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Lyme Disease and XMRV

Discussion in 'XMRV Research and Replication Studies' started by mezombie, Oct 13, 2009.

  1. Sing

    Sing Senior Member

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    For Samuel--copying your story

    Dear Samuel,

    Well you might just copy and paste your story into the Personal Statements section. And you could check through the Forums and search the Threads for the most relevant sections to also paste in a copy or two. I have read elsewhere here that it is okay to do this. I personally don't know how to make links or do things that way, and don't see that it would serve your purpose as well, but maybe someone else can chime in with their advice.

    Cecelia
     
  2. myco

    myco Guest

    Klutzo,

    A good LLMD will prescribe a combination of antibiotics (say Doxy, Zith, Flagyl) that will hit the borrelia, chlaymydia Pneumoniae, or Mycoplasma Pneumoniae in all it's forms (l-form, cyst form etc..) You must also address coinfections like Babesia and Bartonella.

    Sounds you were the rare bird who actually had the rash, as it appeared later in treatment. If I were you I would keep treating until YOU HAVE NO MORE SYMPTOMS with a very good LLMD. Lyme does not go away on it's own.

    My LLMD finds that often Lyme patients don't get well when they don't do combination therapy as listed above, while also addressing the co-infections. IV is often not needed.

    Side effects are not common with orals as listed above. For instance, teens take Doxy for many years with no ill effects. Many patients have tolerated 3-4 abx at a time with no problems. You do need to included the proper drainage remedies for Porphyria however, otherwise the die-off will be confused with getting worse. I had die-off that came and went for over 2 yrs depending on the abx I was on. However, I came out just fine ; )

    Be well.
     
  3. brenda

    brenda Senior Member

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    samuel

    I was poisoned too by pesticide - I had moved into a rented house what was overrun with cat fleas so asked the landlord to send exterminators - I was really ignorant. To improve you need to have strict environmental control of your bedroom by getting as many chemicals out as you can and if it is not too polluted outside, have your windows open. There is usually more pollution inside then out. I don't know how much you can do in your situation but relieving the chemical load, in food as well, will improve you slowly. If you can get an air filter, I would. I have had strict control for a number fo years and it has helped me more than anything. Do you have a gas furnace? You could be allergic to the gas. Some people with chemical sensitivity have to live in cars or tents etc to get relief.

    klutzo

    I was diagnosed with cfs 10 years ago as a dustbin diagnosis as the doctors did not pick up my lyme. But I had been sick for long before that but had thought it was candida before the pesticide. After reading on here, I am doubting whether it is the classic cfs/me as I have not had the swollen glands and could walk more than others with cfs/me until I got the lyme and then it varies a lot and i can walk when I am not in a bad relapse like now.

    I think that a lot of my problems are mercury and pesticide poisoning added to lyme and I am not interested in a label just that i am very sick and I will not take anti-virrals if I have XMRV - though I doubt if I will get tested as they are so toxic. I think that maybe I don't have cfs in the recognised expressions of it.
     
  4. mezombie

    mezombie Senior Member

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    Klutzo

    One of the best descriptions of PEM I've seen is part of the Canadian ME/CFS Criteria:

    Post-Exertional Malaise and/or Fatigue: There is an inappropriate
    loss of physical and mental stamina, rapid muscular and cognitive
    fatigability, post exertional malaise and/or fatigue and/or pain and
    a tendency for other associated symptoms within the patient's cluster
    of symptoms to worsen. There is a pathologically slow recovery
    period;usually 24 hours or longer.

    Does this help?

    I also have come across many people who were diagnosed as having FM if the diagnosing doctor was a rheumatolgist; with CFS if someone else. FM-like pain can be a part of CFS. Likewise, one can have both FM and CFS.


    Myco, please note that Klutzo is allergic to abx.
     
  5. kolowesi

    kolowesi Senior Member

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    Klutzo CFS?

    I wonder about this too.

    I was first told CFS, then CFIDS, then Epstein-Barr reactivation, then mycoplasma, then mercury toxicity, then probable lupus, then CMV, then HHV-6a, then enterovirus, then Lyme. And I have left out the minor players.

    For me, PEM is sometimes delayed. The stronger I am when I over-do it, the longer before it hits me. This past summer, I tried physical therapy. I started having PEM the 3rd week and missed 3 appointments, then went back. By week 5 I had a total relapse, as in sleeping most of the day. For me, it's cumulative.

    So you may be stopping before you trigger it because you know your envelope.

    Or maybe you feel so sick all the time, you don't feel worse with over-doing.

    Sometimes I get a low-grade fever, but maybe that's from the exercise killing the Lyme?? Maybe it's not really PEM for me, I just don't know.

    Yours in confusion
    Kelly
     
  6. myco

    myco Guest

    Having experience working in the pharmaceutical business I know it is fairy impossible to be allergic to every antibiotic. The Sulfa drugs are the most common. Klutzo most probably had a herx reaction to a number of them. Remember, millions of people take Doxy on a daily basis for many years with absolutely no problem. However, just one dose in the beginning sent me to the ER with tachycardia. None of them cause any reaction for me anymore. This is because the bacterial load is way down. This is really just common sense. Anyone interested should go over to Cpnhelp.org and read about secondary porphyria. It is widely documented and easy to diffuse by taking the proper measures. Really just a matter of spending some time educating yourself. People often confuse allergy to die off. They are very different. An allergy involves an immediate rash, throat closing, tongue swelling, etc....This is very typical of an allergic reaction. Flu-like symptoms, tachycardia, nausea, vertigo, anxiety attacks, seizures, flushing, stomach distress, are all very typical signs of die-off and can be relieved with cholestrymine, large doses of C, B-12, charcoal and other binders.

    I think my work is done here. If interested please visit the sites I mentioned. It worked for me and I had "CFS" since for at least a decade before biting the bullet and committing myself to the treatment. It's a long haul, but worth it. There really is no other treatment out there. Be well.
     
  7. zoe.a.m.

    zoe.a.m. Senior Member

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    wow, do i know this scenario!

    If I had ever taken the time to write about my PEM in a helpful way to myself, it would have sounded just like this.

    It's so strange to hear such a miserable and confusing set of symptoms that confound me every time that I experience them as someone else's experience too! It's very helpful that you differentiated between the two types: immediate PEM and delayed PEM. I can't figure out which is worse since with the one I feel as if I'm being punished and with the other I feel good for a little while before I feel like I'm being punished. I get the fevers every time with them. I've been told they're deficiency fevers, but I don't know how that translates to Western medicine.
     
  8. mezombie

    mezombie Senior Member

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    Pem

    Me too, Kolowesi and Zoe.a.m.!

    The PEM reaction can definitely be delayed. I think even the studies of PEM done by the Pacific Fatigue Lab showed that, though they looked at the next day or two days reaction.

    The fire alarm went off in my high rise building a few months ago, and I found myself dragging two cats and myself down eight flights of stairs. To my amazement, I did not collapse. I was even able to function pretty well when I got back up to my apartment (by elevator this time!). But the next day I could barely move.

    This isn't really the best example of a delayed PEM reaction. I've definitely had the same experience you two have. I just go and keep going and then suddenly, out of the blue, I crash.

    I do think part of the solution is trying to stay within our energy envelopes. It's hard to figure out the boundaries when they are shifting, though!

    What I try to do is be very, very mindful of my body's reactions to anything new for it. So while I find myself able to take walks now and then, I will baby myself if I'm out and feel partially OK but notice my legs are starting to feel a bit odd.

    I took a Tai Chi class and often skipped it. When I went, I would stop doing the movements if I started to feel a bit funny. Not sick, not in pain, just...like my body didn't want to go there.

    Was it Collinge who wrote about the 50% solution? I try to keep that in mind. He suggests considering what you think you are able to do and divide that by half. Only do that.

    And Kolowesi, I hear you about the ever-changing diagnoses! :rolleyes: That's why I started this thread, frankly.

    A rose by any other name would smell as sweet.
    William Shakespeare
     
  9. klutzo

    klutzo Senior Member

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    To MICO

    Dear Mico,
    I guess you are gone by now, but if you are still around, I want to let you know that I thought the same as you did, so I went to an allergist and had skin testing, hoping against hope that some of those reactions were just herxes. Tests showed I have 4+ allergies to Sulfa and all ABX except fluroquinolones. 4+ is the highest level of allergy there is. FQs are my only option, and as far as I know they kill Bartonella, but not Lyme. I was also told I'd better save the FQs for any immediately life-threatening illness, since repeated exposure would tend to make me allergic to them as well.

    My TH2 immune dominance is overwhelming and is a symptom of CFS, if I am not mistaken. Using Neosporin for two weeks straight on a deep cut resulted in permanent allergy to it. I have had many experiences like that where exposure caused permanent allergic or chemical sensitivity and have almost died more times than I can count from insect stings, since getting this illness.

    Yes, I know I cannot get better without ABX, but it's too late anyway. I have end stage organ damage and will most likely die of the pancreatic failure I have, unless one of my other serious problems gets me first. One reason I stopped going to LymeNet was I got very tired of people telling me I would die and even suggesting that I should take steroids all the time so I could handle the ABX! That is nuts, since Lyme thrives on steroids. I know I am going to die, and I am cool with it, but I don't need to be reminded every five minutes, thank you very much.

    I am very glad to hear your program worked for you and you got better. Have a long and exciting life!

    klutzo
     
  10. klutzo

    klutzo Senior Member

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    Defining PEM

    Dear Marie,
    Yes, thank you, your definition helps. I definitely have what you describe, though it depends on how much I do and what I do, but the doctor who did the Neuropsych evaluation for my brain damage testing way back in 1995 said my shortened physical endurance is because I have severe damage to the part of my brain that handles fine motor skills endurance.

    Was it the car accident head injury that caused this like he says, or could CFS have caused this damage? I asked him, and he told me emphatically that I did not have CFS and that my brain damage patterns were totally consistent with the type of head injury I had sustained. In fact, he feels everything that is wrong with me is due to that accident, since I should have died from the head injury. He isn't buying FMS, CFS or Lyme!

    His adamant opinion helped me with disability, since he told them I was permanently and seriously injured, that he could not believe I was able to get out of bed, let alone walk, and they had better not be reviewing me and wasting the taxpayers money. That got me ten year disability review, which was a huge relief, as those of you who go through reviews every 3 years no doubt know.

    He told me that CFS presents with a distinct pattern of brain damage unique to it and only to it, that he would feel confident diagnosing CFS based just on seeing a person's neuropsych evaluation! I have learned the hard way never to trust just one medical opinion on anything and that "opinion" is the key word there. I may never know the answer to this.

    FWIW: Just to throw in another monkey wrench, a nationally known psychic gave me a reading for my birthday in 1998 (it was a present from my spouse), He had no info on me except my name and credit card number and I made sure beforehand that I had never charged any health related items or other revealing things on the card I used.

    He asked me what I wanted to know about and I said my heatlh. He immediately asked me if I had heard of Chronic Fatigue Syndrome or Fibromyalgia. Not wanting to help him at all, I just said that I had heard of them. He said: Well you have both of them". I aksed him if they were not the same and he said no, but many people have both. I asked him if he knew the causes, and he said they ae both caused by viruses and that many new viruses we have no resistance to are being let out into the air as the rainforests are burned. That was a new one I had not heard before.

    You may think, so what, that was just a good guess as to what was wrong with you. I thought it was pretty specific. But, he said several other amazing things and he predicted something that I felt was so impossible that I laughed at him. A year later, it came true, just as he said. A few other smaller things have come true also. In a half hour phone reading, he got only one thing wrong and it was something he could easily have gotten right if he had made any advance attempt to find out about me. Knowing where my area code was located would have prevented the one mistake he made. Note that he did not mention Lyme....hmmm.

    Make of it what you will. I still don't know if I have CFS (I empathize, Kolowesi). Maybe labels don't matter, just symptoms. Of course, if XMRV pans out as THE cause and they develop a reliable test, then we can know for sure.

    When I was studying Naturopathy, all of the people in that field I encountered believed that CFS and FMS are the end result of systemic breakdowns of the body's systems that can be caused by many, many different things.

    klutzo
     
  11. kurt

    kurt Senior Member

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    XMRV Study mentioned by Kathy Blanko

    Janis,
    I believe I know that study Kathy Blanko mentioned, and am participating in it with my daughter, so I may be able to help you. Please send me an email (Through my board profile). They are still recruiting people (as of Nov 6). There are still a few slots for people with ME/CFS, particular with multiple family members with ME/CFS, or Autism in the family.
    --Kurt
     
  12. myco

    myco Guest

    Klutzo,

    I am very sorry to hear that. My LLMD works with a very good naturopathic Dr who has helped many people (100's and counting) get well. If you need her number please let me know via private message. She is in Southern CA.
     
  13. klutzo

    klutzo Senior Member

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    Naturopathy for Lyme

    Hi Myco,
    Now you've got me curious. I studied Naturopathy myself for over two years but stopped short of a dissertation when I found out it is a felony to practice in my state. My husband's job is not portable and our house has gone down 45% in value, so we can't sell it. Didn't seem much point in finishing.

    I have seen eight CAM people, including naturopaths, 3 TCM docs, and Integrative docs during my 24 yrs. of illness, spending a whole year with the last one, who was a 27 yr. practicing naturopathic DC. Where I live you must have other credentials to practice, like MD, DC, DO, etc. since the ND by itself gets you nothing but jail time. I've done numerous protocols from Zhang to Cowden, plus NAET, MH vials, lots of Standrd Process, etc.. I spent 4 yrs. on Cowden, herxing unbearably on Samento.

    There is no more money for any of that now, with unemployment running 23% in my husband's trade. For well over a year now, we have only known about two weeks ahead if he will ever work again, and all I get is a tiny disability, since I've been on it so long. We have no family. The stress is enormous.

    I thank you very much for the offer of the info on the Naturopath you admire. I am much too ill to travel all the way across the country, even if I had the money. I can't even handle the overstimulation on our local 6 lane roads and my cardiologist has ordered me not to ride on them, since it triggers PSVT attacks. Now we have to ride on one to get to our new primary doctor, so I take extra drugs and wear industrial headphones.

    If you know of a naturopathic treatment for Lyme that actually works, I am sure I am not alone in wanting to know more. I would love to hear about this person's protocol. I hope the naturopath you are speadking of is planning on publishing this info. I don't know anyone else besides me who is allergic to all ABX but FQ's like I am, but I know many over at LymeNet who have failed to improve on ABX who would be very interested.

    Thank you,
    klutzo
     
  14. jenbooks

    jenbooks Guest

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    Klutzo there are more than you think who can't tolerate antibiotics either because of allergy, organ damage, or in my case such puzzling resistant and systemic fungal issues. Though many can benefit from the approach that helped myco there ate those, evenon the cpn board, who are so sickened by them, causing dangerous symptoms that are not necessarily related to die-off or porphyria. Most of us who have a Lyme diagnosis or a serious bacterial component to our condition have tried antibiotics but would prefer to be alive than dead. Once again I'm not talking about 'herx'' or porphyria.

    That said, I am yet to experiment with PE-1,a Nogier frequency LED device which is used at acupuncture points along with homeopathic nosodes held against the solar plexus. I know two people who got well this way.Selma is one. It requires superb muscle testing and right choice of remedies. It is using information at a mord subtle level to shift the pathogen load and the body's response. The maker of PE-1 is worth talking with. He also sent me an interesting 2006 article on light and healing from the scientific journal NATURE. You have studied naturopathy and are intuitive you said. You might be able to train yourself.
     
  15. klutzo

    klutzo Senior Member

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    Pe-1

    Dear Jenbooks,
    When you use this Pe-1 device, would you please keep us appraised of how you do with it? I am interested in anything I've not heard of before, and I've not heard of this one. I have no money to spend right now.

    My only problem with muscle testing is that I was taught that it is paramount that the tester must be in better health than the testee in every way, and how can you be sure? The tester may have some awful disease starting up in him/her and not even know it.

    Still, I do believe in the basic principle. As you know, in Naturopathy it is believed you are no healthier than your weakest organ system, so that has to be identified and worked on intensely. I've been muscle tested by 5 different CAM docs, having told none of them what the others said, and all 5 told me my adrenals are my weakest organ system. If they are even weaker than my pancreas, they must be shot. This agreement among them speaks to the accuracy of the testing, IMO.

    I agree with you that I've seen some awful problems from ABX in the people I know personally, esp. systemic yeast and C. difficile. I understand that they are desperate enough to try anything, since the morbidity of this illness makes it so unbearable that 22% choose to check out. I would probably have tried ABX too if I were not allergic and if insurance would pay for it, which is highly doubtful.


    klutzo
     
  16. jenbooks

    jenbooks Guest

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    abx, muscle testing

    Yes, I will let you know. I have to clear an emotional/time space to try it. I haven't yet. You can learn to muscle test yourself--it's probably better than paying practitioners--
     
  17. brenda

    brenda Senior Member

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    I can't take abx either and have late lyme. I will nor be able to tolerate herbs I am sure long enough to heal me so I am going for frequency - I am buying a rife and you can get them second hand or small units even cheaper from Germany sold in the US for 250 euros. However, I know that I cannot do this till my amalgams are out and I know that my liver is not up to that or to detox at the moment but I am going to have to get my liver function tested before I can go any further. Detoxing mercury and treating lyme are very difficult to do together but I feel confident that somehow I will manage. For now I am taking support herbs for my liver till I can get it tested. Having a positive attitude no matter how sick we are is vital - if we are negative we will get what we expect.

    My heart was the worst and was in crisis but I have been treating it with cayenne and think it is better. I think that medications make things worse.
     
  18. Wayne

    Wayne Senior Member

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    Lyme - XMRV - Judy Mikovitz

    Hi Myco,

    Thanks for your reply to me. I mentioned earlier in this thread about my hesitation to start aggressive Lyme treatment without knowing whether I had the XMRV retrovirus or not. A member here (Sing) made the following comments (thank you Sing) on the recent Judy Mikovitz XMRV presentation:

    So I think I'm going to trust my own intuition on this, which seems to be in line with what Judy Mikovitz is currently thinking. And I think she's pretty smart, a lot smarter than me.:Retro smile:

    Thanks again for your reply, and thanks also for all of the detailed information that you took the time to post. All very interesting, and it may be the route I will take some day. Just not a this time.

    Kind Regards, Wayne
     
  19. darkrobot

    darkrobot

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    Does anyone know if any Lyme patients have been tested for XMRV? If so what were the results? I'm intrigued by the possibility of having both, and how likely it is.

    Were Lyme sufferers excluded from the original WPI CFS studies?
     
  20. rebecca1995

    rebecca1995 Apple, anyone?

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    darkrobot,

    Yes, I know of at least a couple people with Borrelia infections who have tested positive for XMRV.

    We don't have a lot of information about what infections the original Science cohort of 101 had. It's entirely possible that some of them were infected with Borrelia...but even the WPI might not have that information, especially if the Bb was undiagnosed.

    Dr. Mikovits said in her presentation that they just decoded the study over the Christmas holidays, so perhaps we'll learn more about the features of the cohort over time.

    :Retro smile:
     

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