Discussion in 'Fibromyalgia Main Forum' started by quanked, Aug 29, 2011.

  1. quanked

    quanked Member

    Whan I saw my doc last she agreed to work with me on my CFIDS in terms of ruling out other medical issues.

    To be honest I cannot recall all the things I have read about here to rule out but I do recall seeing lyme mentioned many times.

    She told me that there are number of labs around that are not reputable and are really only after money when it comes to lyme testing. So I thought I would pose the question here.

    I am not up to doing any research at the moment and I see her next week.

    Thanks in advance for any responses.
  2. Mikie

    Mikie Moderator

    We've had discussions here in the past about testing and labs. Did you use the search feature to try to find any old info? It might help. Also, you might try the Lyme Board but it doesn't get the traffic we get here.

    Good luck.

    Love, Mikie
  3. Nanie46

    Nanie46 Moderator


    First, I must say this:

    Lyme should NEVER, NEVER be ruled out based on just a negative lab test, although 99% of Dr's mistakenly do this all the time.

    Lyme is a clinical is based on history and symptoms. It can be supported by labwork, but it is not necessary......again 99% of Dr's do not know this.

    Igenex lab in CA is the lab where you should have lyme testing done.

    You should go to

    Call them or email customer service and ask for a free test kit.

    It comes with a prepaid fedex mailer and all the paperwork, including the Dr's order form.

    Since you see your Dr next week, you can go to their website and print the patient test order has 2 sides. On the Igenex site, click on Forms and Sample Requirements, then click on Test Request Form.

    The Dr has to fill out their info on the front and then order test #188 and #189, western blot IgG and IgM.

    Igenex requires prepayment by check or credit card. They do, however, accept medicare if that applies to you. The cost was $200 last time I heard, but you can check with them.

    They will send you a receipt that you can then send into your insurance to see if you can get reimbursed.

    Igenex is the only lab that tests for 14 IgG bands and 14 IgM bands.

    Other labs only test for 10 IgG bands and 3 IgM bands! Those labs leave out some very important lyme specific bands.

    Your Dr might try to say that Igenex just wants to make money, but not true. It is the best lab for lyme testing.

    It is very important for you to know that lyme testing is not foolproof by any means.

    This test looks for antibodies against the lyme does not look for the bacteria itself.

    The bacteria, Borrelia burgdorferi (lyme), is usually not found in the blood. This very complex bacterial spirochette is found in all the body's tissues......organs, tendons, muscles, etc.

    It is VERY COMMON for people with chronic lyme to have an officially negative result on these tests.

    The way it is reported is "CDC negative" or "positive" and "Igenex negative" or "positive".

    Those are only REPORTING criteria they are using, not diagnostic criteria, which leaves many people who have significant bands present, with an officially negative result.

    Also, many times, a person's immune system is no longer producing antibodies against the bacteria.

    The tests are only able to detect antibodies to 2 strains of Borrelia.....any variations of borrelia that have not been identified or have not had tests developed for, will not be detected.

    It is SO VERY important to not allow a Dr to rule out Lyme just by looking at results that say "CDC negative".

    That is the very biggest mistake that Dr's make in knowing how to recognize and diagnose lyme.

    Take your Igenex test kit and go to a lab that can draw your blood early on a Monday or Tuesday and can then prepare the blood and fedex it for you the SAME DAY.

    Your blood should arrive at Igenex within 2 want it to get there before the weekend.

    You do not want to be on any immune supressing drugs or antibiotics when the test is done....any customer service.

    You should have results within 2 weeks. Igenex will only release results to the Dr. If your Dr does not recieve the results, you can call Igenex and ask them to fax the results to your Dr.

    Make sure to get a copy of the results from your Dr right away.

    Do not be discouraged if the results say CDC negative.....mine did and also many others.

    Post your individual band results here and on the Medical Questions board at

    page 7 of the above paper contains very important western blot info....this is the most important paper you will read concerning lyme.

    other site you must read:

    the above site also contains very important western blot information.

    A couple other labs to consider are MDL and Stoneybrook.

    You want to make sure you are not getting just an ELISA test (worthless) and that you do not get just a western blot from a regular lab that tests for only 3 IgM bands and 10 IgG bands.'s Medical Questions board has alot of info.
  4. proo

    proo New Member

    Every state in the USA is a place that Lyme disease can be contracted. The deer tics are
    very small. Anyone of us could have been bitten without even knowing it. Only a small percentage of folks ever develop the bullseye rash that indicates a possible acute infection. Left untreated, acute Lyme can turn into chronic Lyme. Along with Lyme, other tic borne illnesses are possible sources of chronic diseases that may be called fibro by physicians who really don't care to dig deep to determine the cause of the problem but would rather throw drugs at the symptoms.

    If you have been diagnosed with fibro, you could have Lyme, Babesia, other tic borne illnesses, Salmonella (without ever having become ill with the typical symptoms associated with this),
    chlamydia pneumoniae, mycoplasma pneumoniae, just to name a few conditions.

    I don't know about the moderator bit, but the information provided was spot on. I know that from one of the best LLP in the country.

  5. gapsych

    gapsych New Member

    The following is for informational purposes and what people do with the information is their choice.

    I am not downplaying the seriousness of Lyme but it's imprtant as consumers that we know as much information as possible to make informed medical decisions.

    A Lyme diagnosis can be a slippery slope and needs to be diagnosed by an Infectious Disease Physician. He/she will also know about related tic borne illnesses.

    When you have a health condition such as FM/CFS where symptoms wax and wane, it's easy to attribut improvement to factors that may or may not be related.

    Chronic Lyme disease is not a recognized medical diagnosis. There is untreated Lyme which can be very harmful to the nervous system causing all sorts of havoc as well as permanent damage to the body and brain.

    If Lyme symptoms are not taken care of after several bouts of antibiotic then other conditions or treatments need to be looked at. Taking antibiotics for a long period of time can be dangerous.

    The symptoms for Lyme overlap with so many other conditions.

    Here's a site that gives information related to what I have said above.

    "At A Glance

    The most common tick-born illness, Lyme disease, is treated with a short course of antibiotics.

    Treatment guidelines developed by the IDSA guideline were investigated by the Connecticut Attorney General.

    After an extensive voluntary, review process, a special independent panel unanimously concurred that the IDSA's 2006 guidelines are medically and scientifically valid and don't need to be changed.

    The review panel agreed with the guidelines which stated that long term use of antibiotics is unwarranted and potentially dangerous."

    As for me, I would rather go with the science.

    Lyme and related conditions can be very dangerous, however it does not cause all the conditions that are often claimed by LLMD's who do not have the extensive training as doctors who fall under the IDSA.

    From PubMed:

    "Chronic Lyme disease: the controversies and the science."

    "Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease."

    "Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease."

    Take care.


  6. ktp812

    ktp812 New Member

    I had basically a negative WB test (41+++ and a few IND). I was sent to a LLMD in NY and he never once came out and said I had Lyme but treated me anyway. I agree that chances are if you go to one of the top name LLMD you will be treated.
    I also went to a doctor who is a very well known CFS doctor and he diagnosed me with CFS. He tested me again for Lyme and I had a positive Elisa but he still said I have CFS. In fact he actually made up symptoms in my office notes to make me fit the CDC criteria for CFS..they were symptoms I had never even mentioned.

    It seems as though the people that come out with positive Lyme tests say the testing is accurate but the people who come up with a bunch of IND say the testing is not .I had done alot of reading on Lyme and it really seems to me that most people do not come up with CDC or any other Lyme positive tests.

    I am in the same problem..negative Lyme test ..treated 30 months but still have symptoms. If testing for Lyme was so inaccurate then I don't know why it is even ordered by doctors. I have been going through this Lyme/CFS back and forth for 7 years and wonder why testing has not become more accurate. I have been tested a total of 4 times and each time I had different IND's show up. By the final test I only had one IND show up. I had tested done before, during, and after treatment. When I was first sick (2004) I had the Elisa done=negative. Just had Elisa done in March 2011=positive.
    I also read that only about 50-60 percent get a bullseye who knows.

    I so wanted a definated diagnosis when I had the Lyme test done but with a bunch of IND several times I gave up...I could really have just about anything or permanent damage from whatever infected me 7 years ago.

  7. Mikie

    Mikie Moderator

    Treat us empirically. It is a time-honored treatment method. Lyme and mycoplasma infections are caused by bacteria and will likely eventually respond to ABX. It can take years and, when one starts to respond, the ABX are pulsed. If one is started on an ABX and has a Herxheimer Effect, it is evidence that the ABX are working. I believe it is far better to treat with ABX than to rely solely on the lab tests which are so prone to false negs. Of course, if one can get the lab tests, so much the better but the docs shouldn't rely totally on them.

    My CFIDS/ME was triggered by a mycoplasma infection. Fortunately for me, a blood test revealed the bacterium because the blood was drawn while the infection was still active and haadn't gone stealth and chronic in my system. Unfortunately for me, at that time, it wasn't known that it takes at least six months on the ABX before the bacteria is driven into latency. I only had two week-long courses of ABX. It wasn't until 11 years later that I learned of the proper treatment. I was on Doxycycline for 2 1/2 years, pulsing after taking the ABX for six months.

    I know Lyme is even more difficult to drive into latency but I would think one might find a doc willing to treat just to see if it works. I know no one wants to take ABX willy nilly but it's better than letting an infection ravage the body untreated. Lyme and mycoplasmas both have the ability to change form and deposit cysts deep in the body's tissue. Those latent cysts can reactivate if one gets sick or run down with something else.

    My doc was willing to treat without the PCR DNA test for mycoplasmas and it worked. Within three days of the ABX, I Herxed like crazy. The Herxing continued until the infection was driven into a latent state. As more and more of the pathogen died off, the Herxing became less harsh.

    I am not a doctor and this is only my own opinion, based on my experience and the posts we have had in the past. Still, I think it is worth working with a doc willing to treat empirically if testing is not an option.

    I likely have Sjogren's Syndrome but my ANA is neg. That's not unusual. It can take more than six years to diagnose many of the illnesses we suffer from. My tentative dignosis is based on my symptoms and the new dry eye test which shows that my oil glands are not working and causing dry eye of the type prevalent in SS. My dry mouth is causing the same problems seen in SS. I'm fortunate that my docs don't rely solely on tests. BTW, my PCR was sky high so there is definitely inflammation in my body.

    Good luck to everyone who is dealing with trying to get diagnosed. I know how hard it can be.

    Love, Mikiie
  8. proo

    proo New Member


    I am so happy to read of your success with a very long and difficult treatment plan. Yes, these little critters and their friends can migrate to every fascia, tendon, ligament, bursa, etc. in our bodies. Once they set up housekeeping, they don't want to be kicked to the curb.

    For those of you above who say there is no such thing as chronic Lyme, I refer you to Dr. Joseph Barrascano. I've heard this and other LLPs speak. Chronic Lyme is a nearly world wide disease that has existed under a different name for centuries.

    Yes, there are on-going turf wars with ID MDs and LLP. I'll go with the LLPs.

    Stay well,

  9. Mikie

    Mikie Moderator

    Infections can become chronic in our bodies. In the case of Lyme and mycoplasmas, they can go latent, ready to spring back to life. In this case, the illness is controlled but I don't think one can ever completely get rid of either of these infections.

    Another way is that the immune system just stops recognizing the pathogens as foreign matter to be destroyed. The pathogens themselves have some very sophisticated ways to fool the immune system. In this case, the infection is not only chronic, it has become stealth.

    One cannot really get rid of viruses in the Herpes Family. They too will go latent in the body and can reactivate, sometimes in a different form.

    I do not believe we can achieve healing until we address the infections. We become homes to the pathogens and they manipulate our bodies to provide an environment in which to thrive. One example is the type of hypercoagulation in which there is an overgrowth of fibrin in the blood. The fibrin traps platelets and the pathogens hide from the immune system in these clumps. Once meds get the pathogens under control, it is often necessary to take heparin, Lovenox or Nattokinase to get rid of the fibrin.

    Love, Mikie
  10. Nanie46

    Nanie46 Moderator

    Here is a link to Dr Burrascano's "Advanced Topics in Lyme Disease"....on page 7 under the topic of Erythema Migrans, he says that the EM rash is diagnostic of Lyme disease, but it is present in less than half.