New to this & starting active B supps

[lolasana]

Hi all,

I've never been diagnosed with CFS but I have been suffering from fatigue for several years that will not respond to various therapies. I came across this board after my holistic MD recommended I start taking active B vitamins because she feels that my body is not detoxifying itself correctly. She also ordered a NutrEval test, but I am still waiting on the results.

Here are the symptoms that I've had for the last 2-3 years:

• Fatigue (it's not debilitating as I can still work and do yoga, but I feel tired throughout the day and can no longer tolerate strenuous exercise, though I was quite athletic 3 years ago)
• Low RBC: my count is usually around 3.8 (normal is 4.0-5.1) and my MCV is usually between 95-98. This does not respond to iron therapy, part of the reason my MD suggested the active Bs
• High estrogen levels that cause ovarian cysts, PMS, and other symptoms. This has been confirmed several times by blood and urine tests.
• Water retention: can be fixed with rx diuretics, but the diuretics make my blood pressure too low and I get heart palpitations and feel like I'm going to pass out if I take them, so I just deal with the edema (which is on the order of 10-15 pounds)
• High heart rate that spikes quickly with exertion
• Low thyroid function (confirmed by TSH, Free T4, and Free T3 tests) but no auto-immune thyroid disease (no antibodies, all types tested several different times)
• Poor sleep: I only sleep deeply with the help of 2mg of melatonin each night
• Vascular issues? I have developed little red spots, like petechiae or angiomas all over my body
• Odd chemical or nutrient intolerances: can't drink any caffeine without feeling terrible, can't take anything with more than about 100mcg of iodine or my salivary glands swell up

My diet is quite good; I eat Paleo but with fermented dairy. I have to eat a lower fat, higher protein, higher carb (fruits and starchy veg) Paleo in order to feel good. My digestion since eating this way has been great.

I'm hoping the active B vitamins will help me. Two weeks ago, I started taking the 5mg Jarrow B12; this actually increased my fatigue and made me very sleepy in the afternoon. One week ago I added the 10mg Source Naturals dibencozide. Almost immediately, my mental energy increased significantly. My memory improved, word recall improved, my mood improved, it's great! But so far, no physical effects, just mental. Yesterday I started taking the Pure Encapsulations 950 multi (w/o iodine) which contains 800mcg Metafolin and 25mg P-5-P. So we'll see what that does.

I take a slew of other supplements, but I don't think they should negatively impact the active B regimin. But just in case, here is the long list:
Fish Oil (1/2 tbsp; Carlson)
DIM (200 mg; Nature's Way)
Magnesium (500mg; Life Extension)
Chromium Picolinate (500mcg; Solgar)
Vitamin D-3 (5000 IU; NOW)
Calcium D-Glucarate (2000 mg; Source Naturals)
Sunflower Lecithin (400mg; NOW)
Vitamin C (2 g; Nature's Way)
Probiotics (Align and Pearls)
Vitamin A (10,000 IU; Source Naturals)
Melatonin (2 mg; Source Naturals)
Grape Seed Extract (200mg; Solgar)

I'll post back here with my NutrEval results when they come in. I just wanted to introduce myself and see if anyone had any special insights for me.

Thanks!

 

[ukxmrv]

I've not found a general B vitamin that I can tolerate and makes me feel any better. Most of them make me feel toxic and poisoned. I've not had any benefits to my health by just taking a load of different supplements. Most of the things you mention are ones I have taken before with no obvious changes (apart from a few).

We are all different here and there is no "one size fits all". That makes it very hard for new people to know where to start and for any of us to give meaningful advice.

Have a look at the threads on B12 and all the discussions on specific protocols around B12/folate etc. Lots of people with experience that those areas. Good luck!

(p.s. I'm largely housebound and my illness started with a virus nearly 30 years ago, very well before then)

 

[lolasana]

Thanks for your reply! I have actually honed down my supps to those that seem to benefit me in a tangible way. I have a box of other supps that I never noticed a difference with.

With my high estrogen, the DIM definitely changed the ratio of good to bad estrogen very noticeably in my urine tests. Unfortunately, it's as if the estrogen (both good and bad) was just stuck in my body unable to be excreted. My "good" estrogen levels on DIM became so high that they lab couldn't read them correctly. When I started taking the Calcium D-Glucarate 2 months ago, I think the estrogen finally started coming out a bit. For the first time in years, my PMS was not very bad, I had no spotting before my period, and my cramps were minimal. Yay!

The probiotics also changed my life. I started eating paleo about 6 years ago and it helped my gut about 75%. I didn't start the probiotics until about 2 years ago, but when I did, they helped another 20%. I consider my gut to be about 95%.

Another noticeable one for me was the Chromium. I used to get blood sugar crashes even though I don't eat sugar or refined starches. The Chromium made those go away entirely.

The melatonin helped me reach deep sleep and I actually have dream recall again.

But the other supps I don't know about. I honestly don't notice any difference when I stop taking the D3, magnesium, fish oil, A, or C. I frequently fall off the wagon on those.

That's my experience with some of the above supplements, in case anyone is interested in trying any of them and needs a reference.

I guess we'll see what adding the active Bs does. I do enjoy the good mental energy; it actually makes the physical fatigue much more bearable.

I'm sorry to hear that you're housebound. My aunt has CFS and she is about 70% housebound (she became sick after being exposed to pesticides in another country). When I start feeling sorry for myself about not having energy to go out with friends to dinner after work or something similar, I think about my aunt and realize that I should count my blessings.

 

[taniaaust1]

Hi there Welcome to the site.

I think what you are trying is well worth a try as it has helped many with fatiguing illnesses not just ME/CFS. From your post and symptoms thou, I want to comment on a few things as quite possibly doctors have missed something.

High estrogen levels that cause ovarian cysts, PMS, and other symptoms. This has been confirmed several times by blood and urine tests.

Im curious if you have polycystic ovulation syndrome (PCOS). I myself have PCOS and those symptoms (cysts, high estrogen and also those with it often also get PMS and can get bad period cramps) point towards it. Ive found most doctors arent good at diagnosing PCOS and often one will have to see a specialist to get it diagnosed (suspect PCOS with your symptoms if your periods are of a long cycle then most peoples or even miss at times).

Thou I have PCOS in my own case I nowdays have low testosterone not high as most with PCOS have (one doesnt have to have the high testosterone for a diagnoses of it). PCOS can be diagnosed with hormone issues (in my own case I have hormonal imbalances of the female hormones), abnormal menstrational cycle and cysts which happen as the excess estrogen matures the egg follicles but they fail to release so over time one gets many of these sitting in the ovary.

As fas as PCOS goes if you have it.. most doctors arent up on the info/stats for the coexisting illnesses which go with it. My gyno has told me that 90% of his PCOS patients have also hyperinsulinemia or insulin resistance so insulin issues should be strongly suspected in anyone who has PCOS and should be tested for. My first insulin test came back negative for issues but my second one (he still thought i had problems even after a normal test due to my symptoms so had me do the blood teests again) did come back showing my insulin level was abnormally high. Special diet due to knowing i have this issue has helped some of my symptoms.

If someone is getting their insulin going too high, this can cause a BIG RANGE of symptoms (thou the medical profession dont really seem to be up much on this). My gyno when the second test came up showing it was abnormal then sent me to another specialist, one who specialises in insulin issues.. he calls insulin issues.. Panadoras Box as it can just cause so many different issues. He's a specialist who has cured many who had been previously diagnosed with actual CFS.. but in reality all their symptoms were being caused by hyperinsulinemia.

I used to get blood sugar crashes even though I don't eat sugar or refined starches.

Hyperinsulinemia "can be" the cause of bouts of hypogycemia. In my own case it dont have to be refined starches or sugar I've eaten to cause my insulin to go high which then can impact ones blood sugar. eg a healthy salad of chickpeas can be giving me major symptoms in about 15-20mins due to how fast my insulin responds and how it reacts. (chickpeas have a lot of carbs so do many other things eg bananas, corn etc).

I dont know thou how Chromium would help this issue if you do have it or even whether it can help this kind of issue (help insulin issues) or not.

Anyway.. here's a page from my insulin specialists site http://www.agale.com.au/IR.htm which i strongly suggest you check out the links for insulin info there if you think you may have Polycystic ovulation syndrome as then you are extremely likely to also have some issues with insulin.

 

[lolasana]

Thank you for the detailed reply. I've wondered before if I had PCOS. Though the cysts on my ovaries only appear one at a time and have been diagnosed as endometriomas, suggesting that I have endometriosis (though I know you can have both PCOS and endometriosis). My cycle is very regular at 27-30 days, usually 28. I'm pretty sure I ovulate because I frequently experience slight mid-cycle cramping, though I've never temperature charted.

My testosterone tests normal, my progesterone used to be low, but increased when I took Vitex regularly, and my estrogen is always high (both estradiol and estrone).

I thought about pushing for additional PCOS or insulin testing, but I decided that I didn't like the idea of taking Metformin, which seems to be the standard treatment.

What treatments do you use for your PCOS and insulin issues? Dietary changes alone or also supplements or medications?

Chromium is supposed to help with insulin sensitivity and to keep blood sugar levels balanced. It did seem to help me, I haven't had the low blood sugar feelings since I've been taking it (unless I eat sugar or drink juice, but those are rare events).

 

[taniaaust1]

Thank you for the detailed reply. I've wondered before if I had PCOS. Though the cysts on my ovaries only appear one at a time and have been diagnosed as endometriomas, suggesting that I have endometriosis (though I know you can have both PCOS and endometriosis). My cycle is very regular at 27-30 days, usually 28. I'm pretty sure I ovulate because I frequently experience slight mid-cycle cramping, though I've never temperature charted.

My testosterone tests normal, my progesterone used to be low, but increased when I took Vitex regularly, and my estrogen is always high (both estradiol and estrone).

I thought about pushing for additional PCOS or insulin testing, but I decided that I didn't like the idea of taking Metformin, which seems to be the standard treatment.

What treatments do you use for your PCOS and insulin issues? Dietary changes alone or also supplements or medications?

Chromium is supposed to help with insulin sensitivity and to keep blood sugar levels balanced. It did seem to help me, I haven't had the low blood sugar feelings since I've been taking it (unless I eat sugar or drink juice, but those are rare events).

You can rule out PCOS if you only have one cyst on ovary.. with PCOS one always has lots inside of ovary which are all matured or almost matured eggs and that is a necessary part of diagnoses so you cant have PCOS. Your menstration cycle too is too normal for PCOS. (yes endometriosis is more common in PCOS people).

With this new info.. that makes an insulin issue far far less likely in your case and probably not part of your issues (thou it is still possible) but I'd probably suggest now to look in other areas thou seeing Chromium helps with insulin sensitivity.. seeing that helped it could be showing you could have an insulin issue with insulin resistance and hence high insulin levels.

your Metformin question. i think they just put PCOS people on Meformin to try to stop them from developing diabetes due to the insulin resistance (I personally see it as more of a preventative thing). In my own case none of my doctors have suggested it and instead just told me I will end up diabetic and have put me onto very strict diet to try to hold the diabetes off and try to help my symptoms being caused by the insulin.

anyway.. seeing you dont have PCOS.. you probably dont have to worry that much about having an insulin issue. There is now nothing in your post screaming at me to make sure you havent got this issue.

best wishes with that B trial

 

[Rosebud Dairy]

Welcome and just a quick response.

I am on the Full Active Protocol, with additional timing of Methylfolate doses (BEFORE MEALS) to avoid IBS caused by folic acid. Apparently, folic acid can have a side effect of diarrhea, so I block it with methylfolate before each meal. As long as I remember to take the M-folate, I do just fine. I do have a single confirmed C677T mutation, which is probably related.

My only remaining prescription is progesterone. This is a small miracle.

My neuropathies and fatigue are virtually gone. My twitching is gone. I feel pretty close to normal. I no longer have high Rt3. Sleep and vascular issues are resolving.

I just can't forget my potassium. This is especially important for women still cycling, especially if part of that cycle is heavy.

 

[lolasana]

Hi Rosebud,

Thanks for the info. I'm glad to hear that you're feeling so much better; that is very hopeful. How long have you been on the protocol?

How much potassium do you take? I've never taken potassium before. I thought about taking it when I was on the diuretic (not potassium-sparing) because I felt so horrible on it but I just stopped taking it instead...though it is nice to be able to lose 15 pounds of water weight in a week : )

When I've tracked my diet before, it has been too low in potassium. I've been trying to drink more veggie juice recently. I read that vegetable juice (with tomatoes, at least) has over 600mg of potassium in 8 oz.

 

[Freddd]

Hi Rosebud,

Thanks for the info. I'm glad to hear that you're feeling so much better; that is very hopeful. How long have you been on the protocol?

How much potassium do you take? I've never taken potassium before. I thought about taking it when I was on the diuretic (not potassium-sparing) because I felt so horrible on it but I just stopped taking it instead...though it is nice to be able to lose 15 pounds of water weight in a week : )

When I've tracked my diet before, it has been too low in potassium. I've been trying to drink more veggie juice recently. I read that vegetable juice (with tomatoes, at least) has over 600mg of potassium in 8 oz.

Hi Lolasana,

I've been trying to drink more veggie juice recently. I read that vegetable juice (with tomatoes, at least) has over 600mg of potassium in 8 oz.

So you drink an exta quart a day?

Unfortunately the juice also contains follinic acid and if you have folinic acid paradoxical folate defieincy it casues a lot of problem and won't give you eneough potassium quick enough to stay out of trouble. You do understand that low potassium can cause incapcitaing spasms and paralysis, breathing paralysis and fatal heart arrythimias?

People need anywhere from a few hundred mg extra daily to several thousand extra, and a diuretic can be a factor as it is for me.

 

[lolasana]

Hi Fredd,

Thank you for the warning. I read your other thread on this as well.

I guess the idea of taking supplemental potassium scared me a little. But you are correct, low potassium can be very dangerous. I believe this is what happened to me when I took the diuretic, it was very frightening. I only took the diuretic for about 2 months, once my symptoms started (feeling light-headed or dizzy, almost passing out, muscle twitches) I went downhill fast; that was over a year ago. I suppose this does mean that I might be prone to developing low potassium. On blood tests, my potassium tends to come in around 4.2.

Thanks for bringing up the point about the folic acid in the veggie juice. I don't know if I have paradoxical folate deficiency issues, but it's good to be cautious. I've changed my game plan to include extra coconut water (which also has 600 mg potassium per serving, but only a tiny bit of folic acid) and actual potassium supp

I have felt really good taking the active b12s and metafolin so far. My mental energy and mood have improved tremendously. But today I started feeling a little light-headed, especially after taking a walk at lunch. I'm going to invest in some potassium supplements and maybe reduce the dose of the b12s and metafolin for a little while.

Thanks for your help!

 

[Sallysblooms]

But the other supps I don't know about. I honestly don't notice any difference when I stop taking the D3, magnesium, fish oil, A, or C. I frequently fall off the wagon on those.

You don't always notice many supplements like fish oil, C and D3. You notice if you are low for sure. A very good Fish oil is needed for the brain and many reasons and C is good for so many things too. I do not take A, too easy to over do on that. It is in my good multi. I take a lot of mag. powder am and pm. VERY good for heart and muscles. I have doctors that tell me the brands and doses on my large supplement list. Did you get your D3 tested?

 

[lolasana]

Hi Sallysblooms,

I'm pretty good about taking the fish oil only because my partner has inflammation issues, so I put a tablespoon in our breakfast smoothie every morning. I should check my multi to see how much Vitamin A is in there. I started taking A a few months ago after I read an article about women with endometriosis being low in retinoic acid. I'm not sure if it really helps, but I figured it couldn't hurt too much (although I know A is fat soluble so you can over do it, as you said).

My D3 came back at 43 last time it was tested (which was over a year ago). That was actually before I started supplementing, it might be even higher now.

I am expecting the results back from the NutrEval soon. That should include a fatty acid profile, so I'll see what my Omega 3 looks like. I'll post the results here when I get them to see if anyone has any insight. I'm also hoping that my doctor will have some good comments on it : )

 

[adreno]

When I've tracked my diet before, it has been too low in potassium. I've been trying to drink more veggie juice recently. I read that vegetable juice (with tomatoes, at least) has over 600mg of potassium in 8 oz.

Also be aware that commercial veggie juice usually contains high amounts of sodium (salt) also, which can block absorption of potassium.

 

[lolasana]

Thanks Adreno. I was wondering about the whole sodium potassium balance thing. I usually drink homemade veggie juice or low sodium if store-bought. But I think I will switch from the veggie juice to coconut water, which also has anywhere from 600-700mg of potassium per serving.

 

[lolasana]

Hmm, I think that low potassium is going to be a real issue for me. I reduced my supplements to 1000mcg Jarrow mb12 and 1/2 Source Naturals ad12 (the Metafolin stayed at 800mcg since that's in my multi-vitamin) both yesterday and today. I was having some light-headedness yesterday and a sweet potato and coconut water cleared that up. Today is worse though. I'm having light-headedness, my heart rate is slightly elevated, I feel kind of weak, and I'm having occasional muscle twitches. I drank two coconut waters (so 2000mg of potassium) which seemed reasonable to me (I used to do that frequently after a bike ride back when I could do long distance rides). Unfortunately, this has only helped moderately.

The feeling is very reminiscent of when I took the diuretic (7mg hydrochlorothiazide, which is a very low dose). I constantly felt like I was going to pass out and I would start panicking. My then-doctor decided I was having panic attacks and prescribed xanax. Thank god I didn't take it; it probably would have killed me! I stopped the HCTZ and then went back to normal (unfortunately, all my water weight came rushing back). Anyway, I am beginning to have similar feelings...

Another possible side effect (or could be a complete coincidence) since beginning the active b's is a cold sore outbreak and some swollen glands. I could just be fighting off a cold, I guess. Has anyone else experienced this? Is it reasonable to assume that I could already be experiencing b12 induced low potassium and other side effects even though I have only been taking the active b's for a little over a week?

 

[lolasana]

I just wanted to give an update: I felt much better by the afternoon, after 3 bottles of coconut water, lunch, snacks, etc. Do those of you with potassium issues wait and take your b12s after you've taken in adequate potassium for the day? Maybe I'm making a mistake by taking them at breakfast.

 

[Freddd]

I just wanted to give an update: I felt much better by the afternoon, after 3 bottles of coconut water, lunch, snacks, etc. Do those of you with potassium issues wait and take your b12s after you've taken in adequate potassium for the day? Maybe I'm making a mistake by taking them at breakfast.

Hi Lolasana,

I take potassium at least 4 different times per day as it has a short half life as well. Taking it all in the moring won't prevent problems in the evening. So take the mb12 and adb12 whenever convienient for you. The healing is going to be ongoing 24/7 as lomng as nothing stops it. Tring to time b12 and potassium are fruitless efforts and can only go wrong as they don't work that way.

 

[Freddd]

Hmm, I think that low potassium is going to be a real issue for me. I reduced my supplements to 1000mcg Jarrow mb12 and 1/2 Source Naturals ad12 (the Metafolin stayed at 800mcg since that's in my multi-vitamin) both yesterday and today. I was having some light-headedness yesterday and a sweet potato and coconut water cleared that up. Today is worse though. I'm having light-headedness, my heart rate is slightly elevated, I feel kind of weak, and I'm having occasional muscle twitches. I drank two coconut waters (so 2000mg of potassium) which seemed reasonable to me (I used to do that frequently after a bike ride back when I could do long distance rides). Unfortunately, this has only helped moderately.

The feeling is very reminiscent of when I took the diuretic (7mg hydrochlorothiazide, which is a very low dose). I constantly felt like I was going to pass out and I would start panicking. My then-doctor decided I was having panic attacks and prescribed xanax. Thank god I didn't take it; it probably would have killed me! I stopped the HCTZ and then went back to normal (unfortunately, all my water weight came rushing back). Anyway, I am beginning to have similar feelings...

Another possible side effect (or could be a complete coincidence) since beginning the active b's is a cold sore outbreak and some swollen glands. I could just be fighting off a cold, I guess. Has anyone else experienced this? Is it reasonable to assume that I could already be experiencing b12 induced low potassium and other side effects even though I have only been taking the active b's for a little over a week?

Hi Lolasana,

Is it reasonable to assume that I could already be experiencing b12 induced low potassium and other side effects even though I have only been taking the active b's for a little over a week

Low potassium typically starts up in the first week, often as soon as 3 days after starting. What you need to do is start getting 600mg of potassium in your morning supplements and another 600mg in your dinner supplements and then take additional as needed. If you need extra doses every day increase your base amounts. In additon to my now 700mg with each of 2 meals I also take 300mg at bedtime to prevent nighttime problems. I will make other adjustments from there.

I had a whole lot of stuff break out in the early part of my active b12 protocol

The feeling is very reminiscent of when I took the diuretic (7mg hydrochlorothiazide, which is a very low dose). I constantly felt like I was going to pass out and I would start panicking.


Yes, that would be similar. It is not a potassium sparing diuretic so it pputs out a lot of potassium in your urine. Your doc should have been aware of that. Make sure you get plenty of potassium.



I drank two coconut waters (so 2000mg of potassium) which seemed reasonable to me (I used to do that frequently after a bike ride back when I could do long distance rides). Unfortunately, this has only helped moderately.

You need to get some supplements you can take on a regular basis of a fast absorbing potassium that you can take every day while the healing is going on, and that can be years depending upon how fast you heal.

 

[lolasana]

Thanks Freddd. It is helpful to know that there is no use/sense in trying to time the potassium with the b's.

I'm a horrible scientist. I just realized that I also stopped taking my chromium picolinate a few days ago, which is definitely a confounding variable. After the earlier discussion on this thread, I found myself wondering if it really did help my blood sugar or if I had mis-perceived that. So, if I was coupling low potassium with some hypoglycemia, I can understand why I started feeling so bad so fast even though I had increased my potassium by an extra 2000mg or more each day. I added the chromium back in today and we'll see if that improves things too.

One more question: is the low potassium dose dependent on the b's? I'm currently taking the 5000mcg mb12, 10mg adb12, and 800mg metafolin. If I increase the dosage, does this automatically increase my potassium requirements or not necessarily?

Thanks again.

 

[Freddd]

Thanks Freddd. It is helpful to know that there is no use/sense in trying to time the potassium with the b's.

I'm a horrible scientist. I just realized that I also stopped taking my chromium picolinate a few days ago, which is definitely a confounding variable. After the earlier discussion on this thread, I found myself wondering if it really did help my blood sugar or if I had mis-perceived that. So, if I was coupling low potassium with some hypoglycemia, I can understand why I started feeling so bad so fast even though I had increased my potassium by an extra 2000mg or more each day. I added the chromium back in today and we'll see if that improves things too.

One more question: is the low potassium dose dependent on the b's? I'm currently taking the 5000mcg mb12, 10mg adb12, and 800mg metafolin. If I increase the dosage, does this automatically increase my potassium requirements or not necessarily?

Thanks again.

Hi Lolasana,

One more question: is the low potassium dose dependent on the b's? I'm currently taking the 5000mcg mb12, 10mg adb12, and 800mg metafolin. If I increase the dosage, does this automatically increase my potassium requirements or not necessarily?

I can't really say. The relationships are not linear. There are too many confounding variables.