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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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Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

Discussion in 'Active Clinical Studies' started by lartista, Mar 25, 2014.

  1. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Yes I know of the illness, I have it...

    The link you provided is very useful. However it is not indicative of Pridgens current trial which we are awaiting the publication of. The link describes of many combinations tried by Pridgen. The Valaciclovir and Celecoxib combination from the link is definitely NOT the one Peidgen found success with. I know this because he said it himself....

    Therefore you cannot draw ANY reasonable conclusion without waiting for the publication...
     
  2. lartista

    lartista Senior Member

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    Ok I hear what you think... I think differently... we can agree to disagree... My guess is you did not open ALL the links and read all the papers listed here... I can not guarantee anything. I am not a doctor but I do know that many people are suffering with no treatment at all.

    VALACYCLOVIR is winning favorable reviews over the other two from Lerner and Montoya. SO how hard is that one too figure out...Pridgen eliminates one of the other three by his own admittance... That leaves two... do the research about the other two, see the complications, the expensive and what the drug reps are saying... I am not advising anyone to do anything here... I am trying to educate others to look for themselves.

    Is your advice for everyone to sit and wait three to five years for this drug cocktail? Dr. Nancy Klimas is all about trying different mixes... So under a doctor's direction, why would someone in pain not print the reports linked above and carry them to their doctors? Valacyclovir which was a miracle for me was not for my friend... It is all about trying mixes till you get to a remission, but what do I know.... I learned this from Klimas and she got me into remission. How about you?
     
    Last edited by a moderator: Apr 6, 2014
    heapsreal likes this.
  3. maryb

    maryb iherb code TAK122

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    @lartista
    I'm interested in what you're saying but I don't have the mental energy to read through a lot of links, if you ever have the time a brief synopsis would always be appreciated. I don't expect you to do this but just saying how it is for a lot of us.
     
    Jon_Tradicionali likes this.
  4. lartista

    lartista Senior Member

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    Hi Mary, That was no tdirected at you. Do you have a specialist? Do they have you on any drugs and which one? Have you had a natural killer cell test done?

    The first round with Klimas I was on Valtrex, Low Dose Naltrexone and Imunovir. All three worked and got me into a solid remission, not cured but remission. Then after having to get off all three do to a seconc heart surgery, I CHOSE to stay off all three as long as I could. I then CAUSED MYSELF A RELAPSE which I am trying to get out of. I was then diagnosed with CVID which made IV IGG enter the picture.

    Klimas last month had me start loading LDN and imunovir but NOT valtrex (which I was sad about as I loved VALTREX). She wants to get me back in IGG with the 2 above drugs to see if we can get my system responding to those before adding Valtrex... I hope that helps. Good luck, Francesca
     
    Last edited by a moderator: Apr 6, 2014
  5. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    No let's not agree to disagree.
    Please convince me of your opinion instead.

    I have looked through all the patented combos from Pridgen.

    No one can guarantee anything.

    My advice is to wait until next week for Pridgens publication before drawing any conclusions. I'm finding it difficult to wait 3-5 days, I couldn't possibly advice others to wait 3-5 years.

    Me? I've never seen a CFS specialist. Purely because if there was anything they can do, we would have known about it.
     
  6. maryb

    maryb iherb code TAK122

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    @lartista
    I've just looked through some of my tests, can't see Natural Killers cells anywhere - does this relate to a certain number eg.CD57

    I have high Cd4a - low Cd3a
    high IL6s and nagalase 2.5
    all indicative of something - just wish I knew what:(
     
  7. SOC

    SOC Moderator and Senior Member

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    My daughter has been 95-100% functional (85% functional if she gets an infection or something reactivates) under the care of Dr Rey, Dr Klimas' associate. I'm also much better, having gone from bedbound to partially housebound (0 to 5 on the scale used in PR profiles).

    If by remission you mean without symptoms and not taking any symptomatic treatments, than we can't call it a remission. Daughter continues to take both medications and supplements to maintain her functionality. Still, we're happy that she can lead a normal life with ME, but it does require that she is carefully monitored and that she keep up with her treatment protocol.

    I firmly believe that following the treatment by one of our top ME/CFS specialists, many (not all) PWME can significantly improve quality of life and functionality. I don't believe we have a cure, yet.
     
    Valentijn likes this.
  8. SOC

    SOC Moderator and Senior Member

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    There are subclasses of herpesviruses. HSV (hhv1, hhv2) and VZV (hhv3) are alpha-herpesviruses. CMV(hhv5), HHV6, and HHV7 are beta-herpesviruses. EBV and HHV8 are gamma-herpesviruses. They target different cells, have different latency sites, and are susceptible to different antivirals, although antiherpetics work to some small degree for all of them.

    Valcyte works for beta-herpesviruses. Valtrex works for alpha-herpesviruses, to a lesser degree for gamma-herpesviruses, and not very well for beta-herpesviruses.

    If Pridgen is only looking at HSV, he's not going to try Valcyte.
     
    NK17 likes this.
  9. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Of course I am very happy for you and your daughter.

    But yes, by remission I meant 'temporary cure'.

    Every time we get a new hope (e.g xmrv) and are failed, the dream of a cure becomes just that....a dream. And it's so depressing.
     
  10. SOC

    SOC Moderator and Senior Member

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    NK's are CD56, I believe. That's what my lab report seems to say.

    I have high CD4 and low CD8, which I was told means my immune system is exhausted from trying to fight a chronic infection.

    There's been some discussion at PR about high IL6. My lab reports says
    My IL6 has been consistently normal for at least 2 years. That might be because something I'm taking keeps it under control or because I'm very careful about not overdoing physically.
     
    NK17 and maryb like this.
  11. maryb

    maryb iherb code TAK122

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    @lartista
    its okay I've found my results re NK function.
     
  12. maryb

    maryb iherb code TAK122

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    @SOC
    yes it all points to the body fighting a chronic infection, just figuring out which one in my case:(
    As always so glad to hear you and your daughter still okay - we will have to take extra care of ourselves forever I know.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The high nagalase probably means that some infection(s) (or viruses?) have "messed with" your ability to activate macrophages. That is a pretty high value for nagalase.

    Sushi
     
  14. SOC

    SOC Moderator and Senior Member

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    I think you might mean valganciclovir (Valcyte) which is the antiherpetic Drs Lerner and Montoya are studying and using the most. It targets CMV and HHV6 rather than HSV and EBV.
     
  15. maryb

    maryb iherb code TAK122

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    @Sushi
    I know its worrying isn't it? had it done twice now 2.3 and 2.5
    I just have to hope someone finds the root cause and we can get on with treating it.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Going off-topic here, but just for a sec! :cool: We can go to another thread if we want to discuss it more.

    Treating with GcMAF, my nagalase has, very slowly, gone from quite high to normal. Not for everyone I know, but it has helped me.

    Sushi
     
  17. liquid sky

    liquid sky Senior Member

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    Iquitos wrote:
    Whether FM and ME are the same is questionable, but people do commit suicide due to the extreme pain of FM. Unfortunately.
     
    Last edited by a moderator: Apr 5, 2014
  18. maryb

    maryb iherb code TAK122

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    @Sushi
    I think Gcmaf is something to consider with my doctor for sure?
     
  19. SOC

    SOC Moderator and Senior Member

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    Dr Rey says it might be a pathogen that is currently unknown. I've been tested and treated for a bunch of pathogens, and improved significantly, but I'm still not well and my immune tests still suggest an on-going infection.:ill:

    Daughter and I both are back on Valcyte, fighting a reactivation of HHV6. :( So, as you say, ME is a continuing battle to maintain functionality.
    If you mean there's no cure, I will agree with you. But to suggest there isn't anything the top specialists can do is ridiculous. There are many people with significantly increased functionality due to treatment from the top specialists. To do nothing because what is available is not a cure is suggests extremely black and white thinking -- if it's not a cure, it's not worth doing...?

    Before treatment by top specialists, I was a 0 on the PR Activity Scale. Now I'm a 5.5 -- able to take care of my basic needs and earn some income. That's a huge difference. My daughter was about a 5 and heading downhill rapidly. Now she's a 9 or 9.5, in graduate school, working, and engaged to marry. She wouldn't be living a relatively normal life without the treatment from top specialists. We're not the only ones who have significantly improved functionality after treatment by top specialists. All you have to do to know that is read here at PR. To say there's nothing top specialists can do is to ignore reality.
    No, it's been pretty well established that CFS and FM are NOT the same illness. They may be closely related and a significant number of people appear to have both, but that does not make them the same illness. The same medications do not necessarily work for both. Cymbalta and Lyrica, for example, can relieve all or most of the symptoms of FM without making a significant dent in most ME symptoms.

    FM does not have PEM. FM (only) patients benefit from exercise, ME patients do not.
     
    Iquitos and Valentijn like this.
  20. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Ok let me explain a little here.

    If by going the scales that you use, I've never been under a 7 or 8.

    Never been housebound.

    Never been bedbound.

    But that's because I don't allow myself to stoop that low. I feel fatigued? Damn I'll just start doing star jumps. I feel depressed? I'll go out in the sun.

    That's why I've only ever been interested in a cure. It's the only thing worth my while.

    To say its extreme black and white thinking and ignoring reality is an ignorant statement within itself.

    As for CFS and FM. Considering this thread is about Pridgen, HSV infection according to him causes BOTh CFS and FM. So I am not the only one who believes they have the same pathogenesis.
     

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