boadicea
Submitted by boadicea on Fri, 2015-03-20 19:58

I’ve always known that most of my problems with CAP are down to the fact that my body is not good at detoxing.  Well, that’s a bit of an understatement really – truth is, my body doesn’t seem to know how.  I have lots of long-standing B12 and methylation issues, and so have been taking all the various methylation supplements (in accordance with my Yasko Methylation Panel results) for over three years.  I take methylcobalamin, hydroxocobalamin, adenosylcobalamin, Methylfolate (5-Methyltetrahydrofolic Acid), SAMe, lithium orotate – and a bucket load of other stuff too. All this has definitely helped - but not enough to get me through pulsing.  Herx and die-off still overwhelmed my body completely and was taking many months to resolve each time.So I stopped abx briefly around last November and did loads more research on detoxing strategies.  Detoxing has become a bit of a full time job, but all of this is now enabling me to make a bit more progress with pulsing. I’ve always felt that a bath with Epsom salts has helped me detox better than most other things.  So this has now become a daily thing – 20-30 minutes soak, using Epsom salts, Himalayan sea salt and bicarbonate of soda.  (It’s important to build up to this gradually, and shower afterwards).  I’m one of those whose body temperature has always been low – so I love things which warm me.  And yes, as per other recent threads, my experience is that hotter and longer definitely causes more die-off, as well as the detox effects.  I’ve started to add lavender oil, and hope to add more oils in the future.Before bathing or showering - dry body brushing.  I wasn’t convinced about this one, but it definitely works.  It only takes a few minutes, using a natural bristle brush, and brushing in straight lines towards the heart.  It must be done on dry skin, not wet.  As well as clearing pores, it stimulates the lymphatic system. I’ve now added oil pulling to the list as well.  Again, I wasn’t convinced about this – but it’s amazing!  Raw virgin coconut oil – held in mouth without swallowing for about 20 minutes. Then dispose, not down sink, and don’t swallow.  Rinse mouth with warm water afterwards.  I suppose I’d always assumed it was only for thrush/candida.  Not so, it seems.   I’ve found that it really does clear a befuddled brain and make me feel brighter.  And, as an added benefit, it very effectively cleans teeth – so I’m hoping it will help prevent the brown stuff that’s tended to build up in the past.Other strategies I’m using:Diatomaceous Earth – a glass of muddy water first thing each morning,drinking lots of water with lemon juice,burbur, pinella and parsley detox herbs (Cowden/Nutramedix – 10 drops of each in water) – usually twice a day, but loads more for bad herx – helps me loads,Alka Selzer Gold – (US version, not sold in UK) – helps brilliantly for bad herx,Chlorella – I’m still not sure how much this help but keep taking it anyway.I’ve always felt that raising glutathione levels is the key to all things, in relation to methylation and detoxification.  Although most research suggests that the best way to do this is to take precursors to glutathione, rather than supplementing, that didn’t seem to be working for me, no matter how many glutathione precursors I added.  So, after more research, I decided to try supplementing liposomal glutathione.  It’s very expensive stuff, but I’ll try anything which might help – and this definitely seems to be helping me.  It’s enabled me to build up to a couple of days of pulsing metronidazole, which I couldn’t do before.  So I’m happy!I’ve also found that my diet has gradually been evolving.  The immense need for carbs (caused by porphyria) has been diminishing.  So carb consumption has gone down and I’m trying to eliminate sugar as well.  I put on a lot of weight in the first year of CAP, and that is now gradually disappearing again, as if by magic.  Another of those glimmers, perhaps?And this morning I enjoyed the glorious experience of the solar eclipse – whilst standing barefoot on the dew covered lawn.  It was a powerful moment and full of hope.

luckypenny

20 Mar 2015 08:41 pm

Thank you for all of this! I now have a severe B-12 deficiency and can't figure out why - been on Cap for a year and no probs. Any reason for this? Do you know? Thank you/ Linda P.s. THinking maybe a lithium deficiency? I am supposed to pulse tomorrow but afraid as my system seems down...

Annelet

21 Mar 2015 05:13 pm

What is your B12 level, Linda ? have you had proper investigation .... Homocysteine, MMA etc.?

Definitely worth considering the 23andme genetic test and the Hair test for Lithium level.

Lithium deficiency will impair B12 and Folate getting INTO the cells from the blood. There will be other factors at play if you have low B12 in the blood and there may be genetic causes, like Pernicious Anemia and transcobalamin deficiency.  But you can have both low Lithium and low B12 together.

Annelet

24 Mar 2015 10:06 am

Happened to me too....... clinically I was B12 and/or folate deficient. High MCV. Smooth, shiny tongue. But my B12 was sky, high.  That is when I had the Hair Test done and found out about Lithium dumping and that Lithium is needed to get B12/Folate INTO the cells.

Dr Yasko has a whole video on her site about the imprtance of Lithium.

Image removed.Dr. Amy Yasko

http://www.scribd.com/…/Lithium-Induced-Perturbations-of-Vi…

I wanted to reiterate an important connection I have discovered concerning those who are MTR + and lithium levels. This relationship also seems to hold true for many adults regardless of their MTR status (this may be due to the impacts of oxidation with aging). I tend to find VERY LOW lithium levels (and signs of higher level lithium excretion) for those who are MTR + as well as many adults. This is important to pay attention to, as lithium plays a role in helping with B12 transport. Especially for those who have concerns about about transcobalamin II deficiency you want to be sure you keep lithium in a healthy normal range. Lithium levels can be followed on a combination of a HMT and a UEE. Also blood lithium levels can be checked. Those who show very low in cobalt on a UEE in spite of adequate B12 support should consider that lithium may be low and look at lithium on that same UEE as well as running a HMT. Possible sources of low dose lithium support can include low dose lithium orotate, Be Calm Spray, Lithia water. This connection is described in greater detail on the Lithium DVD (online no charge at http://www.dramyyasko.com/…/we…/lithium-connection-webisode/) As ALWAYS work with and defer to your doctor when using supplementation.
With love and hope, Dr.Amy


Annelet

21 Mar 2015 05:09 pm

Boadicea and Linda,  Have you done the 23andme genetic panel to look for detailed SNP's in the Methylation pathways?  ( B., you mention you did the Yasko panel, but I wasn't sure if you meant the genes or the metabolites, Homocysteine, methionine etc. ) And have you done the Hair Analysis test to check for Lithium levels. ?

Whilst many people can get away with adding in Methylation supplements and get improvement, I certainly couldn't !!!!  My genetic analysis showed I had multiple Homozygous SNP's in the Folate, CBS, BHMT and Homocysteine/Methionine pathways. I also have problems with B12 absorbtion, transport and uptake and Folate transport at a genetic level.  I did the yasko gene test initially, but then later did the 23andme test because it gave me access to the 900,000 or so SNP's in raw data form, and I was able to dig around and find these more complicated genes to do with Methylation and Detox.

The Hair Analysis test told me that I had undetectable Lithium levels. Lithium  at normal physiological levels is needed to get the B12 and Folate INTO the cells. Mine was all pooling in my blood and my levels therefore "appeared " very high..... although my MCV was 108 and I was symptomatically deficient. I started taking some Lithium Orotate, 5mg twice a day, and immediately got some detox of Heavy Metals, and my MCV started coming down..... but then it got worse again.

I redid my hair test and it was still undetectable. Then I realised i had got it wrong.... Yasko says it is important to get the Lithium up in balance BEFORE adding in the B12. If you are a Lithium "dumper" (esp. those with MTR/MTRR mutations) as I am, adding in the B12 too soon or too much will exaccerbate the Lithium loss.  If you do the test through her office she will comment on the results..... and in my case she is spot on ! I am on Lithium Orotate 15mg, NO B12 ( as I have plenty in my serum ) and a TINY dose of 5MTHF, 65mcg. Even this tiny dose of folate is enough to jump start the Methylation and detox of metals at a level which is just about tolerable. ( I am MTHFR C677T +/+ )

I too tried the Liposomal Glutathione...... I have no idea whether it did anything.... like you say, it is a temporary help, maybe.

As to the Epsom Salts.... do you know you magnesium level? maybe you are raising Mg levels which is helping you?

Do you know what your Vitamin D levels are and what your VDR SNP's are ?

Anne

boadicea

21 Mar 2015 06:50 pm

Many thanks for your response, Annelet.  Much appreciated.

I did the Yasko Methylation Panel in 2012.  My results:

MAOA R297R +/+

NOS D298E +/+

COMT V158M +/-

COMT H62H +/-

VDR Taq Tt

VDR Fok Ff

MTRR A66G +/-

MTRR 11 +/-

BHMT 1 +/-

BHMT 2 +/-

BHMT 4 +/-

BHMT 8 +/-

CBS A360A +/-

What I know is:  MAOA is involved in the breakdown of serotonin .  NOS relates to ammonia detox as part of the urea cycle.  COMT involves the breakdown of dopermine, epinephrine and norepinephrine.  VDR relates to vitamin Di receptors .  MTRR can cause problems with recycling B12.  BHMT relates to the conversion of homocysteinei to methionine (it is a ‘short cut’ through the methylation cycle).  CBS enzyme acts as a gateway between homocysteine and the downstream portion of the pathway that generates ammonia in the body.  This can further deplete B12 and can also release sulphite toxins.

My B12 and methylfolate supplementation has all been worked out by trial and error over the years, based on the Yasko guidance. 

Homocysteine was about 11umol/l in 2010 (pre-CAP and supplements) and down to 5.5 umol/l last year.

No, I’ve not had lithium levels checked.   I should probably get the hair analysis test.  I’ve not had any testing for metals – fearful, I guess, as I do have amalgam fillings and having them removed isn’t an option for me.  I definitely noticed improvement when I started taking 5mg lithium orotate though.

I’ve recently ordered 23andme – so that I can start to investigate things further.  It’s available in the UK now.  I’d be really interested to hear about other genes which might be relevant to all of this.

I think magnesium was OK last time it was checked, but I can’t find any numbers at the moment.

Vit D – I still struggle with supplementing this, so only take 2000iu of D3. I was surprised, when tested for the first time ever, that my VD3 was 114.1 nmol/L.  I’d assumed it would be lower.  It was tested in the October though, so I’m assuming that level was from sunshine through the summer.  I love sunshine and always feel a great need for it – I’ve always assumed that might be Vit D related.  I’ve wondered whether my serum Vit D level might be OK but that it’s not getting to where it’s needed.

Hope all that makes sense!  Thanks!

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Annelet

22 Mar 2015 09:30 pm

Bit late here, so this is a quick reply for now.... what is your MTHFR status?

Are you taking Vitamin K2 and magnesium with the D ?

Anne

boadicea

24 Mar 2015 09:13 am

Anne - MTHFR (C677T, 3 and A1298C) all show as -/-, so OK.  I was surprised by that, especially as I had shown improvement when adding methylfolate to the B12 I was already supplementing.

Yes, to Vit K2 and magnesium with D.

The liposomal glutathione is like magic potion for me.  It enables me to get through herx from pulsing in a couple of days, when it was taking weeks and months each time withou the glutathione.  I'd take it forever - if it didn't cost about £50 a week!

I really don't think SAMe does anything for me.  Impossible to tell for sure, but there doesn't seem to be a difference if I take it or don't.  Don't know whether that gives us any clues.

Many thanks

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Annelet

24 Mar 2015 09:54 am

No MTHFR's at all..... that makes you very special !!!!!   This is where the 23andme comes in very handy. There is MUCH more to Methylation than just MTHFR. There are multiple SNP's along the Folate Cycle pathway, and then also SNP's that affect the transport of Folate around the body and into the cells. Same with B12. Transcobalamin deficiency seems to be a biggie, and that will show up on the 23andme. The results from the gene test comes in Raw material form....... as a code, and then you can look up any gene you like by first finding the code and applying it. This is incredibly labor intensive. I have used www.Livewello.com which  translates many of your genes for you and has a search engine that helps you find more. It costs $20.

There are subtle differences in the genes that Yasko covers with the blood test, and the 23andme include in their latest "chip". Yasko includes SUOX, the other does not. So it is good you have both.

The fact that you seem to have such a good effect from Glutathione is a clue.  have you had a fasting Homocysteine test?

The Hair Test was a real help to me too, in that it helped me to identify the Lithium depletion.  I ordered from Dr Yasko's site. No doctors order is needed. She adds her comments to the results.... they have been invaluable for me. http://www.holisticheal.com/hair-elements-test-kit.html

Anne

luckypenny

21 Mar 2015 06:59 pm

Anne, you are the answer to my prayers today! Have just sent off the 23 and me and seem to have b-12 defieciency although I take a whack of it + shots - my tongue is all strange.......I have never had this before but reading that it is due to a lack of lithium. I will run this by the ND  and MD I guess as I am not quite sure what to do - unless I just do as you are doing and hope for best?! Mine always shows very high in blood test too. Thank you again, further advice so appreciated. And B. good if you are raising your magnesium levels - that helps everything! Linda

A PS here - I cannot take Vitamin d3 levels go waaaay up on small dosage and direct calcium in to my blood....

Annelet

22 Mar 2015 09:27 pm

Good that you are doing the 23andme , Linda.  It sounds as if you have Functional B12 and/or folate deficiency, Linda. The levels are high in the blood but cant get into the cells where they are needed. Dont expect your MD or even your ND to know about this.... although they might have heard about MTHFR gne mutation. This is all VERY new science. I did find a Functional Medicicne MD near Toronto who does  have info about Lithium on his web site..... if you are interested , I will try and find him again.  But really.... you can do the investigations for this yourself.... you can get the hair test done through Dr yasko's office..... she is probably the leading expert on this and has done thousands of these lab tests...mostly on Autistic children, but now also on people with CFS and related type of diseases.

I will send you some more links and info about this. Also the Vit D issue may well be to do with mutations of the Vitamin D receptors.... this will show up on your gene test also. you may well need to combine with Vitamin K2 and magnesium to get the D into your bones and not your arteries! More info to come soon.

I can PM you my email if you like?

Anne