week 6 not sure of what is happening- any thoughts?

[suzanne]

I am at week 6 of Fredds protocol ( I have previously tried the yasko protocol based on SNPs and the hydroxy B12 did nothing for me). I am concerned that at week 4 my migraines started back up- after what had been a 3 week respite...I wonder what has happened?


I started on 500mg m12 and 400mg solgar m folate. The migraines stopped after 10 day on the protocol when i was taking 750 mg m b12. i have slowly titrated to 1000mcg mb12 ( jarrows), taken in a split dose, across the day. i take 1200mg of m folate.

I also have the co factors in place.

At first i suffered from really bad tooth pain, headaches, nausea and a worsening of an itchy skin. These symptoms still persist except for the tooth pain which has stopped.

I am puzzled about why the migrines have returned? In desperation I have increased the b12 to 1000mg a day. i am now more itchy again but am hoping that this may reduce the migraines again.

Any thoughts on what might be happening- or do i just need to keep playing with increasing my m b12 until i get relief?
I realise that week 6 is probably too soon to expect miracles, but it is distressing to get the migraines back on a daily basis

many thanks, to any input

Suzanne

 

[suzanne]

Oops, I also meant to report that I have had a really bad cold for the past 10 days and I never get colds! This, too, is puzzling me. Perhaps those with more experience may be able to interpret this. perhaps my immune system is not as over ramped as it normally is. Did anyone else start getting colds/ sore throats when they commenced the protocol?

I am trying to stay hopeful that things will feel better again soon if i can just hang in there. I have alos noticed that i m getting a worsening of hypothyroid symptoms- achey hip and lower back and wrists- and also really dry skin and tired in the mornings. i am hoping this will get better if I just stay with the protocol. I do know that my migraines get worse when my thyroid is low. But I cannot work out why i had improvement for 3 weeks and now feel so terrible.

I have increased the methyl folate like fredd suggested ( only to 1200 a day) but it does not seem that the return of my migraines has been directly linked to any changes in my dosages of folate or b12. the only thing I did differently the past few weeks was to introduce a very low dose of Canddex to try and stat treating my known over burden of candida glabrata- which is hard to treat. i did have some inital worsening of symptoms when i added the candex, like itchy skin and headaches but seem to have accomodated the 1/4 tablet and was thinking of going up to a 1/2 tablet.

Suzanne

 

[determined]

Hi Suzanne,
A question.....did you have lots of migraines BEFORE you even started the protocol? So when you said the migraines stopped after 10 days, were the migraines "preexisting" or did starting the protocol seem to cause them?

Wow, with the exception of the itching, I had those same symptoms with starting up (after a few weeks of just feeling better). Sore teeth, headaches, nausea, and for the first time in quite a while....migraine.

Migraine was one of my earliest symptoms decades ago. A few things seemed to help: calcium d-glucarate, eliminating food allergens, and evening primrose oil.

So, my opinion: IF you had migraine before you started the protocol and they stopped when you started it, then they returned after a while, it still may be part of the start up symptoms. I would wait for a while longer before making any changes.

Good luck!

 

[suzanne]

Hi determined,

How far into the protocol are you- what are doses of methyl dolate and b12 re you taking and is it helping you?

It is interesting that so many people have start up with sore teeth- that and the nausea are the only new symptoms i got.

My headaches and nausea continue but I just figure it will go away eventually. My biggest concern is the return of my preexisting migraine and the atart up of what seems like hypothyroid symtpoms- I just cant wok out whetehr this may be because of the raise in folate?

As background, I had my first migraine and daily headaches about 10 years ago when this CFS set of symptoms started. The migraines- as distinct from the headaches have been at a frequency of 4-5 a week during this illness.

It was such a relief to have a break from migraine for the 3 weeks, at about my 10 day point of starting the protocol.

As I was having difficulty in going up from 750 mg to 1000 mg of mb12 Fredd suggested that I try increasing my dose of methyl folate. When i review my diary in more detail, it seems that my return of migraines and now aching back and hip, plus numbness in my feet may well have been brought on since i increased my methyl folate from 800 to 1200 mg. I just wonder if I have increased this m folatte too high and somehow it may be causing the return of what feels like my old hypothyroid symptoms- which definitely affects my migrianes. i think I read somewhere that rich has warned aginst too high a dose of methyl folate as it may override the methylation cycle and may cause a decrease in glutathione- I am not sure if i have this right but i am going to try a reduction of the methyl folate back to 800 a day and stay with the recently increased m b2 from 750 to 1000 and just wait and see what happens next.
thanks for yor inuput- I am at week 6 and am disappointed to have symptoms that feel like I am going backwards, so i think it is worth taking a step back on the methyl folate- which is my only critical change i made before things got worse. I just wish that this whole protocol could be more formulaic...but then our illness is so individual. Mmm.

 

[aprilk1869]

Some of your symptoms sound like potassium deficiency. Also, potassium is needed to sensitize the mitochondria to thyroid hormones. Also look read this quote a posted a while back. Read the full article as it's very useful. Zinc deficiency is also linked to migraines.

Copper tends to lower the potassium level in cells and tissues. Zinc tends to raise the potassium level and helps to retain it in cells and tissues. Copper tends to also raise the calcium level in cells and tissues. As copper lowers the potassium level and raises the calcium level, the calcium/ potassium ratio tends to increase, resulting in a high calcium/potassium ratio. A high calcium/potassium ratio is strongly associated with lower energy due to diminished activity of the thyroid gland. Estrogen has been shown to raise the copper level in cells and tissues. Therefore, estrogen, by means of its effect on copper, will also have the same effects on nutrient mineral status as copper itself.
http://docs.google.com/viewer?a=v&q=...a7IGqCLx7JG64Q

 

[determined]

Hi Suzanne,
Here is an explanation of how much of the supplements I am taking:

http://forums.phoenixrising.me/show...low-very-slow.....results&p=173804#post173804

I haven't made ANY increases in methylfolate or mB12. I have added the same diluted speck doses of all the other B vitamins.

I am still moving cautiously, but the increase in energy levels is still maintained. I am not sure where my energy boundaries are....for some perspective, a year ago I went to the pool a few times, mostly to get some sun to raise my vitamin D levels.

I would do some stretching exercises in the water and occasionally would try to use a kickboard and kick my legs a bit. I could only go about 1/2 of a length of the pool before I felt the "signal" that I needed to stop.

I've gone a few times to the pool this summer too....yesterday I kicked 12 LAPS! I stopped because I was afraid to continue, not because I was too tired. No PEM today.

I still have no idea how those miniscule doses I'm taking can have an effect. I think it's possible that the small dose, administered in this way, may be having an immunomodulatory effect and perhaps STOPPING an autoimmune response to the B vitamins.

Whatever the reason, I don't intend to increase the doses now. I remember Rich saying that some of the negative start-up reactions can have "momentum." No thanks!

I am still more chemically senstitive than before the supplements, but it continues to be managable at my level of involvement with the "real world."

So bottom line: I don't see the value in increasing doses when you still may have a long period of adjusting to the starting dose. Good luck Suzanne!

 

[determined]

I wanted to add that, in my experience over several decades with getting colds/not getting colds, GETTING them indicates that I am doing much better overall.

So I think this may be a good sign for you......

I hope you get a handle on those migraines! (look into calcium d-glucarate...if I stop taking it for even one week, I get a migraine....I've been on it for years)

 

[suzanne]

Hi Aprilk and determined,
I never thought about the possibility of potassium afecting my thyroid- I have just had a search on line nad found a bit of information that suggests low potassium can definitely affect thyroid.This is a bit of what I found:
Low potassium can contribute to hypothyroidism by not only preventing nutrients from getting into the thyroid cells thereby limiting production of T4, but also by limiting how much T3 can get into the cells, thereby lowering the metabolic rate of the cells and body.
So, I am excited that i may be able to get on top of these terrible musccle pains, headaches and migraines if I increase my potassium- worth a shot, anyway. thanks for the tip off- I would never have thought of this!

Determined, I just read your post- wow, such small doses!

It is amazing how our bodies can respond to even tiny amounts of the right supplements. I am interested that you too suffered from aching bottom teeth as part of start up - me too- it was so bad to start with that I wanted to go to the dentist and have it pulled! Thankfully it has now settled. It also resonated about the energy increase you have had- I too hve had that even though i feel quite sick at the moment. my dr told me to go to the gym and use the sauna- well, after a few weeks of going and using the sauna I decided to get in the pool- I started with just 10 laps of a 25 m pol an can now do 30 laps just after a few weeks. I actually thik i could do more, but dont want to push myself too hard. So what you have said about being able to do more exercise, I can relate to.

As to the cold- I haven't had one for about 10 years. And in the last 4 weeks I have had sore throats and one bad cold- so something is happening to the immune system I suspect. I hope it is a good sign.

As to the migraines, I am researching the calcium d glucarate. I seem to recollect that I tried this quite a few years ago for eostrogen dominance and it gave me really bad headaches- but I am relying on my memory. I guess the headaches are feasible as it seems to work on the detoxification of the body. I have just oredered some of this on line and will try a small dose when it arrives.

Thanks for all your ideas,
suzanne

 

[determined]

I definitely had "start-up" effects from calcium d-glucarate. But after those were done (a few days with each increase I made) it was just better.

This illness is so bizarre. Sometimes getting worse means that you may get better; other times, it just means what you are trying is a bad idea.

 

[suzanne]

Thanks for letting me know that you had start up on the calcium d-glucarate. I will take it really slowly when I get it in the mail. Can I ask what dose you are taking?....I really hope it might make a difference to these migraines. I just seem to be getting them most days , again.

 

[determined]

I use Tyler. Three capsules contain 1.5 calcium d-glucarate. Right now I am taking four. When I initially started it, I opened up one capsule and took a small fraction of one capsule. I usually got a mild stomachache and a worsening of my migraines. But then a few days later, no migraines! I kept increasing until I was taking 6 capsules a day. I've decreased to 4 in the last year or so to try to save some money.

Start small, is my advice. Let me know how it goes.

 

[suzanne]

Hi determined,
I have been 24 hours on the calcium d glucarate (cdg)...I started small as you suggested. I took 1/8 of a 250mg tablet and this is a dose of about 30 mg.

It is hard to believe but i feel shocking. I hve increased headpain and nausea so bad that I feel like i might vomit ( but havent). perhaps this is th liver detox process kicking in- I read somewhere that it might be an idea to dose every other day and gradually build as the symptoms of detox deminish...sound reasonable?

Too soon to tell how this might imact for my migraine, but I just feel awful, almost couch bound. I have brocken into body itch tonight, which may be the cdg or it may be my pre cursor that i get to a migraine coming on. I hope not.

Interesting about cdg for eostrogen dominance- i know i havae been eostrogen dominant for years, even though y eostrogen level is low, the saliva tests show i am dominnt reltive to my progesterone level. no ammount of changing my HRT ( I havehad a full hysterectomy) seems to help bring balance. A week ago i introduced Maca as this is meant to help hormone balance and I am hoing that it might help my low thryoid symptoms- too early to tell at this point- I once tried armour thyroid and all my migraine and headpain went away but I could not tolerate the medication ( T3 of any sort akes me feel good, but makes my body itch really badly)

 

[determined]

Hi Suzanne,
Of course it's impossible to tell for sure if the cdg is ultimately going to help in a really big way (and your current symptoms are "start up," die-off, or whaterver) or if it is just bad.

I also had huge reactions when I started. I started with a much smaller dose, too. I usually start these things with a speck - probably about 1/100th of a capsule.

So I had the start-up, but it only lasted about a day. Please let me know how you are doing tomorrow.

 

[suzanne]

Hi Suzanne,
Of course it's impossible to tell for sure if the cdg is ultimately going to help in a really big way (and your current symptoms are "start up," die-off, or whaterver) or if it is just bad.

I also had huge reactions when I started. I started with a much smaller dose, too. I usually start these things with a speck - probably about 1/100th of a capsule.

So I had the start-up, but it only lasted about a day. Please let me know how you are doing tomorrow.

Hi determined,
I decided to skip the cdg today, so it has been 48 hours since my last dose. It really has added to the headpain and nausea. In addition to these symptoms i have got inceased body pain and now my itch seems to have come back- sounds a bit like it could be liver related detox issues from the added cdg- I have notied that my tongue looks a bit clearer though

Amazing that i could feel so bad from 1/8th...so with your input I have decided to try again tonight and have added a 1/16 th which I think is about 15 mg- half of what I took for the first dose.

I'll let you know how I am doing in aout a weeks time- I hope that the migraines might slow down again. Thanks for your input about also experiencing start up....many years ago I am sure I took some of this and then tossed it out due to symptoms. Maybe the go slow- even slower will allow me to tolerate the start up effects.

 

[determined]

Best of luck.....I will be thinking of you and hoping that you can find an answer for the migraines.

My motto is to try not to suffer too much. I have always wanted to be able to continue my daily activities. Over the years, I have found things to help, albeit slowly, and now I am happy with where I am.

 

[suzanne]

Thanks for your good wishes. I think your motto is a good one. There is already a lot of suffering without adding lots more.

I will just tinker away with low doses- miniscule even, and see if it does help the ...bleep....migraines. You are really kind to have shared your experience with me- it just might help. Fingers crossed

 

[rydra_wong]

You catch a cold when u r low in zinc. The skin is made with zinc and if u do not have enough your skin is made with larger pores. If you take zinc your body uses it right away to make the pores in your skin smaller and when the pores in the skin of your nose are smaller, the rhino virus cannot get in. It is a barrier method so won't work once a whole lot of germs have gotton it (try it first day). I need quite a lot of zinc for it to work but I tend to be low on zinc -- others need far less. You take a small amount and wait a half hour - if u can breath, then stop. If not, take more. It sometimes takes 150mg to work for me. Caution - this prevents you from absorbing copper so ONLY do it while catching a cold. It does not work for flu. Fredd's protocol requires you to take zinc when starting the protocol.

I used to get migraines hormonally and as a sensitivity to caffeine/coffee. I do not get them post menopause. Search online and you will find lists of the top ten food sensitivities that trigger then...like coffee, cheese, chocolate... You may have a food sensitivity to something you used to eat but haven't for awhile and are eating now. Second guess would be that the protocol is messing with your adrenal function which affects your DHEA/hormonal cascade. You could try an adrenal supplement and/or DHEA to see if it takes care of the problem (I am betting it will).

calcium d glucarate gets rids of excess estrogen bound for elimination (it prevents it from becoming unbound thereby requiring the liver to bind it again). If you feel bad on it it seems to me it could be only one of two things -- the substance itself or the tablet excipients are nauseating OR dunno - but maybe you are low in estrogen and your body actually wants that estrogen u r removing? (I don't know how your body decides estrogen is 'excess and to be removed'). You know there are foods that contain that - many people do not need it. I think the foods are things like berries. I knew a guy who had his glucarate level tested and determined he didn't need that supplement...