New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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New doctor today

Discussion in 'General ME/CFS Discussion' started by SwanRonson, Apr 22, 2015.

  1. SwanRonson

    SwanRonson Senior Member

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    I have no reason to believe that this one will be any different. Just blind hope I guess. There's always that one little chance.

    Been in the room for 40 minutes and still haven't seen him. Not looking good. :-(
     
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  2. Kina

    Kina Admin Support Staff

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    It could be he is spending more time with patients than he should be? Let us know what happens.
     
  3. SwanRonson

    SwanRonson Senior Member

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    Got a little over 20 minutes with him. Started putting his hand on the door knob at the 15 minute mark. Same old thing. [sigh]
     
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  4. snowathlete

    snowathlete

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    Sorry, sounds like a frustrating experience. Did you get anything from it at all?
     
  5. SwanRonson

    SwanRonson Senior Member

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    I did get a doctor willing to write me pretty much any antibiotic prescription I want. He was impressed with my research enough to admit that I probably "knew what I needed." So, that's good I guess. A little scary too. But, I guess you just do the best with what you're given, right.

    Ordered a lot of bloodwork. New stuff that hasn't been done yet. That's good. I'll be tired for a few days though. Giving 9 vials of blood is going to wipe me out. :-(
     
  6. Crux

    Crux Senior Member

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    I think I like your doc more than my doc;)

    Blood sausage for dinner?
     
  7. SwanRonson

    SwanRonson Senior Member

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    @Crux how is your liver doing ?
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe doesnt want to do or say too much until the blood work comes back.
     
  9. Crux

    Crux Senior Member

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    I guess it's ok...no pain lately. I haven't had a blood test in 2 yrs.- only had elevated ALT once. The CT scan was 4yrs. or so ago. MRI was suggested, but I opted out, low money. The lesion was low density, so I made that choice.

    I didn't think of SIBO at that time,but now it all fits. In addition to the excess lactic acid, I was also taking HCl at that time, so I figure I was actually dissolving in acid.

    Have you had any liver symptoms? Pain, etc.?
     
  10. SwanRonson

    SwanRonson Senior Member

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    Actually I have had slight pain there. It comes and goes and is never severe. I had an abdominal CT scan about 4 months ago that came back negative. As of now I haven't had any pain in the liver area in a couple of weeks.

    I'm waiting on the D-lactate urine test results to come back right now.
     
  11. Crux

    Crux Senior Member

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    A CT scan can miss things, but so can an MRI.

    Pain is telling, but it can be referred. I thought I had kidney pain, but the lesion was on the posterior liver area, so kind of near by.

    Did you have some carbohydrate drink before the D-lactate urine test?

    Lactic acidosis symptoms are usually described with altered mental states, but I think they should include the pain element.

    I've read that it's difficult to diagnose because not everyone will have high anion gap or low bicarbonates,etc.

    I hope you don't mind my curiosity....

    Good Wishes
     
  12. SwanRonson

    SwanRonson Senior Member

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    No I didn't have any sugar drink before the test. I definitely have brain fog though. That's one of my main symptoms. That and fatigue.

    I have the breath test kit but was waiting until the d-lactate test came back before doing it. I didn't want another acidosis episode. The last one put me in the E.R.
     
  13. Crux

    Crux Senior Member

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    The idea of having to worsen one's condition to get a diagnosis is a big deterrent!

    To us, it's brain fog, to them, hepatic encephalopathy. Both = bad. Fatigue is another word for hell.

    When you went to the ER, were you also having cardiac symptoms? They're common with d-lactic acidosis,but I wonder if there was some fibrillation?
     
  14. SwanRonson

    SwanRonson Senior Member

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    Cardiac? Yep.

    It went down like this:

    Intense nausea for a couple of hours.
    Vomited.
    Felt a little better and fell asleep.
    Woke up sweating and heart racing (120 bpm)
    Tried to walk to the bathroom and passed out in the floor.
    Wife brought me around and I barfed again.
    Paramedics came and took me to the E.R.
    By the time I got looked at all that was wrong was low phosphorous on the blood work.

    My wife said I had a seizure when I was passed out. She said I arched my back and clenched my fists. Scared her to death.

    From what I've read that all fits for lactate acidosis. Even the low phosphorous.

    I had taken 20 ml of lactulose that day as a laxative, and to see if it helped my brain fog as an ammonia reducer. It obviously did neither.
     
  15. Crux

    Crux Senior Member

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    What a terrible scene! I'm glad your wife was there to help, but I hope she wasn't traumatized.

    I agree that it could have been a d-lactic acidosis episode. With so little evidence, i.e. blood markers, one has to piece together the possible cause.

    For instance, in this report, an individual with cirrhosis had an episode of d-lactic acidosis from taking lactulose. ( Most all reports regarding DLA occur in people with pre-existing conditions, such as short bowel syndrome.)

    "Other Medications Causing Hyperlactatemia Case reports of lactic acidosis due to isoniazid (INH),130 simvastatin,131 atorvastatin,132 niacin,133 and nalidixic acid134 have been published. It is unclear whether or not the hyperlactatemia is due to hepatic impairment that occurs with these drugs or if there is additional inhibition of cellular respiration. INH inhibits
    mycobacterial pyridoxal (the oxidized form of pyridoxine) to block bacterial growth and metabolism. Elevated levels of INH could affect human diphosphopyridine nucleotides135 and decrease metabolism of lactate to pyruvate. Simvastatin and atorvastatin are in a class of drugs known to reduce serum coenzyme Q10, a central cofactor of the mitochondrial respiratory chain.136 Lactulose has been a mainstay of treatment of hepatic encephalopathy for decades. Colonic bacteria break down lactulose into lactic, acetic, and formic acids. In a case where a cirrhotic patient received treatment with lactulose, severe lactic acidosis occurred, theoretically due to the formation of lactate in the colon, which diffused back across the gut wall, facilitated by intestinal hypomotility.137"

    http://criticalcaremedicine.pbworks.com/f/lactic acidosis - recognition, kinetics and associated prognosis.pdf

    Here's an article about Hepatic Encephalopathy that's pretty good. ( I'm including these links in case anyone else is interested. I believe this is pertinent to ME/CFS.)
    http://www.clevelandclinicmeded.com...hepatology/hepatic-encephalopathy/Default.htm

    This report begins with a case study about short bowel syndrome, but then covers d-lactic acidosis well.
    http://hkjpaed.org/pdf/2006;11;246-254.pdf

    The arching of your back during your seizure is called : decerebrate posture, or opisthotonus.
    This can happen during HE caused by infections, etc.
    http://www.nlm.nih.gov/medlineplus/ency/article/003299.htm

    I congratulate you on saving your own life, and sharing the probable etiology of it with us.
     
    Last edited: Apr 26, 2015
  16. SwanRonson

    SwanRonson Senior Member

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    "...facilitated by intestinal hypomotility"

    This was certainly the case, since at the time I was severly constipated - having not had a bowel movement in about 7 days.

    I had a plasma lactic acid test about 2 weeks ago and it came back well within normal range. So, I don't think renal or hepatic clearance is an issue.

    I think it's more of an issue with my gut bacteria generating it, if indeed that turns out to be the case. I'm waiting for the D-lactate urine test to come back. If it comes back as normal then I'll move on to other things. My brain fog is ever-present, so a normal D-lactate would preclude lactate as the cause of my neurological symptoms. Also waiting on blood ammonia level test to come back.

    All of my issues started when I was taking two things: Prilosec (omeprazole) and Methylfolate. I thought for a long time that it was the methylfolate that caused my problems since brain fog is a symptom of taking it without cofactors. But now I'm thinking the omeprazole could have caused some damage in any of a few different ways (sibo, pathogenic bacteria, liver damage, kidney damage, etc.) Who knows? Just have to work through things one at a time until I find some clarity.
     
  17. Crux

    Crux Senior Member

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    I think that d-lactate can fluctuate, so, not sure if the test would be conclusive. How did you feel at the time of the test?
    Were you fasting? What was the last meal? etc.

    True though, if it does fluctuate, shouldn't the brain fog as well? I've read that d-lactate can infuse into the brain, inhibit pyruvate decarboxylation, impairing ATP formation. I don't know if this is prolonged.

    Some with SIBO can have high or low folate. Mine got very high, but it caused a lot of pain, not brain fog.

    PPIs interfere with B12 absorption. Do you or did you take it with the folate or Prilosec? B12 deficiency is a common symptom of SIBO, et al. B12 deficiency can present with major brain fog, even dementia. ( I was showing signs.)

    I read that constipation can increase the absorption of ammonia, so, another good reason to resolve it.
     
  18. SwanRonson

    SwanRonson Senior Member

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    I felt pretty much the same as usual these days. A fairly steady, functional level of brain fog/fatigue. I'm sure it does fluctuate. The test came about 2 hours after my meal. I've been on a low-fodmap diet for about six weeks now. The brain fog improved from what I consider moderate to mild. Severe being virtually non-functional. At the time of the lactic acidosis episode it was severe. I almost had to take a disability leave from work.

    My folate was middle of the road when my problems started. 17 (range was 7 to 34 i think).

    I was only on the prilosec for 5 weeks, so I don't think that was enough to induce B12 deficiency. My B12 levels started at 466 and are now up to 800 at last check. I take a small dose of 5-star methyl every other day. b12 levels can be pretty meaningless at times though, so who knows.

    I also have low-T and low cortisol going on. So, those can definitely be a factor with brain fog.
     
  19. Crux

    Crux Senior Member

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    Yeah, from reading this forum, the causes of brain fog and fatigue could be near infinity.

    Typically, the experts say that once one begins B12 supps., they should try to keep levels above 1000.

    When last checked, mine were above 3000; I was forced to take enough to stop the neurological damage that was unremitting with lower dosages.

    Recently, I've been trying to pinpoint the bacteria that steal our B12 for their own consumption. B12 deficiency from SIBO makes more sense to me than anything now. ( I've scoured the genetics of it, but it doesn't explain enough, and I don't have pernicious anaemia.)

    As with everything I research, there tends to be no clear answer. Bacteroides fragilis, for instance, is a commensal bacteria, but it can be overgrown in SIBO. B. fragilis appears to have a great affinity for B12.

    I forget the bacteria that are found in the infection called Tropical Sprue, but there are several that cause B12 deficiency. ( These bacteria are also found in SIBO.)

    In recent months, I've been able to reduce the B12 dose, but some days ago, I began to have vertigo again, along with fatigue, neuropathy, optic neuritis,and fog. I've had to increase the dose again.

    I think there's a chance for great improvement by treating the SIBO. This will take more time, the modified paleo diet, is showing some promise. I hope to starve those buggers into submission, but not eradication.
     
  20. SwanRonson

    SwanRonson Senior Member

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    That's the hard part with sibo. Starving the overgrowth and pathogenic ones without starving the good guys too. It's such a balancing act. Especially with methanogenic sibo.
     

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