assistance with treatments

Discussion in 'Lyme Disease Archives' started by Perrier, Feb 4, 2009.

  1. Perrier

    Perrier New Member

    Hello to all the generous and fine people on this board:

    I post on this site (CFS and Lyme) only rarely but the help I find here is amazing.

    My daughter was diagnosed with CFS in 2002--it has been a journey through some kind of hell; she got better in 2006 and then relapsed in Dec. 2006; then got better and now has relapsed in Oct 2008. So, in all the years since 2002 she has had only I would say about 20 months (not all together) of what I would call a life that approximates something normal; otherwise it has been a life of severe sickness or semi functioning(if compared to normal). She is an adult, and has lost all her 20s.

    Now we have just learned because we have the tests from Igenex and from another Lab. that it looks like she has Lyme; she certainly has the CDC criteria and lots more. The co-infections are questionable, because they are negative on Igenex and they appear on the other lab.

    I read an excellent brief post here by Renae who outlined the 6 major treatments for this frightful disease, which is starting to remind me of 19th c. neurosyphylis and tuberculosis. Anyhow, there were the following treatment methods outlined: antibiotics, herbs, MMS, Rife and Bio-photon.


    Would someone please help me and tell me something about Rife machines. Are there better machines and less effective ones. The doctor wants my daughter to start with this and herbals.

    Also, what is MMS? (My daughter is highly sensitive to meds.)

    And what is Bio-photon therapy? Where can one get this? ONly in Germany?

    I would be most grateful for any assistance.

    I have spent, along with my daughter, these past 7.5 years reading tons of stuff about CFS, and now it seems we have to take another path.

    I have to ask why this Lyme was not looked at before. This is most distressing.

    I live in Canada; if anyone has any knowledge of good doctors in the US for this, or in Canada, please also let me know.

    My daughter has lost her youth in pain, like so many others on this site; I so want to help her.

    And my final question: is it possible to heal LYME? And what % of people get out of this circle of hell?

    Thanks and God Bless.

  2. Shalome1990

    Shalome1990 New Member

    This is a distressing situation because Lyme Disease is very controversial. Lots of MDs do not believe in a "long term chronic Lyme". We are trying to bring more awareness, but every local doctor I go to tells me you don't have Lyme, even though I am CDC positive.

    I was diagnosed with Chronic Fatigue/Fibromyalgia for 20 years. I only found out in Oct. 08 that I had Lyme. It took that long for a doctor to even test me for Lyme. I didn't even know what Lyme was at that time.

    There are good doctors, but we can not give their names out via this board. You have to privately tell others what your situation is and why you need the doctor. The reason for this is because the LLMDs (Lyme Literate Medical Doctors) are being persecuted for treating us. Even though we are very ill.

    The doctor I am going to is 17 hours away and so far up north that it seems as if he would be closer to you than to me.

    Do you maybe mean MCS - Multiple Chemical Sensitivities??

    I do not know much about rife machines, I have never used one. However, other good resources are LymeNet.org. They have so much information that I haven't been able to make it through all of the resources yet.

    Some people can get a lot better with treatment. But, you have to find a really good LLMD who knows Lyme and its co-infections.

    Thanks,
    Shalome

  3. Perrier

    Perrier New Member

    Thanks for your email post; forgive the tardy response; I have been run off my feet.

    I found the name of a Dr. Maureen McShane in upper NY state; I am trying to contact her; but the doctor said that my daughter must not take antibiotics at this point but must start with some gentler method.

    This is all a nightmare, a daily nightmare. Peace be with you.

    email: dielymedie@gmail.com
  4. Renae610

    Renae610 New Member

    MMS = Miracle Mineral Supplement, http://mmsmiracle.com/faq/
  5. Shalome1990

    Shalome1990 New Member

    Perrier,

    Renae is a very good source of information. Her daughter also has trouble tolerating medication. I am on antiboitic treatment and plan to go to my LLMD in March to see what he says for me to do.

    I have been ill for 20 years, and think I need the strongest treatment I can tolerate.

    Please be prepared for your LLMD visit. There will be a lot of information given to you, so bring pen and pencil and be prepared to write a lot down. Also, write any and all questions you have before you go, so you can get them all answered at once.

    Ask her about the different treatments and what would benefit your daughter best.

    Lots of luck to you. If yo go to Lymenet.org you can find me and that boards answers lots of questions too!! I am Needs Lots of Help!! :)

    Thanks,
    Shalome
  6. j9chan

    j9chan Member

    Hi Perrier,

    Where in Canada are you located? I'm in Toronto and have been sick with Lyme for a few years now. I have tried many things and know of a few Lymie friends here in Toronto. Please let me know if you're interested in getting in touch with us. Thank you.

    Jacky
  7. Daisys

    Daisys Member

    Please edit your post and take the doctor's name off. If you ask a LLMD if they want their name on the internet, they will definitely say NO. They practice at the risk of losing their license. The only reason they know about lyme is because either they, or someone they love, has lyme. So, they will treat to cure, but as posted already, they do get threatened with the loss of their practice.

    One place that allows private messaging is Lymenet flash medical questions. You can exchange information there that won't harm the ones who are putting their necks out to help us. Thank you. :)
  8. dfwx

    dfwx New Member

    MMS Miracle Mineral Solution is sodium chlorite (a form of chlorine). They want you to add citric acid to it to turn it to chloride doxide - another form of chlorine and exactly what is used as the chemical in swimming pools.

    Chloride dioxide is one the most dangerous of all chemicals. It causes cancer, birth defects, infertility, damages kidneys, liver, the nervous system and is rated among the worst chemicals for damaging the eco-system.

    See www.inoneminutecure.com/mms.htm

    for more details.

    The Multi Level Marketing company that picked up this old wackos book - he claims that because chlorine kills germs therefore if you drink it in concentrated form it will kill disease - put their army of affiliate sellers who get a big commission writing fake testimonials, posting fake studies, swearing WILL cure everything from cancer to snoring - in hundreds and hundreds of websites - including paid advertising.

    This product, Miracle Mineral Supplement pushed by MLM companies is no different than in the 1920s when those same type people and companies were taking out magazine ads literally selling radioactive water as the cure to all diseases - claiming radiation kills germs and virus so therefore radiation will cure everything including cancer - just like the affiliate advertisers and that old wacko claim that drinking cancer and health destructive chlorine will cure all diseases.

    Most scams don't hurt you. They just take your money. This one can (and will) destroy your health and ultimately kill you.