More people should talk about lyme

Discussion in 'Fibromyalgia Main Forum' started by jarjar, Apr 7, 2007.

  1. jarjar

    jarjar New Member

    I should thank munch for pointing this out in another post. Thought it deserved its own separate post for those who missed it in the immunesupport bulletin a couple of weeks ago. The test results of the CFS/FM group is what I as well as others have been trying to tell people for a couple of years. A very high percentage of the people on this board are dealing with lyme. It kills me to see people talk about losing thier vision and getting crutches or wheelchairs when I have seen people healed of these matters with the proper antibioics.

    Immune Support post:

    Thank you, Robin, for your "Let's Talk Lyme" letter [in the 2-28-07 CFS Newsletter]. No one else has been courageous enough to mention CFS, FM, and Lyme in the same sentence. After 20 years of being told I had CFIDS, go home, rest, and adjust your lifestyle according to how you feel, I was finally diagnosed with Lyme. I am being treated and am finally starting to see results. A CFIDS/FM support group nearby had 43 people volunteer to be tested for Lyme and 38 came back positive. – Donna

    Note: You can search for more on Lyme, including the story of one woman's eventual diagnosis - "Differentiating Lyme Disease from FM and CFS" and information about a potentially useful Lyme research site.
  2. monicaz49

    monicaz49 New Member

    I support this posting 100% .

    But even though I have an igenex positive test...i still dont put everything into that diagnosis. However, i do think i deserve to give the antibiotic route a fair long i am. If a year down the line there are no changes...ill try the antiviral route.

    But yes....test for lyme via western blot!

    I just met yet ANOTHER girl who has cfs/fibro....i mentioned lyme and she said oh i tested negative for that...but ive had tics on me many times throughout the years! She says she doesnt have lyme though cuz she never had a bullseye rash! She's poorly informed on it. And she needs the proper test done.
    She has many off the wall symptoms like myself....

  3. kellyann

    kellyann New Member

    I have chronic Lyme Disease, which I feel is the cause of my Fm and CFS. I am so sick right now I can barely sit up straight.
    Take Care!
  4. Mikie

    Mikie Moderator

    My daughter will be asking her doc for this test. Last year, she had a bite with a bullseye rash but the doc wouldn't test her. She now has a new doc. FMS runs in our family and it's just too easy for docs to overlook other possible diagnoses.

    Lyme if far more widespread than formerly thought. It ought to be eliminated right away as part of the initial testing.

    Best of luck to you and all who struggle with this. Actually, I've never been tested for it. Since I took Doxycycline for so long and now take the TF C, I figured I probably have treated it if I ever had it. Still, it wouldn't hurt.

    Love, Mikie
  5. victoria

    victoria New Member

    Please make sure your daughter's doctor gives her the Western Blot at least; at best tho, even it's only 70% reliable. Given her history, I sure hope that regardless of how her tests show, her doctor will hopefully give her a trial of abx at least. Even the FFC's treatment is quite different from what I've seen my son's doctor recommend... as well as the original pioneering doctor here in US, Dr. Joseph Burrascano.

    I'm not putting down the FFC, there's a lot of different protocols... and many are working...

    When I asked about what doctors were good in Atlanta, I was told by all who responded who were in the Atlanta area to not waste my time and money here, to go directly to Dr. Jemsek in Charlotte. (Granted, the FFC I don't think was here then anyway.) However, he currently cannot give more than 2 months abx to anyone and then only if they show up positive according to CDC's 'guidelines' for 'tracking purposes' only... after August his restrictions should be lifted.

    As many people know there is a huge war being battled over how to treat Lyme, sadly, and many doctors are being taken to task and harassed ... the IDSA 'guidelines' are now being taken as rules and a reason to deny proper treatment for long-term cases by insurance companies, even tho people have shown improvements and begin to decline when stopping abx.

    It will pay for everyone who thinks they may have Lyme or any other stealth pathogen like mycoplasma to educate themselves as much as possible. There are of course other protocols to try besides the LLMDs abx protocols, including the MP, herbal, rife machine, etc...

    Overall tho, for Lyme, one of the best non-profit places to go to is, where I started. The CFIDS Chronicle also did an interview with Dr. Jemsek back in Summer or spring issue of 2005 right after our son was dx'd.

    My son is showing gains after nearly 2 years of oral abx and hyperbaric oxygen treatments... besides Lyme, we figure from his continuing neuro symptoms (memory, concentration, irritability, depression, etc) he has bartonella and babesia, he also gets weird head sweats only, plus eye floaters still...

    but most of his migrating muscle & joint pain and limbs going to sleep (arm used to go numb from just having BP taken!) have pretty much remitted, and his BP and pulse are now in low normal range (were too low before, ie, pulse was 48)...

    he is now 19, almost 20... we figure he's been suffering since age 12, but since it can be asymptomatic there's no telling how long he's actually had it. He never even had a bulls-eye rash, but yes, he would've caught here in Georgia.

    Hope this helps... it is an immense subject, hard to put it all on threads here.

    Carla and others, you might want to look at ILADS, LDA and some of the other organizations for research info.

    all the best,

  6. Mikie

    Mikie Moderator

    I'll copy and e-mail your post to my daughter. You are really a great resource here and I appreciate all your efforts.

    Love, Mikie
  7. victoria

    victoria New Member

    And for everyone, everybody should check the Library up above, there are a lot of articles about Lyme too.

    Also, here's a link to a copy of Dr. Jemsek's interview in the CFIDS Chronicle at Melissa Kaplan's site, a non-profit site; she has excellent comments thruout:

    [This Message was Edited on 04/07/2007]
  8. jarjar

    jarjar New Member

    Carla I got to a point where I stopped keeping up and reading all the latest on lyme. It seemed most people had to go down their own road for recovery and find what works for them. Some used natural things like salt and C treatment or rife and some low dose pulsed abx like the MP or some bicillin injections were the answer. Seems everyone responds differently. I found the MP was the best road for me.

    Spacee I know on Lymenet I have read people speak of things that eventually brought their vision back but its been awhile back as I spend less time on the boards since I am feeling better.

    I remember the first time I was waiting in my LLMD's office a guy walked in and I asked him how he was doing.
    His reply was that this was his one year follow up and when he came in the first time he was on crutches. So people do get better one just has to find the right path.

  9. victoria

    victoria New Member

    is the Marshall Protocol... which has been much discussed on here, I am doing it too altho I have not gotten myself tested ($$ is being spent on son mostly). It is working for me too.

    Again, you can look in the library here, as well as go to the Marshall Protocol site for info...


  10. Mikie

    Mikie Moderator

    It's actually my own daughter. She is seeing an infectious doc in the Atlanta area and she really likes her. I hope she can help.

    Love, Mikie
  11. Banka8

    Banka8 New Member

    I just want to chime in here and say that the Marshall Protocol is the way to go to get rid of what ever bacteria is causing our problem. I don't think there are many people in the world who do not have a bacterial problem. It's just that some are more ill. Almost everyone I know has TH1 symptoms.

    I know so many women with thyroid disease it's ridiculous. It really is an epidemic.

    It wouldn't surprise me that I had lyme bacteria but I know the Marshall Protocol is going to get rid of whatever I have multiplying in my body be it virus, fungus, bacteria etc.

    JarJar is right. It is so sad to read about the misery of all the sick people posting. Some are not only losing their health but also their family's because the family doesn't understand the disease.

    I'd like to see everyone recover and move on to better health.

  12. zipk

    zipk New Member

    Hi B8:

    Per your response a few weeks back, I just PM's you on the MP site. Please go there and take a look....

    Zip (rubyann on MP)
  13. zipk

    zipk New Member

    Hi Jar:

    I'd really like to speak with you about MP and your doc. Please let me know somehow how I can reach you...

    Zip (rubyann on MP site -- you can PM me there if that works for you...)
  14. bunnyfluff

    bunnyfluff Member

    I was tested neg. last year by the standard Lyme tests, but continued to get more and more ill. I am not one to take all of this "lying down", so to speak- I really want some answers!

    I don't want to be told- well, it's all just CFS- go home and rest, you can't get better, blah, blah, blah.....

    The Dr I am currently seeing is a microbiologist and looks at the blood "live" with you, not a dead smear, and sure enough, there was Lyme hiding out!! As well as some parasites which I am now being tested for with a saliva test.

    Dr Rollins is very well versed in the treatment of Lyme with herbs and the Rife machine (thanks for mentioning it, Victoria). The biggest problem you have with treatment with Abx is that the Lyme will form a hard cyst around itself to protect itself from the Abx, and the strongest will survive and will come back to get you over and over again. The herbs have a different effect, disrupting their ability to flourish.

    Many of my symptoms matched up with Lyme, the small joint pain, etc., and now the cognitive is getting horrible, too. The neurotoxins that the Lymes gives off stays in your body, and I am trying to get rid of it with bentonite clay, etc.

    I'm not saying that everyine has Lyme, but a great many do and don't know it, and neither do their Dr's. I would have not known if it had not been for Dr Rollins. God Bless her, and I am hoping that my path to recovery @ this point can be quick- I am hoping for marked improvement in 1-3 months, total recovery in 6 months.
  15. bunnyfluff

    bunnyfluff Member

    The Pitfalls of Laboratory Testing

    John Drulle, M.D.

    Since Lyme disease is caused by a spirochete bacterium, Borrelia burgdorferi, the ideal diagnostic test would be one which could isolate the bacteria from the patient by culture or direct stain. This is rarely accomplished.

    There are a few blood tests available, but they are not reliable, at this time, according to the CDC. Currently available commercial tests for Lyme disease provide indirect evidence of exposure to the Lyme bacteria. Most experts believe that the ELISA test (the typical test used by most family doctors) is only about 30-60%. When someone is infected with the Lyme bacteria, the immune system responds by making specific proteins, called antibodies, whose role is to seek out the Lyme bacteria, attach to them and initiate the process of destruction. In most patients, these antibodies are unable to destroy the Lyme bacteria, which by methods which are not completely understood, may remain alive in the human body for many years, in spite of high “titers” or concentrations of antibodies. Detectable levels of these antibodies may not be found until 3 to 8 weeks after exposure. Significant illness may be present before the test is positive. A number of patients clearly do not develop measurable antibodies. This is usually due to antibiotics given early in the infection for Lyme or non-Lyme infections. There is significant strain variability in Lyme bacteria isolated in different geographic areas, and since commercial tests have been developed from certain particular isolates, they may be incapable of detecting antibodies to a different strain of Lyme bacteria. It is also possible that some people’s immune systems do not recognize the Lyme bacteria is an invader and do not produce specific bacteria and their fragments; they may combine with all the circulating Lyme specific antibodies. Current commercial antibody tests for Lyme can only detect free circulating antibodies, and are incapable of detecting those bound up in immune complexes. Investigational tests have been developed to free these sequestered antibodies and render them measurable by the standard tests. There is wide variability between tests of commercial laboratories, and it is not unusual to have a serum sample test positive in one lab and negative in another. The percentage of Lyme patients who test negative on the antibody tests is close to 100% if the test is performed early in the infection, to anywhere between 5% and 40% in late disease, depending on the particular published data we wish to site. It is also known that false positive tests can occur. These may be due to other previous or current spirochetal infections such as syphilis, tick-borne relapsing fever, leptospirosis, and gingivitis. Some patients who have rheumatoid arthritis, Lupus, or mononucleosis may test positive. Some people who appear to be in good health and have no Lyme related symptoms may test positive. This may indicate past exposure to the Lyme bacteria, with spontaneous recovery, or it may represent a dormant infection which may activate at some future date and cause clinical disease. This has been well documented in European literature.

    The Western Blot is also available for Lyme disease. Here various sized Lyme antibodies are allowed to migrate on a strip of filter paper. They separate into distinctive bands, and serve as a fingerprint for Lyme disease. It may be useful to sort out false positive tests and in cases where the antibody titer is “borderline”. Since its results depend on the presence of Lyme specific antibodies, the same factors which can cause a negative serologic test may cause a negative Western Blot. The U.S. Center for Disease Control (CDC), unfortunately, has set criteria arbitrarily for reading a Western Blot test as a positive for Lyme disease. The criteria were set up for statistical analysis of the spread of Lyme disease and were not intended in general to guide doctors in diagnosis and treatment of the disease. The CDC surveillance criteria are very strict and miss many people with Lyme disease.

    The most common errors made by physicians in interpreting these previously mentioned tests are:

    A negative test excludes the diagnosis of Lyme disease.
    A negative test in someone who previously tested positive and received antibiotic treatment implies “cure”.

    PCR analysis is another type of test that looks for the DNA of the Lyme bacteria in the blood, urine, or tissue. To obtain a sample that contains the bacteria, multiple tests are usually required. In recent years, PCR testing has become extremely reliable when positive.

    According to Medical textbooks, the FDA and the CDC, Lyme disease is a clinical diagnosis, which means that the doctor should examine the patient for typical Lyme disease signs, look at the patient’s history and description of his or her symptoms and use this information to make a diagnosis. The laboratory tests may be a useful adjunct in making diagnosis, negative results do not rule out the possibility of the disease. They should not be relied upon for diagnosis.

    Testing is also available for co-infections, namely, Babesiosis, Erlichiosis, and Bartonella. Although B. burgdorferi remains the most common pathogen in tick-borne illnesses, coinfections are increasingly seen in patients with Lyme disease, particularly in those with chronic illness. Recent animal and human studies suggest that Lyme disease may be more severe and resistant to therapy in coinfected patients. Lyme disease patients should be aware that concurrent testing and treatment for coinfection should be mandatory.

    Originally written by John Drulle, M.D. in 1991 and updated by the John Drulle, M.D. Memorial Research Fund, Inc. in 2005

    This is scary stuff, folks.

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