no more gains after 5 months- and problems with mercury

[suzanne]

I wonder if anyone has any ideas or experience that might help me make some more gains.

i am stuck with having made about a 305 gain in energy and some improvement in sleep, but am still really itchy all over my body and have constanct headches ( these were problems before the protocol. And I have migraines still about 2 a week, as I did before). I don't seem to be making any more gains.

I know that I have a mercury and candida problem as every time i try to treat either, all my symptoms get worse and I end up stopping that treatment, with no gains made. i have been told that until I get on top of the mercury burden, that I will not make any gains, but I seem to no be able to tolerate the treatements- including the cutler protocol. I was hoping that fredd's protocol might deal with the mercury via the glutathione, but maybe I am not taking enough of the active supplements?

My current thoughts are ( very confused! - maybe I need to keep pushing the dose of m b12 up and perhaps add some adenosyl. I also think I could try to increase the m folate. I can only do these things very slowly as i seem to react strongly with increased itching and headaches- plus nausea, every time I go up.

I am currently taking 1250 mcg (ezymatic) mb12 in spit doses.
600mcg M folate

I am taking most co factors, but no:
vit D ( makes itching worse);
DMG
carnitine.

I have tried over the last month to introduce some of the super fruit extratcs like pomegranate and mangosteen, as i had read they were good for the oxidation that many PWE's have, but i hae had to stop as my itching has became too intense and the headaches and nausea were intolerable- I even started to vomit on some days even despite my dose being about 1/8 of what was suggested. The only explanation i can give to my reactions (they were not an allergic type) is that the superfruits ( all being antifungal) were starting to deal with the candida issues but my body was not able to tolerate the increased toxicity- it really felt like I was poisoned. i stopped the super fruit supplements after the vomitting episodes ( kinda scared me) and I am now trying to work out what basics of Fredds protocol i need to tweek to get better.

Can anyone comment on whether fredd's protocol is likely to deal with my mercury problem, if I just keep going and increase the doses, as I can?

Any other thooughts or suggestions?

 

[suzanne]

Oops, I meant that to read 30% gain...my head is not what it should be, apologies.

 

[Adster]

What was your dose/chelator/length of round and rest period on the cutler protocol? What were the symptoms on/after the round?

 

[Valentijn]

Itching could be from new food allergies. I developed several a few months after getting sick. The constant headache could be from chronic brain swelling. If so, it should go away a day or two after starting omega 3 fish oil.

 

[Freddd]

I wonder if anyone has any ideas or experience that might help me make some more gains.

i am stuck with having made about a 305 gain in energy and some improvement in sleep, but am still really itchy all over my body and have constanct headches ( these were problems before the protocol. And I have migraines still about 2 a week, as I did before). I don't seem to be making any more gains.

I know that I have a mercury and candida problem as every time i try to treat either, all my symptoms get worse and I end up stopping that treatment, with no gains made. i have been told that until I get on top of the mercury burden, that I will not make any gains, but I seem to no be able to tolerate the treatements- including the cutler protocol. I was hoping that fredd's protocol might deal with the mercury via the glutathione, but maybe I am not taking enough of the active supplements?

My current thoughts are ( very confused! - maybe I need to keep pushing the dose of m b12 up and perhaps add some adenosyl. I also think I could try to increase the m folate. I can only do these things very slowly as i seem to react strongly with increased itching and headaches- plus nausea, every time I go up.

I am currently taking 1250 mcg (ezymatic) mb12 in spit doses.
600mcg M folate

I am taking most co factors, but no:
vit D ( makes itching worse);
DMG
carnitine.

I have tried over the last month to introduce some of the super fruit extratcs like pomegranate and mangosteen, as i had read they were good for the oxidation that many PWE's have, but i hae had to stop as my itching has became too intense and the headaches and nausea were intolerable- I even started to vomit on some days even despite my dose being about 1/8 of what was suggested. The only explanation i can give to my reactions (they were not an allergic type) is that the superfruits ( all being antifungal) were starting to deal with the candida issues but my body was not able to tolerate the increased toxicity- it really felt like I was poisoned. i stopped the super fruit supplements after the vomitting episodes ( kinda scared me) and I am now trying to work out what basics of Fredds protocol i need to tweek to get better.

Can anyone comment on whether fredd's protocol is likely to deal with my mercury problem, if I just keep going and increase the doses, as I can?

Any other thooughts or suggestions?

Hi Suzzane,

If you could list every single item you are taking I will take a look at it and see what I can come up with. The itching, naueea and headaches are suggestive of a number of posibilities but I need to see what you are taking to possibly narrow it down. I very sincerely doubt that this has anything at all to do with mercury.

 

[suzanne]

I take the following supplemnets:

enzymatic mB12 1250 ( in 4 split doses)
Douglas B complex 1 tablet (incl m folate 400mcg)
Solgar m folate 200mcg
p 5 p 45 mg- total (20mg in Douglas supplement)
Sam-e 400mg
chelated magnesium 400mg
co q 10 100 mg
pycnogenol 100mg
molybeddenum 1 mg
milk thistle 10,000mcg
l- theanine 400 mg
grape seed 1000mg
chelated manganese 20mg.

I also added chlorella 4 weeks ago. I have greadually built up to 5000 mg a day in divided doses.

I did increase this a day ago and my headaches and neck aches are worse today. It is too soon for me to know if this is my probelm as i also started taking my B12 (a few days ago) in larger doses- I take the same dose of 1250 but have started to take 250 mg am 500mg in arvo and 500mg before bed. Before then, I always took the m b12 in 250 mg dose.

I will respond soon about my experience with the cutler protocol and other mercury programmes- but in short, when i take any mercury chelator I get chronic itchy skin, chronic headaches and muscle aches. These are the same symtpoms that I get when I increase m b12.

thanks Fredd, I am in a lot of head pain - not to mention the body itching and nausa. i am living on activated charcoal ( which does help a bit) I take 3 taspoons of charcaol twice a day and 3 times if I get a migraine- whcih seems to be about twice a week.
celery seed 6000mg 4-6 tablets (instead of patassium which gives me gastric distress)
digestive enzymes with each meal
selenium 200mcg
vit A 10000 iu
vit c 1000mg
vit e 400 iu

 

[suzanne]

Adster,
I only lasted 30 hours on a chelation round "cutler" style. I was taking 6 mg of dmsa every 4 hous and I was absolutely bed ridden by the experience. i got chronic nausea, itchy skin and headaches- all my usual symptoms just got worse. I did notice when I did this, that it felt like the worst candida die off experience ( similar feeling of being toxic). Also, my usually white coated tongue cleared entirely during the 30 hours.

After I stopped the dmsa, it took me about 48 hour to recover back to my usual symptoms.

I have since tried humifulvate, modified citrus pectin, brown algae- they all give me the intolerable exacerbation of symptoms that i got on the dmsa- that is why my dr suggested that i do the mB12 protocol - in the hope tat it would bring down my mercury levels.

i know that i have a candida problem as i have had stool tests that show this to be the case, but just like the mercury supplement, anti fungal supplements make me so unwell, I never get very far ( I have done 3 months on pharmaceutical anti fungals but never really had a break through experience of feling good). Once I did take grapeseed extract and coconut oil and i have no migraine for 5 months ad so i guess there is something in that ( I routinely have 2-3 migraines a day and this has not really improved on the mB12 protocol.)

 

[xrunner]

I only comment about the issue with mercury.
I assume you haven't got any ongoing mercury exposure. Apart from that you don't seem to follow the Cutler protocol as:

- I noticed the absence of any reference to the support part of the protocol in the fashion that's recommended...that's supposed to start before any chelation
- If you use cholrella, then that's no in line with the protocol; there are explicit warnings on the "frequent chelation" forum about its usage and the use of other sulfur-based supps. I have personal experience with it and don't recommend it.
- DMSA is not a compulsory chelating supplement, as far as I understand it, core chelation is based around ALA dosed 3 hours apart, nighttime included.
- I noticed the dosage of Milk Thistle you're taking ca 10mg. When feeling toxic, in my experience, a more effective dosage is closer to 1g per day of Silymarin.

Here's a link where Cutler talks about DMSA and yeast (but I disagree about the effectiveness of some anti-yeast supps listed there)
http://f1.grp.yahoofs.com/v1/UKoBT5...hjiotrK75-Nn8/Neutrophils, Yeast and DMSA.txt

And here's a link to more info about yeast, mercury and chelation
http://onibasu.com/wiki/Yeast_overgrowth

A broad anti-fungal agent is Japanese Knotweed, it doesn't kill yeast (more of an inhibitory effect), however it can raise antioxidant activity across the board, incl. glutathione synthesis and can help protect from toxins, particularly the CNS. I take it before and after any amalgam removal.
Here's some good sources
http://buhnerhealinglyme.com/herb-source-list/

Finally, it may sound like a lot of nonsense, any how I used to think that way, but you may want to have a look into Naet. It's also recommended by Cutler and others. It can help on several fronts: eliminating sensitivities to supps and meds (i.e. antifungals), assimilating nutrients (minerals etc) and detox on an energetic level of metals and other toxins. It won't cure you but it can clear roadblocks, in my experience.

all the best

 

[suzanne]

I assume you haven't got any ongoing mercury exposure. No- I had most of my mercury filling sout about 10 years ago when i first got sick with ME. The few crowns i had left, I also had replaced with composites about 1 year ago. Apart from that you don't seem to follow the Cutler protocol as:

- I noticed the absence of any reference to the support part of the protocol in the fashion that's recommended...that's supposed to start before any chelation
- If you use cholrella, then that's no in line with the protocol; there are explicit warnings on the "frequent chelation" forum about its usage and the use of other sulfur-based supps. I have personal experience with it and don't recommend it. I realise that chlorella is not pat of the protocol, but as I cannot tolerate the DMSA- which is critical to his protocol, then I hae tried other things- all with similar problems in terms of the exacerbation of symptoms.
- DMSA is not a compulsory chelating supplement, as far as I understand it, core chelation is based around ALA dosed 3 hours apart, nighttime included. It is actually recommended that you start with DMSA and not add the lipoic acis for a few months down the track. The lipoic is added to the DMSA protocol, not taken alone.
- I noticed the dosage of Milk Thistle you're taking ca 10mg. When feeling toxic, in my experience, a more effective dosage is closer to 1g per day of Silymarin. I am not cnvinced that the milk thistle causes me any problems- i have gradually built up to this dos, based on my drs advice and it has caused me no additional symptoms

Here's a link where Cutler talks about DMSA and yeast (but I disagree about the effectiveness of some anti-yeast supps listed there)
http://f1.grp.yahoofs.com/v1/UKoBT5s...and DMSA.txt

And here's a link to more info about yeast, mercury and chelation
http://onibasu.com/wiki/Yeast_overgrowth

Thanks for the links- I have also researched these issues, but stil make no headway with the yeast issues. i suspect it is because the mercury is at the hert of the yeast problem. I get lots of increased symptoms with antifungal protocols but dont eer seem to get better.

A broad anti-fungal agent is Japanese Knotweed, it doesn't kill yeast (more of an inhibitory effect), however it can raise antioxidant activity across the board, incl. glutathione synthesis and can help protect from toxins, particularly the CNS. I take it before and after any amalgam removal. I have taken the japanese Knotweed and unfortunately I am one of the 5% that Buhner refers t that breaks out in body rash when taking this supplement.
Here's some good sources
http://buhnerhealinglyme.com/herb-source-list/

Finally, it may sound like a lot of nonsense, any how I used to think that way, but you may want to have a look into Naet. It's also recommended by Cutler and others. It can help on several fronts: eliminating sensitivities to supps and meds (i.e. antifungals), assimilating nutrients (minerals etc) and detox on an energetic level of metals and other toxins. It won't cure you but it can clear roadblocks, in my experience. I have never gone down the Naet pathway. i am hoping that I can make some more headway with the Fredd protocol first- but I will keep the naet in mind if i need to take a different approach or adjunct to getting better. Many thanks for sharing your experienceall the best

 

[Freddd]

I take the following supplemnets:

enzymatic mB12 1250 ( in 4 split doses)
Douglas B complex 1 tablet (incl m folate 400mcg)
Solgar m folate 200mcg
p 5 p 45 mg- total (20mg in Douglas supplement)
Sam-e 400mg
chelated magnesium 400mg
co q 10 100 mg
pycnogenol 100mg
molybeddenum 1 mg
milk thistle 10,000mcg
l- theanine 400 mg
grape seed 1000mg
chelated manganese 20mg.

I also added chlorella 4 weeks ago. I have greadually built up to 5000 mg a day in divided doses.

I did increase this a day ago and my headaches and neck aches are worse today. It is too soon for me to know if this is my probelm as i also started taking my B12 (a few days ago) in larger doses- I take the same dose of 1250 but have started to take 250 mg am 500mg in arvo and 500mg before bed. Before then, I always took the m b12 in 250 mg dose.

I will respond soon about my experience with the cutler protocol and other mercury programmes- but in short, when i take any mercury chelator I get chronic itchy skin, chronic headaches and muscle aches. These are the same symtpoms that I get when I increase m b12.

thanks Fredd, I am in a lot of head pain - not to mention the body itching and nausa. i am living on activated charcoal ( which does help a bit) I take 3 taspoons of charcaol twice a day and 3 times if I get a migraine- whcih seems to be about twice a week.
celery seed 6000mg 4-6 tablets (instead of patassium which gives me gastric distress)
digestive enzymes with each meal
selenium 200mcg
vit A 10000 iu
vit c 1000mg
vit e 400 iu

Hi Suzanne,

How much Chlorella are you taking daily?

Now on to headaches. I had multiple different varfieties of headaches for years and beat them by taking them apart and solving each type. SO wjat I need from you is to go into total detail about the headaches. For instance do you have "veins of fire" in your scalp and/or face? Are your neck muscles through the roof sore? Are your neck muscles in spasm? Is your neck forced into reverse curavture by tight muscles? Does the headache come on slowly or in a fraction of a second if you movr your head/neck wrong? How long does it take to go away. What do you use to make it go away? I had for instance, chronic daily headaches and 3-5 day long killer headaches,. Do yours follow a pattern? Have you ever had sucess at aborting the headache in the first hour? How does light affect it?

There is an old joke, not funny but instructive.

The man said "I have a terrible headache". His friend says "What kind of headache?." Man says "I don't know". Friend - Have you tried pounding your head against the wall". Man says "Yes, but it doesn't help." Friend - Then it might be a cluster headache rather than a migraine." Pounding your head on the wall is unthinkable for a migraine but sounds like it might help in a cluster headache but it doesn't.

Anyway, the point is that some of the nuances can tell us a lot.

What medications are you taking? Regularly? Irregularly?


Can you descruibe the nausea in detail.

For instance my experience. -- I had daily nausea and vomitting. Even a cough could trigger vomitting. I had to take Compazine suppositories to control it. I also had multiple "acid surging up the throat at night" episodes. In the 80s and 90s I developed nausea about 2 hours after eating. Also, just as a peculiarity, all 3 of my children were unable to tell the difference between hunger and stomach growling and nausea. Some drugs cause a "stomach growling" that can feel like nausea.

Can you describe the itching in detail? Also, the smoothness or problems with your skin like dry flakey areas, bumps, infected folicles, etc.

Do you ever have itching deep inside your feet or hands or elsewhere or always surface?

 

[Adster]

I wonder if it is worth trying another round of DMSA at a lower dose, but then I don't know how bad the experience was for you! For me, my first round(5mg) was like 7 years of muscle tension melting away, and my eyesight returned to normal for a while, the world seemed so colourful! It did take me a couple of weeks to recover. Adrenal cortex extract really helps with the recovery time. Have you posted on the Cutler Protocol yahoo group?

 

[xrunner]

I assume you haven't got any ongoing mercury exposure. No- I had most of my mercury filling sout about 10 years ago when i first got sick with ME. The few crowns i had left, I also had replaced with composites about 1 year ago. Apart from that you don't seem to follow the Cutler protocol as:

- I noticed the absence of any reference to the support part of the protocol in the fashion that's recommended...that's supposed to start before any chelation
- If you use cholrella, then that's no in line with the protocol; there are explicit warnings on the "frequent chelation" forum about its usage and the use of other sulfur-based supps. I have personal experience with it and don't recommend it. I realise that chlorella is not pat of the protocol, but as I cannot tolerate the DMSA- which is critical to his protocol, then I hae tried other things- all with similar problems in terms of the exacerbation of symptoms.
- DMSA is not a compulsory chelating supplement, as far as I understand it, core chelation is based around ALA dosed 3 hours apart, nighttime included. It is actually recommended that you start with DMSA and not add the lipoic acis for a few months down the track. The lipoic is added to the DMSA protocol, not taken alone.
- I noticed the dosage of Milk Thistle you're taking ca 10mg. When feeling toxic, in my experience, a more effective dosage is closer to 1g per day of Silymarin. I am not cnvinced that the milk thistle causes me any problems- i have gradually built up to this dos, based on my drs advice and it has caused me no additional symptoms

Here's a link where Cutler talks about DMSA and yeast (but I disagree about the effectiveness of some anti-yeast supps listed there)
http://f1.grp.yahoofs.com/v1/UKoBT5s...and DMSA.txt

And here's a link to more info about yeast, mercury and chelation
http://onibasu.com/wiki/Yeast_overgrowth

Thanks for the links- I have also researched these issues, but stil make no headway with the yeast issues. i suspect it is because the mercury is at the hert of the yeast problem. I get lots of increased symptoms with antifungal protocols but dont eer seem to get better.

A broad anti-fungal agent is Japanese Knotweed, it doesn't kill yeast (more of an inhibitory effect), however it can raise antioxidant activity across the board, incl. glutathione synthesis and can help protect from toxins, particularly the CNS. I take it before and after any amalgam removal. I have taken the japanese Knotweed and unfortunately I am one of the 5% that Buhner refers t that breaks out in body rash when taking this supplement.
Here's some good sources
http://buhnerhealinglyme.com/herb-source-list/

Finally, it may sound like a lot of nonsense, any how I used to think that way, but you may want to have a look into Naet. It's also recommended by Cutler and others. It can help on several fronts: eliminating sensitivities to supps and meds (i.e. antifungals), assimilating nutrients (minerals etc) and detox on an energetic level of metals and other toxins. It won't cure you but it can clear roadblocks, in my experience. I have never gone down the Naet pathway. i am hoping that I can make some more headway with the Fredd protocol first- but I will keep the naet in mind if i need to take a different approach or adjunct to getting better. Many thanks for sharing your experienceall the best

Hi Suzanne,
DMSA is supposed to help reduce the load of mercury in the blood days following amalgams removal. Later in conjunction with ALA, as you pointed out, is supposed to reduce symptoms of deeper chelation. But if DMSA makes you worse off, there's no point in taking it. According to Cutler, DMPS is a better chelator than DMSA but I don;t know how it fares vs DMSA in terms of tolerance and effect on yeast, which DMSA has. It's a trial and error process for everyone and sometimes we have to take a few steps back before making progress.
Your sensitivity to Knotweed is bad luck. Regarding Milk Thistle, I meant that if you take just 10mg, that's pretty low as I was referring to 1 gram in divided doses.
I hope you can find a way out of there.

 

[suzanne]

Hi Fredd,

Thanks heaps for trying to give me helping hand.

Background.
I have been on your protocol since the last week of july- about 5 months. I started with a methyl B12 shot from my dr- I dont know the strength of the injection but he told me he was only giving me a small dose as i was so sensitive to medications.

First week
Reaction to first Mb12 injection:
increased head pain
increased body itch
body aches
pimples erupted on skin
The sore teeth were new symptoms. The others were all exacerbated.

Four days after the injection I added the sublingual m B12 Jarrows 1200 and 400mg solgar folate. I noticed:
nasal drip
increased itchy skin and headaches
loose bowels
nausea
burning skin especially hands

The nausea and burning were also new symptoms tht I did not get from the m b12 injection.

week 2
After 2 days on this 1200 mb12 dose I dropped the dose to 250 am and pm and kept the folate the same.
My symptoms were all still evident but more tolerable.
The first 16 days of the programme I had no migraine- then they came back to my usual 2 a week.


3 weeks
I increased the m b12 from 500 to 1000mg and noted the following in my diary:
increased itch
loose bowel
nausea headache
sore pancreas
sore teeth
increased tiredness
sore hip

I noticed more energy at this poitn and introduced exercise ( swimming) which I am still doing when i dont have migraine.

Four weeks
Decreased the m b12 dose from 1000 to 750. I also increased the folate from 400 to 800.

i started to get cramps. I tried potassium but due to GI problems (burning) I ound that celery seed extratc ( high in potassium) seems to sort out this problem. i now take 6-9 g a day depening on how the muscles feel.

5 weeks
I experimented with increasing the folate from 800 to 1200. I think I stayed on this dose for a week and due to symptoms i then decreased solgar to 600 a day- a week later. My diary says:
very itchy
headache v.bad
painful pancreas
bad nausea
migraine frequency increased (3 a week)
earache (new)

At 6 weeks:
I got a sore throat and a cold- which is exceptional as I NEVER get colds or sore throats.
Increased M b12 from 750 to 1000. I documented that i had more unwell feeling when increased mb12- achey hip and back, nausea, bad headache and loose bowel, burning skin.

Week 7
Increased m b12 from 1000 to 1250. Noted: v bad headache, back ache, increased itchy skin, sweating and nausea.

Week 8
reduced mb12 from 1250 to 1000.

From 2 months to 5 months (current ):
I have been fairly stable on 1000 mb12 and 600 methyl folate ( made up of solgar and Douglas labs).
I only recently increased m b12 from 1000 to 1250 and have experienced the usual worsening of nausea, headache and body itch.

In the last few months I have made no progress. i am not as unwell as i was before I started- i can now do some exercise. The summary of current symptoms are:
Symptoms resolved:
No more teeth pain.
Symptoms improving:
ability to do some aerobic exercise
clarity of thought
sleep cycle ( a little improved)
Symptoms I did not have before the protocol:
nausea
burning skin
funny taste in my mouth
Pre existing symptoms worse since protocol:
headpain
neck pain
itchy skin
migraines (same)

Other supplements- including chlorella

In the last few months I have experimented a bit with some other supplements in the hope somethig may help. Almost anything that has a detox effect makes my itchy skin and headaches worse- eg calcium d glucarate (liver), antifungals eg candex, oregano oil; pomegranate and acai ( seperately): mangosteen; various chelation supplemnts and clay foot baths.

I have also trialled chlorella in the last 4 weeks. I worked up from a 1g dose to 5 g. i have stopped ( yesterday) as I am not sure if this helping or hindering. The picture of wat s ding what has become unclear.

Headaches and migraines. neck pain
I have had headaches and migraines as a key feature of my chronic fatigue illness since this all started 10 years ago. I went to bali for a holiday, got a stomach infection and have never been well since. I started getting headaches after this holiday ( never a migraine or headache before).

I have had headches for 8 of the 10 year illness. They went away for 2 years when I was on the marshall protocol but then after 2 years MP protocol no longer worked and the symptoms all came back (perhaps triggered by another stomach illness but this time from Vietnam).

The headaches are different to the migraines. The migraines I get about 2 a week- sometimes only 1 every 7-10 days if I am diligent in keep taking the charcoal powder 3 teaspoons twice a day. this does make me feel a bit bette, sort of less poisoned. the migraines stat with a strong wave of nausea and usually yawning and sometimes numbness in my toes. Always loose bowel goes with the migraine. Then the sickness and bad headache lasts for about 4 hours. i have treid every prophylactic on the market and they just do not work for me. I did have a perid of no migraines for a few months when i trialled T3 thyroid medication ( and also armour thyroid trialled too). That made me feel pretty good except i could not tolerate the increased itching symptom, so I eventually stopped this medication. I migh mention that my hair is falling out again and this is usually a sign that my thyroid might be a bit low.

The headaches feel like a really bad hangover, toxic headache. It is always there, just some days are worse than others. I do not take anything for this constant daily headpain unless it gets really bad and i am trying to sleep- about twice a week with migraine I take codeine forte only at bed time. The pain on my left temple is always worse than my right. It feels like pressure built up in my head and i can feel the tightness of the muscles around my neck and eye/temples when it is bad. Sometimes the pressure moves to the top of my head too. If it gets really bad the left side of my neck stiffens and even vigourous massage does not relieve the tension ( 6 weeks into the marshall protocol the migaine stopped. then after 6 months the headaches significatly improved to the point where many days did not notice them. I got sick in Vietnam after nearly 2 years on that programme and no amount of taking more or different antibiotis or the other benicar drug made any difference to my symptoms- I slowly go so sick again I had to stop work in April of this year- retired at 52!)

Nausea
The nausea builds up and ebbs and flows. It feels like I want to vomit. it feels just like a hangover nausea. Activated charchoal can reduce the feeling of both my nausea and itchy skin symtptoms. I had no nausea befre I started this protocol. it is made worse when i increase the m b12. The nausea is also made worse with the "superfruits" like pomegranate which did actually cause me to vomit on more than one occaison ( always about 2 hours after i took it). Food only relieves the nausea for a short period f time- eg 15 or so minutes but soon returns.

Skin issues
I am now 52. When I was 25 I had a bout of ithchy skin all over and it was resolved by a chinese dr telling me to try the anti candida diet. 10 days into that diet and the itchy skin went away.
My new round of itchy skin start about 12 months before I started this protocol. I had been on abx for 3 years. I had also been on vitamin D. At first when i stopped the vitamin D the itchy skin stopped. But then it returned shortly after wards. I have said that some things make it worse- like liver medications and anything that tried to detox my body like antifungals or mercury supplements or clay foot baths. The itchy skin is all over my body. My scalp and face are worst affected (or maybe it feels worse there) It moves around my legs and arms and torso too. Not really any rash- i have the occcaisonal hive and sometimes i have some pimple like spots under my skin on my back of chest, but these seem to come and go in bursts. i have also nnoticed i do now get some blind pimple eruptions on my face but this is also new since i started the protocol. the protocol just seems to make my itchy skin feel worse than it was before I started and this gets worse if I increase my m b12 dose.

I apologise for the length of the post, but I wanted to give you a better snapshot of what is happening.
I hope there may be a way forward.

 

[Freddd]

Hi Fredd,

Thanks heaps for trying to give me helping hand.

Background.
I have been on your protocol since the last week of july- about 5 months. I started with a methyl B12 shot from my dr- I dont know the strength of the injection but he told me he was only giving me a small dose as i was so sensitive to medications.

First week
Reaction to first Mb12 injection:
increased head pain
increased body itch
body aches
pimples erupted on skin
The sore teeth were new symptoms. The others were all exacerbated.

Four days after the injection I added the sublingual m B12 Jarrows 1200 and 400mg solgar folate. I noticed:
nasal drip
increased itchy skin and headaches
loose bowels
nausea
burning skin especially hands

The nausea and burning were also new symptoms tht I did not get from the m b12 injection.

week 2
After 2 days on this 1200 mb12 dose I dropped the dose to 250 am and pm and kept the folate the same.
My symptoms were all still evident but more tolerable.
The first 16 days of the programme I had no migraine- then they came back to my usual 2 a week.


3 weeks
I increased the m b12 from 500 to 1000mg and noted the following in my diary:
increased itch
loose bowel
nausea headache
sore pancreas
sore teeth
increased tiredness
sore hip

I noticed more energy at this poitn and introduced exercise ( swimming) which I am still doing when i dont have migraine.

Four weeks
Decreased the m b12 dose from 1000 to 750. I also increased the folate from 400 to 800.

i started to get cramps. I tried potassium but due to GI problems (burning) I ound that celery seed extratc ( high in potassium) seems to sort out this problem. i now take 6-9 g a day depening on how the muscles feel.

5 weeks
I experimented with increasing the folate from 800 to 1200. I think I stayed on this dose for a week and due to symptoms i then decreased solgar to 600 a day- a week later. My diary says:
very itchy
headache v.bad
painful pancreas
bad nausea
migraine frequency increased (3 a week)
earache (new)

At 6 weeks:
I got a sore throat and a cold- which is exceptional as I NEVER get colds or sore throats.
Increased M b12 from 750 to 1000. I documented that i had more unwell feeling when increased mb12- achey hip and back, nausea, bad headache and loose bowel, burning skin.

Week 7
Increased m b12 from 1000 to 1250. Noted: v bad headache, back ache, increased itchy skin, sweating and nausea.

Week 8
reduced mb12 from 1250 to 1000.

From 2 months to 5 months (current ):
I have been fairly stable on 1000 mb12 and 600 methyl folate ( made up of solgar and Douglas labs).
I only recently increased m b12 from 1000 to 1250 and have experienced the usual worsening of nausea, headache and body itch.

In the last few months I have made no progress. i am not as unwell as i was before I started- i can now do some exercise. The summary of current symptoms are:
Symptoms resolved:
No more teeth pain.
Symptoms improving:
ability to do some aerobic exercise
clarity of thought
sleep cycle ( a little improved)
Symptoms I did not have before the protocol:
nausea
burning skin
funny taste in my mouth
Pre existing symptoms worse since protocol:
headpain
neck pain
itchy skin
migraines (same)

Other supplements- including chlorella

In the last few months I have experimented a bit with some other supplements in the hope somethig may help. Almost anything that has a detox effect makes my itchy skin and headaches worse- eg calcium d glucarate (liver), antifungals eg candex, oregano oil; pomegranate and acai ( seperately): mangosteen; various chelation supplemnts and clay foot baths.

I have also trialled chlorella in the last 4 weeks. I worked up from a 1g dose to 5 g. i have stopped ( yesterday) as I am not sure if this helping or hindering. The picture of wat s ding what has become unclear.

Headaches and migraines. neck pain
I have had headaches and migraines as a key feature of my chronic fatigue illness since this all started 10 years ago. I went to bali for a holiday, got a stomach infection and have never been well since. I started getting headaches after this holiday ( never a migraine or headache before).

I have had headches for 8 of the 10 year illness. They went away for 2 years when I was on the marshall protocol but then after 2 years MP protocol no longer worked and the symptoms all came back (perhaps triggered by another stomach illness but this time from Vietnam).

The headaches are different to the migraines. The migraines I get about 2 a week- sometimes only 1 every 7-10 days if I am diligent in keep taking the charcoal powder 3 teaspoons twice a day. this does make me feel a bit bette, sort of less poisoned. the migraines stat with a strong wave of nausea and usually yawning and sometimes numbness in my toes. Always loose bowel goes with the migraine. Then the sickness and bad headache lasts for about 4 hours. i have treid every prophylactic on the market and they just do not work for me. I did have a perid of no migraines for a few months when i trialled T3 thyroid medication ( and also armour thyroid trialled too). That made me feel pretty good except i could not tolerate the increased itching symptom, so I eventually stopped this medication. I migh mention that my hair is falling out again and this is usually a sign that my thyroid might be a bit low.

The headaches feel like a really bad hangover, toxic headache. It is always there, just some days are worse than others. I do not take anything for this constant daily headpain unless it gets really bad and i am trying to sleep- about twice a week with migraine I take codeine forte only at bed time. The pain on my left temple is always worse than my right. It feels like pressure built up in my head and i can feel the tightness of the muscles around my neck and eye/temples when it is bad. Sometimes the pressure moves to the top of my head too. If it gets really bad the left side of my neck stiffens and even vigourous massage does not relieve the tension ( 6 weeks into the marshall protocol the migaine stopped. then after 6 months the headaches significatly improved to the point where many days did not notice them. I got sick in Vietnam after nearly 2 years on that programme and no amount of taking more or different antibiotis or the other benicar drug made any difference to my symptoms- I slowly go so sick again I had to stop work in April of this year- retired at 52!)

Nausea
The nausea builds up and ebbs and flows. It feels like I want to vomit. it feels just like a hangover nausea. Activated charchoal can reduce the feeling of both my nausea and itchy skin symtptoms. I had no nausea befre I started this protocol. it is made worse when i increase the m b12. The nausea is also made worse with the "superfruits" like pomegranate which did actually cause me to vomit on more than one occaison ( always about 2 hours after i took it). Food only relieves the nausea for a short period f time- eg 15 or so minutes but soon returns.

Skin issues
I am now 52. When I was 25 I had a bout of ithchy skin all over and it was resolved by a chinese dr telling me to try the anti candida diet. 10 days into that diet and the itchy skin went away.
My new round of itchy skin start about 12 months before I started this protocol. I had been on abx for 3 years. I had also been on vitamin D. At first when i stopped the vitamin D the itchy skin stopped. But then it returned shortly after wards. I have said that some things make it worse- like liver medications and anything that tried to detox my body like antifungals or mercury supplements or clay foot baths. The itchy skin is all over my body. My scalp and face are worst affected (or maybe it feels worse there) It moves around my legs and arms and torso too. Not really any rash- i have the occcaisonal hive and sometimes i have some pimple like spots under my skin on my back of chest, but these seem to come and go in bursts. i have also nnoticed i do now get some blind pimple eruptions on my face but this is also new since i started the protocol. the protocol just seems to make my itchy skin feel worse than it was before I started and this gets worse if I increase my m b12 dose.

I apologise for the length of the post, but I wanted to give you a better snapshot of what is happening.
I hope there may be a way forward.

Hi Suzanne,

Thankyou for the wealth of information. If you also list every supplement of every type that you take would be the other part I need. If perhaps you could also do the supps over time, showing changes at various stages, it could be helpful.


I'm going to make a start on what I do see here but I also need to go do some reading.


Reaction to first Mb12 injection:
increased head pain
increased body itch
body aches
pimples erupted on skin
The sore teeth were new symptoms. The others were all exacerbated.


The pimples erupting are generally a response to hydroxycbl or methylb12 that has some hydroxcbl via photolytic breakdown. If you saw the magenta color in the syringe as it wasn't wrapped in foil it was at some degree of breakdown from the light. The longer the light expsoure the more the breakdown. Were the pimples confined to the face and/or scalp or did they include other areas and which ones? The sore teeth in response to an injection makes pretty clear that this response is neurological. The increased head pain and body aches are also a usual onset response caused by changes in neurological functioning and these usually fade over time.

The increased itching is possibly curious. I can't say for sure. Is it all surface itching or do you get deep unscratchable itches in feet or hands or elsewhere? I came at this with skin with all sorts of bumps, irritations, rough and scaly areas, itchy etc. I had an overall sudden changes in all those things and then over the first year or so, various damaged skin areas sloughing off leaving smooth normal skin.

A clarification please, do surges of nausea cause sudden surges in headache?

The "funny taste" in mouth is very usual during this period. It can be caused by the sense of taste itself changing among other things. Do you floss and pick every day? The "funny taste" can be gum infections or even a drainage from an abcessed tooth which can also cause a sore throat. These are not the only causes but their possibility needs to be elliminated or accounted for in any case.

When the skin on your hands started burning did it also change texture and/or color?

Hypothyroid is very typical of folks like us with these problems. Thare are often other comormidities as well. If you can find a way to treat that it would likely be helpful.

Do you have kidney problems? Is your urine cloudy? If so does it come and go or ?

Do you have heart arythmias?

Do you have digestive system bloating and /or spasms with the nausea?

There are things that point

A lot of your symptoms could point at low potassium Potassium low enough to cause these problems could start at 4.2 or so and since some labs consider anything down to 3.5 to be "in range" it might not ever be noticed based on labs. Has your potassium been tested? How much potassium are you taking? In what forms? Assuming that you have no kidney problems that cause retention of potassium have you tried a 500mg challeng dose? What effect does it have on the symtpoms? You could know within hours if that is effective. The headaches, nausea, burning hands (what about feet?), increased aches, neck muscle pain could all be indicative of low potassium. Mood changes are possible too. The balance between calcium, magnesium and potassium can cause all sorts of problems if it gets out of whack. Antifungals can cause low potassium.

I have some reading to do about other things so I will await your answers.

 

[Adster]

One possibility for funny taste in mouth could be low zinc. This could also explain acne. Ramping up methylation could possibly place higher demands on zinc.

 

[Freddd]

One possibility for funny taste in mouth could be low zinc. This could also explain acne. Ramping up methylation could possibly place higher demands on zinc.

Hi Adster,

That's right, zinc is another one of those possible induced deficiencies and essential cofactors. However, when acne immediately (24 hours) follows a b12 injection it is virtualy always the hycbl. Zinc takes days at least and even weeks or months to start showing up deficient. The taste is more rapid to respond to changes, but again not because of a zinc deficiency which takes much longer to be induced. Repairing a zinc deficiency taste impairment takes months typically. The characteristic with b12 is sudden changes for some things. But by all means take zsinc, it is very important.

 

[suzanne]

Thanks all for your suggestions.

I am very sick at the moment- i am getting back to back migraine every 24 hours (last 3 days) - the migraines have been worse in intensity and frequency.

Something is going horribly wrong for me. the migraines were the worst i have had for years- i have been vomiting as they progress to their full blown state.

I am not able to answer all your quetsions today, fredd, but here is a short response:
Do you have kidney problems No Is your urine cloudy? No

Do you have heart arythmias? No

Do you have digestive system bloating and /or spasms with the nausea? Some problems with digestion- low bile and pancreas problems. When i have my worst headaches ( not talking about migranes here) I do often have nausea at the same time- the charcoal helps the headache reduce a little, sometimes helps the nausea and also the itchy skin.

I cannot tolerate potassium ( makes my guts burn) and i have tried so many different forms of potassium - including liuid form on my wrists- still caused the stomach burning ( high up). I take celery seed extract instead- said to be high in potassiuma dn causes me no grief.

I am so desperate to get back to a base line, that I have given up the following supplements to see what happens over the next week:
grape seed extract
pycynegol
no super fruits like acai, mangosteen, pomegranate
no cocoa ( I added this with my smoothie a few weeks ago and did not include with my list of supplements)
no chlorella

I do not know which if any of these are causing problems, but I have read that high nitric oxide can result in migraines. i am wondering if some/any of the above may be making my nitric oxide level too high? Anyway I will see what happens when i take them out. It may just be an accumulation of the chlorella and the incrrease of the chlorella to 4 g, but dont know for sure.

I also read that mangosteen and cocoa increase nitric oxide so this may be a problem?

I am trying to go back to a more basic protocol and will report in soon- unless you have any mbetter idea about what I might do.

 

[aprilk1869]

Suzane, you might want to read the info posted by Annesse if you haven't already on this thread titled Lack of proteases (pancreatic enzymes) and the symptoms of CFS.

Basically she believes that the pancreas is the root problem of many diseases because the pancreas produces enzymes to properly digest food. This leads to various vitamin, mineral and amino acid deficiencies. Also if proteins aren't properly digested the immune system sees them as being foreign and mounts an attack. There are other things too but this is the gist of it.

Also, migraines are linked to elevated levels of CGRP and this can be deregulated due to a lack of pancreatic enzymes.

She had CFS, FM and then lupus for 20 years and has cured herself by changing her diet in a major way. She's written a book which is available on Amazon but I've not read it. However there are people who set up a forum to discuss it and the things they've been doing include:-

Fermented foods (eg sauerkraut and kefir)
Raw milk
Organic vegetables
Organic and freerange meats high in b12 (eg clams and liver)

You can find the forum here: http://www.dailystrength.org/groups/curing-autoimmune-and-mimics-gaining-health

 

[Freddd]

Thanks all for your suggestions.

I am very sick at the moment- i am getting back to back migraine every 24 hours (last 3 days) - the migraines have been worse in intensity and frequency.

Something is going horribly wrong for me. the migraines were the worst i have had for years- i have been vomiting as they progress to their full blown state.

I am not able to answer all your quetsions today, fredd, but here is a short response:
Do you have kidney problems No Is your urine cloudy? No

Do you have heart arythmias? No

Do you have digestive system bloating and /or spasms with the nausea? Some problems with digestion- low bile and pancreas problems. When i have my worst headaches ( not talking about migranes here) I do often have nausea at the same time- the charcoal helps the headache reduce a little, sometimes helps the nausea and also the itchy skin.

I cannot tolerate potassium ( makes my guts burn) and i have tried so many different forms of potassium - including liuid form on my wrists- still caused the stomach burning ( high up). I take celery seed extract instead- said to be high in potassiuma dn causes me no grief.

I am so desperate to get back to a base line, that I have given up the following supplements to see what happens over the next week:
grape seed extract
pycynegol
no super fruits like acai, mangosteen, pomegranate
no cocoa ( I added this with my smoothie a few weeks ago and did not include with my list of supplements)
no chlorella

I do not know which if any of these are causing problems, but I have read that high nitric oxide can result in migraines. i am wondering if some/any of the above may be making my nitric oxide level too high? Anyway I will see what happens when i take them out. It may just be an accumulation of the chlorella and the incrrease of the chlorella to 4 g, but dont know for sure.

I also read that mangosteen and cocoa increase nitric oxide so this may be a problem?

I am trying to go back to a more basic protocol and will report in soon- unless you have any mbetter idea about what I might do.

Hi Suzanne,

I would like to suggest a possible potassium source that might work, a salt substitute from the supermarket sprinked on food. Another possiblity is the prescription potassium chloride far more diluted then usually given. If low potassium is what is causing the headaches, itching and things like that, and it could be, it si a problem that needs to be overcome. Food potassium just often is not enough, doesn't get absorbed well enough or fast enough to give relief. I would seriously suggest getting tested by your doc on the potassium but pay attention to the nunbers. If it is 4.5 or more it isn't potassium lack causing a problem. If it is 4.2 or less it very well could be low potassium. After a test you may have a nbetter idea and there may be products that work. For instance, does potassium gluconate TAKEN WITH FOOD, cause a problem? There are many different forms. Solid (pills, capsules) chloride forms can cause acid burning. Chelated forms might not do that. Highly diluted forms might not do that. Diluted in enough food might not do that.

For a person to heal they have to find a way to deal with each of these various things. A person that runs into roadblocks everywhere and gets stopped by them can't heal. So these things become challanges, problems to be solved.

I think that removing a lot of things as you are doing can be a useful approach to solving the question of what is useful and what causes problems. Anything that causes you to heal will cause the potassium to get lower. ThAt can cause many of the symptoms you describe and becomes a roadblock if it is the case. Good luck.

 

[suzanne]

Thanks Fredd,

I will go and get a potassium level check. After I have had the test I might try the slt substitute to see if it helps

Potassium gluconate taken with food still caused me problems, so I will wait and see what the test results are.

My symptoms are puzzle to me, and have worsened in the last month, so i think it is a good idea to stop the cocoa, pycynogel and grape seed extract- all said to increase nitric oxide ( and I know B12 is a nitric oxide scavenger) so just perhaps I have been undermining the benefits through taking these other suppleents. I also think stopping the chlorella might be a good idea as i am not sure wht t is doing.

I will get back when I have got some more information abot potassium and done some experimenting with these road blocks as you say.

Thanks also Adster about the advice on lower dose tril of DMSA- I went back on my notes and know that the round I did used 25mg DMSA tablets, I think cut into /4 or 1/8- cannot rememeber. I might try and let everything settle for me for a while and if I am up to it, I will trial another round using the 6 mg DMSA tablets and cut these into 1/8- a much lower dose and it would be interesting to see how I react.

Thanks all for your help.