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Re fibromyalgia/Lyme disease/co-infections
1 Replies
Robin1237 - November 14

I haven't been here in awhile, and came back to check. I read through your various complaints about my previous postings. I'm sorry you are upset with Sarah and me. I get your point about not responding to all the posts, so I'm just going to do it in this one post tonite. I responded to all the posts earlier because I could recognize the symptoms described as being Lyme and co-infection symptoms, and the reason that the symptoms are so many is because the spiral (called spirochetes)Lyme bacteria invade the nerves and soft tissues and cause symptoms everywhere. Lyme is known as the great imitator, and can present as fibromyalgia, chronic fatigue, mental disorders such as autism and others, arthritis, ms, als, alzheimers, parkinsons, etc. So whether it's sore muscles or swollen joints, whether it's chemical sensitivity or neuropathy, whether it's brain symptoms or you can't sleep -- all this is what the Lyme bacteria are capable of causing. What I am saying here is real serious -- if you go on a lyme site, you will find that almost half presented with FM. Even the fibroand site has a description of lyme and coinfections now. I would ask that, instead of attacking me, that you google for info on lyme(borrelia burgdorferi), and the co-infections(babesia, ehrlichia and bartonella). For example, one of the recent posts here is about night sweats. The co-infection babesia can cause that. People with it usually get treated with mepron and azithromycin, and there are other treatment alternatives too. All this can be quite a hidden epidemic because people don't always see the tick that bit them, they don't realize an insect bite may have transfered one or more of these infections, and also there is human transmission too through bodily fluids(questionable re tranmission via saliva, tears, sexual contact, blood. proven transmission throught the placenta to the fetus, and through breast feeding).Re whether it exists where you are -- someone mentioned it wasn't in Australia. I googled "ticks Lyme Australia" and many entries about Lyme in Australia came up. It's because birds are spreading the ticks everywhere. Several of you mentioned you tested negative for Lyme. We have people who know they have Lyme, like they got the bull's eye rash -- that for sure means Lyme disease, yet they tested negative for Lyme. Reasons? People are not making enough antibodies to it to be detectable on antibody tests, the Lyme bacteria is in its cell-wall-deficient and cyst form and so not detectable, the strain is different than the ones being tested for, the test is weak(the ELISA is a weak test and misses at least 50%), the lab is a weak testing lab, the CDC requirement of five positive antibody bands in order to be called positive misses people who have less than five. The best tests are the two Western blots, IgG and IgM, done through IgeneX lab. And even then, not all people with Lyme test positive, so it's treated clinically. Treatments vary. Some do well with antibiotics. Some don't. Some are allergic to antibiotics. Most people with Lyme try a lot of options, like herbs(Buhner, Cowden, Zhang protocols), oxygen treatments to counteract the anaerobic bacteria, Rife machines, detoxing, supplements to counter the biological damage, etc. We all find things that help. Ultra mangosteen juice is saving my eyes from inflammatory symptoms now, including ending light sensitivity when I started drinking this anti-inflammatory juice. I have been studying this for a year and a half now. Sarah has run a national hotline for eight years now, and she has posted her contact info under the Robin and Sarah sites. The best doctors to consult are connected with ILADS. They are trained to recognize and work with testing and treatments. I am sorry this communication has been so difficult for you, but if you can understand, it has been equally difficult for me, and still is, as I had FM for 25 years before somebody online clued me in. And I still have a lot of symptoms. It's a challenge to treat. But at least now I know I'm dealing with an inflammatory bacterial condition and can study it. A lot of study is required to learn how it operates in the body and how people are fighting back . So forgive me, but I really wanted to respond in one post to these comments here and tell you I am for real in what I'm saying and to not attack me or Sarah but to go and google for info on the diseases I've mentioned, to get to know their symptoms, like I have had to do, and am still doing. And then to have a discussion about questions that you might have. Take care. Robin


skidoo - November 14

Actually, Fibromyalgia is called the "Great Imitator". Google it. While I support your right to post here, and appreciate you taking the suggestion to do a single post rather than cut and paste response to multiple posts, I believe it is wrong to diagnose people over the internet (Telling them their docs are wrong and they really have Lyme). A suggestion that they be tested for Lyme because of very similar symptoms and possible misdiagnosis woulld be more appropriate IMHO.



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