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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Lyme on my mind

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 11, 2013.

  1. JT1024

    JT1024 Senior Member

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    Re sinus infections... I've had many and rarely feel completely healed. I think biofilms are really causing havoc in a lot of us. Years of prescription antibiotics haven't helped us either.

    Step 3 in Dr. Ritchie Shoemaker's Protocol calls for the "eradication of multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS) from the nasopharynx, if present. These bacteria form a biofilm making it hard for many antibiotics to penetrate, sheltering the bacteria. Further, as their name implies, they are resistant to at least two classes of antibiotics. MARCoNS rarely exist if a patient has a normal MSH (melanocyte stimulating hormone), but normal MSH is unusual in CIRS (Chronic Inflammatory Response Syndrome) patients. MARCoNS make hemolysins which cleaves MSH rendering it ineffective. Inadequate treatment of MARCoNS will render CSM therapy impotent, perhaps because of the continued assault on MSH. To treat MARCoNS, a combination of therapies is used. Rifampin, a powerful but rarely used oral antibiotic is a mainstay. It is able to penetrate the biofilm and get to the “bugs”. I use 300 mg, 2 tabs daily for 30 days for adults and 10-20 mg/kg/day for children. Also used, in combination with rifampin, is BEG spray, an acronym for Bactroban (mupirocin), EDTA and gentamicin. The EDTA dissolves the biofilm clearing the way for a direct attack by the topical antibiotics. Two sprays 2-3 times a day for 30 days usually do the trick. For children, I use 1 spray twice a day, alternating nares. Start the rifampin and BEG spray on the same day to discourage new resistance emergence."

    Link to additional information is here: http://www.survivingmold.com/docs/McMahon_11_Step_Biotoxin_Elimination_Pathway_Essay.pdf
    and here: http://www.betterhealthguy.com/physician-s-round-table-2012
  2. JT1024

    JT1024 Senior Member

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    I am reading Dr. Richard Horowitz's book "Why Can't I Get Better" right now. In the book, Dr. Horowitz describes a very ill patient that had several miscarriages. They were able to find Borrellia burgdorferi in the placenta and fetus by PCR testing. After further aggressive treatment, the patient became pregnant again and was able to deliver a healthy newborn.
  3. Astrid13

    Astrid13

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    Yes, I need to add that book to my reading list. Reading is quite a challenge though. Either the words jump off the page or the material doesn't stick to my infected brain. All in due time, I presume, right? Any other advice that stands out to you that we could all benefit from?
  4. vamah

    vamah Senior Member

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    I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?
  5. JT1024

    JT1024 Senior Member

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    IMHO, Yes he is. There are several physicians that I follow and while they don't always prescribe the same treatment, they seem to acknowledge fundamentals. Dr. Ritchie Shoemaker of mold fame has significant documentation and treatment success. Others following other protocols also saw some success.

    So many options, too little time for me to be able to evaluate. Hope I can do bettter in the future.
  6. Astrid13

    Astrid13

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    Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to shell out the money for speciality testing through igenex.
    roxie60 likes this.
  7. Astrid13

    Astrid13

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    It took me this many days and re-reading your post to remember that my doc did a culture sample from my nostrils. I was negative, which was good, but it just made me realize how specific testing should be and how much is overlooked. You are an inspiration for being so knowledgable and resourceful. Thank you, thank you!!
  8. vamah

    vamah Senior Member

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    I will try to remember where I found it and post the link
    roxie60 likes this.
  9. August59

    August59 Daughters High School Graduation

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    (Sorry this was so long and if your having a bad time right now and reading abilities are limited you can start with the 3rd paragraph.)

    I was at Walmart recently and was browsing the magazine section. I always like to flip through the "Discover" magazine and this month it has a big article by a researcher that has argued with the CDC that Lyme is present all over the USA. The CDC took for years to relent to the fact it wasn't anywhere but the Northeast, which I know is BS. Although I do not have Lyme as far as I know, I have 2 friends that has had it and one of them almost died because of his primary care physician (PCP). He finally found a LLMD in North Carolina that treated for 2 to 3 years before he became 90% functional, but he still has to watch his diet very close or he will get mild crashes. He went through a couple of times where we thought he was mostly healed, but he would do something to cause a major setback. The last one he felt like he knew what to do and after a couple of weeks he was unable to get out of bed and his wife rushed him to see Dr. Jemsek (who now has a clinic in Washington, D.C. because the North Carolina Board of Physicians literally ran him out of the state.)

    My friend ended up with a shunt in his arm that led all the way to his heart and went through 3 to 4 different antibiotics over a course of a month or two with the shunt and then orally for another 6 months or so. That was his last really bad spell. My other friend was having the same problem with PCP and the first friend I was discussing knew my other friend, but had no idea he had Lymes. I asked him the friend that had seen Dr. Jemsek, to call my other friend to refer him and it wasn't long and he was making significant progress, which he was not doing with PCP.

    Back to the Discover magazine and it has a really good article about how the author of the article contracted Lymes while studying the tick population in the South for Lymes carriers. The CDC still denies that Lymes exist in the Southern and Southeastern United States. The author also references a book, but I do not remember the name of it. I believe the whole article can be purchased online in a pdf format. Here is the link to the article in Discover, but it is not the full article.

    http://discovermagazine.com/2013/dec/14-southern-gothic

    One thing that I thought was a good idea is that they have developed an interactive map so that anyone with Lymes can identify with great accuracy where they know or believe they contracted Lymes. It also allows you to give a brief description of how the disease progressed with them personally. This may also give the NIH and CDC to at least start to think that Lymes does exist in the Southern and South Eastern region of the United States. This map is not for just the United States and anyone in the world can put their information on this map as there are many from Europe already on there.
    beaverfury and roxie60 like this.
  10. roxie60

    roxie60 Senior Member

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    The map may come up just showing the USA, all you have to do is hit the '-' in upper left side a couple of times to see where people are reporting Lyme across the world.

    BTW, there are three pages to this article, I missed that the first time I tried to read it.

    Thank you so muchfor posting this. It is this kind of work that needs to get out there to help those with Lyme to be herad and helped. And it is recent. I still do not know if I have Lyme but I know the feeling of being dismissed for years having be dx with Fibro and CFIDS.

    May those who are blind and in power start opening their eyes to see and their ears to hear. A lot of these researchers and doctors who have tried to keep Lyme pin holed are suffering from their own disease, arrogance and ego.

    If I have Lyme I have tried to put a timeline in my mind and figure out when/where I might have got it. I have always been an outdoors gal so I could have got it anywhere (if I have it) but I particularly remember getting all kinds of bites when at DisneyWorld the first week of June in 2005. Florida was expereincing a drought (I would think it would be less likely to get bit during a drought and in Summer but I then remember my bites occured in the hotel bed and the room was very humid and less hot with the air on all the time, I dont recall getting bit while in the DW parks) and patrons were told they would not wash the sheets unless requested. I know we initially tried to b conscientious and go along with their conservation program. But I was waking up each morning with more and more red bites. I was told it was just bed bugs so not to worry thy would be healed soon. It took months to heal. Now I'm not saying this is for sure when and where I got Lyme (if I have it ;)) but things kinda went down hill health wise since then and more disabling each year.

    I was also told frequently when seeking help from doctors in IL that you cant get Lyme in central IL, even in my non medical mind that made no sense to me (like the bugs just stop at the state line or they assumed I never left the state in this 21 century mobile society, talk about closed minded) but I still respected doctors opinions then so I believed them and did not push.
    Last edited: Nov 24, 2013
  11. August59

    August59 Daughters High School Graduation

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    That article notes that almost every tick can be carrier of Lyme and yes it most definitely exist in IL. One thing that was interesting was that author was finding that in the different ticks they tested many had variants. Here is a quote from the author.

    "Clark also tested his own blood, where he found traces of B. burgdorferi along with another distinct genospecies (a bacterial species separated by divergence of genes), Borrelia andersonii, usually found in rabbits."

    I believe it goes on to say the many of the different tick species may be a carrier of B. burgdorferi and another variant specific to the tick species (might be wrong about this).

    I might try to get that 60 page E-single called "Ticked - The battle over Lyme Disease in the South". There also seems to be an article noted - "Can a tick bite make you allergic to meat"

    I need to be tested by a reputable lab as I went to a routine doctors visit and he found a nymph of some sort of species of tick that had attached right on top of my spine, but by the time he found it, the tick had died, so I have no way of knowing how long it had been attached to me. He went on about his business and didn't say anything about testing me and when I asked him about it, his response was it probably hasn't been on you long enough for the test to detect it and that it usually takes at least 2 weeks. Well, I didn't see him again for 6 months and I asked about it again and he decided to test me with the old CDC standard of "Elisa w/ Western Blot if positive". It was negative if course!

    I hope you feel better soon and certainly hope you do not have Lymes, but if you do I hope you find out as soon as possible.
    roxie60 likes this.
  12. JT1024

    JT1024 Senior Member

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    It is discouraging for all of us that we are not well and basic testing performed by our primary care doctors shows nothing. Even specialists are challenged. Most available testing for Lyme appears to be severely limited. This is my opinion after attending a Lyme Symposium at Massachusetts General Hospital November 9th.

    Depending upon your predominant symptoms and course of illness (e.g. sudden onset/viral vs. gradual onset) we are sent to different specialists. These specialists have predetermined lenses through which they view/diagnosis most patients.

    Unfortunately, we, like many other patients don't "fit" into predetermined little boxes. Doctors don't like admitting their limitations. For this reason, I'm grateful that the their are people like Dr. Judy Mikovits, Dr. Enlander, and Eric Schadt, PhD now working on ME/CFS.

    While various governments apparently want nothing to do with chronic illnesses like ME/CFS/FM/GWI, private funding is apparently moving forward. Sad to see it but some seem to believe these illnesses won't effect them or their loved ones. This couldn't be farther from the truth. Pandora's box has been opened and it has been opened for quite some time.
    Last edited: Nov 25, 2013
    merylg likes this.
  13. Astrid13

    Astrid13

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    Hello! Please post freely and never feel that you should apologize for sharing your thoughts, lengthy or brief :) I have just been a bit off the radar, but I am most grateful that you have read my entry and that you have information to share with us here. I intend on viewing the Discovery article. I'm afraid that we are just on the cusp on a huge revelation with Lyme's. I read something that said that Texas, where I live, has finally passed legislation for insurance companies to acknowledge and pay for chronic Lyme disease treatment so that is a huge feat for me and the South! The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets. I remember as a young girl watching my father remove blood engorged ticks from my dogs. I pray that word spreads far, wide, and deep to help uncover the Truth behind the fastest growing epidemic in the World! Please continue to post and share any further information that you encounter!
    Valentijn likes this.
  14. Astrid13

    Astrid13

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    Amen! You are so corrected! It's just the tip of the iceberg!
  15. Astrid13

    Astrid13

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    Hey there!
    I know you ave tried to backtrack to if you contracted Lyme, when you contracted Lyme, but my research has led me to believe that we can carry Lyme for a long time and it is in a less active, dormant phase. Given some life event, childbirth, surgery, increased stress, our bodies are working hard to recover and kinda catapults lyme into full force. Can you think of a time that you body may have been mor susceptible and given Lyme the green light to spread, attack and create more havoc? Think about that also.

    Bed bugs shouldn't be taken lightly. I know you suspect they might be the culprit, but as August 59 mentioned, these bacterias are being found in a variety of different species.

    I hope you find answers soon, so that you can transition to recovery phase :(
    Sending lots of positive vibes your way!
    roxie60 likes this.
  16. Valentijn

    Valentijn Activity Level: 3

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    I lived in rural southern Oklahoma (less than an hour from the Texas border), and it was heavily wooded and covered in ticks. I had dozens of bites during the two years I lived there, as did the dogs and everyone else. I even stepped in a nest outside our trailer once and had dozens of the little buggers crawling up each leg :alien: It was like that everywhere out there.
  17. Astrid13

    Astrid13

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    Have you ever been tested for Lymes?
  18. Valentijn

    Valentijn Activity Level: 3

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    A Western Blot from LabCorp came back completely negative on all bands, but then again they also said my ESR was normal, which hasn't been the case in the past 3 years from several different hospitals and clinics (including one that was done a week earlier).

    More extensive testing was done by Dr de Meirleir a month ago, but I haven't gotten the results yet. Though rumor has it that I could email one of the labs for some results already.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Infectolab will send the results to you by email--at least they did for me--and overnight!

    Sushi
  20. Valentijn

    Valentijn Activity Level: 3

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    I went ahead and emailed this afternoon. So hopefully I'll have some more info tomorrow.

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