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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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Positive valcyte experiences

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vli, Nov 22, 2012.

  1. ukxmrv

    ukxmrv Senior Member

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    I think that there are going to be families who have been completely wiped out financially by having to support a PWME regardless of whether it is spent on medical treatment or "just" the costs of having another mouth to feed, clothe and put a roof over their heads.

    Families can get alientated against members who don't even make financial demands on them.

    Then again there are wealthy families with money who can finance the treatment of their loved ones. It may mean that when they pass away there is less money to be inherited by the PWME who may still be very sick then. On the other hand it would be galling for a PWME to stand back, sick and in need of help and watch wealthy caregivers spend that money on cruises, clothes, meals out, gambing or whatever the well off spend money on now-a-days.

    It's even going to cause arguments in less well off families. What should be the distribution of family money on PWME? It's going to vary in each household.

    It is up to each PWME and their family to gauge what is a fair amount to be spent on their medical care. Even rich families can be hard and mean to their own. The alienation can occur even when their is money, if the person in control of the money doesn't want to spend it on a sick relative.

    Vli will know if their family is spending more than they can afford to spend.
     
    heapsreal likes this.
  2. jane52

    jane52

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    I didn't have any co-infections. The azithro was solely for inflamation. My IL8 is very high. It improved. Sorry, forgot to mention that it did lower the CMV by quite a bit also, but the HHV6 did not budge! My NK count is practically nil and I have a clonal T Cell Rearrangement. I stopped taking it in May of this year. It had stopped working about mid way through and the side effects were just making me feel worse at that point. After stopping I continued to feel worse which confused my doctor and me. He waited 2 mos. to do labs and the result was that the CMV had got back up and the T Cell Rearrangement had doubled! I do not think this is the fault of the Valcyte, just the course of the illness. He recommended I start IV Vistide. I have had 10 infusions and will be doing labs to see how it's working in another week. I have no idea how well it's working because it's a rugged treatment! The drug builds up in the system. After the first few treatments I started to feel better and had a good feeling about Vistide, but had lots of activity that was tiring and was told also that it builds up. I have talked to a couple of patients who said they didn't feel well at all during the treatment but after stopping they started to feel better than they had in years!
     
    vli and MishMash like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    So probably the ongoing hhv6 is what is keeping you ill. For what its worth Some have seen their hhv6 titres come down with famvir. Keep us posted if u take visitide. Has your doc considered immune mods?
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sorry, reread your are taking visitide. If it helps it will be good for u if cmx001 is approved as no iv's to worry about.
     
    vli likes this.
  5. jane52

    jane52

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    That would be Really nice! Those infusions along with the Probeniced that must be taken with it and the 3 bags of saline are just tough. After a couple of days it gets better though:)
     
  6. vli

    vli

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    hate to sound like a broken record, but any more +ve experiences??? i am pretty much packing up and leaving the US and frankly the future looks incredibly bleak. PR being I assumed the most well-known ME/CFS forum, it's just sad to say the least to see only heaps, SOC, undcvr and CBS as the handful of ppl posting regularly about their good experiences w val. (tried good old googling "val. and cfs", and there were almost no testimonies at all?!!).


    also, can anyone give me possible explanations as to how patients on val can feel better only after they've STOPPED the drug, as heaps has heard and jane reported? it's really confusing me in understanding how val works or is supposed to be working. thanx
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    in the whole sceam of things there are alot less cfs sufferers on PR then there is throughout the world, so i suppose ones not going to get a large number of people on here who have improved with val compared to the real number who have used val and improved.

    I know u want some type of certainty with valcyte treatment but unfortunately nothing is black and white with this dam illness. All u can do is have a go and try it. Hopefully in a few months time u can post here saying how much val has helped you.

    cheers!!!
     
  8. vli

    vli

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    well I'm alreayd on it, it's just like w/ everything w this darned illness it costs time and money...
    but i get it

    P.S. i don't get why ppl who got well/better on val wldn't shout it from the rooftops. it's a similar experience to what i had with ampligen. maybe it's just me, but if some drug helped me get even half my life back i'd be posting/blogging all over the internet about it.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When i was first ill i remember reading about people on another forums improving greatly on antivirals and then their posts stop. i think alot of people put it behind them and move on. Also there are some people who just never believed others were getting better so would attack them by saying things like they probably never really had cfs/me etc this just gave those that recovered more reason to move on. The best stats are probably from the dr lerner studies as he followed alot of his patients through their recovery. I remember being frustrated by seeing alot of people who posted of recovering/improving but then never returned to the forums, i remember thinking if i improved i would hang around and try and help out etc. people i think just move and want to forget how sick they were.

    cheers!!
     
    RUkiddingME likes this.
  10. RUkiddingME

    RUkiddingME Senior Member

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    I believe a whole lot of CFS patients have been on Valcyte but I believe that when and if we get better we'll be out there living and not on forums. I finally had a good summer, finally being able to get dressed, get down the stairs and into the backyard to lay in the shade. It was absolutely amazing but short lived!!! At that point I didn't think of my illnness nor was I on any forums. I just wanted to forget about being sick for once. I'm certain there are tons of people who have improved on Valcyte and are just busy living. I'm back to being bedridden and obviously back on forums lol. Also I know that Valcyte doesn't work for everyone and not everyone can even tolerate the drug. I start on Valcyte in a couple of weeks and will be documenting my journey on this site because like you I've been looking for success stories on these forums for so long so I will post my story, good or bad. Good Luck!! P.S. I agree that if it has changed some people's live why not shout it from the rooftops or at least write one post about it!!
     
    charlie1 and heapsreal like this.
  11. RUkiddingME

    RUkiddingME Senior Member

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    Hi vli- look up 'valcyte experiences pro health" and a lot comes up. There is a lot of info on the pro health forum as well. Good luck!
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    prohealth board was the site i was on alot before PR and where i heard alot of antiviral stories. Like already mentioned by RUkiddingME i put 'valcyte experience' in their search engine and have found valcyte stories of people improving and many of my old post searching for answers too.
     
  13. undcvr

    undcvr Senior Member

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    I would like to qualify this. Alot of pple here do not think that I have the most severe CFS symptoms and that is why the Valcyte helped me so much. But I have been on tons and tons of supplements all my life and never let my CFS spiral that out of control. Many of those supplements were for detox. And when I was on the Valcyte I had to take 900 mg 2X a day to keep the EBV down. Even my doctor was afraid for me being on that high a dose for 2 years. He had never heard of it before. The average was only a month.
     
  14. Charles555nc

    Charles555nc Senior Member

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    I tried 3 times to start valcyte, but it made me hurt all over every time but in some ways I felt better until I had to stop, better sleep schedule, better thinking etc etc. Then I tried using (started 10 then went up to 20) drops of food grade hydrogen peroxide in a huge glass of distilled water every morning (no food for 3 hours before or an hour after). Now I can take Valcyte with about 60% less side effects than what I was having before, which is much more tolerable. Montoya studies show you have to deal with bacterial issues for Valcyte to be effective, different infectious make ups= different subsets of patients.

    Btw forum goers should keep in mind, drug companies pay millions of dollars each year for paid agitators to browse the web and post bad messages about alternative medicine and effective treatments for cfs/chronic lyme. Sick people are big business to them. Btw hello mish mash.

    I tested positive for epstein barr, hhv6, cmv, c pneumoniae, coxsackie b virus, mycoplasma. And will get retested next month hopefully.

    Im also on .5mg LDN every other day and 100mg doxycline a day for Rosacea. Plus alot of vitamins at least 2 hours after any drug.

    <---positive valcyte experience for sure
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A common problem with people who improve etc is that others will say u didnt have it very severe or that u just had cfs not ME, whatever that is suppose to mean. I think that is always going to happen and we just need to keep moving on and supporting others and those that are interested in what we have done to help us i think will appreciate it. If people dont believe, its not our lose but potentially their lose??
     
    SOC likes this.
  16. SOC

    SOC Senior Member

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    At this time my daughter has much lower NK function than I do, but she's in remission while I'm still significantly affected. I can only guess at what this means at this point, but here's my theory, fwiw.

    My guess is that the immune dysfunction -- NK cell function and/or CD8+ deficiency -- is at the root of our illness and is therefore a diagnostic biomarker. However, the type of symptoms and the severity of the symptoms is more a function of which infections we get as a result of immune dysfunction as well as how long those infections persist.

    I was sick longer and more severely than my daughter. I suspect that living with active herpesviruses (and other infections) for so long has done some long-term, or possibly permanent, damage to some of my systems. Because we jumped on my daughter's herpesviral infections with Valcyte relatively quickly after she became continuously ill, I suspect that once she got them back into full latency, she became symptom-free. That does not mean she is cured. She still has immune dysfunction which means she could develop another infection and become symptomatic again. So I say she has ME/CFS (with the associated immune dysfunction) and probably always will, but that it is in remission with careful management.

    My NK cell function was good at my first test almost a year ago, possibly because I had been taking immune modulators that are known to affect NK cell function. My CD8+ numbers are very low, however. My next immune function test is scheduled in the next week or so. I have not taken much in the way of immune modulators for many months, so we'll see if my NK cell function test results are any different.

    So, my theory is that poor NK cell function and/or CD8+ deficiency is diagnostic for ME/CFS, but severity of the illness depends more on: 1) the type of infections that arose as the result of immune deficiency, 2) the length or severity of those infections, and 3) the degree of damage done by those infections.

    As for what caused the immune dysfunction in the first place.... I don't have many solid ideas. I suspect a combination of genetics and running into the wrong virus. That virus could be known but not well understood, like HHV-6a, or still unidentified. I suspect a viral component simply because daughter and I became ill with the same flu-like illness at the same time when I became continuously ill 8+ years ago. She appeared to have cleared it, but still had relapses with ME/CFS symptoms once or twice a year. Also, there are now an unexpected number of parent/child combinations with related diagnoses in the homeschool group we worked with at the time. There are CFS diagnoses, quite a few fibromyalgia diagnoses, a couple of atypical MS diagnoses, and some questionable psychiatric diagnoses among the kids approximately daughter's age (+/- 3 years) and their mothers. As we all know, they could all be the same illness with diagnosis depending on what the doc knew about this type of illness.

    Bottom line: I agree with heaps that immune dysfunction is likely to be a marker of the existence of ME/CFS, but not of the severity. Let's hope our dedicated researchers and clinicians get it sorted out before much longer. :)
     
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  17. MishMash

    MishMash *****

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    You must be a drug rep for Genentech. I can't imagine why you would personalize something like this. Other than you have personal gain from pushing as many people as possible to take Valcyte.
     
  18. satoshikasumi

    satoshikasumi Senior Member

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    Skepticism is okay, MishMash, but I think you are catastrophizing about the costs of these treatments. Valcyte is either covered by insurance or is available FREE from the drug company for patients with an adjusted gross income below $100,000 a year. Rituxan is likewise available for FREE when it is not covered by insurance, based on the same criteria.

    These drug companies that are successful set up charities to help people who can't afford their drugs.
    Hemispherx/Ampligen is the sole exception because it is a small drug company that has been poorly managed and lacks adequate capitalization.

    I have had insurance pay for both these drugs and other insurance refuse to pay for them. Different insurance administrators have different philosophies. If you live in Nevada, insurance companies MUST pay for Ampligen, by state law. And it never, never hurts to ask.

    Yes, patients do need to weigh the limited and preliminary evidence for efficacy against the risks associated with these drugs, but cost should not be an issue.
     
    heapsreal and SOC like this.
  19. vli

    vli

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    sorry but R U sure u meant Amp??? I have NEVER heard of amp being covered by insurance--the only way I thot u cld get amp was by enrolling in the cost-recovery Amp 511??!
     
  20. satoshikasumi

    satoshikasumi Senior Member

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    NRS 689A.04033 Coverage for treatment received as part of clinical trial or study.
    1. A policy of health insurance must provide coverage for medical treatment which a policyholder or subscriber receives as part of a clinical trial or study if:
    (a) The medical treatment is provided in a Phase I, Phase II, Phase III or Phase IV study or clinical trial for the treatment of cancer or in a Phase II, Phase III or Phase IV study or clinical trial for the treatment of chronic fatigue syndrome;
    (b) The clinical trial or study is approved by:
    (1) An agency of the National Institutes of Health as set forth in 42 U.S.C. § 281(b);
    (2) A cooperative group;
    (3) The Food and Drug Administration as an application for a new investigational drug;
    (4) The United States Department of Veterans Affairs; or
    (5) The United States Department of Defense;
    (c) In the case of:
    (1) A Phase I clinical trial or study for the treatment of cancer, the medical treatment is provided at a facility authorized to conduct Phase I clinical trials or studies for the treatment of cancer; or
    (2) A Phase II, Phase III or Phase IV study or clinical trial for the treatment of cancer or chronic fatigue syndrome, the medical treatment is provided by a provider of health care and the facility and personnel for the clinical trial or study have the experience and training to provide the treatment in a capable manner;
    (d) There is no medical treatment available which is considered a more appropriate alternative medical treatment than the medical treatment provided in the clinical trial or study;
    (e) There is a reasonable expectation based on clinical data that the medical treatment provided in the clinical trial or study will be at least as effective as any other medical treatment;
    (f) The clinical trial or study is conducted in this State; and
    (g) The policyholder or subscriber has signed, before participating in the clinical trial or study, a statement of consent indicating that the policyholder or subscriber has been informed of, without limitation:
    (1) The procedure to be undertaken;
    (2) Alternative methods of treatment; and
    (3) The risks associated with participation in the clinical trial or study, including, without limitation, the general nature and extent of such risks.
    2. Except as otherwise provided in subsection 3, the coverage for medical treatment required by this section is limited to:
    (a) Coverage for any drug or device that is approved for sale by the Food and Drug Administration without regard to whether the approved drug or device has been approved for use in the medical treatment of the policyholder or subscriber.
    (b) The cost of any reasonably necessary health care services that are required as a result of the medical treatment provided in a Phase II, Phase III or Phase IV clinical trial or study or as a result of any complication arising out of the medical treatment provided in a Phase II, Phase III or Phase IV clinical trial or study, to the extent that such health care services would otherwise be covered under the policy of health insurance.
    (c) The cost of any routine health care services that would otherwise be covered under the policy of health insurance for a policyholder or subscriber participating in a Phase I clinical trial or study.
    (d) The initial consultation to determine whether the policyholder or subscriber is eligible to participate in the clinical trial or study.
    (e) Health care services required for the clinically appropriate monitoring of the policyholder or subscriber during a Phase II, Phase III or Phase IV clinical trial or study.
    (f) Health care services which are required for the clinically appropriate monitoring of the policyholder or subscriber during a Phase I clinical trial or study and which are not directly related to the clinical trial or study.
    Ê Except as otherwise provided in NRS 689A.04036, the services provided pursuant to paragraphs (b), (c), (e) and (f) must be covered only if the services are provided by a provider with whom the insurer has contracted for such services. If the insurer has not contracted for the provision of such services, the insurer shall pay the provider the rate of reimbursement that is paid to other providers with whom the insurer has contracted for similar services and the provider shall accept that rate of reimbursement as payment in full.
    3. Particular medical treatment described in subsection 2 and provided to a policyholder or subscriber is not required to be covered pursuant to this section if that particular medical treatment is provided by the sponsor of the clinical trial or study free of charge to the policyholder or subscriber.
    4. The coverage for medical treatment required by this section does not include:
    (a) Any portion of the clinical trial or study that is customarily paid for by a government or a biotechnical, pharmaceutical or medical industry.
    (b) Coverage for a drug or device described in paragraph (a) of subsection 2 which is paid for by the manufacturer, distributor or provider of the drug or device.
    (c) Health care services that are specifically excluded from coverage under the policyholder’s or subscriber’s policy of health insurance, regardless of whether such services are provided under the clinical trial or study.
    (d) Health care services that are customarily provided by the sponsors of the clinical trial or study free of charge to the participants in the trial or study.
    (e) Extraneous expenses related to participation in the clinical trial or study including, without limitation, travel, housing and other expenses that a participant may incur.
    (f) Any expenses incurred by a person who accompanies the policyholder or subscriber during the clinical trial or study.
    (g) Any item or service that is provided solely to satisfy a need or desire for data collection or analysis that is not directly related to the clinical management of the policyholder or subscriber.
    (h) Any costs for the management of research relating to the clinical trial or study.
    5. An insurer who delivers or issues for delivery a policy of health insurance specified in subsection 1 may require copies of the approval or certification issued pursuant to paragraph (b) of subsection 1, the statement of consent signed by the policyholder or subscriber, protocols for the clinical trial or study and any other materials related to the scope of the clinical trial or study relevant to the coverage of medical treatment pursuant to this section.
    6. An insurer who delivers or issues for delivery a policy specified in subsection 1 shall:
    (a) Include in the disclosure required pursuant to NRS 689A.390 notice to each policyholder and subscriber under the policy of the availability of the benefits required by this section.
    (b) Provide the coverage required by this section subject to the same deductible, copayment, coinsurance and other such conditions for coverage that are required under the policy.
    7. A policy of health insurance subject to the provisions of this chapter that is delivered, issued for delivery or renewed on or after January 1, 2006, has the legal effect of including the coverage required by this section, and any provision of the policy that conflicts with this section is void.
    8. An insurer who delivers or issues for delivery a policy specified in subsection 1 is immune from liability for:
    (a) Any injury to a policyholder or subscriber caused by:
    (1) Any medical treatment provided to the policyholder or subscriber in connection with his or her participation in a clinical trial or study described in this section; or
    (2) An act or omission by a provider of health care who provides medical treatment or supervises the provision of medical treatment to the policyholder or subscriber in connection with his or her participation in a clinical trial or study described in this section.
    (b) Any adverse or unanticipated outcome arising out of a policyholder’s or subscriber’s participation in a clinical trial or study described in this section.
    9. As used in this section:
    (a) “Cooperative group” means a network of facilities that collaborate on research projects and has established a peer review program approved by the National Institutes of Health. The term includes:
    (1) The Clinical Trials Cooperative Group Program; and
    (2) The Community Clinical Oncology Program.
    (b) “Facility authorized to conduct Phase I clinical trials or studies for the treatment of cancer” means a facility or an affiliate of a facility that:
    (1) Has in place a Phase I program which permits only selective participation in the program and which uses clear-cut criteria to determine eligibility for participation in the program;
    (2) Operates a protocol review and monitoring system which conforms to the standards set forth in the Policies and Guidelines Relating to the Cancer-Center Support Grant published by the Cancer Centers Branch of the National Cancer Institute;
    (3) Employs at least two researchers and at least one of those researchers receives funding from a federal grant;
    (4) Employs at least three clinical investigators who have experience working in Phase I clinical trials or studies conducted at a facility designated as a comprehensive cancer center by the National Cancer Institute;
    (5) Possesses specialized resources for use in Phase I clinical trials or studies, including, without limitation, equipment that facilitates research and analysis in proteomics, genomics and pharmacokinetics;
    (6) Is capable of gathering, maintaining and reporting electronic data; and
    (7) Is capable of responding to audits instituted by federal and state agencies.
    (c) “Provider of health care” means:
    (1) A hospital; or
    (2) A person licensed pursuant to chapter 630, 631 or 633 of NRS.
    (Added to NRS by 2003, 3519; A 2005, 2009)
     

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