The 12th Invest in ME Research Conference June, 2017, Part 2
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Do I need to stop my supplements?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by danceintherain, Apr 12, 2015.

  1. danceintherain

    danceintherain

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    I asked some questions in another thread and was advised to start my own with details about my symptoms, what supplements I take, and by SNP's I have. So this is long. Very long. I know I am not as bad off as a lot of people, but in I just wanted to give you as much info as possible.

    I have not started the methylation protocol yet. I am not sure if it will even help me. I take quite a few supplements right now and don't know if the would interfere with the process.
    My problems started about 9 years ago with some low back pain and the entire 9 year story is very long so I won't get into it, unless someone is interested in knowing how I got here. So...
    Here are my symptoms right now:
    -constant muscle spasms in head and neck
    -a strange dizzy-like feeling that I can't quite describe (not the normal dizzy feeling)
    -chronic, severe insomnia--became worse in Feb 2014 when I did a preliminary neurofeedback treatment. I could not make it through the 30 minutes and ever since that day could not fall asleep before 2am no matter what I tried. Then it got even worse in Sept when I had to start getting up at 6am to get my kids to school. After 2 weeks I quit sleeping altogether and I only recently have been falling asleep around 3:30-4am most every night, but waking a lot.
    -the more I do during the day, the less I sleep at night (and the quality of the sleep is worse too).
    -bright light and noise (particularly high pitched noise) sensitivity, but the level of sensitivity varies from mild to intense.
    -extreme fatigue all the time, which has gradually gotten worse with certain treatments and unexpected events. But since about October, it has continued to decline to the point where it is hard for me to do much. If I do stuff one day, I need a few days doing nothing in order to do stuff again...and I oy get a few hours maximum of "energy" (for lack of a better term) on the days I do stuff.
    -I used to have severe back pain that went away after taking some herbal liquid supplements. But now my back pain has returned in the past few weeks to the point where I can't wear a very loose fitting bra (which I absolutely have to wear now that it is summer). if I do, it hurts, and the next day I'm in even more pain. And I keep feeling more tired all the time.
    -I was diagnosed over the summer with Grave's disease. I had a tsh of .03 but my ft3/4 were relatively normal...only a little above average. But I do have the grave's antibodies. I was told I was subclinical and I did not have any noticeable symptoms. I was put on meds and now I am hypothyroid (which could explain why I am so much more tired). Last test showed tsh 4.7 and very low (but still in-range) ft3/4. I started having a really fast heart rate (100) in mid feb) so they increased my thyroid meds. It has gone down but not quite back to normal now. I can take propranolol (beta blocker) if needed. My bp has always been on the low side and that has not changed.
    -since the increase in meds I feel really depressed...and sometimes have anxiety.
    -I have not been able to exercise in years because it makes all my symptoms worse to even do light exercises beyond walking. I could walk around my neighborhood or up and down the boardwalk at the beach everyday before October and be fine, but now I cannot do that at all. I can probably walk to the end of my street and back now.

    The meds and supplements I take (I know this is a lot...I added things slowly over about 4 years.
    -Klonopin 1.25mg
    -lamictal 200mg
    -methimazole 5 mg
    **just finished weaning off mobic 7.5 mg 2x/day)
    - vit D10,000 iu/day(metagenics)
    -vit A 8000iu/day (retinol
    -K2 100mg/day
    -magnesium 300mg 2x/day
    Calcium 60mg 2x/day
    -zinc 50 mg/day
    -selenium 200 mcg/day
    -EFA 720 mg/day
    -DHA 1200mg/day
    -other omega 3s 280mg/day
    -cq10 50mg 2x/day
    -VesselCare (metagenics) 1x/day (contains:
    5mg ribo
    25 mg B6
    800 calcium l-5 MTHF
    1 mg methylcobalamin
    5 mg zinc
    500 mg TMG
    100 mg choline
    20 mg intrinsic factor
    -glycine 1g 2x/day
    -l-carnitine fumarate 250mg 4x
    -biotin 450 1or 2x/day
    -ALA 600 mg 1or 2x/day
    -Cellgevity, 2x/day, which contains:
    Vit C 42mg
    Selenium 12.5 mg
    D-Ribose 125 mg
    Proprietary blend:
    Cordyceps
    Curcumin
    Resveratrol
    ALA
    Grape seed extract
    Milk thistle
    Broccoli seed extract
    Aloe extract
    BioPerine
    -Metagenics ultra clear plus powder detox shake mix
    -Baseline nutritionals Colon Corrective, containing
    Aloe ferox leaf
    Cascara Sahara bark
    Barberry root
    Ginger root
    Fennel seed
    Terminalia Chebula fruit
    Cayenne fruit
    -baseline nutritionals heavy metal detox contains:
    Chlorella
    Black fulvic acid
    Cilantro leaf
    -Transformation K, L and H drain, containing:
    Sasparilla
    yellow dock
    Red root
    Red clover
    Stllingia root
    Prickly Ash bark
    Asparagus tuber
    Goldenrod tops
    Buchu leaf
    Juniper berries
    -diatomaceous earth
    **i have baseline nutritionals colon detoxifier but have not started it yet.

    SNP's (that I know of):
    -resistant to aspirin
    -poor ability to absorb vit D (+/+)
    -mthfr c677t (+/+)

    I have no idea if some of these supplements would need to be stopped in order to try the methylation protocol, or maybe all of them. Based on my details above, I have no idea if the protocol would do anything for me. I have had a lot of treatments backfire and only a couple work. Usually when they work it is fast and there has been little to no initial bad reaction. When I first took the Transformation products, I felt a ton better in just 3 days. I started NAC after a setback and I literally felt a huge difference in 45 minutes. I take the Cellgevity in place of NAC now. Keeping a strict diet without junk or legumes/grains, and low meats helped a lot for a while too. If anyone has any advice for me, I would appreciate it.

    Thank you for reading my post
     
  2. Gondwanaland

    Gondwanaland Senior Member

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    We are our own detectives here, and usually what works for one person doesn't work for another.

    I think for now the best reading you can do is
    http://forums.phoenixrising.me/inde...w-to-be-safe-on-a-methylation-protocol.26711/
    even if you are not starting a methylation protocol. There is valuable info in that document.

    My 2¢ is your body needs a break from so many chemicals. I bet there is a bunch of stuff that you are taking that doesn't help at all, or cancel the possible good effects of other useful stuff.

    If you follow the tips of "Start low" document, you will be able to discern what makes a difference for the better for you.

    BTW one supplement that gives me instant back pain is zinc.
     
  3. danceintherain

    danceintherain

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    Thank you. I would definitely start low. I know I am becoming increasingly sensitive to things. The supplements I take now were added very gradually. I can stop one at a time, seeing if anything changes, but I don't know how long I would have to wait to tell, if it didn't happen right away. For me, zinc didn't make a difference in my back pain. I actually have not taken it this past week at all, (mainly because I take so many supplements I will take a break from one or a few every so often). My original back pain (which began in 2006) finally went away in 2012 after I started a supplement regimen along with strict diet change. My back pain just returned after I got a pinched nerve (in late Dec). The pinched nerve went away (or at least the feeling of it) but my back just keeps hurting more and in all different ways. Some of them come and go. I am sure some people would recommend going to a chiropractor. Unfortunately for me, I have responded very badly to chiropractic treatment in the past (it was the thing that caused my initial problems actually..I tried more than one and then PT only to get worse and worse). I was only told years later by a spine doctor that a very small percentage of people react badly to chiro treatment. I read an article recently, written in defense of chiropractic treatment, that said the same thing. I know one chiro that practices a specific type of chiro called "no force" and I was able to see him about three times back in 2008, and get some minimal relief. But after that my body couldn't even handle that treatment. Not that there is anything I can do now, but I do believe that, had I started with him, it would be very unlikely that I would have ended up here. Not that I can say that for sure, and the fact is that I am here now, so it really doesn't matter. But the point of mentioning it is that now my body is even more sensitive and weak, so I am very wary of trying chiro or any manipulation of my body at all. Too many bad experiences. This back pain is so strange though. When I had pain from 2006-2012, it was the same pain all the time and only worsened when I tried to treat it (basically got pain in more places and existing pain increased). This pain keeps changing and the areas of my back where it hurts change too. And I could always wear a bra before without making it worse. It hurt a bit more to wear but not much, and the pain wasn't worse the next day. I don't understand that at all.
     
  4. Mary

    Mary Senior Member

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    Southern California
    @danceintherain - Muscle testing by a competent chiropractor has helped me immeasurably in determining what supplements are good for me, and the proper doses too. Years ago I had pain in my mid to upper back and the chiro determined it was due to some supplement or chemical, I can't remember exactly what, it's been so long, but he was spot on.

    I take a lot of supplements too (although not as much as you!) but each one has been vetted very carefully with reading and muscle testing and so on. And whenever I start something new, I watch very carefully to see how I react.

    Muscle testing helped me a lot with toxicity issues - I noticed you're taking chlorella and cilantro, both of which can be very hard to tolerate if one has a load of toxins.

    The chiro helped me with weak adrenals (which you very well might have, which could contribute to your sleep problems, low blood pressure and overall weakness) and with several different digestive problems. I would have been so much worse off without him. I've learned to do it myself, although when in doubt I will go see him and double check my findings.

    I think Gondwanaland could very well be right, that some of the stuff you're taking isn''t helping and may in fact be hurting you. So I would get that sorted out before starting something new. Otherwise you'll have no way to tell what is doing what to you.

    One way to find a chiro who does muscle testing is through the Standard Process home page, which has a search feature for practitioners who use their products, who most often do muscle testing.

    Good luck -
     
  5. Mary

    Mary Senior Member

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    Southern California
    @danceintherain - I just finished my reply when I saw yours about your bad experience with a chiropractor - ouch!

    Actually, most of the time I see my chiro just for muscle testing. I rarely get adjustments because I don't need them.

    I can see how traditional chiropractic could cause problems for someone, but the one I see now uses this little clicker thing - there's no manipulation, I think it could be used safely on anyone.

    But with muscle testing there is no manipulation. I just wanted to make that clear -
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    My husband had surgery for ulnar nerve inflammation in 2011. Today I know what has caused it and what could have been done to reverse it. He is 2x +/+COMT and can't clear dopamine and adrenaline/norepinephrine (stress) as fast as needed, so the catecholamines stay for long time in the synapses causing damage.

    We are seeing an integrative dr who prescribed him a ton of stuff and his nerve pain and back pain (sciatica) worsened. So I had to figure out what was causing dopamine increase and cut off. It worked! He is pain free now and dropped the SSRI in 4 days (was taking it for almost 3 years).
    And high dose ALA :nervous:

    Also take Milk Thistle for instance, it releases iron from the liver and causes muscle tension. It happened to DH and I, so now we only take it 1x or 2x weekely, preverably early in the day otherwise it makes for tense sleep.

    Another thing that causes pain is liver overload (excess chemicals to metabolize - see link in my signature for the liver). Whenever I have an estrogenic migraine, I end up vomiting and right after it all my joints hurt terribly. I have a slow estrogen breakdown due to my CYP SNPs.

    If you can afford the 23andMe testing ($99) by all means do it. It has been helping me immensely.

    Edit - vit K2 can be also very painful - there is a thread about it K2 MK4
     
  7. UM MAN

    UM MAN Senior Member

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    I hope that there are typo's on your post.
    10,000IU of D3 daily?? What are your active and storage D3 blood levels?
    Selenium 12.5 mg + selenium 200 mcg/day really????
     
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  8. Gondwanaland

    Gondwanaland Senior Member

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    That is also A LOT of vit A, for how long have you taking that much of it daily?
     
  9. danceintherain

    danceintherain

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    Thank you for all of your comments. I apologize for not putting the individual quotes here to give answers...I have only figured out how to quote one person ( I see the "multiquote" but I just don't know how to use it). So I am sorry...I tried to comment on everything. I know it is a but discombobulated....

    Until I got vitamin d shots, my Vit d levels were in the low 30's. Now they are in the 60's. The 10,000 iu is not a typo and has been approved by 3 different doctors (PCP, integrative, and nutritional/chiropractic...although I only see her for nutrition).

    The 12.5 mg Selenium was meant to be mcg.

    I will have to look at how long Vit A...I don't know off-hand.

    The first chiropractor I saw used that clicking device. I have forgotten what it is called. It is not a manipulation by hand but manipulate basically means move around, and the device does move things around. And it is still force. It is considered low force, as opposed to the bone cracking, limb jerking high force treatments dine by many chiropractors. The no force chiro used his hands and very gently made tiny movements. I could barely even feel his hand because the pressure was so slight. I felt every click of that device when I went to chiro who used it. It didn't hurt but it was still a small whack on my spine, or hip joints, or anywhere. You can adjust the intensity of that device as well. Once she didn't realized she had it too strong and used it on my jaw. That hurt! I am glad it works for you, but it was not for me.

    The nutritionist/chiropractor I see does muscle testing on me so I do use that method. I neglected to do it with one supplement I tried recently and had a terrible reaction. I tend to react badly right away if I have a bad reaction. Usually within 30 minutes, but occasionally it has taken about 4 or 5 days.

    K2, ALA, and milk thistle: I take supplements one at a time and don't add until I can tell the effect of that supplement. I added the K2, ALA and milk thistle a very long time ago (one at a time with a long time period between each) and continued to get better with them in my regimen.

    I research everything I take and tend to becvery hesitant/skeptical when trying anything new. I look for every bad reaction I can find, as well as interactions. I have had a lot of bad experiences with treatments and am really gunshy about trying new things. Almost paranoid be I am so scared to get worse. I have added the chlorella/cilantro/Humuc acid just a few days ago and haven't noticed anything different yet. begore that, I am not sure if the last time I've added anything new. It's been quite a while. The supplement I reacted badly to was in October (and I dint think I ever fully recovered....took it for 3 days before I felt bad). The vesselcare was in August, and before that...it was a long time. I actually dropped some stuff instead of adding.

    @Godwanaland what did you do to fix your husband's problem so he could quit his SSRI? I have had neurotransmitter testing and all my levels are normal, so a dopamine problem isn't the case for me...but I'm curious to know what you did.

    Honestly my primary focus is my sleep right now. In the past I have improved it with diet and supplements. And now that I found out I am MTHFR +/+ I am looking at the methylation protocol. Trying to understand it is overwhelming and I spend a lot of time reading and reading..and asking questions. I am planning to see a dr who practices functional medicine, primarily for my thyroid problem, but hoping I can get help for my whole system that will lead to better sleep. I am also going to see if he knows anything about this methylation problem because at this point I don't feel equipped to try it without a professional who can oversee it.

    I have heard of 23andme. I have to research it to see what it will tell me since I've done similar testing through my integrative doctor.
     
  10. Gondwanaland

    Gondwanaland Senior Member

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    When I first tested my vitamin D it was 12, and my husband's was 13. We started supplementing andI got mine in the 40's (good enough) and he is in the 20's. He has one homozigous VDR SNP, meaning his vitamin D receptors are "not as good" as mine, so I think he needs a bit more supplementation. We just want to be between 40 and 50.

    We have several thread about vitamin D here, and many people get insomnia and depression from supplementing it (me included). Some possible reasons explained in the links below.
    http://www.westonaprice.org/blogs/c...ople-pushing-their-vitamin-d-levels-too-high/
    http://drcarolyndean.com/2013/03/too-much-vitamin-d/
    It can get toxic very quickly since fat soluble vitamins can build up in liver and kidneys. Last year I took 10,000 IU every 2 weeks, and got a little toxic from the 5th dose and stopped (increased hair loss, brainfog, sleepiness).
    We don't test neurotransmitters here where I live, so we go based on symptoms and SNP interpretation. I need to avoid serotonin precursors (5-Htp, tryptophan) and he needs to avoid dopamine precursors and methyl donors (curcumin for instance).
    I have summaries and guides linke in my signature under "Freddd's protocol". It is a good start that I didn't have access to when I started studying this stuff one year ago, since they have been compiled in the past few months by other PR members who have better cognition.
    23andMe tests for hundreds of thousands of genetic SNPs for $99.00. Then you can run your data thru some websites to get specific reports from your data (mainly about liver pathways of methylation and drug metabolism) to see where your potential weak spots are. There is one report for free (Genetic Genie) and other paid ones.
    http://forums.phoenixrising.me/index.php?threads/free-tools-for-analysis.33462/
     
  11. danceintherain

    danceintherain

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    Thank you for your comments. I did not notice any specific symptoms since I started vitamin A and it has been a while, but I can try stopping it to see if there are any positive changes. I started with Vit D at only an 18 and then got to low 30's with 10,000iu supplements. I did not notice any side effects. I've had insomnia problems since 2008. worsening scenarios have been:
    1) Physical injury
    2) A therapy I tried called "homeopathic energy medicine"
    3) withdrawal when I tried to get off a medication
    4) preliminary neurofeedback treatment (I was unable to recover from that setback...I guess it is neurological and I just haven't come across anything to reverse whatever happened)
    5) this past Sept when I started getting up at 6am...I don't know why that caused me so many problems but maybe just a shock to the system that my body could not handle. I pretty much quit sleeping altogether and I have been unable to fully recover from that as well. I also made the mistake of trying a supplement given to me by one of my doctors (I believe it had melatonin, GABA, and 5-HTP in it). I was skeptical about 5-HTP and had a bad reaction to melatonin in the past. I should have had muscle testing done or just gone with my gut and not taken it. I was pretty desperate though since I was barely sleeping. After a few days I started to feel bad and the muscle spasms in my head got worse. 2 more days of it getting worse and I quit the supplement. I have not been the same since before I took it.

    All my successes with sleep have come from supplements and diet change. But Vit D never did anything either way. I wish vitamin A made me sleepy. It's possible being really hypothyroid has helped with my sleep but I continue to be more exhausted all the time and able to do less and less before getting worn out. I feel like I am just in a spiral right now and before September my status stayed the same. I didn't feel good but it stayed the same each day and I could accomplish daily tasks and go for walks. Now I just do less and less. Maybe it wasn't the melatonin supplement but I know it was after that when it seemed like things kept getting worse and worse. Even with the decreased sleep in Sept, I could still do cooking and walk the boardwalk, etc. I just know there was a reaction to that supp and it did not go away after I discontinued it. The original symptoms diminished slowly but I would go for a few days feeling okay then have a day or two feeling strange or in pain...and the cycle kept going. The thyroid meds complicate things and the pinched nerve does too...as well as the fact that I just got off a med that was helping with muscle spasms.i had to go off of it because I was becoming tachycardic (more likely from being hyperthyroid since that is a common problem with it) but the drug I used could possibly cause it so I got off. I had minimal withdrawal but who knows if it is contributing to or causing my significant increased exhaustion. Or increased pai. The exhaustion could also be due to the increase in thyroid meds (which just got reduced bc it made my TSH shoot up very fast). But like I said, it just feels like I keep getting worse all the time rather than holding steady, which is what normally happens after a setback. I get a new normal. Usually I recover somewhat and occasionally get all the way to pre-setback status, but I typically hold steady after that. I don't just continue to get worse and worse. So that part is really unsettling. That is not normal for me except for one instance in 2009 when I was put on anti-depressants for my chronic back pain. They said after trying to find a cause, and not being able to find one, that I was just depressed and that caused the pain (which was from continued chiropractor visits). But I reacted negatively to those drugs and everything went out of control then. That was bad. I spent a year (with time in the hospital, shock therapy and TMS) coming back from that, and then injured my back again, got sick from a tetanus shot and suddenly developed multiple food sensitivites. I spent another year clawing my way back from that (I was at my best I had been in quite a while with good sleep, a lot of energy-relatively speaking, no headaches, and reduced muscle spasms). and then tried the energy medicine which gave me a setback. I did not fully get back from it. Then I dealt with about 6 months of withdrawal recovery from a dumb error on my part. I finally got better from that when I decided to try the neurofeedback..and now you are up to speed. Sorry, I guess I didn't mean to give you all that, it just happened. I talk a lot. And apparently type a lot too. I'll spare you the details of all the 2006-2009 chiropractor problems and details that led up to the antidepressants. That's a story in and of itself.
    Again, thank you for your input. I appreciate it very much
     
    Last edited: Apr 13, 2015

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