Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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Suprise of the Reno Conference- a key to pain and fatigue in ME/CFS?

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 1, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Man I'm willing to give it a try! Just let me know what I need to do or tell you and I'll do it. We'll see what happens. :D

    I reacted poorly to two try's of preservative free b12 injections; one from Dr. Cheney and the other from Dr. Holtorf. I felt disoriented, had a strange taste in my mouth, felt weak, etc. Both elicited the same reaction. That's my only experience with B12.
     
  2. Freddd

    Freddd Senior Member

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    Hi Cort,

    First, is it safe to assume that you are already taking all the basics like A,D,E,C,calcium, magnesium, b-complex, zinc, omega3, etc? If not you need to.

    There are a few specific suggestions in this recipe. The Jarrow B-Right is preferred because it has multiple coenzyme b vitamins like p-5-p and pantethine and a low dose of methylb12 and NO cyanocobalamin. It is a balanced moderate dose all in all and suitable to take twice a day, which does make a difference due to serum halflife of some components. It also has microencapsulated choline so it doesn't make b-burps or irritate the stomach. Also, vitamin D totaling 3000-5000 units is preferred. It often comes in a mixture with A, and/or calcium or alone. Fish oil A&D appears more effective in capsules or Cod Liver oil is just fine as long as the D is additionally supplemented. My personal preferrences are for a high gamma E complex though I can't prove better effect my gut feeeling is that it is superior to d-alpha only. The NOW Gamma E complex is excellent and I'm sure there are others equally well suited. A calcium and magnesium are both required, and in a mix with other trace minerals is a good choice. I just get the Costco house brand. While those have some zinc usually, it is rarely enough. Zinc needs to be filled out to 50-75mg or so, but not significantly more. Vitamin C with bioflavinoids minimum 4000 mg or so by personal preference. It is a good idea to have potassium on hand at least because with the rapid healing that is sometimes induced so is hypokalemia as potassium can be rapidly taken too low. Check you latest CBC. Midrange like 4.5 is good, if below 4.2 or so start a supplement. don't wait for trouble. An omega3 oil is essential. Various people have experimented with different ratios of components and sources and what each person needs may vary. I just take the house brand and it seems to work just fine. It is essential for nerve repair. Farm raised fish feed on grains are not reliable sources for omega3. Then comes the heart of the essentials, Methylfolate (Metafolin) 800mcg. Solgar is a good choice at half the price of it's competition last time I checked. There are two 5 star methylb12 sublinguals, Enzymatic Therapy 1mg and Jarrow 1mg and 5mg. As most of the preceived effect is in the first 100-250mcg, the 5mg isn't perceived any more intensely than the 1mg. Healing is dose proportionate though not linearly so. Then there is the 5 star Country Life Dibencozide (adenosylb12). Both active b12s are essential. Later fine tuning can be done to adjust the ratio for best effect for yourself. I would suggest starting the adenosylb12 a couple of days ahead of the methylb12 to separate startup reactions. Almost everybody has startup reactions, some very strong. The farther down somebody is the more intense the startup reaction tends to be. If startup intensity concerns you read the page on titration. Also, if methyfolate is the first methylator started, it too will have significnt startup effect, otherwise it likely won't.

    There will most likely be an intial burst of startup effects. Read the page on them. There will be intensification of everything, rapidly shifting symptoms, all sorts of things. Then it will quite down a bit as things change more slowly. However, it is impossible for these things to heal without being perceived. Generally any reaction at all is a good reaction. If there is no reaction at all, it is often in people who won't be helped by these things or not helped much. Generally the more extreme and widespread the symptoms the more extreme and widespread the reactions, if everything is present needed for healing. Things that react do so becasue they were short of b12 or other factors. Generally active b12 or methylfolate are the main limiting factors. Secondary shortages can start as soon as healing begins putting demand upon resources. Strange tastes happen for all sorts of reasons, not the least of which is sensory neurolgy waking up and damaged epithelium and awareness of infections. Weakness might be another way to say "convalescent". When these reactions are from one or both active b12s they should be considered favorable reactions. Reactions can start 5 minutes after a sublingual enters the mouth. Read the section on Titrating. Use small pieces to limit dose if desired. As unbound active b12s are eliminated by kidneys quickly one can take small pieces all day without too much intensity. Startup reaction happens until equilibrium is reached. Then the reactions are the healing changes themsleves. Ask about anything questionable. Don't rush to interpretation.

    If you are taking glutathione or precursors, discontinue them to give the active b12s a chance to work. By all means ask questions, describe what is going on. I'll be around.
     
  3. Freddd

    Freddd Senior Member

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    Hi Cort,

    A couple of other things. If the injections were cyanocobalamin then thery might be anything from feeling the methylators being further depleted to the unhitched cyanide joining up with hemoglobin reducing oxygen levels. If it is hydroxycobalamin, I'm not familiar enough with it's startup symptoms to tell you. It could be either favorable or unfavorable becasue of the nature of hydroxycobalamin and your own sensitivities. The active b12s are very consistant, predictable and reliable when dealing with the specified brands.

    If you can see your way clear to doing so, write down day by day the effects and changes. These things are all clues about what is going on and which areas may need additional help. This is one of the things that irritates me with the present system as the docs are taught. For years I was told, ignore all those things, they are meaningless. I have since learned that they are all clues and quite meaningful in a suitable context. Some of the things will become "pivot point" symptoms that can indicate quickly whether the new supplement you have just added is helping or not. These can change rapidly and convey much information. Things never happen twice exactly the same way so sometimes that itself can track progress. Good luck.
     
  4. Dolphin

    Dolphin Senior Member

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    I was a bit lazy in one of my messages. Here are three findings of problems with muscles in the condition.

    http://www.bmj.com/cgi/eletters/322/7283/387

    CHARLES B SHEPHERD
    Medical Director
    ME Association, 4 Corringham Road, Stanford-le-Hope, Essex SS17 OAH

    Finally, the authors make use of highly selective references to support their hypothesis that fatigue in CFS is due to deconditioning and inactivity. Demonstration of abnormal increases in plasma lactate after exercise (4) and spectroscopic studies of forearm muscles (which are not subject to deconditioning) showing abnormal muscle energy metabolism (5) are not consistent with a simple deconditioning model. They may, in fact, indicate that some CFS patients have a metabolic myopathy. These findings could also explain why some CFS patients are made worse by inappropriate forms of graded exercise or achieve no more than minimal improvements in function regardless of how hard they try to improve their exercise tolerance.

    [..]

    4. Lane RMJ, Burgess AP, Flint J, et al. Exercise responses and psychiatric disorder in chronic fatigue syndrome. BMJ 1995;311:544-5.

    5. Lane RMJ, Barrett MC, Taylor DJ, et al. Heterogenicity in chronic fatigue syndrome: evidence from magnetic resonance spectroscopy of muscle. Neuromuscul Disord l998; 8: 204-9.


    http://jnnp.bmj.com/cgi/content/abstract/74/10/1382
    Journal of Neurology, Neurosurgery, and Psychiatry 2003;74:1382-1386

    PAPER
    Enterovirus related metabolic myopathy: a postviral fatigue syndrome

    R J M Lane1,*, B A Soteriou2, H Zhang2, L C Archard2

    1 Division of Clinical Neurosciences and Psychological Medicine, Imperial College, London SW7, UK
    2 Biomedical Sciences, Imperial College

    Correspondence to:
    Correspondence to:
    Dr R Lane
    West London Neurosciences Centre, Charing Cross Hospital, Fulham Palace Road, London W6 8RF, UK; r.lane@imperial.ac.uk

    Objective: To detect and characterise enterovirus RNA in skeletal muscle from patients with chronic fatigue syndrome (CFS) and to compare efficiency of muscle energy metabolism in enterovirus positive and negative CFS patients.

    Methods: Quadriceps muscle biopsy samples from 48 patients with CFS were processed to detect enterovirus RNA by two stage, reverse transcription, nested polymerase chain reaction (RT-NPCR), using enterovirus group specific primer sets. Direct nucleotide sequencing of PCR products was used to characterise the enterovirus. Controls were 29 subjects with normal muscles. On the day of biopsy, each CFS patient undertook a subanaerobic threshold exercise test (SATET). Venous plasma lactate was measured immediately before and after exercise, and 30 minutes after testing. An abnormal lactate response to exercise (SATET+) was defined as an exercise test in which plasma lactate exceeded the upper 99% confidence limits for normal sedentary controls at two or more time points.

    Results: Muscle biopsy samples from 20.8% of the CFS patients were positive for enterovirus sequences by RT-NPCR, while all the 29 control samples were negative; 58.3% of the CFS patients had a SATET+ response. Nine of the 10 enterovirus positive cases were among the 28 SATET+ patients (32.1%), compared with only one (5%) of the 20 SATET- patients. PCR products were most closely related to coxsackie B virus.

    Conclusions: There is an association between abnormal lactate response to exercise, reflecting impaired muscle energy metabolism, and the presence of enterovirus sequences in muscle in a proportion of CFS patients.
     
  5. Cort

    Cort Phoenix Rising Founder

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    thanks Fred I'll give it a shot.

    Unfortunately the lactic acid hypothesis does not appear to have panned out; further studies to my knowledge did not find high levels of lactic acid - would that it was so easy! Of course there is always the question of subsets isn't there?

    http://www.ncbi.nlm.nih.gov/pubmed/11782647?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    Yes, 20% of patients did have enterovirus RNA - unfortunately that subject has gotten little further study as well. Another study found 13% of CFS patients had muscle enterovirus.

    http://www.ncbi.nlm.nih.gov/pubmed/14556267?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    Another found no muscle enterovirus infection in this disease.

    http://www.ncbi.nlm.nih.gov/pubmed/8863367?ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    so they may be in a certain percentage of patients but don't - at least in the muscles- appear at this point to be a major player for most patients.
     
  6. Freddd

    Freddd Senior Member

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    Salt Lake City

    Hi Cort,

    Oh yes, the glories of statistics. Believe me, after 25 years in the business I know how to use and abuse statistics. I've stood up in front of a roomful of people presenting findings loaded with statistics. I can prove to you quite conclusively that in a dental plan for instance that there are 53 procedures that account for 92-95% of total cost and how preauthorization and compensation models affects the distribution of costs. That tells an individual absolutely nothing about whether they will be better served with a crown or a 3 surface restoration in any specific case. They both have their positives and negatives. That comes down to provider education and behavior modification.

    Another biomarker for trouble is MMA. That indicates the ATP generation process is breaking somewhere else than lactic acid. There are enough different places for the cycle to break down that no one place may be sigificant except for those few people.




    Here is a list of all the things that affected my energy and fatigue levels as well as "brainfog" very perceptively. Every one of them affected both areas. Not a single one was a complete solution. Each one may have had one or more non significant biomarkers. A dependence upon statistical methods will miss every one of these. In addition, this answer is predicated on a suitable amount of another dozen or so basic nutrients. These all gave incremental results for me. Some people have "sudden death" results instead where the last item in triggers the whole chain.
    1. methylb12 at normal sublingual levels
    2. adenosylb12 at normal sublingual levels
    3. SAM-e 200-400 mg
    4. L-carnitine fumarate
    5. TMG
    6. Zinc at 65mg instead of 15mg/day
    7. creatine
    8. D-ribose
    9. methylb12 at high CSF/CNS penetrating levels
    10. adenosylb12 at high CSF/CNS penetrating levels
    In my own case I think an entero virus triggered the crash that was then maintained because I never had enough active b12 and cofactors to climb back out of that state. The virus may have continued because of the poor immune function because of the b12 deficiency. Because I was taking cyanocobalamin daily I could never have tested as deficient.

    I have lost faith as it were in the way medical and nutritional research is done. I see all these poorly asked questions receiving the comparable quality answers. They are trying to ask narrowly constructed questions that can receive precise answers of problems that are more complex and of more than single cause. How does one ask the question about the cause(s) of fatigue in CFS/FMS that gets my 10 part answer above? Not one of my 100 or so practitioners was able to ask that question and come up with the answer that works. Start stacking 10 or 20 logical ANDs and/or ANDORs and the question becomes unaskable and unanswerable under our current research models. Maybe that's why cancer in general has continued to be inscrutable. Right now half a dozen cancers are being investigated as to whether they might be caused by DNA synthesis malfunction caused by b12 deficiency. Any bets that they are using the wrong b12 thereby asking the wrong question?

    And now the chorus ... "When will they ever learn?"
     
  7. Dolphin

    Dolphin Senior Member

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    (In reply to Cort)
    Maybe, maybe not. I know from the Chia research that the percentages that show up positive depend on the type of testing, the site of testing, etc - there were huge variations from the 30s% (??) to 82%.

    Also unlike some viruses like AIDS and Hep B where the levels on tests are consistent over time, on some of the tests they see results that vary from negative to positive to negative.

    The Chias have an exchange with the Buchwald team on testing at:
    http://www.journals.uchicago.edu/doi/pdf/10.1086/367666?cookieSet=1
    Diverse etiologies for chronic fatigue syndrome.Chia JK, Chia A. Clin Infect Dis. 2003 Mar 1;36(5):671-2; author reply 672-3

    Also 58.3% of the CFS patients (Oxford criteria - not as strict as it started in the early 90s) showed up on that exercise test so by Lane's reckoning they didn't all have an enterovirus.
     
  8. Dolphin

    Dolphin Senior Member

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    FWIW, the one supplement I swear by is Carnitine.

    I have taken 3000mg of L-Carnitine or a mixture of L-Carnitine and Acetyl L-Carnitine for over 12 years.

    I read about findings by Pliopys in 1996 and initially got some in Ireland. However it was very very expensive (6 old Irish pounds/day - maybe US$10/day) as the only place we could find it sold it as 60x100mg. So I stopped and started when I was very dear and noticed the difference. It can be got for much better prices now e.g. from www.iherb.com or www.puritan.com (no commercial interest).
     

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