August 3, 2012

Reply to “Oral Meds”

Posted in Uncategorized at 5:43 pm by serenamuse

It is interesting how so many of us have similar experiences. I guess we should pay attention to what is  being said on the blog before trusting doctors. It is painfully obvious to me that we are the best judgement of our own bodies. They don’t understand our experience. So no oral meds for me – of any sort – anymore. I have not tried going without wheat, but am going to. I’ve been really tired as of late. Of course we did make a big move last month – are now in Fullerton California. I find it takes so long for me to just find routine again and I NEED ROUTINE to survive.

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27 Comments »

  1. Susan said,

    New here. Searching for answers with all that’s going on with me. I had parvovirus b19 diagnosed 2 1/2 years ago after severe hand pain and swelling, knee pain, hips, and back following rash on chest and cheeks. Was tested for lupus and RA, and finally “googled” around and had my doctor test me for parvovirus.
    Currently after 2 years of knee pain, osteoarthritis and medical leave for knee problems, now have hip pain, foot pain and fatigue. Never had so much going on til the parvovirus. I take ibuprofen here and there, but it’s getting worse. Also, short of breath and racing pulse at times. Hope to retire early, 12 hours nurse shifts are too much.
    So taking notes today and will look into DHEA and Tumeric and B vites, as well as minocycline possibibility.
    It does validate my suspicions about the lingering affects of this damn parvo!!

    • Ann Walton said,

      Also new here. I have an antibody formation failure to parvovirus B19 and a presumptive diagnosis of chronic parvovirus B19. I also have a generalized antibody deficiency
      to everything else, consisting of low immune globulin [antibody]
      G, low immune globulin G subclass 1 and low immune globulin
      M. These Ig [immune globulin] values define a Primary Immune Deficiency Disease called Common Variable Immune Deficiency.

      As I understand it, chronic parvovirus B19 occurs in patients who
      have antibody formation impairments specific to the virus, while those who suffer an infection and recover make robust longlived
      antibody-producing B blood cells.

      Whether the chronic parvovirus B19 is caused by an isolated
      (aka “specific”) antibody defect when the antibody formation to everything else is just fine or whether the chronic disease occurs in the context of a more generalized antibody formation defect, the treatment for it is the same: infusing the immune globulin
      collected from healthy donors, which predictably includes
      antibodies to parvovirus B19.

      So I suggest that all of you ask for blood tests for
      parvovirus B19 IgG and IgM. This will establish a baseline level
      of your antibody host defense. When the antibody host defense is working right, the antibody memory left after your first infection should cue a big increase in antibody production during any subsequent flares. So retest for parvovirus B19 IgG and IgM after or during your next flare of symptoms.

      By accepted medical convention, an increase in the IgG level that is four times higher than baseline indicates a subsequent infection.If there wasn’t any IgM to parvo in the first test, then an increase in IgM to any positive value would indicate a new infection is starting up because IgM is the first antibody formed upon exposure.

      When my doctors and I did this, there were zero antibodies to parvovirus B19 when I had joint swelling and pain, fever, muscle pain, sore throat, jaundice, burning cheeks, red hands and feet and the characteristic reticular rash on the skin of my limbs.

      When we tested again NINE months later after another episode,
      there was a tiny amount of IgM and IgG to parvovirus B19.

      We suspected that I had had a delayed and weak antibody host defense to parvovirus. Another possibility was that the antibodies I’d made were fading away instead of enduring like
      they’re supposed to do.

      So we tested again in another two weeks. The quantity of parvovirus B19 IgM and IgG dropped in half.

      So we tested again in another two weeks. Both the IgG and the IgM antibodies to parvovirus went back to zero, leaving me
      without any host protection to a recurrence.

      Parvovirus B19 resides in the skin. It replicates in the bone marrow. From there it can infect red blood cells, which it kills.
      Once it gets a foothold in the bone marrow, it’s hard to get rid of. The bone marrow produces a new crop of red blood cells every five days.

      So to cure a parvovirus B19 infection in the context of normal antibody levels, the immune globulin
      infusions may have to be continued for a very long time.

      And to control a parvovirus B19 infection in the context of
      an antibody deficiency, the immune globulin infusions may have to be continued indefinitely.

      The therapy is very expensive. Usually, insurance plans do not cover IgG treatment for parvovirus B19 at all unless it is treated incidental to one of the Primary Immune Deficiency
      diseases.

      So if you go this route, expect an uphill battle with your
      insurer.

      That said, I went from being being bedfast with recurrent infections of all kinds to being practically well after two or three years of immune globulin therapy for my Common
      Variable Immune Deficiency.

      I hope this helps.

      Oh: one more thing. The National Institutes of Health have
      proved massage therapy stimulates antibody production.
      Massage is the one treatment modality that helped my pain
      and fatigue before my immune deficiency was diagnosed and I started with IgG treatment. Insurance doesn’t cover that either. I learned to do massage myself so that I could trade
      massages with massage therapists at no charge. I did that for about 8 years before my immune deficiency disease was diagnosed and I started treatment.

      A recent study found more than half of the patients diagnosed with “Chronic Fatigue Syndrome” had simultaneous active infections with HHV6, EBV and parvovirus 19. This study
      acknowledges that antibody formation defects to parvovirus
      may be the root cause of symptoms in patients like these.

      Grandanna

      • Sandra said,

        Ann, antibody testing was a very good idea to find out what is not working. Since then, what have you done to build your immune system? There are a multitude of methods using homeopathic & herbal/food supplements.

      • Leslie said,

        Hi, Anna… I’ve been reading posts here for some time, and yours is the first that prompted me to actually “join” the conversation. Your hard-won knowledge, working through this awful virus, I’m sure has come at the cost of such a personal toll on your health. For that I’m sorry… a stranger, yet I can understand. I will save the details, as my story has been told over and over again by others here. But what may make me different in some regards (at least my doctors think so) is that 18 months post my original parvo virus positive test, I have negative IgM, positive IgG and a POSITIVE parvo DNA significant viral load . I want to share my story, maybe to help others in their search for answers, because mine is a bit different than many here…. significant neurological manifestations… that originally I think threw my doctors off. But, they are now working to help me get IVIG, and maybe, hopefully, I’ll be approved. Even, then, they have indicated it isn’t necessarily a cure-all, which leaves me feeling a bit hopeless despite the initial smile knowing they were going to seek this therapy. Your doctor seems to be one (maybe many) steps ahead than so many. I’ll be taking your post to my doctor next time. If I may ask… would you ever be willing to share his/her name in some sort of confidential manner? I have been left feeling that even though my doctors recognize that I have parvo positive DNA 18 months out and they agree it shouldn’t be there, they are baffled on how to proceed… while I truly suffer with debilitating symptoms daily.
        To everyone else out there… does ANYONE have a doctor ANYWHERE who truly understands this virus?
        Blessings… and hope for a fully recovery to everyone!
        Leslie

      • serenamuse said,

        Sorry, I’ve never found a doctor that really understands Parvo. Is that possible?

      • Grandanna said,

        HI, Leslie. Although you’ve been making IgG antibodies to parvovirus B19, the persistent parvo DNA shows your immune system has been
        “shooting blanks”. IgG antibodies to parvovirus b19 are not all the same. They bind to different proteins. Only the antibodies that bind
        to particular proteins have the ability to clear the infections. So if the only kind of antibodies you make bind to the other protein, the infection goes on and on and on. These differences are fairly thoroughly
        discussed in the medical literature found at PubMed, the online
        search engine for the National Library of Medicine. For a couple of decades or more, researchers have suspected there is a defect in
        the binding site for T cells activated by parvovirus that arrests the
        sequence of steps necessary for the B cells to produce the full array
        of antibodies to parvovirus B19. In the last couple of years, researchers have published papers saying they think they’ve found the missing link. It used to be that researchers believed that defective
        B cells were the only reason for antibody formation defects, so no one
        who had T cell defects could get IVIG treatment when the reality is
        that antibody formation for most diseases depends on T cell responses
        and signals to B cells and antibody formation to very few diseases
        depends solely on B cell function. So you have a shot at IVIg, if your
        doctors know what they’re doing. Neal Young, Kevin Brown, Sean Doyle and Jonathan Kerr are prominent researchers on persistent parvovirus b19.So you can read their work or your doctors can. Doyle designed a test to differentiate the parvo antibodies that can control parvo from the ones that cannot. Although this test is likely still unavailable in the U.S., it might be possible for your doctors to request Doyle to run your samples if you pay for it privately. You could ask. You can also be seen as a private pay patient at a private hospital or clinic in Dublin, where Doyle is. For evidence that IVIG works to cure
        parvovirus B19, search at PubMed for an author named Kobayashi
        about a teenaged boy in Wichita, KS. I believe Richard Steihm,
        immunologist at UCLA, is a co-author. Kobayashi is an immunologist in Omaha who has conducted a lot of group studies for IgG manufacturers. There are also some other reports of IVIg success for individuals. I don’t recall if there are large group studies except perhaps by Jonathan Kerr in patients classified as Chronic Fatigue Syndrome patients. There is also at least one report
        of beating parvovirus B19 by treating it with IVIG concurrently with
        valganciclovir, anti viral that suppresses replication of the herpes viruses. Parvovirus and cytomegalovirus both reside in the precursors of red blood cells in the bone marrow. Cytomegalovirus (and EBV, which absolutely everyone has) extend the lives of red blood cells, while parvovirus b19 kills them young. If the herpes viruses are predominant, they can perpetuate the lives of the parvovirus-infected
        red blood cells. So if your antibody response to either one disease is weak, you get parvovirus B19 infected cells that are virtually
        immortal, but if you can prevent them from replicating, the IVIG has
        a chance of killing them off, gradually reducing the number of infected
        parvovirus B19 infected cells. It’s worked for me. This is an off label use of valgancyclovir which is legal nonetheless, so a doctor can prescribe it. There is at least one report in the medical literature of this working for a patient infected with CMV and Parvo B19. The only difference between valganciclovir and acyclovir is that valganciclovir metabolizes in the body to 10 times as much as acyclovir does, I read. So acyclovir might help even if you can’t get coverage for valganciclovir. Valganciclovir is FDA approved for CMV, but because of its higher potency, it works on all the herpes viruses, as I recall.
        Since you have some antibodies to parvo B19, acyclovir or valganciclovir might be worth a try even without IgG, although I’m sold on IgG. What you really need is a trial of IgG infusions. If the
        treatment works for you and you prove it, then it will be very difficult for your insurer to deny benefits for IgG because, as a matter of law,
        the author of a contract cannot interpret the language of the contract to the detriment of the party to the agreement who didn’t write it, that is, to the detriment of the beneficiary. Also, the professional society of hematologists decided in the last few years that IgG should not be used in patients who have parvovirus B19 and red cell aplasia (which is a rapid die off red blood cells), so you will need to show your red blood cell count is in the normal range. Which it likely is
        if your herpes virus infections have been preventing parvo B19
        infected cells from being killed by parvo.

        Good luck.

      • grandanna said,

        Here is another paper that may help people find doctors who can care for their chronic parvovirus b19 infections. One of the authors is at the University of Kansas in the immunology and genetics department. You can write him to ask who treats the disease in your location. As you can see, the bench researchers in parvovirus B19 are from all over the world. And they know other doctors
        all over the world.

        This article confirms the work of others that the parovirus B19
        NS1 [non-structural 1] protein is responsible for cell cycle [red blood cell development in the bone marror] arrest.

        That’s the site on the parvovirus virion that that permits viral
        replication and ongoing infection in people who lack antibodies to it
        and the reason why immune globulin G works: healthy people make antibodies to parvovirus b19 NS1 and the ones who have
        recurrent and chronic disease don’t.

        Human Parvovirus B19 DNA Replication Induces a DNA Damage Response That is Dispensable for Cell Cycle Arrest at G2/M Phase
        Sai Lou1,2, Yong Luo2, Fang Cheng2, Qinfeng Huang2, Weiran Shen2, Steve Kleiboeker3, John F. Tisdale4, Zhengwen Liu1,* and Jianming Qiu2,*
        + Author Affiliations

        1Department of Infectious Diseases, First Affiliated Hospital, School of Medicine, Xi’an Jiaotong University, Xi’an, China
        2Department of Microbiology, Molecular Genetics and Immunology, University of Kansas Medical Center, Kansas City, KS, USA
        3ViraCor-IBT Laboratories, Lee’s Summit, MO, USA
        4Molecular and Clinical Hematology Branch, National Institute of Diabetes and Digestive and Kidney Diseases, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD, USA
        ABSTRACT

        Human parvovirus B19 (B19V) infection is highly restricted to human erythroid progenitor cells, in which it induces a DNA damage response (DDR). The DDR signaling is mainly mediated by the ATR (Ataxia telangiectasia mutated and Rad3 related) pathway, which promotes replication of the viral genome; however, the exact mechanisms employed by B19V to take advantage of the DDR for virus replication remain unclear. In this study, we focused on the initiators of the DDR and the role of the DDR in cell cycle arrest during B19V infection. We examined the role of individual viral proteins, which were delivered by lentiviruses, in triggering a DDR in ex vivo-expanded primary human erythroid progenitor cells, and the role of DNA replication of the B19V double-stranded (ds)DNA genome in a human megakaryoblastoid cell line, UT7/Epo-S1. All the cells were cultured under hypoxic conditions. The results showed that none of the viral proteins induced phosphorylation of H2AX or replication protein A 32, both hallmarks of a DDR. However, replication of the B19V dsDNA genome was capable of inducing the DDR. Moreover, the DDR per se did not arrest the cell cycle at G2/M phase in cells with replicating B19V dsDNA genomes. Instead,

        B19V NS1 protein was the key factor disrupting the cell cycle

        via a putative transactivation domain operating through a p53-independent pathway. Taken together, the results suggest that the replication of the B19V genome is largely responsible for triggering a DDR, which does not perturb cell cycle progression at G2/M significantly, during B19V infection.

        FOOTNOTES

        ↵* Co-corresponding authors: Jianming Qiu, Department of Microbiology, Molecular Genetics and Immunology, University of Kansas Medical Center, Kansas City, KS 66160, USA, Tel.: 1-913-588-4329, Fax: 1-913-588-7295, Email: jqiu@kumc.edu
        ↵*Zhengwen Liu, Department of Infectious Diseases, First Affiliated Hospital, School of Medicine, Xi’an Jiaotong University, Xi’an 710061, Shaanxi Province, China, Tel.: 86-29-85324066, Fax: 86-29-85324066, Email: liuzhengwen2011@gmail.com
        Copyright © 2012, American Society for Microbiology. All Rights Reserved.
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        Human Parvovirus B19 DNA Replication Induces a DNA Damage Response That is Dispensable for Cell Cycle Arrest at G2/M Phase
        Sai Lou1,2, Yong Luo2, Fang Cheng2, Qinfeng Huang2, Weiran Shen2, Steve Kleiboeker3, John F. Tisdale4, Zhengwen Liu1,* and Jianming Qiu2,*
        + Author Affiliations

        1Department of Infectious Diseases, First Affiliated Hospital, School of Medicine, Xi’an Jiaotong University, Xi’an, China
        2Department of Microbiology, Molecular Genetics and Immunology, University of Kansas Medical Center, Kansas City, KS, USA
        3ViraCor-IBT Laboratories, Lee’s Summit, MO, USA
        4Molecular and Clinical Hematology Branch, National Institute of Diabetes and Digestive and Kidney Diseases, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD, USA
        ABSTRACT

        Human parvovirus B19 (B19V) infection is highly restricted to human erythroid progenitor cells, in which it induces a DNA damage response (DDR). The DDR signaling is mainly mediated by the ATR (Ataxia telangiectasia mutated and Rad3 related) pathway, which promotes replication of the viral genome; however, the exact mechanisms employed by B19V to take advantage of the DDR for virus replication remain unclear. In this study, we focused on the initiators of the DDR and the role of the DDR in cell cycle arrest during B19V infection. We examined the role of individual viral proteins, which were delivered by lentiviruses, in triggering a DDR in ex vivo-expanded primary human erythroid progenitor cells, and the role of DNA replication of the B19V double-stranded (ds)DNA genome in a human megakaryoblastoid cell line, UT7/Epo-S1. All the cells were cultured under hypoxic conditions. The results showed that none of the viral proteins induced phosphorylation of H2AX or replication protein A 32, both hallmarks of a DDR. However, replication of the B19V dsDNA genome was capable of inducing the DDR. Moreover, the DDR per se did not arrest the cell cycle at G2/M phase in cells with replicating B19V dsDNA genomes. Instead, B19V NS1 protein was the key factor disrupting the cell cycle via a putative transactivation domain operating through a p53-independent pathway. Taken together, the results suggest that the replication of the B19V genome is largely responsible for triggering a DDR, which does not perturb cell cycle progression at G2/M significantly, during B19V infection.

        FOOTNOTES

        ↵* Co-corresponding authors: Jianming Qiu, Department of Microbiology, Molecular Genetics and Immunology, University of Kansas Medical Center, Kansas City, KS 66160, USA, Tel.: 1-913-588-4329, Fax: 1-913-588-7295, Email: jqiu@kumc.edu
        ↵*Zhengwen Liu, Department of Infectious Diseases, First Affiliated Hospital, School of Medicine, Xi’an Jiaotong University, Xi’an 710061, Shaanxi Province, China, Tel.: 86-29-85324066, Fax: 86-29-85324066, Email: liuzhengwen2011@gmail.com
        Copyright © 2012, American Society for Microbiology. All Rights Reserved.
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      • Sandra said,

        Totally agree about vaccinations/immunizations with immune compromised folks, except in the homeopathic realm…

        I just treated my Parvo B19 with a NAET homeopathic remedy for “parvo b19”, yesterday…even though I had been free of symptoms for many years (due to my diet & cleansing), Last night, I began to exhibit flu-like aches & pains, swollen lips, mild rash after my treatment.

        (As an aside, in my doctor’s practice, I have seen the NAET treatments help autistic children to reverse their symptoms back to “normal” behaviors…) and I personally have used NAET to treat for food related allergic reactions such as wheat.

        I will report my final results after my 2nd treatment.

        Foods, toxins & pathogens can create IgG responses in the gut/immune system. As an example, wheat glutenin resembles the thyroid hormone T4, so to the those who are sensitive, the body attacks gluten, it also can attack thyroid hormone by making thyroid peroxidase antibodies, TPO Ab. This can be check on a blood test, but most doctors don’t do the test because insurance doesn’t pay for it.

        You can avoid the foods to desensitize yourself, and you can use NAET to reset the trigger mechanism in the immune response in the gut. Both work in tandem for best results.

      • Leslie said,

        WOW… you’ve said a mouthful! And I thank you so much for your quick response. I’ll add it to the mounds of info I’ve been compiling!
        Leslie

  2. Barbara Archambeault said,

    Good lhe nutritionist I saw said no correlation between being wheat/gluten or changing diets will help since this was a “viral” infection and “and I just can’t image that you would be still be having sx”. Welcome to my world am I to live my life out in a cave w/a couch? I just can’t fathom no one, no one in this US medical institution can’t find a cure or a reasonable tx. The last message I got from a local rheumatologist was a slab on the thigh, he said “well guess it sucks to me you-nice, huh? I feel like I am going crazy an no one understands how painful, weak , depressed an so forth. I led a productive healthy life, worked as a nurse and now its takes all my effort just to get up each morning so stiff. Has anyone told someone on this forum that you could have fibromylagia (nice term-most medical folks think this is a null dx).

    • serenamuse said,

      I’m sorry but what the nutritionist said does not make sense. I have a hard time believing they understand nutrition. It just makes sense that your body needs the right sorts of fuel to decrease inflammation and fight off the virus…I’d seek another opinion…

    • Leslie said,

      Hi, Barbara… if it “sucks” being you, then it “sucks” being me, too. (Is that a medical term?) Yes, that’s what most recently is being suggested to me, though I continue to test positive for the parvo dna. So… I said, until you can tell me this ISN’T from the parvo virus, I don’t want to be told that it IS from fibromyalgia. Makes sense, right? I have read a ton on parvo virus, though, and a New England Journal article said parvo can “mimic, precipitate or exacerbate… lupus and fibromyalgia.” What symptoms do you have that may indicate fibromyalgia to your doctor? I don’t have any tender points, per se, but the muscle pain, in addition to everything else, is horrible.
      Blessings… and hope for full recovery!
      Leslie

  3. Sandra said,

    I suffered with Parvo for several years from 1990-1995. But I took it on myself to heal myself. It flares up now and then, but I know what to do to dampen it down within a few hours.
    1)Wheat gluten can be a trigger for autoimmune thyroiditis (Hashimoto’s). The protein molecules of the gliadin and T4 are very similar in structure, so when the body attacks gliadin, it often mistakes T4 in the process.
    Getting a comprehensive thyroid panel is a must. + testing cortisol, estrogens, progesterone & testosterone is also mandatory.

    2) Germs join gangs, just like human bad guys. Many chronic illnesses are linked to mycoplasma infections, candida, parvo, herpes, coxsackie virus and who knows how many others.

    3)Building a weak immune system by healing the gut is the first step.

    4) I used the ION Cleanse by A Major Difference to boost my detoxification protocols of herbs and whey protein shakes

    5) Proper spinal care for nervous system health

    6) Anti-inflammatory diet: fruits, vegetables, nuts & seeds, high quality protein. NO Soy

    7) moderate exercise (water aerobics or swimming is great but too much chlorine is a problem & weakens thyroid)

    8)Elderberry will shorten the replication time of all viruses when they become active.

    9)Most people with weak immune systems are deficient in Vitamin D3
    Get it tested and make sure it is 50 or above..no less! And take on D3.
    10)Fermented foods are essential to healing the gut lining

    11)Bone broths & other gelatin or collagen foods will heal skin, hair & nails and will suppress excess estrogen, which is linked to tumor growth. These amino acids are essential in the diet but are missing in the average shoppers grocery cart.

    Hope these suggestions help. There are many herbal & homeopathic remedies that can help. You can find my other health related postings on my Facebook page, Sandra Lowry, CNC

    • serenamuse said,

      Wow, you have so much information here that I’m sure many, like myself, are left with lots of questions. For instance, where do you go for these thyroid panels and testing on D3? I just went to a doctor at the urgent care this weekend – I’ve had a host of new symptoms for over week now – he told me it was probably in my head. Once again, I came away from the medical system, completely convinced they know nothing. What is proper spinal care? Why no soy? Thank you for the information and I’m so glad it has helped you!

      Serena

      • Sandra said,

        Serena, you can order them directly through ZRT Lab, or you can specifically ask your doctor or better yet, an endocrinologist to order them.
        http://w3.zrtlab.com/

        You would be looking for the following thyroid panels:
        TSH, T4, free T4, T3, free T3, reverse T3 (if you suspect insulin resistance), TPO Ab (thyroidperoxidase antibody), TGB Ab (thyrogloblulin antibody). If you have ANY positive reaction to the antibody tests, you are Hashimoto’s autoimmune hypothyroid…(unless you are in the early stages where you are oscillating between hypo & hyper), nevertheless, you most likely have an autoimmune disease. If that proves true, you must avoid ALL gluten.
        Gliadin the protein in gluten will trigger the autoimmune reaction towards your thyroid. The gliadin and thyroid hormone are very similar in shape. And if you cheat and eat gluten, you will not be able to heal…it will take months for you to recover.

        Autoimmune disorders will dominate in one of two basic immune response pathways: Th1 or Th2 You optimally want to keep them balanced. But to be empirical about your research, you must discover which is dominant by getting a cytokine blood test.

        This also might be a good time to get a food allergy test for IgG & IgE reactions, so you will know what foods trigger your immune reactions.
        Alletess Lab does food allergy testing.There are others, but I am currently using this lab.
        http://www.foodallergy.com/tests.html

        D3 is really important to the immune response. The correct D3 test is 25(OH)D, also called 25-hydroxyvitamin

        Hope this helps. for more detailed info, feel free to email me at slowrycnc@gmail

      • serenamuse said,

        Thank you so much for taking the time to post this. I will look into it!

      • Sandra said,

        The only good soy is fermented soy (i.e. Miso) Americanized soy is genetically modified and it is too estrogenic for the majority of people. It weakens the thyroid because of its estrogen influence. And all legumes have toxic lectins that are not useful to humans; that is why we have to soak them, and cook the devil out of them to make them digestible.
        Proper spinal care is making sure your spine is in its natural alignment to allow the nervous system to operate properly & support the immune system the way it was designed to function. See a good chiropractor and you will be exposed to much of what I have mentioned in the previous post. It is about basic good health principles. Glad to answer any other questions.

  4. Priya said,

    Hi Sandra, I nearly fell over over when I saw your post about mycoplasma infections. I had parvovirus in 2007 and after a slow recovery I fell I’ll again with similar symptoms lat year 2011 only to discover I had mycoplasma pneumonai. I think this is now causing neurological symptoms which i am concerned about and due to have MRI scan. I think people should be aware of this infection and get tested especially if they have CFS. Please google Dr Garth Nicholson and read more.

    • Sandra said,

      Yes, Dr. Garth Nicholson is outspoken on the subject of mycoplasma & its connection to vaccinations. The mycoplasma act like viruses…they invade the cell and can become dormant until the host (you & me) becomes weakened.Heavy metal concentrations will weaken us collectively over the years–so metal dental fillings & antiperspirants are a huge source of toxicity. Chlorine in bathing & drinking water; food allergies; hormone imbalance, especially after menopause or hysterectomy.
      I have found several homeopathic and herbal remedies that keep these nasty opportunistic bugs in check. I like Immuplex from Standard Process; Cold & Flu by Quantum Health; Olive Leaf Extract from either SeaGate or Solgar; Coconut Oil for its anti-fungal properties; and Heel Homeopathic’s Engystol. Different products will resonate for others, but these are my current arsenal.

  5. Leslie said,

    Hi, All… been responding to many here today. Finally jumped on board after reading so many for over a year. The journey here has been long, and I’m going to post it one day when I’m just a bit further up the road with answers, because I really want to help others.
    But, for now, If any one could elaborate/enlighten… many thanks ahead of time. How, if at all, have you or your doctors distinguished between persistent parvo virus, post-viral syndrome and/or fibromyalgia? Eighteen months out now for me with a positive parvo dna test but suggestions still of post-viral and fibro. Possibly, could it be all three?
    So very confused…
    Leslie

    • grandanna said,

      There is a clear distinction between fibromyalgia, post viral syndrome and persistent parvovirus B19. If you have persistent
      parvovirus DNA, you have persistent infection, so you can’t have
      post-viral syndrome: the infection isn’t over. A diagnosis of
      fibromyalgia requires exclusion of infection as a cause. Parvovirus B19 causes muscle pain. When the doctor submits a diagnosis of post-viral syndrome and/or fibromyalgia when you have detectable parvo B19 DNA in your blood, the doctor
      is using a “wastebasket diagnosis” that excuses the doctor from
      prescribing any treatment because there is no standard of care for either of these conditions (although Lyrica was FDA approved for fibromyalgia). That keeps them out of fights with
      your insurer for coverage of IVIg. So most doctors fudge the
      diagnostic criteria for fibromyalgia by never testing for infectious
      disease at all. Or, if you have low counts of parvo dna, they will say the infection is over, which is not true.

      I found in the 1980s that massage therapy relieved the pain
      somewhat. I couldn’t afford much of it at the time, so when I found out massage therapists trade massages with each other all the time, I took a course in it and passed the registration design. We studied Janet Travell’s textbook on
      Myofascial Pain. She was President John F Kennedy’s
      personal physician. In her book, she says parvovirus B19
      causes muscle pain and is not fibromyalgia.

      Sometime 20 years later, the National Institutes of Health conducted clinical trials for the benefits of massage therapy and discovered it stimulates antibody production temporarily, which most likely accounts for the few days relief I would get from each massage.

      A rheumatologist tested me for parvovirus B19 dna when I had painful and swollen knees on both sides. The test was negative.

      An internationally famous researcher in the herpes viruses
      was kind enough to correspond with me on email. When I related my story, he advised me to buy a copy of Harrison’s
      Textbook of Medicine and read it. I did. After that, I got a copy of an Infectious Disease textbook. Then, I had an idea of what symptoms went to which infectious disease. These days you can download a trial copy of Harrison’s and probably the infectious disease textbook, too, to your smartphone for free. The Medical Schools require medical students to do this, like a textbook list.

      So then, when I got sick again with the swollen knees and
      my husband remarked that I looked yellow, I asked for a second parvovirus B19, but this time for IgG and IgM antibodies to parvovirus B19. By that time I knew I have low antibody levels in general. And I knew IgG infusions worked for me. But the insurance company canceled coverage for the IgG as soon as it found out my antibody levels in general were low enough for the diagnosis of Common Variable Immune Deficiency and that the treatment worked for me. The company said it needed “more
      information”, and wouldn’t say what, but the World Health Organization’s Report on the Primary Immune Deficiencies
      said there should be an attempt to show an antibody formation failure to a specific disease. So when I asked for the parvo IgG and IgM tests, the doctor couldn’t really refuse.
      These tests showed no parvo IgG or IgM. So we couldn’t diagnose the infection at all. A year later, I had another bout
      of swollen knees. This time I had parvo IgM and IgG, barely
      positive. I emailed this news to one of my doctors who was
      in Switzerland for several months doing some research for
      the World Health Organization because he (Frank Yatsu) was then the Chairman of the World Neurological Association. He said retest the antibodies every two weeks. No local doctors wanted to cross Frank Yatsu. So we were able to track IgG and IgM declining to zero over about 6 weeks. That is an antibody formation defect to a specific disease. The insurance company was very annoyed that it had to cover IVIg, but there was no way out of it since IVIg is the standard of care for Common Variable Immune Deficiency and IVIg is the only available treatment for recurrent/chronic parvovirus
      B19.

      The rheumatologist and immunologist were vaguely familiar with parvovirus B19, but did not know the subject in depth.
      What I did was to print out the latest literature and give it to their HIPAA officers with a request to enter it into my medical
      record. The medical chart is the legal standard of evidence
      for contract disputes over insurance benefits. So entering the
      literature itself into my chart shielded my doctors from
      any accusations by the insurer that they weren’t qualified to
      render a diagnosis of persistent parvo or to prescribe
      IVIg for the Common Variable Immune Deficiency and the
      parvo. It also boxed in any of my doctors who were reluctant to go along because the literature showed it was more likely than not that I had parvo B19 secondary to an antibody formation defect in the context of a generalized antibody formation defect to everything else as well. All you need to
      prove a breach of contract dispute with your insurer is the
      preponderance of evidence that your diagnosis and treatment are correct, that is, more than 50% of your evidence should
      support your diagnosis and treatment.

      There is a physican in Houston, a woman, at one of the medical schools there — I’ve forgotten her name and I’ve never seen her myself — she wrote in a paper that the diagnosis of parvovirus B19 is usually made on a “clinical” basis, that is, simply on the patient’s description of the symptoms and the signs of parvovirus the doctor can see.
      She seemed very sympathetic. I believe there are some
      doctors at Boston’s Brigham and Women’s Hospital who have a bead on parvovirus B19, too.

      I don’t know of anyone else in particular to see other than
      Dr. Kobayashi in Omaha. What I did was to educate myself
      and then offer the doctors the medical literature. They don’t have the time or interest in looking it all up, so it worked out
      pretty well, although it took much too long.

      If you run a literature search on parvovirus B19 online at
      PubMed, you will find most of the articles name one of the
      authors to whom correspondence about the subject can be sent. Usually, they will not discuss your personal situation
      if they know you’re a patient. So I quit telling them. Very often they will answer a question about their work if you limit it to just one. And sometimes they will name colleagues in
      other cities who share their research interest. I noticed
      that doctors usually say, Best Regards, Warm Regards, Kind Regards or just Regardsat the end of their notes. So I just started to say Best Regards, too, so they could pretend they never knew they were corresponding to a patient, which could have gotten them in trouble. It is also very flattering to them
      to be asked for a reprint of their article(s) by mail or by email.
      So I did that a lot, too.

      Good luck.

      • Melissa said,

        Susan, I’m also trying to find some answers. I’ve been extremely I’ll the last one and a half years and had to have two major spinal surgeries. Now I’m putting some pieces together and I believe it’s all from the parvo I contracted. I now have knee pain and foot pain, what kind of pain is it for you?

      • Susan Steyl said,

        I have lingering pain affecting my knees and feet. Have gone gluten free for 16 months and that has decreased inflammation of gut and fatigue.

    • grandanna said,

      A little more info for you regarding CFS, antibody formation defects and infection. I found this discussion of CFS and vaccinations by Charles Lapp, M.D., then of Paul Cheney’s clinic on CFIDS Association letterhead this afternoon while cleaning out my office.

      “For the most part, we at The Cheney Clinic believe it is unnecessary and possibly even risky to take immunizations. Patients with CFIDS
      already have markedly up-regulated immune systems. Any germ or virus that enters the system is essentially neutralized and destroyed
      right away… Patients with CFIDS frequently don’t sero-convert, which means their immune system is so dysfunctional that it does not react to the vaccine by making antibodies.”

      The failure to make antibodies is THE defining characteristic
      of the antibody deficiency Primary Immune Deficiency diseases. The
      treatment is immune globulin. When the antibody host defense
      system is working, the other immune system responses calm down
      because they’re not needed.

  6. grandanna said,

    Just read the fascinating post about antibodies to gliadinin attacking T4. I’ve had a “T4 to T3” conversion problem for years that I thought was due to elevated alpha interferon, which indisriminately destroys enzymes. Mine was sky high… several hundred times higher than the upper range of the usual lab test for it. It was described to me as the
    immune system’s last ditch “scorched earth” defense because it kills
    everything in its path. Interestingly, I tested positive for one of the three antibodies to wheat that define celiac disease, not enough to make the diagnosis, but perhaps enough to mess up my thyroid
    function. Thyroid, B12, and estrogen in adequate quantities are
    necessary for antibody formation. But supplementing them did not
    fix my antibody deficiency. Neither has treatment with immune globulin.
    The infusions, of course, raise my serum IgG and IgG subclasses to the normal range, but not low IgM. For IgM to be formed in the gut,
    you have to have IgA production in the gut. Also interesting is that
    I developed a dozen or so colon polyps. One of them was well on the way to cancer by the time it was discovered and removed. The doctor
    who took it out first agreed and then reneged on testing the polyp tissue for parvovirus b19, but the literature says parvo DNA is often found in cancerous or pre-cancerous colon polyps. Along with Cytomegalovirus. I also have no antibodies to CMV. It is not clear
    whether I don’t make the antibodies to CMV or if I’ve never been exposed. About 70% of people my age have been exposed, so odds are I don’t make the antibodies.

    I’ll look into the parvo homepathic remedies. I don’t know what that might consist of, but if it’s live parvovirus b19, I think I’ll give it a miss.
    I could reinfect myself. But if not, I see no reason not to try it.
    Thanks for the information.

    • Sandra said,

      Homeopathics do not use live pathogens…it is a quantum physics concept of utilizing the “energy” of the substance, whether it be animal, vegetable or mineral.You will need to find a physician who uses homeopathic remedies, rather than allopathic medicines.

  7. Lillian said,

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