Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Yes, it is basically the same. I was dx'd w/myopathy and joined a Mito support group several years ago even though my dx was CFIDS+++ before I was dx'd with Lyme (at al) 2-3 years ago (sick since 1986). In persons with mitochondrial disorders they are usually born with a genetic defect in the mitochondria, but the mitochondria can also be damaged and then the symptoms overlap. The new wave of research is very good for both groups! hth Kendra On 1/29/09, randydean3 <randydean3@...> wrote: > I am curious what is the difference between mitochondrial myopathy and > the mitochondrial dysfunction they found in CFS patients?? I read a > recent article about the ballplayer with mitochondrial myopathy, and > sounds like the same symptoms. Thanks, Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 What is the good news research re: mito. dysfunction? I want to be fixed. joyce jamkaye@... > In persons with mitochondrial disorders they are usually born with a > genetic defect in the mitochondria, but the mitochondria can also be > damaged and then the symptoms overlap. The new wave of research is > very good for both groups! > > hth > Kendra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Does anyone know anything about Dr. Holtorf and the Holtorf Medical Group. Are they good? Thanks Walter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I personally had a negative experience with Holtorf Medical Group. First, much of their focus is on hormone supplementation to postpone the effects of aging, which many medical practitioners would consider at least fringe medicine and potentially reckless. This gives a bit of indication of their general approach and concerned me that they may be particularly profit driven rather than truly trying to help CFS patients. While I do believe in the idea that there are problems with infection, mitochondrial function, and HPA axis, I don't believe that the doctor I saw did a thoughtful evaluation of my eperience and condition (btw it was not dr. Holtorf). Instead, it seemed cursory and formulaic. I was thoroughly unimpressed with the questions he asked and the simplistic way that he described the mechanisms behind CFS. I honestly felt like he had read a two-page pamphlet (or the same info I had read on the website) rather than studied and thought carefully about CFS. I was honestly very close to writing a letter and asking for my money back. I can't say this is the same experience that you would have, but I would not recommend anyone to go there. > > Does anyone know anything about Dr. Holtorf and the Holtorf Medical Group. Are they good? Thanks > Walter > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 How were you diagnosed with a myopathy, and did they identify a specific one...? > > > I am curious what is the difference between mitochondrial myopathy and > > the mitochondrial dysfunction they found in CFS patients?? I read a > > recent article about the ballplayer with mitochondrial myopathy, and > > sounds like the same symptoms. Thanks, Randy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Be very careful with Holtorf. I went to him and I would not go back. A number of Dr. Chia's patients have used him and after seeing Chia they stopped going to him. Beforwarned. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Thanks, , for your input on Holtorf ..... his website is so encouraging, full of information and hope directed at us CFSers but it felt too good to be true and you are the third person from LA who has warned me about him. thanks. My appt with Chia is march 16 and i am very excited and hopeful. Walter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Dear Dr The new ATP-testing article might sound fantastic at first sight but when you consult experts (like I did - scientist of the mitochondria-lab at the local uni), they're not so excited... They will need independent labs to confirm the reproducability and more studies in bigger populations... From: thefatigueclinic <thefatigueclinic@...> Subject: Mitochondrial dysfunction Date: Monday, May 4, 2009, 4:32 AM Hi everyone Ive just put a paper in the file section on mitochondrial dysfunction. The biochemist Dr McClaren is doing fantastic work and finding out new things. It seems one of the most important is that in some people , especially the sickest,there is a calcium-protein complex jamming up the mitochondria. It sometimes is removed by magnesium but sometimes not. This is the greatest challenge and hes looking at ideas on how to do this at this time.I think its the major reason for non responders to any treatment Best wishes Dr Andy wright Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Dr. , Have you tried IV glutathione or glutathione precursors? What about Rich V.'s treatment ideas? Next question: Are you seeing this block in patients with borrelia and babesia, mycoplasma, ehrlichia, bartonella? If so, do you treat the infections/parasites first then the methylation cycle block, or do you find that the methylation cycle block clears on its own when the infections and parasites are effectively treated? Do you consider that tick borne infections are some percentage of cfs cases, and, if so, what percent? a Carnes > > Hi everyone > Ive just put a paper in the file section on mitochondrial dysfunction. The biochemist Dr McClaren is doing fantastic work and finding out new things. > It seems one of the most important is that in some people , especially the sickest,there is a calcium-protein complex jamming up the mitochondria. > It sometimes is removed by magnesium but sometimes not. This is the greatest challenge and hes looking at ideas on how to do this at this time.I think its the major reason for non responders to any treatment > > Best wishes > Dr Andy wright > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi andy This is very interesting. I read the paper by McLaren & Myhill, but I didn't see anything on this idea of calcium protein jamming up the mitochondria. Can I ask where you got this from? Thanks L. > > Hi everyone > Ive just put a paper in the file section on mitochondrial dysfunction. The biochemist Dr McClaren is doing fantastic work and finding out new things. > It seems one of the most important is that in some people , especially the sickest,there is a calcium-protein complex jamming up the mitochondria. > It sometimes is removed by magnesium but sometimes not. This is the greatest challenge and hes looking at ideas on how to do this at this time.I think its the major reason for non responders to any treatment > > Best wishes > Dr Andy wright > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Does the A-C protocol work with children that have Mitochondrial Dysfunction? I am just curious. We are still testing for stuff. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 > Does the A-C protocol work with children that have Mitochondrial Dysfunction? My son had mitochondrial dysfunction. I chelated him, then I gave him mito cocktail. This worked for him. http://www.danasview.net/mar05.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Andy has written that mitochondrial dysfunction is a red herring diagnosis for toxicity. Mercury causes mitochondrial problems. My youngest (now 3) had many signs of mitochondrial dysfunction since he was 1 including a bad vaccine reaction at 8 months. But I didn't do any spinal fluid testing. As we chelate, he has improved in all areas. We did stop vaccinating him and do give carnitine fumarate and CoQ-10 daily in addition to the usual supplements. Jo > > Does the A-C protocol work with children that have Mitochondrial Dysfunction? I am just curious. We are still testing for stuff. > Martha > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Yes. Instead of doing the testing (which looks as if it can be very invasive and testing), research the symptoms. You will find that a large amount of children on the spectrum fall within the category. I haven't found a mainstream treatment for MD outside of using the ingredients in a mit-cocktail that is discussed on this list.  The more we chelate, the symptoms go away. i.e. brain fog and low muscle tone. HTH, S. > >From: healme42 <4usyoungs@...> > >Sent: Mon, October 18, 2010 12:49:38 AM >Subject: [ ] Mitochondrial Dysfunction > > >Does the A-C protocol work with children that have Mitochondrial Dysfunction? I >am just curious. We are still testing for stuff. >Martha > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Jo, Does he write about this in his book or on the discussion board? When he argued with Dr. Boyd, the subject of ALA doing something in the mitochondria was brought up numerous times (and boy am I confused, knowing nothing about any of this), but it just brought up the mitochondrial dysfunction in my mind. Do you use ALA or DMSA? Thank you so much and congratulations on your son's improvement! That is wonderful. Martha > > > > Does the A-C protocol work with children that have Mitochondrial Dysfunction? I am just curious. We are still testing for stuff. > > Martha > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 The more I learn (and I stay up very late every night!) the more I realize I don't know. My son has brain fog and low muscle tone. What is in the mito-cocktail and do you need a dr's recommendation? Martha > > Yes. > Instead of doing the testing (which looks as if it can be very invasive and > testing), research the symptoms. You will find that a large amount > of children on the spectrum fall within the category. I haven't found a > mainstream treatment for MD outside of using the ingredients in a mit-cocktail > that is discussed on this list.  > > The more we chelate, the symptoms go away. i.e. brain fog and low muscle tone. > > HTH, S. > > > > > >From: healme42 <4usyoungs@...> > > > >Sent: Mon, October 18, 2010 12:49:38 AM > >Subject: [ ] Mitochondrial Dysfunction > > > > > >Does the A-C protocol work with children that have Mitochondrial Dysfunction? I > >am just curious. We are still testing for stuff. > >Martha > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 You can google MD symptoms and form a list of symptoms. As long as you are chelating, you are heading in the right direction. http://www.answers.com/topic/mitochondrial-disorders S. [ ] Re: Mitochondrial Dysfunction > > > > < %40> > > Date: Monday, October 18, 2010, 9:48 AM > > > > > > > > > > Andy has written that mitochondrial dysfunction is a red herring diagnosis > > for toxicity. Mercury causes mitochondrial problems. > > > > My youngest (now 3) had many signs of mitochondrial dysfunction since he > > was 1 including a bad vaccine reaction at 8 months. But I didn't do any > > spinal fluid testing. As we chelate, he has improved in all areas. We did > > stop vaccinating him and do give carnitine fumarate and CoQ-10 daily in > > addition to the usual supplements. > > > > Jo > > > > > > > > > > Does the A-C protocol work with children that have Mitochondrial > > Dysfunction? I am just curious. We are still testing for stuff. > > > Martha > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Thanks . Z On Mon, Oct 18, 2010 at 4:32 PM, Strozier <imyconsulting@...>wrote: > > > You can google MD symptoms and form a list of symptoms. As long as you are > > chelating, you are heading in the right direction. > http://www.answers.com/topic/mitochondrial-disorders > S. > > [ ] Re: Mitochondrial Dysfunction > > > > > > < %40>< % > 40> > > > > Date: Monday, October 18, 2010, 9:48 AM > > > > > > > > > > > > > > > Andy has written that mitochondrial dysfunction is a red herring > diagnosis > > > for toxicity. Mercury causes mitochondrial problems. > > > > > > My youngest (now 3) had many signs of mitochondrial dysfunction since > he > > > was 1 including a bad vaccine reaction at 8 months. But I didn't do any > > > spinal fluid testing. As we chelate, he has improved in all areas. We > did > > > stop vaccinating him and do give carnitine fumarate and CoQ-10 daily in > > > addition to the usual supplements. > > > > > > Jo > > > > > > > > > > > > > > Does the A-C protocol work with children that have Mitochondrial > > > Dysfunction? I am just curious. We are still testing for stuff. > > > > Martha > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 I am not aware of a balancing amino acid relationship like there is with lysine and arginine. Carnitine comes from the diet (mainly meats) or is synthesized in the body from lysine and methionine and that process requires vit C, B6, iron and niacin. Carnitine deficiency can sometimes be a result of vit C deficiency. Sorry I can't answer more of your question! Jo > > > From: detoxhealing <detoxhealing@...> > Subject: [ ] Re: Mitochondrial Dysfunction > > Date: Tuesday, October 19, 2010, 11:38 AM > > > Â > > > > > > > > > Hi Jo, > > > > > Can I ask you why you chose carnitine fumarate (this form of carnitin), > > > and > > > > > what tests did you do for your son's mito condition? > > > > > > > > > > Thanks in advance! > > We've used acetyl l-carnitine, l-carnitine and carnitine fumarate. He tolerated them all, but I felt his muscle tone improved more with fumarate. I also wanted one with less fillers for him so chose Pure Encapsulations. Here's what their site says about them: > > l-Carnitine Fumarate: > l-Carnitine fumarate promotes healthy fat metabolism, oxygenation of the heart muscle, and enhances high intensity training much like l-carnitine-l-tartrate. However, unlike most forms of carnitine, l-carnitine fumarate provides dual support for energy production and cardiovascular function (7) in addition to providing a stable form of carnitine. Fumarate is a key compound in the Krebs cycle, which is the major energy-producing pathway preceding the electron transport chain. This intimate connection with energy metabolism makes l-carnitine fumarate an excellent supplement for enhanced muscle and fat metabolism support. > > Acetyl-l-Carnitine: > This acetylated form of l-carnitine is supportive of healthy mental and cognitive function (8). The acetyl group is needed for acetylcholine synthesis, a key neurotransmitter for healthy cognitive function, memory, and attention (8-11). Several clinical trials have reported improved scoring on memory, attention, verbal, and logic examinations in those volunteers receiving acetyl-1-carnitine (9-11). Additionally, both the acetyl group and l-carnitine help promote the generation of energy. The acetyl group can break off and form acetyl CoA, important for most metabolic pathways in the body, mitochondrial function, and cell membrane stability (8). Furthermore, investigators found the supplement to be well tolerated (9-11). > > Personally I use Acetyl l-Carnitine when I take EFAs. It really helps me absorb them better. > > Jo > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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