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Mitochondrial tests and treatments

Discussion in 'General Treatment' started by Dr.Patient, Jun 22, 2014.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Are there any threads here that show your protocol, and the protocols of other people that helped them, thx
     
  2. SOC

    SOC Senior Member

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    And how do you propose they get checked for and treated for these things, some of which require specialized testing and interpretation, when their doctors don't believe there's anything wrong? No doctor we saw even considered giving my daughter and I tilt table tests for dysautonomia or tested for hypothyroid -- both readily available standard tests. They certainly weren't going to order the specialized immune tests needed to identify the immune dysfunctions in ME/CFS. They also misinterpreted our pathogen tests based on the wrong assumption that we had healthy immune systems. This is why it is important to see a top ME/CFS specialist. Doing nothing is not the answer for ME.
    How do we know that? Where's your scientific evidence? Over what time period does this improving, or not, happen -- weeks, months, years? How long were these patients studied to know if the trend continued? Are you including chronic fatigue (the symptom) patients in with CCC and ICC-defined ME/CFS patients in your "some patients"?

    To the best of my knowledge, there is no research that shows that in a cohort of strictly defined (CCC or ICC) ME/CFS patients, "some patients improve, some stay the same, and some decline". We are in desperate need of good research on the progression of this illness in strictly defined patients. I think we'd all like to know what the statistics are with regard to recovery, or not, with various treatment (including no treatment), but that research currently does not exist. Anecdotal evidence is notoriously unreliable.
     
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  3. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Mine started with a severe flu on 1.1.11 (really), and struck me down. I had PEM, which is characteristic of CFS. Over the next 8 months, I placed myself, rest a lot, and then split my tasks over a week, etc. I was lucky. There are some people, Laura Hillenbrand, for e.g., who had a flu when she was 19, and is still homebound 26 yrs later. I started exercising in 2012, and perhaps over did it, this time leading to a relapse with PEM, headaches, tremors, muscle pains, constipation, insomnia, since June 2012, and ongoing (a tiny bit better). I was diagnosed and am under treatment by Dr. Lapp, a CFS specialist. You are right about the terms CFS and ME.
    @Sushi @SOC Perhaps you could clarify the difference
     
    Last edited: Jul 1, 2014
  4. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @SOC , are we talking about different illnesses here, you about "ME" and I about "CFS"? If so, please state your definitions of both, thank you.
     
  5. SOC

    SOC Senior Member

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    I can find no Dr Lapping when I search the name along with "CFS". Do you perhaps mean Dr Lapp at the Hunter-Hopkins Clinic in North Carolina?
     
  6. SOC

    SOC Senior Member

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    The distinction I, and most here, make is between the neuroimmune illness described in the Canadian Consensus Criteria (ME/CFS) or the International Consensus Criteria (ME) and the umbrella term "CFS" which doesn't require PEM (not exercise intolerance, which is a different beast), and requires little more than extended fatigue. The umbrella diagnosis "CFS" often includes patients who do not have ME/CFS but have missed diagnoses for other fatiguing conditions, including Post Viral Fatigue Syndrome, which is not ME/CFS.

    Because in the US the neurological illness ME has been subsumed under the umbrella term "CFS" the only official diagnosis for our illness here is CFS. This causes a great deal of confusion. In the US, most patients with the neurological condition ME prefer to use the term ME/CFS to distinguish the condition from the "CFS" which can include multiple less serious conditions.

    The vast majority of members here at Phoenix Rising are not suffering from misdiagnosed fatiguing conditions, or PVFS (which often does resolve without treatment). We have the neuroimmune condition listed as a neurological condition by the WHO. That is the illness we a generally talking bout here at PR, not generalized fatigue.
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Look here for the Myalgic encephalomyelitis: International Consensus Criteria. This and the CCC are the latest and most respected criteria for the diagnosis of ME.

    CFS has often been diagnosed by the Fukuda Definition--look here.

    Sushi
     
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  8. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Yes, Dr.Lapp, sorry, typo
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some of us have "dedicated threads" which discuss their initial and followup visits with an ME specialist, give their test results and subsequent treatment protocol. Others of us have spread our comments over many threads. This was my approach, as each patient is individual and no single protocol is going to be effective for all--so I have commented by subject in many threads.

    After you have read the forum for a while you will see the members with "dedicated threads." I'll leave it to them to supply links, if they wish to.

    For me, after an initial appointment and review of my medical records (I brought with me tests done by an autonomic specialist showing dysautonomia, and earlier systemic testing, heavy metal testing, gut testing etc.), my doctor ordered testing of:

    The immune system (including immunophenotyping, the gut (DNA testing for about 67 bacteria), food sensitivity (US BioTek), pathogen testing (antibody, PCR, genetic sequencing for viruses, intracellular infections and other infections often found in ME patients), inflammatory cytokines and other markers of inflammation, extended CBC, specific endocrine testing, specific genetic testing (genes that are often found to have significant SNPs in ME patients and which would impact treatment), some specific tests that have been shown to reveal problems in ME patients--such as PrPc functioning, Elastase expression, Perforin mRNA expression, soluble CD14, C4A, total antioxidant capacity, a mold panel etc., etc.

    My doctor reviewed all the test results (he has seen only ME patients for about 20 years and is one of the primary authors of both the ICC and the CCC). I was diagnosed by the ICC: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
    and he suggested an individual protocol to address lab findings and symptoms.

    In the first phase of treatment he addressed my extreme imbalance of gut flora and several gut infections, prescribed GcMAF injections as testing showed that macrophage activation was partially blocked, other types of immune support (I had very dysfunctional immune test results), antivirals to address positive tests for viral infections, methylation support (I had brought with me a methylation panel showing partially blocked methylation) and treatment for systemic inflammation.

    Later he began treatment for intracellular infections (Bartonella and Yersinia) and continues to adjust other medications and supplements according to further lab tests and symptom response.

    I have had significant changes in both physical and cognitive function. I can now drive, do necessary shopping, read as long as I wish, walk for about 30 minutes, stand without medication for OI, handle an intense pilates class, and have been able to successfully take university courses. I could not do these things before treatment.

    That's the short story!

    Sushi
     
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  10. lansbergen

    lansbergen Senior Member

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  11. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @Sushi @SOC Thank you very much for that! While I sort through more info, Sushi, can you give me a timeline of these treatments and improvements, thx
     
  12. Mij

    Mij Senior Member

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    You did not recover 100% if you relapsed after returning to physical exercise. This is a common misconception.

    I had a sudden viral onset and also thought I recovered after 8 months with no treatments. I returned to work and started running again. I went downhill from there and that was 23yrs ago.
     
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  13. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Agree, felt like 100, but a 100 should have exercise tolerance like preillness, so more like 90. Have you seen any improvement in 23 yrs?
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I haven't kept a diary (would have been good if I had :p)

    I had been half sick for many years--working full time but collapsing evenings and weekends). I suddenly fell into a disability level of functioning in 2006 (sometimes having to crawl instead of walk, relying on microwave food cause rarely able to shop or drive, a debilitating level of OI and severe, seemingly cardiac symptoms (probably from ANS dysfunction and low blood volume as cardiac tests were normal).

    I first saw my present doctor in January, 2011. Within 6 months my level of functioning had greatly improved. Within about a year manifestations of things like herpes simplex had disappeared, OI and cognitive function was much improved, migraines were gone, chest pain and discomfort rarely occured.

    My next set of tests at about the 1 year mark found many of my ridiculously out-of-range tests back in range or just above or below. No more chronic sinus infections. Sleep greatly improved (LDN helped a lot with sleep). Treatment was adjusted accordingly.

    In about May of 2013 Bartonella was found by PCR and genetic sequencing (testing methods had improved), Yersinia was found some months later.

    I decided to delay treatment for Bartonella as I had personal commitments that would make such a rigorous treatment difficult. I began treating them about 3 1/2 months ago and treatment has highlighted some of the classic symptoms.

    I will review progress with my doctor shortly.

    Sushi
     
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  15. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @Sushi @SOC were your onset and your daughter's onset acute in a day, or prolonged over months and years? The doctors' approach as far as diagnostics and treatments may be different for each group, thx.

    I'm gonna need a few days to look at all the info you both suggested, thx.
     
  16. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    What does this mean, thx
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It means that treatment brought out the classic symptoms of Bartonella. When I got them again, I remembered having them years earlier but then they seemed to have gone underground.

    Sush
     
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  18. Mij

    Mij Senior Member

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    Yes, I would say I improved to 80% 14yrs ago but had a terrible relapse after taking immune modulators. I never went back to base after that, instead I developed OI and the illness changed is the best way I can describe it. An ME (CFS) specialist told me years ago that every time we have a relapse our chances of improving becomes smaller.

    I would suggest you don't do aerobic type exercise because if you experience PEM you will slowly over time get worse.
     
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  19. Leopardtail

    Leopardtail Senior Member

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    Not sure about the chelation issue but too much Glutathione can inhibit Methionine Synthase and cause low levels of Methylation (even despit supps).
     
  20. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Thank you! Appreciate your advice, that is what I know about this illness, since I am homebound, I am not going to worsen my fatigue more by doctor trips in hopes of questionable benefits. And like I said earlier, even people who are at 80% are trying these questionable treatments, and getting worse. If I ever get to even 60%, I'm still gonna stay put and not try anything 'radical'.
     
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