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Wrong Diagnosis Site - Fredd's Protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Idie, Nov 1, 2011.

  1. drex13

    drex13 Senior Member

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    Hi Rydra,
    So you see the heartfixer guy ? How is that working out for you ? I was considering making an appointment, since he is on my insurance and only about 2 hrs or so away. I believe he is in Toledo, and I am in Columbus.

    Thanks,
    Drex
  2. rydra_wong

    rydra_wong Guest

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    It is working out very well. He is not god, he is a heart doctor. He keeps telling me he's a heart doctor, only a heart doctor. But I tell him right back that he's the smartest doctor I ever had and I pick him nonetheless. He provided me with a bottle of BH4 at $70 f or a 2 month supply (Kuvan costs hundreds of dollars per month). He proved to me that I have adrenal issues (although only due to stressors - which include allergy season, flea product exposure, and - holycrap! - not taking my supplements. (Ok so what that means is I always have adrenal issues but when I take my supplements I can banish them). He is the one who mapped my genes...I had it done over 2 years ago and I didnt know anyplace else to have it done...he was a forerunner. He also handles my bioidentical hormone replacement - and light years better than locally as it is done via a shot twice a year - no big deal. He always offers the most cutting edge diagnostics and solutions. Like a special allergy test in Germany which tells you what peptides to take to cancel your allergies (that one didnt work out because the peptides are way WAY too expensive! Try $360/month!). If the price comes down over time I am interested though. He chelates. He checks for pesticides (one test he has me running now). He tests neurotransmitters and gives you supplements for that, but if the supplements should not agree with you (they made me puke), he understand the gist of themm so we can come up with a similar strategy leaving off a few ingredients (so like there is a dopamine-rising supplement, but it contains phenylalamine AND tyrosine...rather than make me take that, he said I could take just tyrosine separetely - although he did assure me I dont have PKU on the basis of my amino acid test). He has a decent grasp on all that stuff. But he is an EXPERT at being a heart doctor. I just found out on my last visit that he also does weight loss. I was surprised to find he was open until 8pm and they said it was because it was weight loss patient day...they inject some pregnancy hormone into people which causes the body to mobilize calories for the baby (and in the case of no baby, to expell the calories). I have low blood suagr myself so I am afraid of anything that might lower my blood sugar further. It's pretty scarey shaking from low blood sugar.

    But the fact remains that many of my genetic defects lead to severe heart trouble and my father is on high dosesof 3 bp meds and also many heart drugs and has a pacemaker as well as has to inject insulin (and this is genetic, not due to diet...any normal diet would have had the same result for him...I am not saying an abnormal diet like vegetarianism would not have saved him, but only that people who put their nose up in the air and say it's someone's fault for not exercising and for eating too much is way off the mark in genetic cases). I am extremely glad to have a real heart doctor on my case to hopefully avoid me being in the same shape as my Dad. And if I should not manage to stear clear, he can work with both drugs and vitamins so I can make the best of my genes.

    He might not take you as a client though -- he only takes heart patients. His receptionist told me that he only takes heart patients so I told her that I would BE one of his heart patients if I could not get my blood pressure under control. So he took me - figuring I'm one of his patients in the early stages.

    You do not have to be a patient of his to get your genes matched and get his writeups, nor to ask questions about them. But to go further than that, you do.

    Rydra
  3. rydra_wong

    rydra_wong Guest

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    Idie, I wanted to report that tyrosine seems to improve neural perfusion for me (a surprise since its not a methylation supplement). BH4 seems to raise insulin sensitivity - anyway SOMETHING is causing low blood sugar for me, and I think that's it. I am not positive yet. Genetically and symptom-wise I need BH4, but it may be like y'all for the methylation supplements - I may need to start slow as my body has adjusted to low BH4 levels...there is a tie between diabetes and low BH4...so I may need to, for example, take it is an extremely low dose for a month or so until my insulin levels come down a little ,etc -or something (I am just thinking aloud here).

    Tyrosine should not have an effect on perfusion. That it does says to me that I have either and infection or an inflammation (cytokines) going on because I believe that dopamine zaps some of that stuff.

    I am freaking out a bit over my allergy test - the lab told me I have an auto-immune problem against the HPA (adrenal) axis. auto-immune means infection/inflammation(cytokines) so I am extremely concerned about auto-immuneright now. For instance, diabetes is said to be auto-immune.

    So far nothing really helping internal trembling, but I have observed it is mainly diurnal (evening). Is yours diurnal?

    Rydra
  4. drex13

    drex13 Senior Member

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    Columbus, Ohio
    Rydra,

    Thanks for the information. It would be nice to have someone who knows more than I do, look at my methylation genes and give some guidance on the proper supplementation. I may pursue that further, although cost may be a factor, as I think the cost for the test and his recommendations are around $1150.
  5. rydra_wong

    rydra_wong Guest

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    Drex13 - is that true? I thought the price of everything went down? I spent $1200 two years ago, but I thought the lab was cheaper now. I used my tax refund to pay for it. I have no regrets even though it was only the beginning of solving my issues (my body does not behave exactly as expected for my genes...some genes trump others, some diet/supplement/pollutants etc trump genes, some hormones trump genes, etc.

    Other doctors to consider are Dr. Neubrander - someone on the other conference talked him into taking on an adult and Dr. Neubrander was doing a good job for him last we heard. It was not cheap as he had to run lots of tests to figure out he had low magnesium (and magnesium supplementation wasn't rising his magnesium levels)...(I told him he was eating too high protein a diet - he prob. has BH4 deficiency and ammonia issues).

    Also Angela (Greenshots) seems to have a good doctor who will work with you via skype and she advises on the Yasko genes too. So you could get the $495 lab and work with her then, maybe.

    Rydra
  6. dannybex

    dannybex Senior Member

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    SpectraCell test

    Hi Rydra,

    I was wondering if your doc has ever considered running a Spectracell Micronutrient panel. It is supposedly a lot more accurate than the standard RBC or plasma lab results, as it measures nutrients in white blood cells, so the test represents the actual functional intracellular status of vitamins, minerals, etc., in one's tissues over the last 4-6 month period. It also includes something they call an Immunidex score which they say helps figure out how dysfunctional (or functional) one's immune system is.

    Sorry you're having these tremors. There has to be some explanation, and perhaps -- perhaps -- this test might help?

    Best,

    Dan
  7. rydra_wong

    rydra_wong Guest

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    Thanks, Dan. But I am booked up for labs at the moment - I am due for my spring hormone labs etc. My doctor ordered a pesticide lab too and I just ran an iron/ferritin and TSH/T3 lab.

    I think the shakes are on the outs as of starting the tyrosine/BH4 supplementation. I cannot be sure yet because shakes are mostly diurnal. I dont often have them of course or I would have mentioned it a long time ago...but I get stuck in different "states" (well there is the low adrenal & low blood pressure & low blood sugar state, the normal adrenal & high blood pressure state, and there is the shaking state and there is the ataxia state (which may be separate or the same - I can't say...it seems like I always had the shaking state but only perceived it as ataxia since I was 40), etc.

    What happened is that I stopped all methylation supplements, all herbs, my multi, all kinds of stuff except for my hormones, D, C, and E and a small amount of Ca/Mg. And I found that was not enough to keep my blood pressure down, and my head got crabbed up (feels like poor circulation in half my brain, which I associate with thyroid problem) and I went anemic (which in the past has been due to low ferritin). I also felt like my head was going to explode from a ticklish sort of pain - olive leaf extract stopped that. I added back my methylation parameters and for the first time felt mild startup symptoms. However I could not totally recover so far...I thought my symptoms were from low BH4 and / or oxidative stress. Tyrosine (which bypasses 1 BH4) made my brain feel like I had applied Vicks Vaporub, which I associate with increased perfusion. BH4 lowered my blood sugar - yesterday I took 50mg and I had 3 low blood sugar attacks. Today I took 25mg and so far no low blood sugar (knock on wood). So... I have been finding I cant take a break from my supplements or I lose ground and have trouble recovering it.

    I -- know of no particular reason to be concerned what is inside my cells - I trust the RBC tests as far as I know. What I *am* converned about is behind the BBB (blood brain barrier). I can get a perfect homocysteine in the rest of my body but no way to know if it is perfect or at all close in my head. It concerns me that thyroid problems should cause neural inflammation - that to me says oxidation is going on in my brain. I think I have a pretty good handle on what is going on in my body but 11/13 of my neurotransmitters are seriously out of whack and I have unilateral circulation problems in my head and think maybe the shaking issues are due to low dopamine...so I really have no handle yet on what is going on in my brain.

    Rydra
  8. rydra_wong

    rydra_wong Guest

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    Thanks, Dan. But I hve so many labs in the queue already...

    I think the shakes are on the outs as of starting the tyrosine/BH4 supplementation.

    I stopped most supplements (due to nausea from 42 pills/day) and I found I cannot manage without my supplements anymore. I added back my methylation supplements and for the first time felt mild startup symptoms. However I could not totally recover...I think some things go haywire w/o my supplements that have to be banished before my old supplements work for me again (the limbo bar gets lowered by things like oxidative stress and low BH4...they now say that the BH2/BH4 ratio governs blood pressure for instance).

    Tyrosine (which bypasses 1 BH4) made my brain feel like I had applied Vicks Vaporub, which I associate with perfusion. BH4 lowered my blood sugar - yesterday I took 50mg and I had 3 low blood sugar attacks. Today I took 25mg and so far no low blood sugar (knock on wood).

    So far, Idie, BH4 lowered my blood sugar for the 1st 2 days (in fact causing EXTRA shaking) but on the 3rd day it seems that it has tentatively banished the shakes. But it could be the tyrosine all by itself that did that - dunno.

    It's only been a day though...I cant say for sure yet if this works.

    Rydra
  9. drex13

    drex13 Senior Member

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    I don't know what the price is for sure. I got that from a methylation page from the heartfixer site, where he mentions cost. It could be a few years old though. I know you can order just the genetic testing and get results plus interpretation/recommendations for $450 or $495.
  10. rydra_wong

    rydra_wong Guest

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    Since I have been exploring why it is I keep getting low ferritin, I have found this of interest. I have never in my life had ferritin above 50 and so never NOT been low iron, so I guess the MCV value is meaningless in such cases:

    http://www.lef.org/abstracts/codex/i...stracts_02.htm
    Unanticipated favorable effects of correcting iron deficiency in chronic hemodialysis patients.
    Polak VE, Lorch JA, Means RT Jr.
    BACKGROUND: Correction of anemia in hemodialysis patients is seldom completely attained, and the response of parameters other than hemoglobin concentration to anemia correction has not been evaluated in detail. METHODS: Laboratory parameters that suggest iron deficiency occurred in 1015% of 206 recombinant human erythropoietin (rhEPO)treated patients. Oral iron was given for 9 months and intravenous iron thereafter on a patientspecific basis when iron deficiency was evident. Eightyseven hemodialysis patients with data for 12 months were followed for another 12 months. A computerized information system enabled data management and analysis. RESULTS: With oral iron, serum ferritin decreased (P < 0.001), indicating further iron depletion. With intravenous iron, hemoglobin increased, evidence of iron deficiency decreased, and less rhEPO was needed. Striking macrocytosis appeared. Serum albumin and serum creatinine/kg body weight (an index of muscle mass) increased, while blood pressure decreased. Data were reanalyzed in four mean corpuscular volume (MCV) quartiles and two ferritin subsets at study onset. Iron deficient erythropoiesis (low MCV, mean corpuscular hemoglobin [MCH], and transferrin saturation) was striking in quartile 1; low ferritin was prevalent in all quartiles. With intravenous iron, hemoglobin increased only in quartile 1, the quartile with the greatest decrease (52%) in rhEPO dose. MCV increased in all quartiles (P < 0.001). Serum albumin increased in all MCV quartiles and both ferritin subsets, but significant creatinine/kg increase and blood pressure decrease occurred only in the lowferritin subset. CONCLUSIONS: Macrocytosis occurred with intravenous iron replacement. The universal MCV increase suggests unrecognized, inadequately treated, folic acid deficiency unmasked by an adequate iron supply. There was also improved well being. Effects were most clearly evident in patients with deficient iron stores. PMID 11288758
  11. rydra_wong

    rydra_wong Guest

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    Idie, I think whoever said it above is right - that shaking is due to low cortisol and low thyroid (such as can be caused by low ferritin) at least in my case. I have several things going on so it's a little hard pinning down.

    Well, here are some of the things I find in me:
    (1) I am always low ferritin, but not low hemoglobin. Low ferritin causes low dopamine, low cortisone, low thyroid hormone, and low P450 enzymes(!) [this is why I am super sensitive to every drug on the face of the earth -- I cannot excrete them verywell!], among other things. When I add iron pills, it raises my ferritin only so far (never above 50) and then the iron goes to serum iron (which is dangerous - I think it is oxidative or something). So I looked into what can cause that that and it seems insufficient RBP (retinol binding protein) can cause that. (Labcorp does not offer such a test so I cant be sure at present. Quest Diagnostics does. ) So it seems that means I am either low in Vitamin A or protein or (most likely) both. I do know I am low in A as I have keratinus pilaris (not bad, but I do have it and I believe it is a genetic deficiency in Vitamin A,...oh for heck's sake - I cannot finish this - those STUPID chat boxes at the bottom of the screen took over my screen and I cant get rid of them. Why the heck they have to be at the bottom of every screen-!

    Rydra
  12. rydra_wong

    rydra_wong Guest

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    I am back - continuing above...

    It appears there are 3 things that apply to me that can cause shaking...maybe one or more of these applies to you, Idie:
    (1) Low RBP (retinol binding protein) causes low blood sugar. You can look up RBP -- it is very interesting...apparently high RBP causes insulin resistance and obesity. I may genetically be unable to convert beta carotene to Vitamin A. (idk but I think milk has Vitamin A in it and I think that's why I crave milk...in fact when my family went to lowfat milk (less A) I lost the enamel along the tops of my teeth, which I just read is a sign of Vitamin A deficiency). RBP also contains protein (tyrptophan) and low retinol is compounded significantly by even slightly low protein (due to BH4 deficiency I eat low protein...well I cant tolerate high protein anyway).
    So with low RBP the shaking really is low blood sugar, but a low blood sugar that is hard to raise.

    or

    (2) Low BH4 leads to low dopamine and low dopamine causes non-smooth movement. It is a kind of "shaking" that only happens when you move. When you do not move, you do not shake. Potentially tyrosine and BH4 supplements or even just tyrosine can help...potentially copper (used by one of the enzymes) can help. But there are other things and idk what they are. I think maybe zinc is also one of the things, but you'd have to look it up. For me tyrosine is a help all by itself. idk why...I know I eat low protein but the WHO says you need only 10 g/day and I eat way more than that so not sure. I do know that there are "protein priority" "channels" to get into the BBB - and it is possible that taking tyrosine all by itself with water just gets it into the brain better than eating cheese or something. Anyway I have tyrosine and BH4. I am thinking of just reserving the BH4 for when I have kidney issues. (BH4 deficiency affects kidneys).

    or
    (3) I know the least about this but I do know shaking can be caused by panic which is somehow related to adrenals. DHEA (adrenal hormone) takes care of that for me. DHEA lowers elevated cortisol. I do not think it lowers it if it is already low as your body can make cortisol out of DHEA if it wants to. So it might be more accurate to say that DHEA normalizes cortisol.

    or (4) maybe:
    I think that other poster is right about some low cortisol and low thyroid connection. I just haven't investigated it yet.

    For me the main issue has been low ferritin linked to low RBP, causing increased insulin sensitivity and thus low blood sugar. So...I guess it's low A+low tryptophan+low iron. The low A being genetic.
  13. rydra_wong

    rydra_wong Guest

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    It sounds like there is a good possibility that anyone with elevated homocysteine may have problems retaining Vitamin A as homocysteine may destroy it. At least there is evidence of such a problem with the CBS gene and it is theorized to be due to homocysteine. I posted this under the CBS topic but it may be of general interest:

    I have not proven it but I believe I have a problem with Vitamin A of some sort. I just ran across something of interest in this regard. It appears that CBS (or possibly anything that raises homocysteine) can destroy Vitamin A:

    Phyllis Acosta in "Nutrition Management of patients with inherited metabolic disorders" says that CBS deficiency may impair Vitamin A status as Vitamin A was found low even after retinol administration. She theorizes homocysteine may oxidise Vitamin A. There is more discussion that I cannot get as the books costs $246. (She begins to discuss elevated plasma copper -- something which indicates inflammation, not high copper stores...).

    She later discussed protein requirements in PKU and PEM...too bad I can't read them. I found elsewhere that in malabsorption the protein requirement goes up (to make up for what is undigested) - 30% or more depending on the degree of malabsorption.

    For me, I keep getting low ferritin (well a few times a year) and low ferritin causes hypothyroid (for me - but my ferritin goes below 20, maybe lower as it makes me gasp for air). This last time was because I stopped my multi which has iron in it...and yet I am over 50 and should not need to supplement iron, and I eat about as much protein as my friends who do not have these issues.

    I find ferritin is bound by RBP (retinol binding protein), and I cannot reaise ferritin sufficiently (supposed to be 70, but at least above 50, mine has never been above 47, and anything above 40 causes raised serum Fe (bad). I have several signs of low Vitamin A -- keratinus pilaris (which a college textbook on line said was a Vitamin A deficiency) and a loss of enamel along the tops of my teeth which occurred at 18 when my mother switched to low fat milk (maybe 1/2percent...I am not sure if the lowfat milk was supplemented with A at that time or if fat is required to absorb the A). So I am thinking I may have low RBP due to low A - not sure if due to inability to turn beta-carotene into A or due to CBS gene now. RBP is made of A, Zn, and protein...dunno what else. So I was investigating and have this also to report:

    Low ferritin causes hypothyroid. If one's thyroid TSH >=2.0 one is subclinically hypothyroid (www.lef.org) and it causes raised cholesterol land low HCL production, and the low HCL production alone causes a need for more protein per day or else this causes an endless loop of low RBP, low ferritin, and thus low thyroid and low HCL.

    But my friends just dont fall into this hole and so I think there is a Vitamin A component that is going on in my case....maybe due to CBS. Just thought I'd alert others. What precipitated this for me was that I stopped taking methylation supplements -- I did not mean to stop forever but I was so tired of being nausaous taking 42 pills...the only things I kept taking were my hormones, D,E, and C. Made me sick - of course. But it is so frustrating that no one else has to be addicted to many, many expensive and nauseating supplements as I seem to be.

    Well anyway, be aware you'all may be finding retinol deficiencies.

    http://books.google.com/books?hl=en&...etinol&f=false

    It also makes me wonder if this can happen (oxidation/destruction of retinol) due to TRANSIENT rises in homocysteine such as after meals (making choline and betaine important to protecting retinol?).
  14. rydra_wong

    rydra_wong Guest

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    Idie, I brought up my ferritin and raised my TSH so that I no longer have unilateral brain swelling (this is definitely tied to thyroid out of range for me) but my thyroid is not yet back to normal (still have tinnitis). However I am recovered enough to not have the internal trembling I had mentioned above. idk for sure what caused it - for really I had many things going on at once. Could have been any or up to 3 of the 4 things I mentioned (or something else I havent thought of). I did not measure my bp (sorry, but it was not an issue or I would have) and that for me would distinguish between low and normal cortisol (low cortisol -> low bp despite salt consumption).

    I think if you get a test of ferritin and TSH it might give you a clue. If TSH>1.9 or ferritin <70 (well much less) then there could be something about this causing trembling for you too. Fixed by extra protein (say 30% more) due to low HCL (or by taking HCL) and iron supplementation, and getting homocysteine back under control (that's all I did -- but one could conceivably do better (faster) supplementing A and/or zinc). idk know about A - they say now one should never supplement more than 5000 units/day. If one cant absorb it, I just dont care to experiment on myself with more -- I prefer to just wait longer to bring the levels up. But there may be a need to super-supplement in a case of malabsorption.

    Rydra
  15. rydra_wong

    rydra_wong Guest

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    Idie, here is more news on shaking. (I really dont think cortisol is tied in for me, my bp is not low). I started dieting and the shaking came back. I read that dieting causes low thyroid (which I had just fought off) and that I don't need. I bought these 2 products, popped 3 pills (2 of one, 1 of the other) and in like 2 minutes, shaking gone:

    http://www.iherb.com/Thorne-Research-Coleus-Forskohlii-60-Veggie-Caps/18578?at=0
    http://www.iherb.com/Absolute-Nutrition-Thyroid-T-3-Original-Formula-180-Capsules/27664?at=0

    The first one helps thyroid hormone to get into our cells, the second supports the thyroid.

    I hope this help you!

    Rydra

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