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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Klimas is GONE from UM !

    As Cort said, I wouldn't worry too much. I've been a Nancy patient at U of M for 15 years and she told me in August that she was negotiating with another university in South Florida which would provide her with better access and funding. I'm not going to name the university because it hasn't...
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    High calcium-parathyroid

    Has anyone had high calcium levels associated with their CFS/ME. For the past 2 1/2 years, I've had slightly elevated calcium between 10.4 and 10.6 along with some other markers that may be indicative of a parathyroid adenoma. My endocrinologist has been watching it and is finally doing some...
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    Comment by 'goldiland' in 'This disease s*cks'

    My gut feeling is that Klimas or another excellent researcher/geneticist/immunologist will figure out the most important question of what the hell this is within the next five years. I'm participating in an exercise study at U of M through Klimas which is going to measure immunological...
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    goldiland

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    This disease s*cks

    I am sorry to vent my frustrations but have thought a lot about this the last couple of days and am just disheartened by all of it. This has got to be the stupidest illness there is.....one characterized not by what it is but by what it is not. I was with Klimas last week and we went through...
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    Dealing with lost career dreams and goals

    Reading all of your posts really resonates with me. My frustration and guilt with this illness is with me every day. There are many people on this site who have come to terms with things and I very much envy that attitude and perspective. I was 25 when I got sick, got better after going out of...
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    B-12 - The Hidden Story

    Rich and the Group I just wanted to let you know that N. Klimas is looking at your protocol and told me that she reads a lot of what you send her. She thinks there is definitely some relevance to the theory although she also mentioned to me that methylation occurs in all of our cells and she...
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    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    For those of you who are Senifeld fans .... if you're getting upset reading some of this inane garbage, just say Serenity Now.
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    I think my CFS is gone....back to work?

    JD I got sick about 12-13 years ago, went out of work for a year and then went back and worked 10 years, ultimately in a senior management position in large public accounting firm. I pushed way past what I should have and relapsed about 2 years ago. I'm finally at a point again where I feel...
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    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    For those of you who remember the alka-seltzer commercials, I think we should start awarding T-shirts which say, "I can't believe I read the whole blog" for anyone who actually got through the 290 or so comments. The obvious problem with this illness is that we don't know what we have and how...
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    Marshall Protocol

    Can someone please educate me regarding the significance of Vitamin D levels. My 25-Hydroxy level is low (24 with a reference range of 30-100) and my Calcitriol (1.25) is high (76 with a reference range of 10-75). My basic understanding is that elevated Vitamin D 1.25 levels are consistent...
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    sleep meds

    Heapsreal, When I relapsed a couple of years ago, I had highly elevated cytokines, low NK function and reactivated viral titers to Epstein Barr and HHV-6. The effect of these immune markers resulted in sleep dysfunction among other symptoms. Ultimately I tried Xyrem (Klimas prescribed for...
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    Am I the only one who hopes that XMRV is not the cause of CFS/ME

    Trying to figure out what you want the cause of CFS to be is like having dinner with Khartman from South Park, Osama bin Laden and Larry Craig.... the discussion won't disappoint but the outcome is never going to be good (especially for Larry Craig with that threesome) I don't think it...
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    My AZT + RAL Trial

    Sue, I've been following your posts periodically since you started and admire you for trying to do something to help your circumstances even though the result is so uncertain. In my humble opinion, I would really encourage you at this point to get yourself to a good CFS specialist who can...
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    Why the increase in excitotoxity on the methylation block treatment?

    Rich, I'm actually coming at this from the other side. I'm on a gluaththione precursor MAX GXL which is a combination of NAC, L-Glutamine and Vitamin C and combining it with 100mg CoQ10 (2X a day protocol) but am not on the methylation protocol. It's interesting that I've experienced a very...
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    What is considered low NK cell function?

    Anika is right regarding both the lab Klimas uses (her own lab through University of Miami) and the time sensitivity required in performing NK function testing. The reason to test for NK function is that it is almost universal in CFS patients as a diagnostic biomarker. There are very few...
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    What is considered low NK cell function?

    I am actually a Klimas patient and have had many NK tests done over my years with Nancy. As some of you have mentioned, the problem in CFS is not necessarily the number of NK cells, it is their function. Dr. Yes did a nice job of explaining how function is determined and normal controls...
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    From none to too many biomarkers for CFS?

    Another benchmark that is actually seen in a large majority of CFS patients.... low natural killer cell mediated toxiciity (poor NK function). I was involved in a study at U of M through Klimas called a good/day bad/day study. Every six months over a period of two years, I had blood drawn...
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    Klimas cfs clinic

    Aquariusgirl, You are dead on. Klimas is an immunologist and her primary focus is on the immune system in my experience. All of the things you mention (LDN, oxymatrine) are very, very recent in her practice, although she is quite open to using any supplement/drug which has double blinded...
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    Klimas cfs clinic

    Aquarius girl... I've been a patient of Klimas for over 10 years and she has brought me back from a bad place on two seperate occasions. After the first recovery, I was able to work in a senior management position in a Big 4 public accounting firm for close to 9 years on a full time basis and...
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    Klimas cfs clinic

    Yes... if you want to pay out of pocket, you can go to the clinic and see a Klimas trained physician. If you want to see klimas at U of M, it is a year to get in to see Nancy and much less time to see her associate Dr. Rey. U of M takes insurance.
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    Klimas cfs clinic

    Aquariusgirl, I am 100% sure the wait list is close to 1 year. In April when I saw Klimas/Dr Rey, the next appoitment for new patient was February 2011. If you want to confirm, go to University of Miami website and call for new appointment. Klimas is basically rotating every other visit...
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    My AZT + RAL Trial

    Last post on immunovir on Sue's thread... Cloud, I would encourage you to google Rivex Pharma, which is the North American distributor of Immunovir. On their website are research studies on the efficacy of immunovir.... if you have already been tested and have high viral titers to Epstein...
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    My AZT + RAL Trial

    Sue... Klimas is impossible to get in touch with outside of scheduled appointments.. I've been her patient for over 10 years and it is one of the few bad things about Nancy. You can certainly try to call her assistant and give it a go... her name is Marta Gonzalez and her number is...
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    My AZT + RAL Trial

    Sue, One other thing to consider and I think someone else also mentioned immunovir on this post.... I will say from personal experience that it had a significant impact on reducing my cytokine levels and my symptoms and function greatly improved ( I mean from probably a 4 to an 8). It is...
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    My AZT + RAL Trial

    Sue, I don't think you should let yourself get too disappointed by any of this. I posted to you before that the XMRV test is not accurate to date and there could be multiple reasons why it either detects both false positive and false negatives. Klimas has specifically told all her patients...
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    My AZT + RAL Trial

    I've been following Sue's posts, wish her nothing but the best and hope that this works for her. I'm a big believer in doing what is right for you own situtation and this is an extraordinary difficult illness to deal with. That being said, I also think it's important on this site to state the...
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    Glutathione & Precursors - Detox or Induced Methylb12 and Methylfolate Deficiencies?

    Thanks for info Fredd and Rich. Rich, I have asked Klimas multiple times about methylation pathway research and there is no question that she believes that CFS patients have blocked detoxification pathways. But as you know, there are often multiple ways to skin a cat and her primary way is...
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    Glutathione & Precursors - Detox or Induced Methylb12 and Methylfolate Deficiencies?

    Question to all... Has anyone tried the Max GLX product? I am a patient of Klimas and she actually recommended this gluatathione precursor along with a B1/B6/B12 sublingual. She said some people are having excellent results with this. Rich, any thoughts?
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    Klimas cfs clinic

    Leaves, Ask Klimas about Xyrem... if your sleep study is showing you are not getting stage 3 or 4 sleep, this is one of the only phamaceuticals that will allow you to get alpha wave sleep. She put me on Xyrem about 18 months ago and it made a huge difference. Paula, I know all of us...