Lyme Diagnosis, Opinions

Discussion in 'Fibromyalgia Main Forum' started by wrthster, Feb 21, 2007.

  1. wrthster

    wrthster New Member

    I was recently diagnosed with Lyme by an experienced LLMD. Prior to that it was CFS/FM by the Rheumatologists. If anyone has experience with Lyme here are my test results from Quest. I wanted to do this first, since Igenex charges a fortune and does not work with any insurance. Before I undergoe the treatment, which is heavy duty I am very open to suggestions.



  2. mollystwin

    mollystwin New Member

    I'd get treatment if I were you. I've been told by my doctor that reaction to any band means you have lyme.

    But I'm new to this. Anyone else have an opinion?

    You should also post this question on the lyme board.
  3. jarjar

    jarjar New Member

    Yes by all means seek out treatment. I am so glad Quest caught it. Igenex does still offer the basic western blot for around 200.00. Thats all most LLMD's need for a diagnosis. The PCR testing is a waste of money.

    The truth is a very high percentage of the people on this board do have lyme and were just like me and presumed I had cfs/fm. So many of the patients that have gotten their lyme diagnosis leave the board and move on to lyme boards.

    I have been down the lyme road with different antibiotics and found the Marshall Protocol to be the most effective for my recovery but everyone is different.

    Wishing you good health

    [This Message was Edited on 02/22/2007]
  4. cristine04

    cristine04 New Member


    be careful with the lyme thing. it seems that it is very politicized by BOTH sides. the LLMDs have been accused of saying that every symptom- be it a hiccup, a stye, a joint pain, etc is due to lyme and necessitates long-term antibiotics, even IV antibiotics. On the other side, the non-LLMD doctors tend to discount the reality of the disease. I wish there was a happy medium but there won't be until good, reliable testing can be done and plenty of data is out there about who gets well, who doesn't, etc.

    Igenex is the mother's milk for many LLMD's. I was tested positive on almost every band by Igenex. But then again it seems that just about everyone who gets tested there comes back positive. My doctor called Igenex and was told that the bands cross-react to certain other antibodies.

    There are also stories floating around about how various doctors are sending in their own blood samples and receiving the same, high titers from Igenex. I don't know if this is urban legend or true.

    I ended up doing very aggressive antibiotic therapy. Combination therapy, etc. to no avail. For me it was all about clinical response and I think that's how it should be for everyone. Treat it empirically.

    So, if you have many of the symptoms, perhaps give the treatment a shot. My rheumatologist who is very balanced on lyme (and is an honest, decent person whom I've worked with for years now) said she is highly dissatisfied with Ignenex as well as all other lyme tests. Her advice was "try the treatment, see if you get well."

    What angers me is that there exists zero data about the long-term antibiotic therapies for lyme patients. This is probably because the testing isn't reliable. People are left to go onto web boards gathering anecdotal evidence about how it worked for Susie Smith but not for George Ryan. Such is the way it is right now for lyme disease (and many others) I guess...

    This is a round-about way of saying read a lot about lyme treatment, lyme doctors, etc. The pro's and the cons. It is your body and if you want to try the treatment, do it. There is no better way of seeing if you have a lyme infection than doing the treatment with the lyme meds and seeing if you have the classic "Herx" followed by an improvement.

    Also, if you go to certain lyme support boards you will find some people who've been on there for years while on antibiotics. They can offer you insight too.

    Good luck!
    [This Message was Edited on 02/22/2007]
  5. jarjar

    jarjar New Member

    There have been many people over the years post on this board saying they tested negative on Igenex just f.y.i.
    There is so much to be studied about the disease to get to the bottom of it and there are so may different methods to treat it other then antibiotics. Last year my LLMD said of a small group of his patients, a high percentage of the people had dramatic results using just the Salt and Vita C protocol.

    Here is un update on the epidemic lyme is becoming.

    CONGRESS NEW bill supporting Lyme research 02/08/07 10:15 AM
    PRNewswire/USNewswire February 6, 2007

    "U.S. Rep. Chris Smith (R-N.J.) announced today that he has introduced bipartisan legislation to authorize a $100 million, five-year plan to dramatically expand Lyme disease research and education."

    WASHINGTON, Feb. 6 /PRNewswire-USNewswire/ -- In an effort to address the escalating number of Lyme disease cases in New Jersey and across the nation, U.S. Rep. Chris Smith (R-N.J.) announced today that he has introduced bipartisan legislation to authorize a $100 million, five-year plan to dramatically expand Lyme disease research and education.

    Smith's bill -- the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007" (H.R. 741) -- would improve tests used to diagnose Lyme disease, enhance the public health surveillance systems and improve our public education campaign to prevent new cases of Lyme disease. It also would create an advisory committee on Lyme and other tick-borne diseases.

    "The number of reported Lyme disease cases in New Jersey has skyrocketed in recent years. Our state currently ranks third in the nation in the number of reported cases, trailing only our regional neighbors, New York and Pennsylvania. We must increase our investment in understanding and combating Lyme disease before these numbers reach epidemic proportions," said Smith.

    In 2005, the number of reported cases of Lyme disease climbed to a record high of 3,372 in New Jersey and approximately 22,000 nationally.

    Since only 10% of cases are actually reported, approximately 220,000 Americans developed Lyme disease in 2005 (the most current numbers available).

    "The US Centers for Disease Control and Prevention (CDC) admits that if more accurate diagnosis and reporting procedures were in place, their own data would peg the actual number of cases in New Jersey at over 30,000 in 2005. Improving testing and surveillance should lead us to a more accurate reflection of the extent of the outbreak in our state and across the nation," said Smith.

    Symptoms of Lyme disease may include fever, headache, fatigue, and sometimes a rash, which may be an expanding bull's eye shape. If not diagnosed and treated early, Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system and cardiac systems. Due to the debilitating affects of Lyme, many patients lose their jobs and must apply for disability.

    A long-time advocate of Lyme disease research and prevention funding, Smith has introduced legislation aimed at increasing Lyme disease research and awareness in previous sessions of Congress.

    Last July, Smith convened a Lyme disease summit, bringing together the national director of the Center for Disease Control (CDC) Julie Gerberding, other lawmakers, doctors and activists to discuss ways patient and physician needs could be better met.

    The "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007" (H.R. 741) is the first legislation in the
    110th Congress to specifically address Lyme disease. Thirteen members of the House signed on as original cosponsors, four Republicans and nine Democrats.

    "As the numbers show, the Lyme disease outbreak is only going to get worse the longer we wait to address it. I will continue to vigorously work with my colleagues in Congress to secure passage of this important bill to enhance our ability to treat this debilitating disease and begin to reverse the trend of record Lyme disease cases," said Smith.

    For additional information on Lyme disease, please visit
  6. cristine04

    cristine04 New Member

    New York Times:

    And here is the response from Nick Harris, owner of the lab:

    I'm just trying to report both sides. It's hard to do that because when it comes to lyme people get very aggressive.

    Most doctors (except those on either polarized end) will agree there is no reliable test for Lyme disease. I hope a good test comes sooner than later so people can truly know once and for all if they have it.

    Apparently Igenex got approval from the CA and NY Medical State Departments of Health BUT they're being accused of having one testing practice during inspection and a new testing practice after inspection.

    Lastly, I'd like to add that it is more or less irrelevant that people on this board have tested negative from Igenex over the years. It all goes back to not having enough real data and way too much anecdotal evidence. What is SELF-REPORTED here is not scientific (interesting, supportive, thought-provoking, yes, but not scientific) and sick people deserve science- not anything less.

    Do your best to sift through the information and try to talk to all sides.

    Good luck to you!
  7. winsomme

    winsomme New Member

    i think the only advice here is "trail and error."

    i have been through the ringer on what the cause could be for me (lyme, mycoplasma, viral (herpes, coxsackie, etc).

    personally i think that different people have different causes, and since the testing is not all that reliable for any of this, the only way to go is "trial and error"

    the problem with that is some of the meds can have side effects (ie Valcyte, and antibiotics) and how do you tell if you are having a side effect from a med or a Herx (meaning the med is working).

    also, how long do you go with a treatment before you decide it is not working?

    i don't have any good answers here eventhough i think about these questions a lot.

    my best advice is to get as much of the testing as you can afford (ie antibodies, immune function, PCR, SPECT scans, MRI, etc.) and then if you decide to try a treatment, stay in touch with other people who have tried the same treatment and get all the blood tests done that will look for any adverse effects (ie liver, kidney and immune function) and ask about things people do to combat these effect.

    i know with lyme it is important to do things to prevent intestinal yeast.

    a great resource for lyme is the "flash discussion" message board at lymenet:

    also i really like the nutritional and supplement suggestions of Dr Nicolson for the treatment of a chronic mycoplasma treatment.

    look at the treatment considerations section.

  8. jarjar

    jarjar New Member

    The only reason I mentioned that many people over the years have said they have tested negative with Igenex was because of your statement.

    Igenex is the mother's milk for many LLMD's. I was tested positive on almost every band by Igenex. But then again it seems that just about everyone who gets tested there comes back positive.

    Now you are saying it is irrelevant that people have posted negative on this board.

    Not trying to stir anything up but just wanted to make it clear that people do post negative with Igenex.

    Lets look at the upside and be glad she got a diagnosis with Quest. No need not to go back and forth over Igenex.
    This will be my last post on this topic. Its a beautiful day here and 79 degrees...I'm going to go out and enjoy it!

    Best of health to all
  9. karinaxx

    karinaxx New Member

    i dont know much about Lymne, but i think Victoria does; on this baord. Her son has been battling with this and i think it would be good if you post for her exp.
    she is allways very helpfull and knows a lot.


    PS. if i would be you i would test with another lab, before rushing such a long term ABX treatment.
    ABX could have adverse effects and its allways good to see a specialist for whatever you have.

  10. wrthster

    wrthster New Member

    All of you have great points! And I thank you very much for sharing them. It is really very confusing, and it is a shame there is not one all conclusive test. The Western Blot tests are based on Flagellum proteins, which can exist in many types of infectious Organisms. I have also tested positive for Mycoplasma which is a common co-infection with Lyme, and very high titers for HHV6 and Epstein Bar. I know also I have a major problem with fungus/Candida.

    So the way I look at, especially because I have been on a ton of antibiotics the least several years is to go with caution. The antibiotics have done wonders, but at the same time have created many problems. The doc wants to use IV antibiotics, I am really not to happy with that.

    I think the bottom line for all of us here, whether its Lyme, CFS, FM ect. is our immune systems are not working properly. If that underlying problem which most docs don't seem to address is not looked at, you can keep throwing antibiotics, fungals, virals at it and it will keep returning.

    I am very interested in learning more about the Salt and Vita C protocol? I did speak with one doctor down here that does IV vitamin C. Very reasonable price. I think I would definately be more inclinded to try that before the IV antibiotics. IF that fails, than I would move to the IV antibiotics. But vitamin C is much much safer, so why not try that first.
  11. karinaxx

    karinaxx New Member

    i think you are thinking into the right direction.
    victoria might be off the board, have not seen her for a while;sometimes on the chit chat.
    i will help you keep it bumbed.

    in my recent post about adverse drug reactions somebody posted on the vit.C and salt protokoll. it wasnt so positive and it sounded weird. check it under my profile a few weeks back.

  12. dreamdust

    dreamdust New Member

    Good morning all,

    I am new to the board (living in UK)

    I'm a FM sufferer (I think) diagnosed by my GP Jan 2006 but have never been to see a Rheumatologist (have had symptoms since 2003/04 and prior to this had often thought had I cotracted Lyme disease.

    I do remember reading somewhere that Lyme disease is very difficult to diagnose because the test results do not show up positive if one has had a dose of antibiotics previously (within 18 months) the test being carried out (as this acts as a masking agent). Is there anyone there that can can throw some light on this and do you think this should be looked into.
    Best wishes to you all.

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