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To Larry and Dream69
6 Replies
BrandyO - January 25

Dream69 and Larry... your post always amaze me. You are both very articulate, intelligent and very informed. I have trouble remembering my name someday's, lol... how do you do it. Brandy

 

tcmby - January 31

yes I agree! thanks so much for trying so hard to help & inform us all. i find your info very interesting & helpful. keep it coming! plus, you are always polite & giving.... so thanx :)

 

larry - February 1

Thank you both. I feel so fortunate that I am getting better. I don't have pain anymore so I feel that my hormoes are balanced now. I am workin on the mitchondria malfunction and the infecions as we speak. I was so shocked to find that I have infections (Epstein Bar, mycoplasms, Lyme, and anothe strange one). The F&F centers states that bacterial and viral infections also attack the thyroid and endochrine and this starts fibro as well as the physical and emotional stresses. It does make sense now. I wonder how many people on this site can remember getting sick or having an infection in their life where they didn't really feel fully recovered? How many people have reoccuring infections, sinus, urinary, etc.? I had a double whammy, reoccuring sinsu infections and 1/2 my thyroid removed. How about you?

 

JJ1 - February 1

Larry, If you have Lyme disease you should really be seeing a specialist for Lyme disease. I am not sure what type of doctor treats Lyme, but I would be concerned that the Fibro and Fatigue center may not be the best approach for this. if left untreated or improperly treated, the effects of Lyme can be quite serious. I will ask my friend who she sees for her Lyme disease. I know she travels to specialists in other cities, her case is so bad. She went 15 or more years undiagnosed and actually passed Lyme in-utero onto two of her three children. Her husband was also infected but was not as bad off and was easily treated. They think they got it when they were growing up in Minnesota and before they even knew each other.

 

JJ1 - February 1

By the way, I don't have recurring infections. No urinary infections (only had it once when I was catheterized for a medical procedure) and no sinus infections since my office moved from a "sick" building.

 

JJ1 - February 1

I "googled"t and found that the appropriate specialist for Lyme would be an infectious disease specialist or a neurologist.

 

larry - February 1

Thanks JJ1. Thanks for looking that up for me. It really never occured to me to go to an infectious disease specialist. Probably because this is a multi system syndrome as well as there are many existing co-infections and malfunctions in the other parts of the body that I choose a specialist in fibro. I believe that this fibro stuff is a mystery (to some) because traditional medicine fails to teach doctors how to look at the body holistically. The other obstacle that needs to be overcome is the testing standards. Standard tests will miss over 90% of cases of chronic Lyme disease. (As evidenced by your website posting about misdiagnosis). I knew that I wanted a different result so I tried a different approach, medical doctors that can see the body holistically, have healed thousands of people and who also had fibro themselves at one time. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients. Otherwise, addressing one problem, an infection, without addressing the hormones or the nutrient deficiencies is like putting new tires on a car with a dead starter and a blown engine. I wanted a different result so I took a different route and it is working. Sorry about thinking you were the lady that wanted the whiplash documents. I also am taking care of an elderly mother- so I understand the stress. Please keep me updated on your friends progress. Thanks. Sorry that this is so long.............

 

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