Low back pain, nausea, stomach cramps, no appetite

My wife has been on Freddds protocol for about 1.5 years.

She has crashed 4-5 times mainly from not taking her vitamins. Her crashes and recoveries are really slow to develop. Last week she developed stomach flu symptoms. Normally, extra matafolin and potassium begin bringing her back after 36 hours and continue to improve for a week until 100%. I thought it was low potassium, so she has been taking 1200 mg of potassium from salt substitute and 1200mg from potassium gluconate with no improvement. She is also taking 6400 mg metafolin.

She is also 7 months pregnant (I would name the kid freddd if she would let me). She has had a mostly trouble free pregnancy until now. I can't seem to get this turned around. The nausea has mostly subsided, but severe lower back pain and low energy and malaise are still prevalent. Any suggestions?

Thanks.

Considering that she's pregnant, I'd go to the doctor.

She has talked to her doctor. "It's probably viral" was the diagnosis. We go back again tomorrow. I am going to request a potassium test. Anything else I should ask to have tested as far as methylation stuff goes?

I have done Freddd's protocol also after developing CFS. In my opinion taking large doses of these vitamins are not at all safe during pregnancy (or actually ever other than for a short time to build up a vitamin/mineral that is stored). I also experienced wonderful things and improvements following the AMP as well as crashes. I recently started Christine's vitamin suggestions instead after a very long phone conversation with her. I think Freddd's protocol works so well because we are short on B2 which is needed to use B12 and folate and all other b vitamins so his protocol gives us a way for our body to get those vitamins which relieves a lot of our symptoms. However, if the problem really is b2 and you are low on that to begin with, then you are making things worse by following Freddd's protocol. You should not experience crashes on a protocol after the first month or so or else it is masking a deficiency in something else.

B2 in very small RDA level doses needs to be taken in conjunction with manganese. I had very bad back pain that started when I was pregnant with my second child and completely disappeared when supplementing with manganese. Also, after several days on b2, I also had the same improvements that I did on the AMP but they have lasted rather than disappearing and then reappearing in a crash as they did on the AMP. This supports the reasoning that b2 is what is missing when we are deficient in b12 and folate.

Even if you don't want to follow Christine's vitamin suggestions, what you are describing is VERY BAD for a pregnant woman to start experiencing so late in her pregnancy. At least please cut out the high doses of vitamins and try 1 manganese supplement every day for a week to see if that helps with the back pain. You should know within a few days if a supplement is working for you and if not, then stop taking it.

In my non-medical opinion, high doses of a vitamin/mineral should only be taken on a temporary basis if your stores are low in that vitamin/mineral. It should not take long (maybe a few months at the very most) to raise those stores and then you should stop unless you know your diet is deficient in a particular mineral or vitamin. If you are not raising those stores with supplementation then you should look elsewhere for your solution (a very good example is with people who take increasingly higher levels of calcium for osteoporosis with small effect!).

American non-vegetarian diets are not low in b12 or folate so there should be a good reason why you are supplementing with them. The "good reason" so far has been that we have an enzyme with a genetic defect; which is a good reason indeed. However, other people in this forum have linked to studies showing B2's positive effect on people with MTHFR deficiencies with the reasoning being that perhaps B2 (or Christine thinks more likely manganese deficiency which affects enzyme functions) can correct these enzyme problems or even that deficiencies possibly caused these problems. The point being that we should start a deeper level of questioning to see if there is a way to naturally correct this rather than spending a lifetime on high doses of supplements to do the work that our body should easily be doing for us.

I was pretty scared of the high doses in the begining, until my wife crashed the first time during pregnancy. This happened when she was skipping quite a few doses and she came right out of it after resuming the protocol with high doses (6400mg) of metafolin for a week, then back to 1600mg.

I never considered the potassium to be large doses and she would only take 200mg. Even the 2400mg of potassium she is on right now might be 50% of daily allowance. As far as metafolin, I used the rationale that presciption Deplin was 10000mg and had no known side effects. Also, her normal (non crashed) dose is 1600mg.

I was under the assumption that we haven't quite balanced her out and she was walking a fine line, then when she misses a several days or other changes happen, she "crashes".

It normally starts with a period of depression that isn't noticeble until its too late, then the physical crash happens within a week. This current crash started with severe depression, then I upped her metafolin, she recovered from the depression in about 3 days. Then, the physical nausea, back pain, etc. hit her like a freight train. Now we seem to be stuck in a non depressed state with stomach, slight malaise, and back problems.

I know this is personal but we (my husband and I) are struggling with infertility. My hope was that this protocol would enable us to get preg. Are you in the same boat? Near the boat or 100 miles from shore?

I am pleased to see that you have continued to protocol during pregnancy without complications.

My wife has to use clomid for pregnancy. It was the only prescription drug she has taken since starting the protocol.

She was a clomid baby as well, but her mom doesn't have cfs and is very high energy.

We tried for 6 months natural and the clomid worked first try. I think the doctor half way diagnosed her with pcos, but she doesn't have any of the non fertility symptoms.

Congratulations, some women feel better with pregnancy and CFS, can she say that?

GG

hi Red04

As far as her lower back pain, is it more of a sharp pain? Like if she just twists her body in the slightest way she can really feel it? If so, I get this on occasion. One of the best things you can do is to make sure she keeps her hamstrings stretched out good. No doubt the added weight of her being pregnant adds more stress on her lower back. I'd suggest something else but her being pregnant, it wouldn't work. Something else she can try is for her to find something to stand on <like a toilet seat is good..more stable than a chair> and then stand on one leg....guess you'd have to stand there with her..afterall she is pregnant and you don't want her to lose her balance. Have her dangle one leg free to the side..just hanging free, then have her twist her ankle back and forth..side to side. Then do it with the other leg. This method has actually worked best for me. Apparently it works on relieving pressure on the nerve. The more she does it..the more relief she will get.

Good point - on the subject of back pain, I can recommend the Miracle Ball Method. It's basically a medium-soft ball, around the size of a grapefruit, which you lie on and let your muscles relax around. Seriously, I find it does a better job than massage. There are exercises you can do too, if you're bothered, but I generally just put it under different parts of my back and do deep breathing. There's a version for pregnancy. It's pretty much harmless, as far as I know, and worth looking into if you think there's any muscular component to her pain.

How's she doing today?

Thanks Red! With so many issues sometimes it's hard to tease out what is ME and what is not! Best of luck!

Hi Blossom,


American non-vegetarian diets are not low in b12 or folate so there should be a good reason why you are supplementing with them.

There are all sorts of reasons why a person may be low on b12 or folate despite an diet that has adequate amounts. With foltate, we have people who are deficienct all their lofe becasue they can't utilize folinic acid and have the what appears to be the most serious form of paradoxical foilate deficiency. They can't utilize folinic acid, folinic acdi in vegetable source food or tpyically folic acid. Eating too many folate containing veggies, taking a folinic and/ot folic acid supplement will cause a worsening of folate deficiency. Then there are those who can't utilized folic acid at all: 20% of population, can only utilize fiolic acid a little: 30% of population, and those who can utilize up to about 800mcg of folic acid: 50% of population. Many of these people will have paradoxical folate deficiency because unconverted folic acid accumulates and blocks methylfolate. When a person is in folate deficiency or insufficincy they dump more b12 into the urine faster than when they have satisfactory amounts of folate. This is readily observable in those who take large enough doses of b12 of any varieties that can show up in th urine. No matter the mechanism, most who are deficient in folate also exhibit b12 deficiencies, in body and CNS..

As people age their stomach puts out less acid. By 50% it is estimated that as many a 50% of population may be functionally deficient of b12 in body and CNS.

Then there is the group specifically represented here, CNS deficiency. People with CFS, FMS, Parkinson's, MS, Alzheimer's, Supra Nuclear Palsy, ALS and some others all exhibit the characteristic low CSF/CNS cobalamin level regardless of body level. This is often accompanied by elevated CSF- MMA and/or CSF - HCY indicating mb12-methylfolate and/or adb12-l-carnitine fumarate deficiencies. This appeaers to be a not yet defined genetic polymorphism(s). If the research showing this is correct everybody actually having CFS/FMS (ME hasn't been tested yet but I would include it as very likely) has these b12 deficiencies. The indicator for these CNS deficiencies is a strong to acutely hyper response to mb12 - SAM-e - TMG - methylfolate and/or adb12 - l-carnitjne fumarate. Sometimes hycbl, folic acid or folinic acid can be converted well whough to also cause these hyper-response patterns, rarely cyancbl. Body response is optional as the defining characteristics appear to flow very much from the CNS.

What other causes of b12 deficiency are needed? If the research is correct everybody with CFS/FMS is b12 deficient in their brains and spinal cords. Actual IF deficincy for various reasons is quite rare. These above causes are subtle enough that they will not be recognized at all in the body centric testing for b12 deficiency and comparison to a chroniclly deficient population for norming.


In my opinion taking large doses of these vitamins are not at all safe during pregnancy (or actually ever other than for a short time to build up a vitamin/mineral that is stored).

And there is a major problem. Methylfolate doesn't "store" but the inactive folinic and folic acids do store and in building up can block methylfolate for some people. Also the "storage" of b12 is one of the worst mythologies to haunty healthcare. For your "stores" of b12 to be released into the blood, the muscles and or liver have to start having cellular breakdown. When the muscles do that it can also cause high serum potassium, the opposite of build up cells.

Hi Red04,

At seven months lower back back ache is very common and may not have anything to do with anything but a large baby-bump out front causing back strain. My wife had that for all three.

Stomach flu symptoms are not usually sudden onset with folate or potassium deficiencies. I'm sure the baby is better off with enough active b12 and folate than having your wife in deficincy. One thing to watch out for in Pre-natal vitamin plans is the taking of a lot of iron at every dose. This can entirely block vit E which then can result in premature birth and elevated billirubin as the red blood cells break down too fast requiring the baby to be under the lights. The fix is to take the vit E 8-12 hours separated from the iron. My sister and I discussed this a lot while she was doing a neonatology fellowship. I was working on developing an intervention profile for an HMO to reduce neural tube defects and jaundiced babies. We were devolping a pre-natal vitamin program before it was automatic. In those days it of course used folic acid and cyanocbl, there were no other choices avaialbe.

The low energy and mailaise are concerning. Keep close watch on her blood pressure etc.

http://www.mayoclinic.com/health/preeclampsia/ds00583/dsection=symptoms
Preeclampsia can develop gradually but often starts abruptly, after 20 weeks of pregnancy. Preeclampsia may range from mild to severe. If your blood pressure was normal before your pregnancy, signs and symptoms of preeclampsia may include:

• High blood pressure (hypertension) — 140/90 millimeters of mercury (mm Hg) or greater — documented on two occasions, at least six hours but no more than seven days apart
• Excess protein in your urine (proteinuria)
• Severe headaches
• Changes in vision, including temporary loss of vision, blurred vision or light sensitivity
• Upper abdominal pain, usually under your ribs on the right side
• Nausea or vomiting
• Dizziness
• Decreased urine output
• Sudden weight gain, typically more than 2 pounds (0.9 kilogram) a week

She hasn't seen any real CFS/ME/Fibro changes since pregnancy. She backed off the vitamins early on and I quit pushing her to take them since there are a lot of women who experience CFS relief. We didn't systematically back off, she just took them less and less and skipped a bunch of days here and there. She crashed and ended up in the emergency room. The doctors ran a bunch of tests and came up with nothing. Her potassium was in range. No infections, no flu, etc...

Extra metafolin and potassium and the full protocol brought her out of it in a few days and full recovery in a week or so.

We are going to give some of these things a try. Thanks.

I was unsure when she got pregnant about the vitamins. But sitting in the ER listening to the doctors not know what was wrong changed my mind pretty quick.

She hasnt taken any pre natal vitamins. The doctor suggested adding iron. She was a little anemic. I need to look into that a little more before adding and I will take your advice on timing. Thanks!

My wife seems to be doing a lot better these last two days. Maybe she just had a little stomach bug or virus. I get a little trigger happy with the pregancy and CFS and scared I missed something. She is left with just back pain now.

If symptoms return I will ask the doc about Preeclampsia. Her blood pressure has always been perfect for 4 years of CFS on and off the protocol and before/during pregnancy. It was 100/60 Friday.

Thanks everyone for your replys.