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Mitochondrial tests and treatments

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

  1. SOC

    SOC Senior Member

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    Ah, that clears it up. :)

    Dr Lapp is a wonderful man, imo. However, when I saw him quite a few years ago, he wasn't doing immune testing which limited his ability to treat me effectively. The exercise testing was beneficial because pacing did help slow my downhill slide. He also helped with sleep meds and treated my hypothyroid condition. Unfortunately, that was not enough to improve my health in a large way. I went to Dr Lapp hoping to get in the Ampligen program, not realizing then that living so far from Charlotte made Ampligen treatment impossible for me.

    While I like Dr Lapp, I don't consider him one of the top ME/CFS docs anymore. The top docs on my list are doing testing and treatment (where possible) for immune dysfunction, pathogens, dysautonomia, endocrine dysfunction, and other common dysfunctions in ME/CFS as well as participating in experimental studies of more cutting-edge therapies.

    I'm surprised, though, that Dr Lapp is not suggesting any conventional medical treatment for you beyond just waiting and hoping you'll recover. The way I remember him, he was very interested in improving quality of life for his patients.
     
    justy likes this.
  2. Leopardtail

    Leopardtail Senior Member

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    There are some studies that have shown treatments to be effective for anywhere from 30% to 80% of patients, but no honest research showing higher rates of effectiveness. The big issue is that promising research is either not repeated, or can't get published, the psychs are often the peer reviewers in many publications. Lenny Jason's systemic review is a good place to start looking for 'hard science',

    One really does have to make an educated guess what might be wrong from the symptoms then have tests commissioned to check the hypothesis. By and large most ME patients seem to be very much more likely to have severe side effects with 'conventional drugs' than nutritional supplements, though some do show massive improvement from the same drug that caused permanent damage to another.

    My personal issues were primarily disturbance to diabetes varying with fatigue level (fatigue first). This varied from genuine insulin resistance (cured completely with Ribose + Alcar + CoQ10). With lower fatigue, very high Dopamine (top of normal range), double expected Cortisol, elevated Epinephrine - higher Insulin doses dealt with this, however by virtue of being variable it makes stability a thing of the past and requires constant dosage review.

    I also suffered polyuria needing many pints of water per day to maintain health, at worst urinating 14 litres of urine per day. With less severe polyuria, my BM/Cortisol/Adrenaline issues resolve rapidly with Saline, hence some connection to blood volume seems likely. I tried liquorice extract for this which (as per research results) improved Polyuria, but further raised Cortisol.

    As expected I also suffer marked OI, my brain fog also lifts with saline, hours after the cessation of saline my blood sugars continue to fall stabilising some 12 hours after and starting to rise despite polyuria.

    I had a neutrophil mito test showing 65% of normal ATP production and impaired transport of ATP out of mitochondria.

    For me Ribose + CQ10 + Selenium (I was deficient) + R5P produced marked improvement but only when left alone by family. My home-life is extremely stressful and the benefits only show when I am left alone. Hence they increased basic energy, but not the severity of PEM.

    The Polyuria (and low Selenium) may be down to high Cystine (established well above 95% by population) but I am awaiting medical action that so cannot comment on the effectiveness.

    Melatonin (with high fatigue) massively improved sleep (shorter and much deeper, more restful). Alcar + Ribose (1 hour before bed) also surprisingly improved sleep.
    High doses of Vitamin C (10-15g/day) produced improvements in mood & inflammation & constipation.
     
    Last edited: Jul 1, 2014
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    See post above.

    Sushi
     
  4. SOC

    SOC Senior Member

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    We both had very sudden onset (from well to major symptoms within hours) acute flu-like illness. I got it first, daughter got it about 4-5 days later.
     
  5. Dr.Patient

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

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    We did discuss antivirals, Ampligen, Rituxan, etc, but I decided not to try any of those 'radical' treatments. He is very interested in improving my condition, and he is a great doctor!

    Can you give the names of those ME doctors you consider to be experts?
     
  6. SOC

    SOC Senior Member

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    What is radical about antivirals for documented active viral infections? Or is Dr Lapp now prescribing antivirals without evidence of active viral infections? He certainly wasn't doing that when I saw him.

    Yes, Dr Lapp is a great doctor. If he's offering antivirals, Ampligen, and Rituxan and doing immune testing these days, he may go back on my top ME/CFS specialists list. ;)
     
    justy and Valentijn like this.
  7. Leopardtail

    Leopardtail Senior Member

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    The answer to this depends in part what symptom cluster you suffer and of course where you are based!
     
    SOC likes this.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are quite a few threads discussing this in the ME/CFS doctors section--there are many different opinions.

    Sushi
     
    SOC likes this.
  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SDSue I really appreciated your opinion and please don't worry that I am basing my decision to hold off on IV Glutathione b/c of your experience. I saw my ND today and she totally agreed that we hold off on anything with IV's b/c I have unexplained bruises all over my legs. I am also preparing to travel to see an ME/CFS specialist in two weeks and don't want to start a new treatment that could cause a bad reaction preventing me from traveling. So, your feedback was awesome and no worries.

    I was wondering how you found the "Mito specialist" and if this is another super rare doctor to find in the US? Do you think finding one is worth it or a waste of time?

    Also, my ND finally gave me the kit today to test mito functioning and it is a blood & urine test that I have to do a special lab (I think the test is called ION?) I will not have time to do it before my trip and want to do some research on it b/c it is expensive.
     
  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sushi, Can you explain how I find the "dedicated threads" so I can track people's treatment protocols with different doctors? Is this in a specific forum that I am not finding or is it in the blog section? I would be happy to do a thread like this once I see my ME/CFS specialist in two weeks, but not sure which section it goes in? When I do a search, the info seems to be spread out all over the place and it is hard for me to piece it together.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some are in ME/CFS doctors, some in Introduce Yourself, others in other sections depending on what area seemed to fit best for the member posting. And some members do have blogs. If you read the forum by "New Posts" you will see them popping up as members update them. They are usually obvious by the thread title.

    Sushi
     
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Dr.Patient Right now if I can even get back to 50% of my prior life/functioning I would be thrilled! I am not sure what is considered a "radical" treatment though and wondering if you could clarify? Do you consider it a radical treatment if an ME/CFS specialist prescribes an anti-viral or do you think of a radical treatment more of the various supplements or IV's, etc, that a naturopath would prescribe? I am asking in all sincerity and am not sure which one you meant? Thanks!
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sushi, thanks and I think I misunderstood! So there is no google site search under "dedicated threads?" it just means that someone started a thread and then continued posting all their on-going treatments within that same thread (i.e. several people who posted about their trips to KDM in Belgium or other doctors?)
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Correct, there is no category of dedicated threads--but quite a few members have started threads updating us on their testing and treatment.

    Sushi
     
  15. SDSue

    SDSue Florida

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  16. Dr.Patient

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

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    I consider (and some may not) as "radical" anything that is injected, like glutathione, Myer's cocktail, IV Vit C, etc which are not "mainstream" medicine. Also things like Valcyte, Ampligen, Rituxan, multiple antibiotics, etc which involve multiple visits, testing, risk of complications, etc with some patients benefiting and some worsening - not good enough for me. I can understand if desperation can drive people to these...

    In my case before, and in three other people who have shared their stories, taking care of symptoms and some "low risk" treatments, and doing "Aggressive Rest Therapy", have helped them recover to almost normal, so I choose to do that.

    Again, it may depend on every person's individual illness.
     
  17. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Dr.Patient Thank you for explaining and I was very curious as to your opinion being both a doctor and patient. In my own case, thus far, I have not done any of the treatments that you consider "radical." I was close to trying IV glutathione but decided yesterday with my ND to hold off for multiple reasons (not trying something new before I travel to the ME/CFS specialist, deciding to do the Mito and 23andme tests first, and trying to figure out why I have bruises all over my legs before doing anything involving an IV.)

    As far as the anti-virals, I do not have any local doctor willing or knowledgeable to prescribe to me nor I have been adequately tested to even know which viruses I have (with the exception of EBV which I have high titers of.) I am not opposed to trying an anti-viral if all those criteria are met but at present, I do not have enough info to go that route. As far as Ampligen & Rituxan, I do not know a lot about them and don't even know how one would get them outside of a research study? And I definitely would not try antibiotics (after my neurotoxic reaction to Levaquin which cost me a year and a half of my life to recover.)

    In all cases, I am just speaking for myself, with the knowledge that I have at this point in time.

    I am assuming that the treatments you label as radical are not so much based on time or money involved, as much as the potential danger and risk of causing a relapse/worsening of symptoms? I do take multiple supplements from my ND including anti-oxidants, natural anti-virals, etc, and personally do not consider them radical in any way. At present, I am basically homebound but able to go to doctor's appts and very minimal errands if someone else is driving.

    If I became completely bed-bound, I would re-consider riskier treatments as I would feel that I had nothing to lose.
     
  18. Dr.Patient

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

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  19. Dr.Patient

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

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    How long did it take for you to get to 80%, and how long were you at that level before you took immunomodulators, thx.
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    You must be an incredibly patient person as I would not be able to tolerate waiting a year or two if I was completely bed-bound and it would not be realistic for my life and family! I am barely able to tolerate the level I am at now which is why I am making the trip to see a specialist and learn more about my options. But for me to try something "radical" I would need a lot more information and feel like I was making an informed decision. At present, I still feel like I am lacking a lot of the needed info so I am sort of in this middle ground area.
     
    Valentijn likes this.

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