morning joe

[sammy]

I watch morning joe every morning. This morning interesting conversation on lyme disease. How many in the northeast now have this. Children are be coming infected big time and the disease is changing like its muteing. and they said many things about doctors trying too blame it on imagation not wanting too treat it. but at times I thought they were talking about m. wish I would have recorded it. sammy

[scabdraggr]

They think it's Lyme but it's actually M.M is now here and front and center.I wonder how the stock market will adjust when the reality's of M are announced.The truth can only stay hidden for a while before it gets puked out.

[skylark99]

Thank you for that, Sammy.

It is becoming a very big problem, and more doctors are now seeing more of it.

Legislation has changed recently in New Hampshire to allow doctors (some of whom are Lyme literate) to treat it without being prosecuted.
Yes, doctors trying to help have been brought before state medical board for
prescribing long courses of antibiotics and using other treatments.

In the UK this summer, an alert was issued for the south that ticks were on the rise.
Ticks that carry diseases have been in the media here, as well.

Thank you for doing a post about the media attention that Lyme is getting.
It's about time the media reported what is going on.

[sammy]

Thanks Skylark for your comments. One more thing that was said was funding fo lyme is non existant. if they can get no help for that where does that leave m. sammy

[scabdraggr]

Sky do you have any idea how many of those claiming to have lyme have been shown to have the proper lab results that show the bacteria for Lyme?At this point I'm biased to believing that most of the suffering is from M.Two horrible diseases at once is 2 too many.I hope that's not the case!

[skylark99]

Well, scabdraggr, no, I don't know how many people have had appropriate testing.
But that is a good question.

I have read that part of the problem is that the current tests are not very good. I have also read that they are not sensitive enough; sometimes a patient needs to be tested several times to get an accurate result.

I understand (correct me if I am wrong) that there are two tests used to detect the antibodies for the Lyme spirochette -- Western Blot and the ELISA.

I have also read that many doctors do not know what the symptoms of acute or chronic Lyme are, or they do not believe that people are likely to contract it so they do not test for it.

I do know that only some patients with Lyme will have the classic Lyme bull's eye rash, and some doctors insist that if it is not there, then the patient does not have Lyme.

If the tests are not very good or sensitive enough, or doctors do not believe Lyme is widespread and do not test for it, or if doctors do not educate temselves to recognize it, then it would seem that there really is no way (at the moment) to accurately estimate how may people have Lyme or if one test is better than another.

I agree, Sammy, that research is desperately needed and also that better testing needs to be developed.

I am also concerned that other tick-borne illnesses are also overlooked. It seems that a lot of people have babesia, Rocky Mountain Spotted Fever and bartonella in addition to Borrelia (Lyme), all of which can be transmitted by ticks.

I would describe all these illnesses as 'neglected diseases'. And Morgellons should join the list, IMO.

[tcmgpt13]

There is a new test out recently which is available for use in all states except three. There's some pretty good information on the CA lyme site so I will post their link which discusses this test (ironically CA is one of the three states where this test cannot be used--so far anyway). The lab's site is linked from this website and there are also other links with addtional comments about this test as well. This latest lyme test will be discussed at the fall ILADS lyme convention up in Canada so perhaps some new additional information about it will become available then. I believe lyme will someday be shown to be the infection we could all have. Certainly testing by the various early researchers (Harvery, Stricker, Savely) indicates that as a possibility. How lyme may be connected to all the rest of our symptoms, including visible parasites, goo and fibers, is an open question but first the theory of the possible commonality of lyme (most likely chronic lyme) will have to be proven in M patients (that is if lyme is a commonality). I agree further research in this area is important. BTW I do have diagnosed lyme, but it was diagnosed as latent lyme:

'Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for Lyme disease. It is commercially available in all states except California, New York and Florida, which have individual state licensing requirements that must be met before the test can be offered. Direct detection of bacteria through culture is considered the “gold standard” for diagnosis, but this method has not been commercially available for Lyme disease using previous culture methods. The new test is based on research conducted by Dr. Eva Sapi and colleagues, which CALDA helped fund. Results of the research published earlier this year demonstrated the improved culture method for Borrelia burgdorferi, the agent of Lyme disease, and the technique has recently been corroborated using human blood samples. Larger confirmatory studies of the test are now being pursued. Dr. Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with ALSI to help make the test commercially available. A sensitive high-quality culture test would not only permit patients to be accurately diagnosed, but would lay to rest much of the controversy surrounding Lyme disease.

One of the primary causes of the Lyme controversy is the lack of a “gold standard” diagnostic test to determine who has the disease, who has persisting disease, and who has cleared the infection. Currently available Lyme tests rely on indirect methods of detecting the disease using antibodies produced by the patient. The sensitivity of most of these commercially available antibody tests has been so low that they may miss one out of every two people with the disease.'

wwwlymedisease.org/news/lymepolicywonk/811.html

[sammy]

I recently had a lyme test but of course it was neg. my doctor does not have much faith in lyme tests. however if I want other test. I would have pay 6or7 hundred for it, sometimes I think I might as well go too ginger savely and get this over and dont with have been thinking about it too long havent talked too zen lately too see how she is doing with ginger. sammy

[jeanlong]

My osteopath doctor is convinced I was never diagnosed properly. He is helping me tremendously with an injury that never healed 100%, and it should have totally healed by now with TCM (acupuncture, herbal remedy, tuina, cupping). the TCM care helped the injury but the pain still returns. It is the first time I have had any osteopath manipulation. One thing that helps is the 40 + minute treatment is adequate time to thoroughly adjust the tendons/muscles.

When I think about it, I now believe an infection could hinder the healing process. So , we're waiting for the new pathogen lab tests he ordered. the test report/results are going to take over a week. It was interesting that there was a lot of ambiguity for the borrelia when I had the blood draw done. There were so many different tests to chose from the lab people said they would have to get clarification on which test the doctor wants and I had to wait while they tried to figure out which test the doctor wants. They let me glance at their test code book and literally it has more than a dozen tests for borrelia. sounds too complicated. Borrelia is not the only pathogen test he ordered.

I have ordered labs for people before, so this concerns me. I had no idea there are several tests for a single pathogen. I'm used to simple stuff, like a hematocrit - one test, with a specific number result . . . I will have to read/research to understand which of the lab tests that are available would be the most appropriate. I'm no lab test expert. Perhaps most primary care providers might NOT know how to select one out of a dozen tests either, for some of these pathogens.

[MeaganM]

I'm used to simple stuff, like a hematocrit - one test, with a specific number result . . . I will have to read/research to understand which of the lab tests that are available would be the most appropriate. I'm no lab test expert. Perhaps most primary care providers might NOT know how to select one out of a dozen tests either, for some of these pathogens.

Jean, this is so true. Before my last visit to my doctor, I researched lab test conducted by Lab Corp (who takes my insurance). All I had to do was type in a key work like "immune" or "bartonella" and the results showed many different tests. It gives a description and some tests are more specific than others. It was the only way I was able to get my Immunoglobulin test done. Otherwise, my doctors have just ordered the standard tests in the past. I highly suggest everyone look up labs before going to the doctor but be prepared that the doctor might not know what it is and refuse to do it. In this case, I told her that it was suggested by my case worker and she ended up copying the tests and the codes that I provided her and put them on a script.