation / glutathione route, I would suggest high doses of liposomal glutathione and IV or liposomal magnesium. The magnesium can really bring people back to life, but it doesn't last forever--unless the added antioxidant capacity is all the body needs to overcome whatever is causing ME/CFS. I don't know the details, but I seem to recall that the person who made the "Forgotten Plague" documentary was one of these people.

I second @Timaca 's recommendation to test iron. I also would be interested in seeing titers for all of the usual viral and bacterial suspects for ME/CFS...I am not all that educated about that end of things, but I am under the impression that testing earlier in the disease progression can be more enlightening than tests done once the immune system is more handicapped. Maybe someone who knows more can conform/correct that.

 

[caledonia]

The fatigue with the cold extremities is making me think thyroid and/or adrenals.

If your doc just tested TSH for thyroid, that is not sufficient. See the Stop the Thyroid Madness website. You need to get a complete thyroid panel (4 or 5 tests). TSH can look normal while other tests may show a problem.

Google "adrenal fatigue self test" for some easy at home tests, such as the flashlight/iris test. You can also do a cortisol saliva test to confirm if it's looking likely. This is different from the serum cortisol test from your doctor.

You can also try Dr. Rind's temperature graph. Take your temperature several times a day for a week and you can get a good idea if you have a thyroid and/or adrenal problem.

The kava is a relaxant and could make you feel tired. I don't understand why you're taking this - are you feeling anxious?

Why are you taking DHEA? This is a treatment for adrenal fatigue.

If you're potassium deficient from the methylation supplements, potassium from food may not be sufficient. Now brand potassium gluconate works well for me and some others on here. If you decide to try this, start very low as potassium can effect your heart. Potassium works in conjunction with magnesium.

 

[taniaaust1]

Thanks. I guess I should have mentioned that I went to the doctor twice. I explained all my symptoms and he ordered a bunch of tests. Chest x-ray, gallbladder ultrasound, liver and pancreatic enzyme levels. All came back 'fine' though I have not seen the results. Thyroid was checked as well. I hadn't though of iron. I did mention I thought maybe I was dealing with some type of vitamin deficiency but I don't think he went down that road based on the tests that were ordered. I can try following up with him again.

My experience with doctors is if it's something that can't be solved after talking for you for 2 minutes then they probably won't be much help.... Maybe I'm just jaded... Thanks for the input.

I highly advise you to get a copy of your tests to check for yourself that they were in fact fine. Often when things are slightly out of range, often doctors dont tell you (this has happened to me quite a few times now with the hospital and other doctors and every time it did mean something and was another piece to my puzzle), these can give clues of what directions to look into next with things.

eg 2-3 times my glucose test had showed me being out of range, way out with hypoglycemia but the doctor didnt tell me about this. Another test showed my blood clotting out of range but I wasnt told that either as they then put this down to drugs they didnt even check to see if I was on or not, drugs I'd never been put on (test abnormality was due to me having MTHFR mutation). Three other occassions my cortisol test showed out of range results but doctors didnt tell me. etc

I only found out all these things on getting copies of my test results. Get copies of all your test results
......

there is a gene mutation type which dont do well with methyl Bs so could have the reaction you had with it being okay at first but then not. (i cant remember enough to share more). Maybe you could trial hydroyl B injections or some other form of B.

 

[taniaaust1]

my other advice to you is to stop going to those doctors who are only willing to spend a few minutes with you and seek out a ME/CFS doctor to help guide you (not one into GET or CBT). You are in the early stages of the illness so you have the best chance now of improving if you head in the right directions with things. Dont wait for it to possibly get worst before finding yourself a better doctor for someone with your symptoms.

There can be long waits to get in with good doctors with us so seek one out now.

 

[Jonathan Edwards]

I think you need a diagnosis. Nobody here knows how to advise on these things, and we have a rule not to, even if the diagnosis of ME/CFS is made. The likelihood is that none of these things make any difference to ME/CFS I suspect. Please do nt use this site as an alternative to a doctor.

 

[aaron_c]

@bobbygs You and your doctor might find the article discussed in this thread helpful--it is a guide to diagnosing ME/CFS, including all the tests to run in order to rule out other, more easily treated illnesses.