tag:blogger.com,1999:blog-5694894153899281485.post5376286499398846784..comments2024-03-09T08:14:49.856-08:00Comments on LymeMD: Lyme and ScienceLyme report: Montgomery County, MDhttp://www.blogger.com/profile/11035327980787631502noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-5694894153899281485.post-31267507305770955042008-09-06T20:56:00.000-07:002008-09-06T20:56:00.000-07:00We have only one universe and all truth and all do...We have only one universe and all truth and all doctors exist within that. The truth is always in the middle. Many IDSA doctors are making too much out of too little science (I can read the studies and interpret them as a doc). Some of the ILADS docs seem to be out on a limb with no science. Some seem to be quite middle of the road and clinically appropriate. As a doc of 17 years in an unrelated field with no vested interest, the patient tells you what you need to know in therapy- not a test or approach. If your six weeks plus two months has taken away all of your symptoms and they do not return, you have your answer. If they come right back, you have your answer. Therapy is either good enough or not reguardless of the current debate on the subject. Just a little clinical common sense. You have a lot of knowledge for a "patient". That is never a bad thing. There will be good and bad docs out there reguardless of what little letters go along with their name or field. If you are fixed, you have a good doc. If you are not, try again. "Sensible" is believing in how you are feeling vs how someone is telling you should be feeling based on what they have done. After understanding the point of view from a chronic Lyme patient I am very close too, it is very hard if you have not been right for a long time to even know what is right for you or not. You can compensate for and accept so much, you don't even know anymore. Even us "minor" patients like me, get used to things and don't worry about them. I hope everything goes well for you. Getting thru this system has been hard for me and I'm a doc who treats this disease in other animals besides humans. I can't imagine what it would be like to not to be able to read the studies and understand the terms and concepts used within easily. You seem to have done an excellent job. I just hope you are well. In the end, that is all that really matters. Medicine has so many ups and downs- every ten or twenty years it seems to change everything it knows. In the end, if you fix the problem, it doesn't matter what it was called or how it was diagnosed. If you don't fix it, there is a problem no matter how wonderful your tests are or how much you "know". Thats what 17 years in the "trenches" we docs call it has taught me. And I went to how many years of college to figure that one out in the end? I wish you the best of luck and I hope you have kicked this awful stuff. I am very early in treatment but this is not fun. I will attempt to provide more pain and ache relief to my patients from now on.dogdochttps://www.blogger.com/profile/16096011385493826813noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-58331152524360625352008-08-12T10:25:00.000-07:002008-08-12T10:25:00.000-07:00I hear you. I DID collect a lot of data, perhaps ...I hear you. I DID collect a lot of data, perhaps too much. BUT, in the end it lead me to get treated by an ID doc who agreed there was good reason to suspect CNS lyme based on my symptoms AND intermittent testing support.<BR/><BR/>My first ID doc told me to forget about the Lyme after two weeks doxy and a follow up negative WB. When I returned 6 months later he told me if I had picked up Lyme he might have to put me on a place to Germany to get tested there. In the end I worked around it, read a lot, and educated my second ID doc who gave me the PICC about the C6 test.<BR/><BR/>I have an LLMD, saw him for 3rd time this morning. I saw him first when I was one the PICC line--I suspected he was an LLMD but was not sure. He came to Lyme from the CFS side of things.<BR/><BR/>I think you may be putting too much of your doctor side into your responses to me here. I found this to be an interesting blog, and something I think is sorely lacking in all the recycled lyme babble out there. I am not using this as a substitute for care, don't worry. If I raise a topic about testing, for example, I am just talking about testing. Please don't read into it that their is a neglect of symptoms. Lyme symptoms are a tricky matter, and since this is not a consultation, I don't present my whole picture. <BR/><BR/>When I post, I hope it will benefit others. For example I JUST WISH others could find more support in using the C6 test, because in my case it was so useful, and would have saved the hassle of the international factor--because it seems to work for all Borrelia.<BR/><BR/>Some patients want a doctor's firm and confident orders only. I do tend then to think things over a lot, but these years of symptoms which could be due to Lyme have worked their way into the fabric of my life. Because of all I have encountered, the nuances of it all are very interesting to me.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-8127917870305183982008-08-12T10:19:00.000-07:002008-08-12T10:19:00.000-07:00This comment has been removed by the author.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-75934050258022346272008-08-12T06:02:00.000-07:002008-08-12T06:02:00.000-07:00The 3 most specific bands are 23 Osp C: 31 Osp B ...The 3 most specific bands are 23 Osp C: 31 Osp B and Osp C. The C6 is another, larger Osp ViSE. All of the bands are antibodies found on the surface of Bb and related Borrelia species.You have collected too much data in my opinion. The question is: What are your symptoms? Are they compatible with latent Lyme? What does the evidence reveal about the nature of the organism: its abililty to cause illness and its ability to evade the immune system and antibiotics? What is the clinical experience of doctors who treat the disease? There are reported to be 12 ID docs in the US who are "lyme literate." These include Dr. Donata in Boston who is well published regarding chronic Lyme. All of your symptoms sound like typical late stage Lyme. Most LLMDS and their patients will tell you to avoid ID docs like the plaque. The are steeped in IDSA dogma. ID docs spend most of their time seeing critically ill patients in the hospital setting. They are not versed in treating ambulatory patients with chronic symptoms. If a doctor treats on the basis of largely discredited guidelines, as if were religion one should be skeptical of ad hoc recommendations. I would seek a physician who is open minded and versed in the science, who has treated hundreds of patients like you and gotten them better. See "Under Our Skin."Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-79704545974858096692008-08-11T12:11:00.000-07:002008-08-11T12:11:00.000-07:00Oh, while you're at it, any thoughts on the OspD, ...Oh, while you're at it, any thoughts on the OspD, band 28? It is not considered a critical band by CDC or Igenex, but it quite specific to Lyme. When I asked Nick Harris he said good question, he was not sure, but guessed it just never made the cut statistically.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-80305961444132518192008-08-11T12:06:00.000-07:002008-08-11T12:06:00.000-07:00I have had one igenex test. I got it because I wa...I have had one igenex test. I got it because I wanted to know everything I was showing reactivity too, even if it is faint. My ID doc signed the order for the test, after I explained to him I just wanted to have a more complete picture. I got it two weeks before the IgM positive quest test, a few days after I started my PICC line. It turned out to be a good indicator of the coming CDC positive test i was to have two weeks later. It was IgM positive by their creiteria, not CDC, but it showed positives on 28, 31, 41. I was also positive on their IFA screening and 1.3 on the C6 test.<BR/><BR/>Anyhow, I saw three ID docs and only one agreed to treat me, as he said he would be inclined to treat based on my symptoms of years of idiopathic hypersomnia, headaches, tinnitus and lightheadedness, peripheral neuropathy and periodic issues with my joints. He used an 8 month old IgM positive WB test and got the insurance on board.<BR/><BR/>I put a lot of time and work into learning about Lyme. I even sent a blood sample to Germany for testing, as I grew up there, and wanted to rule out B. garinii or afzelii infections. Sending blood to Germany was a challenge... It came back negative, but in the meantime I had also spoken to Nick Harris who said his test would pick up those genospecies-- another reason I wanted it.<BR/><BR/>In any case, in my one experience the Igenex test was good, correlated in large part with the CDC tests on the bands they do report.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-78878129749759267352008-08-11T07:06:00.000-07:002008-08-11T07:06:00.000-07:00I was thinking about my comments to you, I think t...I was thinking about my comments to you, I think they were overly harsh. The decision to treat and for how long, in my opinion, should never be based on lab results. The 3 IgM band WB is a terrible test. I recommend a 14 band WB from IgeneX. If you read up on this test you will discover that the 3 band test is part of a surveillance protocol and has little diagnostic value. The most important bands, 31 and 34 are ommitted. For instance, the 31 band shows reactivity to Osp A, which is down regulated in early disease and only shows up later in the illness. If it is positive it indicates that the infection has been present for a long time (years usually). If a doc suggests that treatment is based on a lab test I don't think he knows the disease well. CDC positivity is not relevant to treatment decisions. The fact that more antibodies showed up after treatment demonstrates that germs which were hidden are now being killed, causing an immune response. But this whole discussion about treating based on lab results is in humble opinion, absurd. Look at results of the recent published clinical trials from Columbia University. Patients with neuroborreliosis improved after 12 weeks of Rocephin but relapsed when it was stopped. If you are not very ill you may not need IV therapy. If you are very ill longer courses of Rocephin followed by intensive oral antibiotics is the best way to go.Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-44673960776917807892008-08-08T14:19:00.000-07:002008-08-08T14:19:00.000-07:00I wrote 'sensible' not "sensible" meaning to imply...I wrote 'sensible' not "sensible" meaning to imply the ridicule with which some ID doctors speak about the LLMD world. What I was saying is that as a patient one can be torn between wanting to try the standard course and observing the outcome, or going all out into the parallel LLMD world.<BR/><BR/>Anyhow, I had 6 weeks on a PICC, and two months oral. I would say I had an open-minded ID who basically follows IDSA, but, believes that if the patients symptoms are improving, that an extension may be warranted. <BR/><BR/>I have seen an LLMD and am open to a longer course of treatment. That said, I am unlikely to get another PICC unless I start testing positive again. I went on the PICC with only a positive C6 ELISA and then three weeks into treatment I was IGM positive on a CDC test on all three bands so the ID allowed me a two weeks extension of the ceftriaxone.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-27720119659195260502008-08-05T19:31:00.000-07:002008-08-05T19:31:00.000-07:00Addendum: It is important that as a patient that y...Addendum: It is important that as a patient that you allow a physicians in whom you have confidence "run the show." If one physician is unable to help you perhaps you should seek care from another doc. You can't run your own care. You can't decide what antibiotic, by what route, for how long and so on. The doctor patient relationship should be collaborative, but the ship must have a captain. Even physicians cannot treat themselves. Remember: He who has himself as his doctor has a fool for a patient. I am concerned when a patient makes such comments about splitting the difference between an IDSA and an ILADS approach.There is nothing "sensible" about this. I would have to question a doctor who would cooperate with this half baked (in my opinion) approach. Either the doc follows IDSA or ILADS. If he compromises his principals on a whim where does he stand?Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-31914782755568467412008-08-05T16:57:00.000-07:002008-08-05T16:57:00.000-07:00I am not sure about hormone levels. Many female pa...I am not sure about hormone levels. Many female patients report restarting menstrual periods when Lyme is treated. There is much discussion about adrenal fatigue. Chronic illness can impact the hypothalamic, pituitary axis which controls many hormones. Most of these imbalances are subtle and should correct when the underlying disease is treated.Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-65083506151923871222008-08-05T16:55:00.000-07:002008-08-05T16:55:00.000-07:00If you have Lyme and need IV antibiotics, 6 weeks ...If you have Lyme and need IV antibiotics, 6 weeks will not work. See the recent studies published by Columbia University. Half a loaf is not always better than no loaf. You can't compromise between two concepts one of which is true and the other false. There is no evidence that the IDSA approach has any scientific validity. Look at the evidence. Patients regress after 12 weeks of IV therapy when it is stopped. They regain the benefits only when it is started again. The evidence that the germ resists long term antimicrobial therapy is solid. If you don't respond to treatment as expected then the diagnosis should be reconsidered. If you are not sure get a 2nd, 3rd or 4th opinion.Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-56706459070737038842008-08-05T12:32:00.000-07:002008-08-05T12:32:00.000-07:00Oh, also, maybe you could do a post on your experi...Oh, also, maybe you could do a post on your experience with Lyme and hormone levels. I am thinking in terms of testosterone (and for females estrogen) levels and proportionately low FSH/LH levels. I know Dr. Burrascano has mentioned a connection and claims that Lyme treatment raises levels in some patients.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-27815484619605585352008-08-05T08:43:00.000-07:002008-08-05T08:43:00.000-07:00The whole IDSA vs. ILADS thing has been very hard ...The whole IDSA vs. ILADS thing has been very hard for me as a patient. I know there are more false negatives on Lyme test that false positives, and that the Lyme testing is problematic. At the same time some of the symptom complexes used by some ILADS docs to "clinically diagnose lyme" are too broad in my opinion. Some docs look for the symptoms to fit the pattern, forgetting that they are medical doctors in general, and that they might also be still helping the patient if they find WHAT they do have.<BR/><BR/>Anyhow, as for the IDSA/ILADS divide, I want to be 'sensible' and accept that 6 weeks of PICC line treatment should have eliminated my lyme, but also will not dismiss the experience of patients and docs who have had experience and success with extended antimicrobial treatment.<BR/><BR/>It also doesn't help me that a number of Lyme docs seem to accept almost any alternative medical treatment-- as if operating outside the mainstream obligates one to be open to almost anything.Froschhttps://www.blogger.com/profile/08523770824937191220noreply@blogger.com