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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Allergy / Mast cell treatments

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    I know exactly what you mean about recognizing symptoms as being part of a real diagnosis.

    I just saw my hands flushing when standing and feeling faint for the first time about a month ago.

    I knew I had orthostatic hypotension because my bp drops after 3 minutes but
    Finding out I had pots explains why I feel like crap after being upright for about 10 minutes.

    I've had 4 - 3 minute pmttts at drs offices but never a longer ttt that showed my hr races after being
    upright 10 mnutes / aka pots. Not only would this have helped explain my disability, it would've helped me relax knowing
    I just needed to lay down to stop this. I can't believe a ttt wasn't done in 1992 when I first saw a cfs specialist.
    Or that it's not required testing for me/cfs. Not that everyone has it but it should be identified.

    Thanks for the well wishes. Tc .. X
     
    camas likes this.
  2. antherder

    antherder Senior Member

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    Hi Deborah,

    Just wondering if you have any knowledge about the relationship between mast cell degranulation and copper. Is it common for people with mast cell disorders to have lower than normal levels of ceruloplasmin and/or high levels of toxic unbound copper? Are mast cell disorders classified as a malabsorption state, ie, is low iron also common, etc?

    I know ceruloplasmin is needed to break down histamine, and that I have some sort of copper problem, and also some sort of systemic mast cell problem too (I am now taking oral sodium cromoglycate which is reducing my GI symptoms) but I haven't been able to find out which is the primary condition. I'm confident I've had both issues since early childhood.

    Any thoughts on this would be much appreciated. Thanks.
     
    Sherlock likes this.
  3. Christopher

    Christopher Senior Member

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    What is the point of this? To help allergy symptoms or fatigue?
     
  4. xchocoholic

    xchocoholic Senior Member

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    Fatigue can be an allergy symptom. The point of some medications is to counter mast cell mediators that are released by overactive mast cells and causing a wide variety of symptoms. Other meds are said to work on stopping mast cells directly.

    I'm too tired to go over the list of mast cell symptoms but I'm sure it's in this thread. Or if you googled mast cell disorders, you'd find it.

    tc ... x
     
  5. Christopher

    Christopher Senior Member

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    Thanks. 17 pages is a lot to go over.
     
    xchocoholic likes this.
  6. xchocoholic

    xchocoholic Senior Member

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    camas likes this.
  7. Christopher

    Christopher Senior Member

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    Thanks x. I appreciate the info. I tend to get overwhelmed and frustrated easily.
     
  8. xchocoholic

    xchocoholic Senior Member

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    http://forums.dinet.org/index.php?/topic/21174-mcas-confirmed/?hl=mast

    I do too. But if I read something several times I get it eventually. It took months for this to sink in.

    This one might be easier. Actually this is the thread that helped me finally realize I had a mast cell problem. tc ... x

    Ps. You may find that taking some of these meds and changing your diet to eliminate your triggers will help you get less frustrated. I'm on 5 mg Wal-zyr several times a day and 1 - 2 tsp of children's dye free Benadryl at night.

    A paleo / wahls type of diet works best for me but right now it's too hard for me to keep up with.
    Dr. Teri Wahls has a great TED video on this.
     
  9. camas

    camas Senior Member

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    Hi Christopher,

    To add to the links that X has already given you, here's a list of symptoms that can result from mast cell problems. The first link in my signature will take you to some videos that do a pretty good job of explaining mast cell activation.
     
    xchocoholic and merylg like this.
  10. Questus

    Questus Senior Member

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    I had my last appointment with the Chairman of Oncology at M D Anderson on Thursday for my work up for Mastocytosis.

    (Please don't confuse Mastocytosis with MCAS)

    This workup was for Mastocytosis.

    My result to the 24 hour urine methylhistamine test was 188. A positive test for Mastocytosis is 200.

    So I was 12 points under a positive test for Mastocytosis.

    http://www.mayomedic...erpretive/83011

    I asked him at what point so they consider the test positive for Mastocytosis? (Meaning is it like other blood tests where 'a little bit high or a little bit low is not meaningful?')

    He said 200. Eek. Meaning I 'passed' the test my 12 points. About 5%.

    That's a very high # by any measure, including theirs. So I'm negative...For now, by a hair. Yeah!

    He was 'not satisfied' though with my very high norepinephrine level of over 1400 being just a symptom of hyperadrenergic POTS. I asked why, and he explained that a lot of cancers have a very high norepinephrine level, (not just pheo's)...

    He referred me to an endocrinologist at MD Anderson for further testing.

    So yes, obviously I have MCAS, but compared to Mastocytosis, that's a good thing.

    Mastocytosis is a very, very serious and rare disease caused by the body making too many mast cells, and they clog up internal organs and the disease is associated with very serious illness and cancer.

    MCAS is simply 'mast cells behaving badly'. A chronic issue, but not 'deadly', so of zero interest to a cancer center like MD Anderson.

    I 'passed' for now. His last words to be were, 'Call me if you need to, but I hope you don't need to.' Indeed.

    It's been a long journey. Am still on it with the ongoing search for why my norepinephrine level is so crazy high, (other than having Hyperadrenergic POTS). Will see the endocrinologist at MD Anderson in the next week.

    Best,
    Questus
     
    charlie1 and merylg like this.
  11. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Have you looked at MTHFR (histadelia) and pyroluria (low zinc = high copper)? There are not infrequently mentioned together, but I haven't yet dug into the purported mechanism.
     
  12. SOC

    SOC Senior Member

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    I'm behind the curve in understanding this mast cell disorder stuff -- still doing the research -- so I'll try not to ask too many questions. There's one I'd kinda like to get straightened out right away, though. What kind of dosc do you see to get norepinephrine levels tested and/or whatever else is needed to identify a mast cell disorder? Allergist/immunologist? Endocrinologist? Something-I've-never-heard-of-ologist?
     
  13. camas

    camas Senior Member

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    I hope Questus will see this and can give you an answer. Those with frank Mastocytosis are usually diagnosed and treated by oncologists, but I have seen other masto and MCAS patients talk about being treated by allergists, immunologists, rheumatologists, etc. Unfortunately, like CFS, the specialists in mast cell disorders are kind of few and far between, so you have to do some hunting.

    If you have a doctor willing to work with you, s/he might be able to get some help from Dr. Afrin. Here's his latest MCAS Primer for Physicians.
     
  14. SOC

    SOC Senior Member

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    Thanks, that's a big help. :)
     
    camas likes this.
  15. antherder

    antherder Senior Member

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    Hi Sherlock,

    I did look into those a while ago, but can't remember much of what I read... I just got my SNP results so will have to try and work out if they can explain some of my problems.
     
  16. sandgroper

    sandgroper

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    I am interested in your use of CREON as I have been prescribed it. Have been a bit wary of taking it. Did you have many digestive symptoms and were you told to add probiotics as well?
     
  17. sandgroper

    sandgroper

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    I did not know that about glutem. i just had a big gluten and wheat challenge. It went on longer than i expected and now ihave mouth ulcers and cold sores. It was so easy to have bread again but that also meant adding back some dairy...so not sure if its the wheat the gluten or the dairy.
     
  18. sandgroper

    sandgroper

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    I have also been prescribed creon..and probiotics.....i just can't seem to manage the creon and not sure i want to do the probiotics as they can make some more ill.
     
  19. xchocoholic

    xchocoholic Senior Member

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    sorry I didn't see this till now. I'm still using creon but I find I still need to take
    either virastop or candidase or both if i eat significant amount of meat. It
    just sits in my digestive tract otherwise.

    I haven't noticed it making me feel any worse ... but, I just went through an
    episode of ruq pain that only resolved by going on a soft or liquid diet.
    I'm getting a little pain back if I try eating too many solid foods in a day.

    I wanted to update my status on mast cell treatments. Due to the ruq pain I
    stopped taking the Walzyr and Benadryl. I have no idea if the pain was connected
    but I had to stop these to see.

    My allergies didn't revert back to how bad they were prior to this treatment but
    I just had a systemic allergic reaction to Bactroban that probably wouldn't have
    been as severe if I'd been on allergy meds.

    The plan is to re-introduce wal-zyr slowly and take as little as possible. The Benadryl
    is slowing my thinking down too much so unless I'm having a severe allergic
    reaction I'm going to avoid it.

    tc ... x
     
  20. triffid113

    triffid113 Day of the Square Peg

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    I have read in multiple places that CITRATE inhibits stones. I admit I do not eat spinach very often as it is a known oxalate, but I do not in any other way deliberately avoid oxalates. In fact - aren't they high in tea? I have drunk tea like a fish for long periods of time (like a year) with no problem. I have taken high dose cal/mag supplements lifelong with no stones. I've had stone-formers warn me and scoffed, telling them I seem to be a sieve for cal/mag and the miracle would be if I ever get enough to make a stone. Whatever the reason, I've never had one.

    Rand56 told me it was citrate and I have ALWAYS favored the citrate form of cal/mag (I can in some subtle way feel the difference).

    So for instance you can find studies like this:
    J Urol. 1985 Jul;134(1):20-3.
    Prevention of recurrent calcium stone formation with potassium citrate therapy in patients with distal renal tubular acidosis.

    Preminger GM, Sakhaee K, Skurla C, Pak CY.
    Abstract

    Distal renal tubular acidosis is a common cause of intractable calcium nephrolithiasis. We examined the effect of oral potassium citrate therapy in 9 patients with incomplete distal renal tubular acidosis diagnosed on the basis of an abnormal response to an oral ammonium chloride load. Patients were studied during a control phase and after 3 months of potassium citrate treatment (60 to 80 mEq. daily). Potassium citrate caused a significant increase in urinary pH and urinary citrate, and a decrease in urinary calcium. The urinary relative saturation ratio of calcium oxalate significantly decreased during treatment, while that of brushite did not change. Potassium citrate also was shown to inhibit new stone formation. During a mean treatment period of 34 months none of the 9 patients had new stones, although 39.3 plus or minus 79.7 (standard deviation) stones per patient formed during the 3 years preceding treatment. The results support the potential clinical advantage of potassium citrate therapy in patients with distal renal tubular acidosis and recurrent calcium nephrolithiasis.

    Cell Biology – Immunology – Pathology

    Kidney International (2004) 65, 1724–1730; doi:10.1111/j.1523-1755.2004.00566.x
    Citrate inhibits growth of residual fragments in an in vitro model of calcium oxalate renal stones

    Karyee Chow, James Dixon, Sally Gilpin, John P Kavanagh and Popduri N Rao
    Department of Urology, South Manchester University Hospital, Manchester, United Kingdom
    Correspondence: Dr John P. Kavanagh, Department of Urology, Education and Research Centre, South Manchester University Hospital, Wythenshawe, Southmoor Road, Manchester, M23 9LT, UK. E-mail: Johnk@fs1.with.man.ac.uk
    Received 20 August 2003; Revised 28 October 2003; Accepted 3 December 2003.
    Top of page
    Abstract

    Citrate inhibits growth of residual fragments in an in vitro model of calcium oxalate renal stones.
    Background


    Alkaline citrate is thought to be helpful in reducing recurrences of calcium oxalate stones. The evidence for this is incomplete, there have been few good trials, all with their own limitations, and not all reported any significant benefit. In vitro studies are usually cited to support the clinical studies but these too have their drawbacks, in particular they relate to crystals and microscopic aggregates and not to actual stone growth. Here we test citrate in vitro using a model of macroscopic calcium oxalate stone enlargement.
    Methods


    Twelve calcium oxalate stones were grown at a time in a stone farm. Six were grown with 2 mmol/L citrate and six with 6 mmol/L citrate. Three protocols were tested; artificial urine, artificial urine with urinary macromolecules (UMM) from male controls and artificial urine with UMM from male stone formers. The stones were grown continuously for at least 24 days.
    Results


    In all three experiments the higher citrate concentration significantly reduced the growth rate of stones by more than 50% (P < 0.001). There was a small decrease in ionised calcium in the stone growth media (P < 0.001) and significant (P < 0.001) but small increase in pH (about 0.07 pH units). The inclusion of UMM also brought about a decrease in stone growth, particularly at 2 mmol/L citrate.
    Conclusion


    Citrate inhibited stone growth in this laboratory model. This was true both in defined media and with addition of UMM. This adds to evidence justifying the use of alkaline citrate in calcium oxalate nephrolithiasis.

    -------

    http://www.cmaj.ca/content/174/10/1407.short#T1
    This is a really good paper that goes over all factors in oxalate stone formation
     

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