tag:blogger.com,1999:blog-5694894153899281485.post7130812106475916553..comments2024-03-29T03:11:44.874-07:00Comments on LymeMD: Another case: A somewhat different description of what transpiredLyme report: Montgomery County, MDhttp://www.blogger.com/profile/11035327980787631502noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-5694894153899281485.post-23712991426396629772016-11-07T17:57:06.337-08:002016-11-07T17:57:06.337-08:00I give UP! I have been fighting this since 2007. I...I give UP! I have been fighting this since 2007. I've been through the IV Rocephin, the Babesia treatment, the oral antibiotics for lyme, babesia, and bartonella. I am better than I was in 2007 but something is still wrong. My Igenex test showed two positive bands for lyme but my doctor says I'm almost out of the woods with lyme and he now believes my main issue is bartonella. I do have terrible lymphadenopathy and sore throat, with headaches and neck tension. I am now on Minocycline, Flagyl, and Clindamycin. This combination of meds makes me so sick I have to go to bed. The sickness comes soon after I take the antibotics. My doctor tells me it sounds more like I'm having a reaction to the meds rather than a herx. If these meds aren't doing me any good I don't want to put myself and my family through this. I'm 44 with a 14 and a 12 year old. It is nice to not have my entire neck feel swollen and achy. It really is bad after ANY exertion whatsoever. I'm tired. I'm ready to call in Post Lyme Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome and be done with it. Anonymoushttps://www.blogger.com/profile/14795516862919069418noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-43567080690670452832009-02-20T13:39:00.000-08:002009-02-20T13:39:00.000-08:00I retest periodically.Of course patients frequentl...I retest periodically.<BR/>Of course patients frequently get re-infected.Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-30528648786674699712009-02-19T19:56:00.000-08:002009-02-19T19:56:00.000-08:00Regarding your last comment, LLMD....does this mea...Regarding your last comment, LLMD....does this mean that you retest and retest for babesia and bartonella, and if a positive doesn't show up at the beginning of treatment, it doesn't ever? Or is it that you don't test?<BR/>It seems I have read lots of posts elsewhere about people "finally" getting a positive test, after treating awhile.cehansenhttps://www.blogger.com/profile/04021052436874463834noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-88093607032771086072009-02-19T12:14:00.000-08:002009-02-19T12:14:00.000-08:00Nothing else has ever seroconverted.Nothing else has ever seroconverted.Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-15287963260464450432009-02-19T10:02:00.000-08:002009-02-19T10:02:00.000-08:00Seibertneurolyme- I agree with you 100% on the sen...Seibertneurolyme- I agree with you 100% on the sensitivity levels of PCR's and smears for Babesia and Bartonella. I do very much also think people should be treated with what make them well- reguardless of whether it has a name or not. However, both Babesias and Bartonellas of all types are commonly carried subclinically across the species (humans and animals)so there presence or absence truly does not indicate clinical disease. Even when they are found, it does not mean that is what is causing the clinical signs. Bartonella and Babesias are a bit different than Lyme PCR wise- they are blood bourne organisms versus Lyme which prefers to live in the tissues. I would suspect highly that if we did brain and joint capsule biopsies and PCR's on them, that we would come up with fairly high rates of Lyme PCR positives. However, not many of us want to lose a peice of brain or joint to see. <BR/> The biggest issue I see with calling something a Babesia or Bartonella organism that we are treating for when we cannot document it clinically is that it prevents us from looking for and finding the real disease organism that is responding to the Malarone, or Mepron, or Rifampin, or whatever. For example, the blood "bacteria/parasite" Dr K is working on. The chances of that being a BLO and not amplifying to any of the known bacterial primers is slim. I am about to make what I am sure will be a very unpopular point. The antibiotic types we use to treat are very broad spectrum- for example, malaria- a very well studied blood parasite- has sensitivity to doxycycline and the floroquinalones as well as the drugs we traditionally use to treat it. Toxoplasmosis, another parasite, has sensitivity to a number of antimalarials and antibiotics including Mepron and Clindamycin. This blood bacteria/parasite- whatever it is- may be the primary disease and not a co-infection. It may be that it cross reacts with the western blot for Lyme esp in IgM (which is documented for other organisms at the "specific" bands) and that we have some other emergent, unknown infectious disease that is being recognized as and called Lyme.dogdochttps://www.blogger.com/profile/16096011385493826813noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-51163500690778127272009-02-19T07:41:00.000-08:002009-02-19T07:41:00.000-08:00LymeMD,I frequently see comments where you retest ...LymeMD,<BR/><BR/>I frequently see comments where you retest patients for Lyme by Western Blot and they seroconvert.<BR/><BR/>Do you retest for Babesia and Bartonella as well? Just curious as to whether any of those patients seroconvert as well.Seibertneurolymehttps://www.blogger.com/profile/00040368712637580997noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-8344186802371951372009-02-19T07:37:00.000-08:002009-02-19T07:37:00.000-08:00dogdoc,You do have a valid point that whatever was...dogdoc,<BR/><BR/>You do have a valid point that whatever was being treated responded to either Malarone or Clindamycin or the combo of drugs.<BR/><BR/>However, a single PCR and one bloodsmear does not definitely rule out Babesia or Bartonella. Dr K would be one of the first to agree that these PCR tests produce high levels of false negative results. <BR/><BR/>Unfortunately few patients have enough money to order 6 or 8 PCR tests or however many are needed to rule out a false negative. There are few if any studies showing the actual false negative rates for Babesia or Bartonella. Those I have seen for Lyme report something like 4 or 6% of patients with Lyme have a positive PCR.Seibertneurolymehttps://www.blogger.com/profile/00040368712637580997noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-54109602576739468902009-02-19T07:11:00.000-08:002009-02-19T07:11:00.000-08:00Patients with Lyme have foot pain. It is called pl...Patients with Lyme have foot pain. It is called plantar fasciitis. It is similar to tendinitis. Many Lyme patients have twitches- a common neurological complaint. Nearly all Lyme patient have neuropsychiatric complaints.<BR/><BR/>I am reporting my clinical results.<BR/>Malarone also has proguanil hydrochloride. These are synergistic drugs. You cannot compare Malarone to Mepron directly. There are no studies that I know of, for the use of Malarone in the treatment of Babesiosis. Where do these "recommendations" come from?Lyme report: Montgomery County, MDhttps://www.blogger.com/profile/11035327980787631502noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-83555407760744340062009-02-19T05:31:00.000-08:002009-02-19T05:31:00.000-08:00A few basic points- one is the dose of Malarone be...A few basic points- one is the dose of Malarone being used for what purpose- the malarial dose for which the drug was designed? The second is- appropriate dose to treating what? If a patient has been thoroughly screened serologically, by broad species PCR, and by a careful blood smear done by a good microbiologist and zero evidence of babesia has been found- face it, we are probably treating something else that responds to the same drug. The mechanisms of action on these drugs, even when fully known, are such that a broad range of organisms can be affected. We use them to treat many diseases. Response to malarone or mepron therapy is not proof of Babesia- it is proof you killed something with sensitivity to that drug.dogdochttps://www.blogger.com/profile/16096011385493826813noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-59037495463045338802009-02-19T03:29:00.000-08:002009-02-19T03:29:00.000-08:00Hi, two tablets of Malarone is way too low. It may...Hi, two tablets of Malarone is way too low. It may create resistance problems with Babesia.<BR/><BR/>Recommended dose is 2x3 malarone tablets per day - the amount of atovaquone is equal to usual recommended dose of 2x750 mg of Mepron.toshohttps://www.blogger.com/profile/03245588170851184644noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-72160084058712430822009-02-18T20:35:00.000-08:002009-02-18T20:35:00.000-08:00mingI see from several recent posts that you do no...mingI see from several recent posts that you do not necessarily believe in BLO. Have you considered that the seronegativity of bartonella may be a result of an inability of the labs to pick up all the different strains that have yet to be identified? Was curious as to your thoughts on that. If a patient presents with neuropsych symptoms, foot/sole and shin pain, twitches, would you attribute this to Lyme in the absence of a positive bartonella test?<BR/>What about the pathogen that Clongen is working to identify....could this be "BLO"?cehansenhttps://www.blogger.com/profile/04021052436874463834noreply@blogger.comtag:blogger.com,1999:blog-5694894153899281485.post-58859119844380808632009-02-18T17:14:00.000-08:002009-02-18T17:14:00.000-08:00Wouldn't Clindamycin also work on Bartonella? Mayb...Wouldn't Clindamycin also work on Bartonella? Maybe it was the clindamycin that made the big difference and not the Malarone?Seibertneurolymehttps://www.blogger.com/profile/00040368712637580997noreply@blogger.com