Multi-Systemic Infectious Disease Syndrome, Do You Have It?

Discussion in 'Fibromyalgia Main Forum' started by RadioFM, Nov 5, 2014.

  1. RadioFM

    RadioFM Active Member

    The focus of this thread is to provide resources and rise awareness of the world wide epidemic of Lyme disease and it's possible connection to chronic unexplained illness we see today.

    Lyme disease may be only part of the problem -as these Multi-Systemic Infections have many co-infections. If you have been sick with a chronic unexplainable illness such as: "Fibromyalgia" you may need to be evaluated.

    My doctor said I tested negative for Lyme disease?

    I thought Lyme disease and was not a risk factor in my FM as I tested negative. I re-tested using Igenex lab in California, a more sophisticated testing methods only to find out I was infected with Lyme and many co-infections.

    I want to add -many chronically ill people have made this same mistake and suffered needlessly.

    Lyme disease is often mis-diagnosed as other diseases or syndromes such as: Lupus, MS, Chronic fatigue, Fybromyalgia, and Restless Leg Syndrome. If you research this thread you will see there are many possible risk factors that may raise the susceptibility of developing these chronic infections.

    Please review links below and never give up the Fight!

    Lyme Disease, Do You Have It?

    Woman Heals From Morgellons, Lyme, and Hyper-toxicity

    Lyme Disease Diagnosis, Incidence and Controversy

    Last edited: Feb 24, 2015
    Sherpa_ likes this.
  2. RadioFM

    RadioFM Active Member

    Last edited: Jan 29, 2015
  3. RadioFM

    RadioFM Active Member

    Lyme Disease: What You Don't Know CAN Hurt You!

    "Most people think of Lyme disease as something you get from a tick bite. However, recent evidence suggests that it may be passed from person to person! In fact, some experts think that more people now get Lyme disease from other people instead of tick bites. This workshop will explore the signs, symptoms, and treatments for Lyme disease that most people are not familiar with. "

    "Key topics include: Key topics include:"

    "What exactly causes Lyme disease"
    "Co-infections of Lyme disease"
    "Diagnosis of Lyme disease"
    "Conventional and Integrative treatments for Lyme disease"

    Lyme Disease and Complications: The Hidden Public Health Problem You Need To Know - See more at:
    Last edited: Nov 12, 2014
  4. Nanie46

    Nanie46 Moderator

    Thanks for helping to spread the word that Lyme disease and related co-infections can be common causes of chronic illness that many doctors miss.
    RadioFM likes this.
  5. RadioFM

    RadioFM Active Member

    "There is a commonly held belief in medicine, called Pasteur’s postulate that there is “one cause for one illness”. This does not apply to patients with chronic Lyme symptoms, or those diagnosed with Fibromyalgia. Once we address infections like Lyme disease and all of the other underlying etiologies on the MSIDS 16 point map, resistant fibromyalgia symptoms often improve."

    Dr Horowitz Lyme Disease and Chronic Illness

    Last edited: Jan 14, 2015
  6. saint1

    saint1 Member


    As always, you've done your homework. I can't believe you are focusing on Lyme Disease, as that is the conclusion I drew after much research. I had suspected it for a long time but my blood tests came up negative until the last time - came up positive.

    I've been using the Cowden protocol but may be allergic to the artemisinin I bought to kill off any co-infection. I was thinking of trying the salt + C protocol. Any thoughts on this?

    RadioFM likes this.
  7. shah78

    shah78 Member

    Hope this new direction reaps many benefits. I'll look into it, myself.
    RadioFM likes this.
  8. Sherpa_

    Sherpa_ Member

    I had no idea that Lyme could be transmitted by anything other than tick bites, and could be present without severe fatigue, pain, stiff neck, etc.

    I spoke with a Lyme practitoner who said that co-infections other than Borrelia - particularly Chlamydia pneumoniae/trachomatis - is quite common and should be checked for by anyone suspecting Lyme.
    RadioFM likes this.
  9. RadioFM

    RadioFM Active Member

    Hi Saint1,

    I feel the Salt/Vitamin C protocol may be a one dimensional therapy and may not be appropriate for long term intervention.

    I believe chronic Lyme disease and it's many co-infections may be a life long illness that will need life long support.

    Never give up the fight!

    Last edited: Dec 17, 2014
  10. RadioFM

    RadioFM Active Member

    Hi Shah,

    Please keep me posted on any testing you may have done that may be relevant to this discussion. It's important we document are stories so that others can see recovery is possible.

    Last edited: Jan 14, 2015
  11. RadioFM

    RadioFM Active Member

    Co infections Presentation, Diagnosis and Treatment HD

  12. saint1

    saint1 Member

    Radio - it's good to be in touch again. You helped me out a lot. I finally regained my energy after 8 years of being bedridden. I think the NT factor you told me about worked. I switched to the Nutricology powder & use it every day with Warrior Blend protein powder (only rice protein I read is safe from heavy metals).

    I also went on Valcyte. I was afraid due to it's high toxicity, but Jose Montoya has been having success with it I read. I also began the Lyme protocol - so I'm not sure what worked - but something did. I also went on S-acetyl glutathione. It made me sore ALL OVER at first - and I could only tolerate it every couple of days. Now I'm taking it every day. I read that a sluggish liver is intricately involved in CFS/ fibro - and the glutathione helps.

    I finally had a breakthrough. Still sore though, but my energy is better than it has been in years.

    You don't think the salt + C protocol is too good? I was thinking of switching to it because I've been getting inflammation - probably from either the Samento or Artemesinin.

    Do you have inflammation? My parents did not take care of my teeth as a child, and I had a ton of mercury fillings removed. Now, all the nerves in my teeth feel like they are inflamed. Has anyone experienced this?? I've been brushing with Pronamel, but it's the nerves inside the teeth that hurt.

    I take a good quality multi with B12 supposed to help neuuropathic pain but it isn't working.

    Do you take anything for inflammation?

    Thanks again for the hand up - sharing your knowledge.

  13. RadioFM

    RadioFM Active Member

    "Do you take anything for inflammation?"

    I have utilize green tea extract to help block TNF/ NF kappa-B mediated inflammation in the past. I am also a BIG fan of raw ginger tea as well.

    Another good blocker of NF kappa-B mediated inflammation is Curcumin. Although high doses of curcumin can increase irritability in some people as it's a monoamine oxidase inhibitor so keep that in mind if have anxiety related issues.

    Another good NF kappa-B blocker is Ashwagandha. You may also want to consider anti-inflammatory that targets COX-2 mediated inflammation support.

    Such as:

    • Cat's claw

    Note* Chinese skullcap
    , reduces nitric oxide, IL-6, IL-17, COX -2, NF-xB, TNF-a and may upregulate IL-10...

    Warning: Chinese skullcap may have diuretic properties to consider.

    Also, Acetyl-glutathione may be another possible therapeutic option in improve detoxification.

    I feel diet may be the key to controlling oxidative inflammation long term. I have also found that walking is another great strategy combined with a diet high in DHA to help reduce inflammation and improve cellular function.

    My Crazy Immune Boosting Turmeric Elixir -

    Ingredients: 1 Lemon, 1″ Ginger Root, 1″ Turmeric Root, 1 tbsp Manuka Honey, 1/2 cup Coconut Water, Dash of vanilla bean and cayenne pepper.

    Make a Pitcher: 8″ of turmeric, 3″ ginger, 2 lemons, 1/8 cup honey, 1 vanilla bean, 3 tablespoons of cayenne and 24 ounces coconut water and 12 oz water.

    See more below:

    See more here:

    The information in this thread is not intended to be medical advice. The information is meant to inspire and motivate you to make your own decisions surrounding your health care and dietary needs. It is intended for educational and informational purposes only. You should not rely upon any information found on this thread to determine dietary changes, a medical diagnosis or course of treatment. Readers should perform their own research and make decisions in partnership with their own health care providers. This thread is for educational purposes only to document that recovery is possible. Never Give Up The Fight!
    Last edited: Feb 28, 2015
  14. Nanie46

    Nanie46 Moderator


    I wondered if you have tried daily oil pulling with organic virgin or extra virgin coconut oil for your dental inflammation?

    Coconut oil can do amazing things.
    RadioFM likes this.
  15. saint1

    saint1 Member

    thanks for info on dragon's blood - I'll look into it. No I never tried oil pulling. I do have Artisan coconut & will start taking it - thanks for the tip. I started on it over the summer but I put it in the cabinet & forget about it. I didn't know coconut was anti-inflammatory.

    I tried the curcumin but I think I'm allergic to it - my body is so hyper-sensitive - when I try to take something new I get a reaction - swelling in eyelids & migraine.

    I take omega-3 Wholemega.

    I thought about pycnogenol - a friend of my husband's takes it because he went to this baseball game and all these old men were on it & they were all in good health, so he said he started taking it. I didn't know it was anti-inflammatory. I had heard people use it to help with allergies - and I have allergies.

    Radio - have you ever looked into liver congestion as being part of the picture of fibro/ cfids? I bookmarked a site on it and it made sense. Liver congestion is associate with allergies as well. I've been drinking lemon water, but need to find something stronger for liver. Been taking S-acetyl glutathione & that's supposed to help. I started ALA doing the 3-day Andy Cutler protocol & had the worst headache that I had to stop. It must be a combination of the ALA with the S-acetyl glutathione is too much detoxing at once.
  16. RadioFM

    RadioFM Active Member

    "Have you ever looked into liver congestion as being part of the picture of fibro/ cfids? "

    I believe that the liver detoxification problem may be related to a defective in cytochrome P450 proteins.

    There are many things we can do to improved detoxification.

    Such as:

    Anti inflammatory diet
    Coffee enemas
    Gallbladder flush
    Milk Thistle, Liv.52, Alpha Lipoic Acid
    Lemon water
    Last edited: Dec 24, 2014
  17. RadioFM

    RadioFM Active Member

    Multi-Systemic Infectious Disease Syndrome, Do You Have It?

    Moderator@ Quote:

    "I had a flu-like illness in late summer 1987, with a severe sore throat, headache, fatigue and fever.
    My Dr told me I had a virus. Weeks later I developed an ache in my right hip. Weeks after that, I experienced severe painful throbbing in every joint in my body. When that finally subsided, I was left with all-over muscle pain and stiffness and sleep problems. I was diagnosed with fibromyalgia.
    As I got older, my symptoms slowly worsened. I developed severe fatigue and insomnia. In 2007 I tried antivirals without much effect. I learned I had food sensitivities and eliminating those foods did help decrease my symptoms. I exercised and that helped a little also.

    "In early 2008 I tried Ambien CR for sleep and my symptoms became much worse. I developed severe, excruciating head and neck pain. It felt like a 4 inch diameter drill bit was drilling through the base of my skull and coming out my mouth 24/7. My neck was extremely stiff also.
    The fatigue, insomnia and brain fog were also relentless. I did not know how I would live this way. I was not getting any help from local Dr's, so I did my own online research and discovered that I had many symptoms of Lyme disease (Borrelia burgdorferi) infection, a bacterial infection spread by ticks.
    I realized that it all fit Lyme and other tick-borne diseases...the flu-like illness, the aching hip, the throbbing joints many years ago, the muscle pain and stiffness, the fatigue, the insomnia and other symptoms.
    The Dr who ordered the anti-virals, agreed to order the Lyme tests that I requested through Igenex lab in CA. I had already had Lyme tests through a local lab that were negative."

    "When the results of the Igenex tests came, I got a copy and compared my results to the information about western blots found in the paper "Advanced Topics in Lyme Disease" by Dr Joseph Burrascano. Even though the test was read as officially CDC negative, I knew I had Lyme specific bands on my results, which was significant. I found a Lyme literate MD and had a very thorough evaluation in Feb 2009. I was diagnosed with Lyme, Bartonella and I also discovered that I had Rocky Mt Spotted Fever at some point in my life. I treated with the Lyme literate MD using long-term antibiotics, bioidentical hormones, supplements, etc for 3 years and I did improve at least 80%! I no longer have the fatigue or insomnia. My pain has improved and I no longer wonder how I will live this way. I am always researching and trying new things in the hopes of achieving even more improvement. I continue to exercise and eliminate certain foods such as gluten, sugar, high fructose corn syrup, dairy and soy. I am very thankful to my Lyme literate MD. He saved my life."


    Mikey is another forum moderator with a similar story of a chronic infections being a contributing factor related to his illness. I could post many other stories just like this from the PR forum.

    If you have been sick with a chronic unexplainable illness such as: "Fibromyalgia" you may need to be evaluated for Lyme Disease/Multi-Systemic Infectious Disease Syndrome as well as non-Lyme MSIDS.

    There are many possible risk factors that may raise the susceptibility of developing these chronic Biofilm infections.

    See more here:

    Last edited: Jan 16, 2015
  18. saint1

    saint1 Member

    I read that liver congestion causes fibro/ cfs symptoms. Before I knew any better I was on Lyrica & a host of other drugs that I'm sure was bad for my liver - making the problem worse.

    I'm convinced that the medical establishment is one big fraud. All they do is perpetuate bad drugs for your "health" - it's all bass-ackward. Our insurance should be paying for vitamins - but no - they pay for life-destroying drugs and chemicals that every good little doctor prescribes for his patients to keep in line with the profiteers.

    I do the lemon water & milk thistle & the ala periodically. Last time must have moved some major toxins because I got the worst migraines imaginable - I had to stop the Cutler 3-day program.

    Have you tried psyllium husk? I read that fiber is good for liver/ gall bladder.
  19. RadioFM

    RadioFM Active Member

    Hey Saint,

    I agree with you on so many levels. Please send me a PM and I can try and help you locate an experience well informed health care provider in your area. Never give up the fight!

    Last edited: Nov 18, 2014
  20. saint1

    saint1 Member

    How do you pm on this board?