The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Hale clinic. London

Discussion in 'General ME/CFS Discussion' started by gregh286, Sep 5, 2015.

  1. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    So here we go.
    Started with hale clinic london on friday.
    Initial blood analysis showed red cell clumping...distorted immune cells and excess fibrin.
    No surprise there as circulation is awful and high serum d lacate.
    Monday starts the treatment plan consisting of vit.c IV...ozone...mineral IV and alkali IV.
    On top of that a supplement regime.
    Will post any significant progress.
     
    Apple likes this.
  2. Eeyore

    Eeyore Senior Member

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    The excess fibrin is interesting. Did they test for fibrin degradation products (FDP), fibrinogen, or d-dimer?

    I have some reason to believe there are problems with coagulation and fibrinolysis in at least some ME patients, if not all.

    Have you had a sed rate (aka ESR, Erythrocyte Sedimentation Rate) done? This is a common, inexpensive test. Probably most of us have had it - but doctors are looking for increased ESR, not decreased - and I think that ESR may be decreased in ME patients. This is not my idea - many ME docs have noticed this over the years, and it's even on Medscape. My ESR's are very low.
     
  3. gregh286

    gregh286 Senior Member

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    Yea had many esr...all ok.
    Lot of congestion in blood she suggested.
    This makes for difficult curculation she noted.
    Clean up fibrin...improve red cells to single cell instead of clumps...should make improvement.
    Seen fibrin visually.
    Live and dry analysis was conducted.
    Evidence of bacterial infection also as little.legs coming from within red cell.
     
  4. Eeyore

    Eeyore Senior Member

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    What was your ESR? Docs will say it's ok if it's not high, but ME patients are more likely to be abnormally low, which won't show on the lab report as abnormal (some healthy people have low ESR's, but ESR's are abnormally low in ME).

    I'd suggest you get a d-dimer and fibrinolysis panel done - see if your doc will agree to that.
     
  5. gregh286

    gregh286 Senior Member

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    2mm/hr.
    Target is <10mm/hr.
    Clumpy blood should make high esr....according to what i read.
     
    Last edited: Sep 5, 2015
  6. Eeyore

    Eeyore Senior Member

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    An ESR of 2 is actually not at all common in the general population, but quite normal in the ME population. Mine are often 0, but sometimes as high as 2 (pretty much never higher, I go from 0-2 generally).

    I bet you'd find abnormalities on a fibrinolysis panel. I have.

    One of the primary contributors to the ESR is fibrinogen. This is an inactive precursor molecule that can be linked together to form a fibrin clot. If you are making too much fibrin, your fibrinogen can become low as it is used up to make fibrin (consumption coagulopathy). You'll likely show elevated d-dimer and FDP.

    I note in your sig that you have angioedema (idiopathic). This is very interesting to me - as I've been looking at polymorphisms in the complement C1 inhibitor gene possibly contributing to complement activation and immune complex deposition in ME patients. The classic manifestation of C1-Inh deficiency is hereditary angioedema (this does not mean that your parents had to have it - they can be carriers).

    Have you had Complement C1-Inh levels or other complement function tested? It seems to me this would be worth it. Complement C1 is part of the classical complement pathway, and is the first step in the formation of the C3 convertase in this antibody-dependent pathway. I would look at a CH50/CH100 test to evaluate the activation status of the classical complement pathway. I suspect it may be activated in your case. I'd also look at complement C4a and C3a (not just C4 and C3 - the a's are the cleaved regulatory domains that can accumulate when complement is activated).

    You may have a more clearly definable medical illness than has so far been discovered. Right now this is very speculative but if you can convince a doc it would really be worth looking at imo. If you have C1 inhibitor deficiency, it has accepted treatments available.

    Have you had 23andme done or other SNP testing done?

    I'd like to have Dr. @Jonathan Edwards read over your case - he might be able to offer some insight (I'm not a doctor!)
     
    maryb likes this.
  7. gregh286

    gregh286 Senior Member

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    Hi.
    Yea ive had 23andme done. Didnt make much sense of it.
    Was tested for HAE....negative. c1 inhibitor negative.
    Ill certainly look into the other tests..many thanks. Never heard of them.
     
  8. Eeyore

    Eeyore Senior Member

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    I think that there are more subtle mutations in the C1-Inh protein that may predispose people to angioedema. I don't think it's that simple.

    If you feel like you wouldn't mind doing so, I'd be interested to look at your 23andme C1 inhibitor SNPS. This is the SERPING1 gene.
     
  9. gregh286

    gregh286 Senior Member

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    Thanks eeyore.
    Ill send you 23andme.
     
  10. Eeyore

    Eeyore Senior Member

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    Thanks - that would be great - very interesting.
     
  11. redrachel76

    redrachel76 Senior Member

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    I went to the Hale clinic back in 1996-7 ish. This thread prompted me to look at their website. All the doctors I saw then, are not there anymore.

    I did not get any help from them except for their vitamin IV's. If they push anything like neurolinguistic programming on you, don't take it. They pushed that on me and I regret believing them.

    What is alkali IV?
     
  12. gregh286

    gregh286 Senior Member

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  13. Apple

    Apple Senior Member

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    Hey @gregh286 - Thanks for sharing. Have you travelled from N.Ireland to go there?

    What kind of practitioner/doctor are you seeing? There seems to be a bit of a mixed bag of treatments/people on their site.
     
  14. gregh286

    gregh286 Senior Member

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    yea apple. What the heck....may as well try everything for my own sanity.
    Yea I travel from NI to there.
    Seeing the person in the link...Katrin Hempel.
    Brings a lot of CFS technique from Germany with her.
    Focus heavily on BioRes..IVs...supplements..Ozone..and continual assessment with live blood analysis.
    She noticed my blood does'nt colour up properly when Ozone added. And she aint quacking cos she' the 3rd doc to notice it.
    No shock there as certainly an RBC O2 problem with me...VO2 max test etc..appalling..
    She exceptionally knowledgeable on CFS compared to most other muppets Ive been with....some look at you like you're talking swahili.
    Anyway...4 sessions. Will judge after that. 2 per week...2 weeks.
    BTW it is expensive but I feel it warrants a try out.
     
    Last edited: Sep 8, 2015
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  15. Apple

    Apple Senior Member

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    Interesting! Thank you. I wasn't aware that non-doctors could do IV's.

    Well Good luck! I hope you get some relief from it. I guess you are staying in london for 2 weeks? Are you well enough to do any touristy stuff?
     
  16. gregh286

    gregh286 Senior Member

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    thanks apple.
    no i go over and back. would need to re-mortgage house to stay in london 2 weeks.
    Been 100's of times on business so dont need to see anymore of it:)
     
    maryb likes this.
  17. gregh286

    gregh286 Senior Member

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    ok, so I wanted to give update on progress at hale clinic, london.
    I have been treated there just over 3 weeks.
    To give you idea where I was when I started I was started my Vo2Max was 12.9ml/min with maximum ventilation 30/l/min. I was somewhere around 30-40% of normal function.

    Today, i would say i have improved quite dramatically to maybe a 70-80 on Bells CFS scale. I much..much more cardiovascular ability, stamina and overall feeling of well being. Its been quite a dramatic turnaround in a short period of time. Pulse feels strong, tingling and numb extremities has vanished.

    I attach 2 blood slides, the first from initial meeting and the latter from the latest session after 3 IV infusions.
    As you can see quite substantial difference, slide 1 RBC clogged on top of each other, slide 2 free and easy moving.
    Huge reduction in fibrin....something @Eeyore touched on. I had borderline low fibrogen @ 169 (x1000 / uL)....which meant possibly high blood fibrin.
    Additionally, the analysts suggested improvement in WBC functionality from slide 1 to 2. (shape and movement)
    As there is lower blood congestion now,,,improved circulation and so forth.

    I was drawn to Hale originally as a follower of Dr Les Simpson old work on RBCS: http://cfidsreport.com/Articles/researchers/lessimpson.htm

    Onto the treatments...I have had 4 treatments now each time consisting;
    1. IV alkalising mix
    2. IV Vitamin C (23g per dose)
    3. A central nervous system injection (not sure of active drug...makes your saliva glands open fully,,body flushing and double vision for 30 secs)
    4. Ozone Therapy
    5. Gluatathione injections

    Bioresononce machine still detecting streptoccus active infection in spleen.
    They believe the strep is making spleen overworked and thus issue with immune cells...
    When there is issue with immune cells....it is turning on and off AMPK..hence cycles of wellness (in cfs context :) ) and crashes.
    So the plan to continue with immune targeting and cell function improvement,,,,increase to nk cell count also.

    Supplement protocol is fibrin dissolvers, alkaline drink mixes, amoxicillan (for strep), High dose vit D (50,000ui Day) to stabilise immune system. (similar protocol to the brazil doc: http://www.vitamindwiki.com/Video by Dr. Coimbra – 95 percent of auto-immune cured with vitamin D in high doses - April 2014)

    Also, paleo diet to keep AMPK boosted as they operate better in starve mode which body thinks its in under ketosis.
    Other supplements include silvercillan, quercetin, reservatrol, pine bark extract.

    Most the supplements are german,,,hale clinic suggest CFS supplements and treatments vastly superior there.

    So, so far so good...I hope to build on the excellent start.
    They say in past experience it takes 2-3 months for immune system to restore complete functionality.
    Going by the start i had i dont have any reasons to disbelieve them at this point.
     

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    Last edited: Sep 21, 2015
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  18. Theodore

    Theodore Senior Member

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    Hi @gregh286

    I was wondering how is it going on for you? Thanks
     
  19. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi Eeyore, I saw you mentioned low sed rate (ESR) and you're spot on that usually unless a patient has an active infection, the ESR can be normal or even zero (which is abnormal!).

    If it's of interest one test I find that's useful to overcome the 'no evidence' of inflammation paradox in ME blood is to look at HS-CRP (cardiac risk marker) and Blood Viscosity. Also I do a blood film to look for activated Lymphocytes. This is expensive but I do these with an FBC/CBC, as usually the most is shows in ME is marginally elevated WBC and monocytes which isn't enough to convince a doctor you really do feel infected or inflamed!
    Also I measure Fibrinogen, which in myself, is always elevated also.

    I measure Fibrinogen as a subset of ME patients (or possibly Lyme variant ME, as Bartonella infects lining of blood vessels), there appears to be evidence of chronic endothelial inflammation, hence when possible I get a battery of cardiac risk markers thrown in: Fibrinogen, HDL/LDL ratio, Triglycerides, Lipoprotein A, Oxidised LDL and more recently you can source a LP-PLA2 which is a measure of the actual level of enzyme arterial plaque rather than a 'risk' by just looking at Cholesterol level.

    With this evidence, we can see that PWME do have inflammation in our blood as well as our nerve cells (microglia).

    Cheers.
     
    Last edited: Oct 23, 2015
  20. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi. Those are interesting slides, thank you for sharing. I wondered, do you know please if that is a phase contrast/darkfield microscope image? The pictures look backlit, and better than what we can get at home with a usual microscope.

    Did the Hale Clinic let you have your before and after images on a DVD?

    (Here's the clinic for people who don't know)
    http://www.haleclinic.com/conditions/condition/222-chronic-fatigue-syndrome

    or was it perhaps, Erol, the gentleman in Harley Street with his 'Live blood analysis'?
    http://www.livebloodtest.com/

    or another lady?
    http://www.londonnaturaltherapies.co.uk/Live-Blood-Analysis.html

    Sorry to ask, I just wondered who you would recommend as there appears to be a few people with a microscope, but I'm not aware if most let you 'see' your images and take them home afterwards, which looks quite fun.

    If I remember correctly infections can alter the acidity of the blood making the environment more hospitable for them (pathogens) and less for you (the host!). It would make sense if you had poor nutritional levels in your blood, that by using IV vit/minerals the body would have more chance to fight infection. E.g. using a 'Myers Cocktail' IV, which as you know has been used in CFIDS in America for years, and more recently with fatigued celebrities.

    Thank you.
     
    Last edited: Oct 23, 2015

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