A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Curious if my story rings any bells with others?

Discussion in 'General ME/CFS Discussion' started by LHCTom, Dec 11, 2016.

  1. LHCTom

    LHCTom

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    I was diagnosed with Chronic Fatigue by multiple doctors including one at Stanford, OMI, multiple integrative clinics, Kaiser among others. But even though my symptoms match the criteria, other symptoms do not. I was one of the patients in Dr. Naviaux’s recent metabolomics CFS study and helped fund it. It can be found at http://www.pnas.org/content/113/37/E5472.full . My metabolic abnormalities fell inside the identified biomarker signature including the following abnormalities:

    I had a total of 28 metabolic abnormalities defined by outside 2 SD above or below normal. A common theme seen in some of my symptoms and abnormalities is a gut microbiome dysbiosis and a leaky gut epithelium.

    [​IMG]

    1) L-Carnitine was 2.1 SD below the mean and several acyl-carnitines were increased 1.7-2,5 above the mean suggesting decrease fatty acid oxidation in mitochondria is decreased.

    2) Phosphatidyl Choline lipids were 2-2.3 SD below normal

    3) Sphingomyelin lipids were decreased 2.2-2.8 SD below normal

    4) Homoserine was 2.0 SD below the mean

    5) Betaine was 3.0 SD below the mean

    6) DHEA Sulfate was 2.5 SD below the mean

    7) CoQ10H2 and CoQ9H2 were decreased 1.5 to 4.0 SD below the mean suggestive of CoQ10 deficiency

    8) Imidazoleacetic Acid ( IZA) was 3.7 SD below the mean. Consitent with chronic histamine release and consitent with chronic basophil and mast cell histamine release and allergic activation – Consistent with my having at least a dozen testing confirmed IgE mediated food allergies

    9) Lathosterol was 2.1 SD below the mean. Consistent with decrease in de novo cholesterol synthesis.

    10) Elevated plasma sucrose, phenyllactate and a decrease in several bile acids ( glycocholic and taurocholic ) which is consistent with a relatively leaky gut epithelium. This is consistent with the extensive food allergies due to the leaky gut.

    11) Homovanillic Acid was decreased 1.9 SD suggesting a mild dopamine deficiency.


    One of the problems I see in all people with Chronic Fatigue Syndrome is the vague symptoms which overlap with a multitude of conditions. Fatigue is among the most common symptoms from nearly a hundred different conditions. This suggests there may be many underlying pathologies to CFS/ME yet most people receive one diagnosis which has no known cause and no reliable treatment. Different people and studies have seen improvements due to a variety of treatment but they typically do not apply widely. This is the frustration of CFS/ME.

    I’ve pursued a diagnosis of an underlying pathology irrespective of how a CFS/ME diagnosis discourages many doctors from pursuing a deeper analysis. I have recently had my symptoms reach an acute stage that I believe has now presented me with a “lead” that is a solid as finding DNA at a crime scene. Most of the “leads” in the past have been analogous to an eye witness without their glasses in the dark. I’m curious if I’m alone as there have been “hints” that this now acute problem has been there from the beginning over 10 years ago. I'm telling this story in hopes it triggers ideas in other.

    From the very beginning in the late 90's, I always knew that my fatigue and a raft of other symptoms all seem aggravated while asleep. I would awake feeling the worst and it would take until around noon before I felt well enough to function. Then this cycle would repeat the next night and on and on for more than a dozen years. I experienced bouts of pain, sweats, nausea, low grade night fevers ( 99-100.5), swelling, numbness, etc.. but the pattern kept evolving and changing. Only the sleep trigger, fatigue, felling ill and pain in the morning were truly constant. It all started with a bout of foot drop followed by numbness up my legs, the discovery I produced no testosterone, had high CK=250-700, high total IgE=400-1100, and wildly varying creatinine (1.1->1.4->1.2->1.6->1.3 2.1->1.6->1.4->1.12) seemingly going down after antibiotic treatment. Very suspicious.

    I had a sleep study at Stanford which found mild sleep apnea. I used CPAP for 2 years followed by surgery at Stanford which seemed to stop all O2 desaturations. I then went on to be diagnosed with Lyme and Babesia as I live one 35 acres which are infected with ticks. I Helped fund a few studies by Dr. Bob Lane of UCB and we collected about 100 nymphal ticks on my property within 100 feet of my home and found both B burgdorferi and B. miyamotoi described here: http://wwwnc.cdc.gov/eid/article/22/12/15-2046_article . I have been bitten numerous times by ticks over 20 years and was CDC and IGenex positive on the WB plus C6 positive. A Babesia IFA was both IgG and IgM positive. I wasn’t sure what to believe so I went to Dr Fallon’s Tick Borne Research Center at Columbia for a second opinion.

    They confirmed the positive C6 ELISA at Stony Brook Lab and I had 4/10 antibodies on the WB which fell short of the CDC 5/10. They said it was likely I had Lyme due to the positive C6 and 4/10 near CDC positive that was consistent with the IGenex testing. I also had a positive Babesia Microti IgM positive ELISA by Medical Diagnostics Laboratories while at Columbia. I returned and was treated with antibiotics orally for 1 year followed by Mepron plus arythromycin for Babesia for about 6 months. I felt better but not great. I remained C6 ELISA positive until early 2015 after being tested each year until it became negative.

    I noticed that every time I was given extensive antibiotic treatment, my creatinine and CK would decline to either normal or near normal. When I told doctors, they would dismiss this even though I graphed every creatinine and CK test from 2003 through 2016 and their correlation and antibiotic driven decline was obvious. Still not one doctor took this pattern seriously until recently. When they saw my creatinine drop, they were happy my kidneys were ok but never asked why my creatinine wildly fluctuated between about 1.1 and 2.1 in mysterious near synch with my CK muscle enzymes. I then investigated whether a fungal infection could be involved.

    During the 2013 to 2015 timeframe, I had episodes of body pain focused in my hips and shoulders but also back and legs/arms where I could barely walk and felt like I had run a marathon in my sleep and awoke in this state. I was given prednisone by Kaiser which helped but worried me it could suppress my immune system should an infection be the real cause. One doctor believed it could be Bartonella due to my feral kitten and tick bites and we discovered Bactrim would stop the pain episode cold after about 4 days.

    I then asked for both a fingernail and toenail culture and arranged multiple mycotoxin ELISAs. Bactrim is a folate synthsisis inhibitor and does have fungal effectiveness. The mycotoxin ELISAs came back positive 3 times. My fingernail culture came back with a “Scedosporium apiospermum” infection

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2223844/

    and my toenails had a “Candida guilliermondii” infection. Its difficult to test for a disseminated fungal infection since once it reaches the blood, sepsis is not far away. Until a fungus breaks through the skin where it can be cultured, its hard to get at it if for example its in your muscles or kidneys.

    So recently things have come to an acute “head” which puts the cause very closely related to my sleep as always suspected. But now when I fall asleep day or night, when I awake 30 minutes to 3 hours later, I feel confused, hypoxic in need of air, a severe headache, severe pain in my hips and shoulders and lesser pain throughout my large muscles. It was so bad I went to the ER where I was turned away since my most basic vitals were ok. So that points at respiration and or circulation. I utilized an overnight pulse oximeter which suggested my O2 saturation was rarely dropping below 90%. That would not explain such severe symptoms upon awakening. A sleep specialist suggested I use a snoring monitor APP on my phone which also indicated only mild snoring. I then tried CPAP and it too had NO effect. So that leaves excess CO2 due to failure to exhaust or circulation. My total CO2 or bicarbonate on metabolic panels was often near the top of the range and occasionally over. So was it an Acid/Base problem like respiratory Acidosis? My doctor arranged an Arterial Blood Gas test in the hospital and my PH was dead on normal and no blood gas abnormalities. CO2 is fleeting but it had no caused something like a Acid/Base disorder like Acidosis. The mystery deepens.

    I saw a UCSF nephrologist since when I awoke, my BP was skyrocketing plus the unusual creatinine and CK behavior. My kidney was ok by ultrasound as was my kidney artery. He felt that since my creatinine comes down to normal regularly and my urine shows no protein and my ultrasounds were solid, it must be some underlying pathology such as an infection. He has referred me to a UCSF ID doctor and now my pattern and creatinine behavior is so specific, I believe we are closing in on the culprit. My personal suspicion at this point is I am experiencing a hypoxic condition while sleeping but its not due to respiration as much as the inability of my blood to accept “enough” O2 and flow through my capillaries while sleeping. This could also cause elevated CO2 since its removal from cells would also be affected by a combined oxygenation/blood flow problem. Now that I’m this focused, can I get a doctor to dig in properly.

    To support this conjecture, I switched my blood pressure medication from metopronol ( a beta blocker ) back to my previous Lisinopril ( an ACE inhibitor) and Amlodipine ( a calcium channel blocker) plus a baby aspirin and L-arginine to ease blood flow and prevent my blood vessels from contracting thereby allowing O2 saturated red blood cells to flow. This has now reduced my night awakenings in a panic and in pain with HBP to almost nothing. But I still feel lousy in the morning so its not a full solution. But now I have the ability to manipulate the symptoms based on a hypothesis that was left after eliminating sleep apnea and an acid base disorder such as respiratory acidosis.

    So why did I tell this story? I’m curious if any of this rings any bells with anyone else diagnosed with CFS? Failure to deliver adequate O2 to one's cells is a sure fire way to cause fatigue and a myriad of othre symptoms. I also wanted to show my example of where CFS does map to the metabolomics biomarker recently found in Dr Naviaux's study yet the underlying mechanism has to do with delivering inadequate O2 and or removing adequate CO2 from cells. No doubt failure to deliver adequate O2 to one cells and mitochondria would badly disrupt metabolism.

    In my case, suspect this will be tracked to some kind of infection or autoimmune condition that is affecting my blood vessels and or capillaries and circulation - something like a vasculitis or similar condition. But my awake respiration and O2 delivery and CO2 removal are probably at an acceptable albeit marginal level. Only when I’m sleeping and my respiration depresses naturally and O2 saturation declines to the mid 90% range and when combined with some apnea events does my O2 delivery to cells fall over some cliff and become inadequate. I suspect I have had this going on chronically for a dozen years and something like the Prednisone treatment unleashed an infection or something similar happened that pushed it to an acute phase which may be understood by doctors. I hope.

    Does this ring any bells or am I alone in this pattern?
     

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  2. lansbergen

    lansbergen Senior Member

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    I am interested in: the Imidazoleacetic Acid ( IZA) was 3.7 SD below the mean.

    The immunemodulator I use is,
    https://www.cancer.gov/publications/dictionaries/cancer-drug?cdrid=39058
    When I forget to take it the next morning I have a huge hangover That still happens even now I have improved a lot.
     
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  3. lansbergen

    lansbergen Senior Member

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    @anciendaze Hypoxy.?
     
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  4. aquariusgirl

    aquariusgirl Senior Member

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    Some of this reminds me of some of Richvanks posts ...I feeling he has touched on some of these points.

    You could do a search of keywords& richvank?

    This is just spitballing but hypercoag & hyperfibrinolysis & copper induced anemia might be underlying issues?

    But they wouldn't explain the nighttime irregularities.
     
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  5. taniaaust1

    taniaaust1

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    Hi, may ask that you don't call CFS Chronic Fatigue as chronic fatigue is something different to CFS though a symptom of it ..and this is a mistake we see so often made in the media.

    I have lots of symptoms (90+ the count is at) including some of your stranger symptoms with the ME/CFS not others eg sleeping helps me some. Some of my "stranger" symptoms I have had with ME/CFS are

    * foot drag (left side only)

    * swelling which seems unrelated to allergy
    - Ive had a hand swell right up 2 or 3 times, same right hand
    - I had optic disc swelling (optic discs are in eyes). The optic disc swelling I think was related to my BP swings
    and my BP spiking very high as high BP can cause optic disc swelling. My BP spikes are a result of ME autonomic dysfunction and orthostatic hypertension. My BP has been seen to reach 197/138 (it can spike up very high in one minute of standing)
    - early ME (in first year of this illness) my eyes swelled shut with my viral symptoms so I looked like a bullfrog

    Autonomic dysregulation of the extreme that it isn't usually found this bad in us. My BP varies from 197/138 to 40/0. At the hospital my dystolic was on their monitors after I HAD to lay down or fall down...my dystolic stayed at 0 for 5 mins (crazyily I can still be talking with a dystolic with 0). . It send the nurse panicing for a dr and the dr then went and got another monitor with same results happening on both monitors. I have had all 5 of the dysfunctions Dr David Bell mentions can occur in us.

    * abnormal creatinine. One hospital blood test showed my kidneys were struggling and a dr told me I was at risk of kidney failure during this (I'd ended up being ambulanced to hospital for a POTS crash when this test had been done).

    severe night sweats and high fevers, not just the standard low grade ones usually found in us (in my first year or more of ME I ran high fevers of 39 celicus (102.2F) and up)

    inability to feel temperature properly at times eg inability to feel hot water with hand and on other occasion during a heat wave (40+ C/ 104+ F) someone found me outside in jumper in sun as I was cold.

    Morgellon's for 18+ mths .. it may of been up to 2 years . (note CFS is common in Morgellon's)

    developed severe allergy (almost had to ring ambulance as my lips and mouth swelled when I did a dietary beach). Now have an epi-pen

    My noradrenaline has been so high? (the result I finally given was one which was out of normal rang and high so I assume the other they said couldnt possibly be right were way way way high) that several of my tests done by diffferent labs were dismissed as lab errors. 3 out of 4 of my tests were so abnormal that they were dismissed as lab errors. I think this result was caused by the form of POTS I have with the ME.

    Comatose or not waking at all for up to 3 days at a time where I didn't even wake for toilet or drink (happening when I was at my ME severest and was bedridden.

    unconsciousness of up to 5 mins (according to friend who was there). This was due to the coexisting POTS and when I passed out, I'd passed out in a way in which I was still propped up until my friend had moved me to where I could be placed laying to recover.

    taste buds tasting foods completely wrongly eg bread tasting like pineapple

    developed central auditory processing order CARP (though I don't now have it)

    skin writing disease.. and once showed a darier sign which the drs failed to diagnose (I'm sure I have some mast cell involvement. I have an uncle with systemic mastocytosis)

    paralysis when I'm very bad (though this is common in severe ME I believe). Ive been left not even being able to move a finger as hard as I tried.

    Ive had many who have lyme tell me they think I have that but regular lyme testing hasn't picked it up. There are 4 members in my family with ME/CFS (though a couple remain undiagnosed even when severe and on disability for "unknown illness") including the daughter of my uncle who has the systemic mastocytosis who ended up on a disability pension at only 18 years old (she got ill at 17).

    Testosterone issues with it being low are not uncommon in ME/CFS. I have PCOS unrelated to the ME which causes high testosterone (eg I'm female but can have a bit of a beard and mostausche) but due to the ME/CFS my testosterone is now so low that a specialist tried a testosterone implant with me. If I didn't have the PCOS, I probably would have nil testosterone.
     
    Last edited: Dec 11, 2016
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  6. taniaaust1

    taniaaust1

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    Is it skyrocketing from when you get out of bed? or is it up when you wake up and still laying? If its rocketing once you get out of bed it could be orthostatic hypertension such as what I have... as a complication of having low blood volume and of something such as POTS with the ME/CFS. I hae my high BP brought down at times (other then the high BP drug I'm on) by 2 litres of saline IV, that will stabilise my BP into a good range and stop it from wildly swinging.

    need of air - air hunger? that isn't uncommon in ME. and also has been a symptom Ive gotten at times. I got so bad with this one christmas after over doing it cause I'd peeled the family vegetables.. that if it hadnt been xmas day I would of got them to ring an ambulalnce..instead I went bad to bed thinking I was going to die as I felt like I was suffocating., felt like I couldn't get enough air though my breathing seemed ok.

    In one of the well known ME outbreaks (I forget now which one).. in the report for that. It mentions they had vasculitis as one of the symptoms.

    Actually I can in the mornings take a bit to get up and going, this is due in my case to not drinking so much during the night so I have to get well hydrated again in the morning before I can be up and doing stuff. Have you considered that you may be poorly hydrated after a nights sleep.
     
    Last edited: Dec 11, 2016
  7. vision blue

    vision blue

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    Since you have Morgellons, did your reading take you to the guy that hypothesizes its caused by Dycal, an indgredient in dentistry? All my symptoms started after I was given dycal without my knowledge many years ago when filling many teeth. Dycal is not supposed to be used in people with an allergy to sulfonamide, which I have. I don't know about CFS, but sulfonamide allergy is higher in lupus patients than the general population. (am also allergic to acrylic, e.g. MMA, and eugenol).

    I have some of your same symptoms; am having autonomic dysfunction; if you do have POTS is yours the hyperandregnergic kind, given what you say on the nor adreneline? on one of my tests i was very high in both nor adreneline (nor epi) and adreneline; other shows high dopamine and tyramine. The autonomic dysfunction caussing my bp very high, bout sof tachy, all sorts of things, trouble with eyes etc. I also have dermographia like you (scratch skin and get wheals a few minutes later) - have since age 11. Not everyone with dermongraphia has mast cell problems (most do not), though of those with mast cell problems, they are more likely to have dermographia .
     
  8. taniaaust1

    taniaaust1

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    In my case it didn't seem to be connected to anything to do with dentist but just connected to my ME/CFS in some way. I no longer have Morgollon's, I spent a lot of time trying to get rid of this by bicarb and salt baths bathing 4 hrs per day which helped a little (and the only way I could get any sleep as it helped relieve the crazy itching some, these baths I could feel caused my skin to release stuff, actually feel it coming out though wouldn't see it).

    Then one day I ended up having a large release of a very hard clear whitish substance from the pores of my skin which looked and felt like tiny grains of rice... and that seemed to be the turning point of the Morgellon's by the next day after this release it was gone.

    When I researched what came out of my skin is one of the more uncommon forms Morgellon's can take ( I put these in a jar as I was going to take it to a dr and try to get it analysed but by next morning it must of dissolved to the air as jar was empty. I'm sure they weren't something like tapeworm eggs which could of hatched and crawl away as the substance was hard like crystals so not eggs of any form).

    Ive read that fibreglass poisoning can also take this form of like hard tiny rice grains coming out of skin as it clears but what I had seemed to be more like parasitic or something going by behaviour, it had daily cycle to it eg far worst after about 11pm when I felt like things in and on my skin were going into a feeding freezy. Also things known to kill parasites helped for a very short time a bit eg white sage smudging, lavender oil and other oils which kill parasites put onto skin.

    I also noticed when I had the Morgellons, that others if they sat where I'd been sitting on the couch where I'd very recently sat, they'd start scratching and often end up getting up and sitting elsewhere (though they'd soon stop scratching once they'd moved)

    anyway.. Morgellon's is a very interesting problem but quite possibly there are different types of it (I never noticed the more common in it black specs or the fibres though I never looked at my skin under a magnifying glass). If you want to discuss this more send me a pm cause we are taking the posters thread off track.

    Yes I have the hyperandregnergic kind of POTS due to the ME. There was a study done on those who had POTS with swinging high BP. They found that everyone or near everyone with these things (I remember it was above 80%.. it may of been all in the study) on testing in this study they found they had a mast cell disorder.
     
    Last edited: Dec 11, 2016
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  9. anciendaze

    anciendaze Senior Member

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    This is a complex question, and I am just coming back on-line after a struggle with several computers. I'll give it more attention in the morning.
     
  10. Hip

    Hip Senior Member

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    The fact that hyperbaric oxygen therapy (HBOT) does not help ME/CFS very much seems to indicate that oxygen shortage is not the issue in ME/CFS.

    Hyperbaric oxygen therapy (HBOT) uses high ambient pressures of up to 3 atmospheres to dissolve more oxygen into the water component of your blood. HBOT increases the amount of dissolved oxygen by a factor of around 20 times, meaning that with HBOT, up to 30% of the oxygen carried in your blood is oxygen dissolved in the water, and the other 70% is hemoglobin-bound oxygen carried by red blood cells. More info in this post.
     
  11. Cohen2

    Cohen2 Senior Member

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    I certainly relate to feeling a lot worse for the first few hours after sleeping including naps. I'm usually in a confused panic and have to spend time trying to relax and get in tune with reality. I do have very vivid dreams which doesn't help. Physically I feel a lot worse as well.
     
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  12. Skippa

    Skippa Senior Member

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    Does this not support that oxygen AVAILABILITY is not the problem, rather a mitochondrial inability to use said oxygen? Eg, we are back to a mitochondrial dysfunction here?

    Or a very loosely termed "melatonin intolerance" or cortisol?
     
  13. lansbergen

    lansbergen Senior Member

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    I think of to much oxygen being used to make superoxide which after some reactions becomes hydrogenperoxide to fight intruders.
     
  14. TrixieStix

    TrixieStix Senior Member

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    I have Fibromyalgia and now severe ME/CFS as well and it is normal for me to always feel my worst for the first hours after waking up. I always feel my best later on which seems to be the case for many others as well.
     
  15. duncan

    duncan Senior Member

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    As you know, @LHCTom , we share several common elements in the arc of our diseases. It would seem still another is an abnormal CO2 value - only mine consistently comes in as low.

    Not quite sure what role CO2 plays - as a marker or otherwise - but it's of at least potential interest, or perhaps should be. It is to me, and I find some of the explanations I have been offered (e.g. hyperventilating) unsatisfactory.
     
    Last edited: Dec 12, 2016
  16. LHCTom

    LHCTom

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    As you know, @@LHCTom , we share several common elements in the arc of our diseases. It would seem still another is an abnormal CO2 value - only mine consistently comes in as low.

    Not quite sure what role CO2 plays - as a marker or otherwise - but it's of at least potential interest, or perhaps should be. It is to me, and I find some of the explanations I have been offered (e.g. hyperventilating) unsatisfactory.


    Are you referring to the "total CO2" on a metabolic panel? How low? The typical range is 23-29 Meq/L. It is actually is a measure of bicarbonate which is what CO2 is converted to by the kidneys. CO2 levels in the blood are very fleeting since they change with every breath. So by measuring bicarbonate, one is measuring the CO2 over time that accumlates to bicarbonate. Bicarbonate (HCO3) is a base and the kidneys use it to buffer acidity in the blood to keep our PH between 7.35 -> 7.45. If our PH goes below this range, we are in acidosis and above in alkalosis. Those are both potentially life threatening. There is a fairly complex control system with the kidneys and lungs as the biggest players that regulate our PH. The only proper way to evaluate if you have acidosis or alkolosis is to have an Arterial Blood Gas test.

    Abnormal levels of "total CO2" or bicarbonate may be indicitive of any number of conditions depending on how low and range through:
    If you have a couple of metabolic panels, you might calculate your Anion Gap just a check. The The anion gap is the difference in the measured cations (positively charged ions) and the measured anions (negatively charged ions) in serum or plasma. In order for your PH to be in the normal range of 7.35-7.45, there must be a balance of anions and cations ( electrolytes). The anion gap calculation can provide information on whether you are acidic, normal or alkaline and your control systems are unable to compensate.

    For example, athletes load up on bicarbonate before a race to try and provide a balance against the lactic acid which will accumulate in their muscles during a race. This is ok for someone healthy but our bodies do the same thing to tightly manage our PH. Our cells operate on proton pumps and electron transport chains and a variety of charge based receptors. They rely on a normal PH in the same way electronics rely on a good ground. If one's blood in vivo PH goes way outside normal, the body will die.

    An Anion Gap calculator http://reference.medscape.com/calculator/anion-gap

    The formula is quite simple and is (Na + K) -(Cl+HCO3). The normal range is 8-16.

    From a metabolic panel, just take the (Sodium + Potassium) - ( Chloride + total CO2) = AG

    If your AG is way outside this range, you should ask your doctor about it.

    Just thinking out loud: A low bicarbonate seems to imply the "stores" for PH balancing are low. But why? It could be that your breathing is so efficient that you are expelling CO2 at such a fast rate, little bicarbonate conversion for buffering is ocurring . That might be why you were told Hyperventillation. But that's only one explanation. What if there is a problem with CO2 -> bicarbonate conversion? What if your kidneys are struggling to do the conversion? What if the bicarbonate is being used up to compensate for an unknown acid source such as Lactic Acid from your microbiome or any number of possibilities. If there is an unusual acid source in your body, it will try and push your PH lower. But the kidneys will use the stored bicarbonate to neutralize it bring the PH to normal. So your bicarbonate stores could be exhausted which could imply a low PH or some kind of acidosis which is a serious condition if the source isn't corrected. Or it may be nothing.

    I'm not a doctor so you should discuss this with your doctor but I've been through the acid base evaluation so have a loose understanding of the mechanisms.
     
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  17. duncan

    duncan Senior Member

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    The stated range in at least two of the labs I have handy is 22 to 29, and I have been coming in pretty consistently at 21 or 22. I've been flagged as out-of-range low at least three times in the last 18 months.

    I don't hyperventilate, and I am amused when ME/CFS experts throw that out there (I've had three solid experts offer that). Imo, it holds about as much merit as my OI is caused by stress.

    Thanks for the insights. I will see if I can wrap my head around the math. Doubtful. I do so out of curiosity, not under any illusions you are a doctor, and I also am appreciative of your input with that understanding.
     
    Last edited: Dec 12, 2016
  18. anciendaze

    anciendaze Senior Member

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    @LHCTom

    Still trying to get my head around your medical history. There is no question your metabolism is way out in left field. You do look like a classic case of Naviaux's hypometabolic state. What else is going on is a real question, and unfortunately, there are way too many possible causes.

    In terms of infectious agents, I see spirochetes, intestinal bacteria, parasites, fungi and yeast. I did not see mention of toxoplasma gondii, but the association with cats makes that a possibility. I would not be surprised to see high titers of viral antibodies, if your immune system were in good condition, which I doubt considering those multiple infections. I wouldn't be surprised if your immune system has been throttled down to avoid autoimmune disease.

    That foot drop at the onset is a clear sign of some neurological problem, but what? MS?

    If we are considering unusual infectious agents affecting both nerves and immune response I would wonder about HTLV. I'm sure you've been tested for HIV, but testing for HTLV remains rare, and usually depends on antibody response, which seems to be impaired.

    ("We've narrowed things down. It's either an RNA virus, a DNA virus, a retrovirus, a spirochete, a bacillus, a parasite or two, fungi or yeast.")

    Some clusters of symptoms and signs you mention go along with mast cell activation disorders, particularly that Imidazoleacetic Acid being way out. Have you had other tests specific to mast cell function? This looks like a case of chronic immune activation firing in many directions.

    Other patients I've heard from with that range of gut problems, sleep disorders, etc. have inherited connective tissue disorders. These can range from rare (EDS) to extremely rare (HKPP). That last is connected with a potassium channelopathy. Many have had surgery to reduce apnea, and quite a few of these were not completely successful. Do you have trouble swallowing at present?

    You have described a complex case with multiple layers of pathology. If present day medical professionals can't get to the bottom we need a new generation of doctors. Something is obviously wrong.

    As always I am not a medical doctor, and the opinions I express are merely my own.
     
    actup, taniaaust1 and perrier like this.
  19. junkcrap50

    junkcrap50 Senior Member

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    WHOA! I have never heard of a case of Morgellon's being cured! Wow! Is true? I believe that's incredibly rare. Even more rare than CFS being cured. What was it that did it? Can you point to any one thing? What do you believe Morgellons to be?

    @Hip, is there a study that you're referring to that says HBOT does not help ME/CFS? Because, I would beg to differ. It's been the only thing that has completely reversed my and my dad's CFS. However, it did not have any long standing effects. I felt "cured" for about a month and then progressively worsened. I just couldn't afford to do it more and it wasn't sustainable. It took ~80 dives @ $100 each to be "cured." My HBOT doctor said he has a few patients that would come back for "tune-ups" every 4-6 weeks, with each tune up 3-6 dives. I just can't afford these monthly tuneups, or else I would.
     
  20. roller

    roller wiggle jiggle

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    if anything of hyperbaric helps, then the baric part...

    its imo dangerous, even, as it may kill only a fraction of the parasites.

    what we need is cluster-bombing.
     

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