Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Interesting, Barb. My white counts were consistently in the 12-14k range the first year I was disabled by symptoms. Neutrophils and lymphs both spiked off and on, never depressed. The only 'in range' white counts I've had in the last three years have been during antibiotic treatment. I don't have a good baseline for comparison, though. I avoided going to the doctor, for the most part, before I became disabled. Since the illness knocked me down at the end of 2002, my temperature has been depressed, no obvious fever. The Broda- basal temp check in early 2003 was at 96-97. I don't know of any evidence that those who are serology-confirmed for BOTH Babs and Bb tend to run fevers, but that may be because the fevers often occur early in the infection, or are masked by depressed body temps. All I know for sure is that the Babs studies (precious few of those) which list fever as a dominant symptom don't seem to be specific for patients also infected with Lyme, and Lyme patients who are dx'd with Babesia don't seem to run fevers in any consistent way (defined in absolute terms as body temps higher than 98.6). I know that I had multiple bouts of what was diagnosed as " walking pneumonia " with chills and low fever, about 14 months and then again 6 months before getting hit by disabling symptoms. I've heard similar stories from enough Lymies to think you might be right about fever but that in many it presents 'early,' before there is any obvious reason to suspect Lyme, and is assumed by the patient to be some 'normal' bug. I remember being very aware with the 'walking pneumonia' in 1999 of a fear response that didn't normally accompany being sick for me. Until my health collapsed, I had always greeted sickness as an annoyance, a disruption in the proper order of things. I thought I was a tank. But in 1999 when I got sick in the UK I was so scared I begged to be sent home early (they said no). To my knowledge there is no family history of Sarcoidosis in my case, as there is in yours, and I have a spleen, while you don't. How those things may distinguish our illnesses is an interesting question. Did my immune system take enough of a dive by 2002 for the infection to manifest as predominantly extracellular? Certainly by the reasoning of most Lyme research (severity = spirochete load) my symptoms are suggestive of a heavy load of motile spirochetes, more than a predominantly intracellular infection. But my symptoms also resemble your own reports, Barb, minus the toxic response to sun and D, the nausea you report early on, and your fevers. And I had that funky rash on lower legs, which was no EM, and has remained, waxing with symptoms but never really waning. The rash was recently diagnosed by a dermatologist as some unspecified inflammatory response that causes the RBCs to rupture and spill their iron content under the skin, creating the spots of darker 'pigment'. Two LLMDs have now told me testosterone deficiency is pretty much the rule, not the exception, in their male patients. Does this relate to the infected RBC angle? Low testosterone can, among other things, depress RBC counts. When testosterone is low, a study I've cited often reports, resistance to blood parasites tanks (is that true of Babs, and of Lyme, as it is of the worst strain of malaria? I tend to want to assume that it is.) There seems to be a broad assumption among LLMDs that the hormone dysruptions occur when the bugs alter the function of the more 'exposed' portions of the brain, specifically the hypothalamus. I do think the bugs may have evolved naturally to favor this hypothalamic dysfunction, if it serves their survival interest. Which brings me back to my question. Does a diminished supply of new RBCs inhibit the IS in dealing with infected RBCs? If it does, that would give us one survival advantage for the bugs in lowering testosterone levels, and commend treatments that raise RBC production. I still wonder if the clinical hypothyroidism we see, often with low but 'in range' serum levels, isn't the same kind of thing. Depress the RBC count, lower the body temp, you've knocked out to of the more obvious tools the body has to fight off RBC infections. Sorry this is long and rambly, but this RBC-as-host-cell business has me wanting to rethink things. > > > > > Hey, who has watched this vid by Drs. & Kroun - link > > found > > > > at > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > I think this may be blood left out on the slide for many > > hours. If > > > > > so it would be different from what youd see on a straight > > smear, > > > > but > > > > > given the ~12h ideal generation time of Bb, it would not be > > too > > > > much > > > > > more biomass than exists in circulating blood. What do you > > guys > > > > > think about the idea that the red cell may be the prime > > sanctuary > > > > of > > > > > Bb - an idea I saw in one place once. That source said the > red > > cell > > > > > was poorly penetrated by abx. As for the immunological > > policing of > > > > > the red cell, it may be poorly understood - if not I dont > > quite > > > > > understand it. Unlike those of mice, ours express no MHC-I. > > > > > > > > > > Someone should use fluorescent Ab to make video like this and > > show > > > > > it to the world. > > > > > > > > > > ====================================== > > > > > Andy , Bolton UK – a collection of several videoclips > of > > > > > moving filamentous and granular structures filmed in blood of > > > > > chronically ill UK patients diagnosed with CFS and/or chronic > > Lyme > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 : I'll answer with my opinion - who knows whether it's rights or not though: > > > > > > Hey, who has watched this vid by Drs. & Kroun - > link > > > found > > > > > at > > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > > > I think this may be blood left out on the slide for many > > > hours. If > > > > > > so it would be different from what youd see on a straight > > > smear, > > > > > but > > > > > > given the ~12h ideal generation time of Bb, it would not > be > > > too > > > > > much > > > > > > more biomass than exists in circulating blood. What do you > > > guys > > > > > > think about the idea that the red cell may be the prime > > > sanctuary > > > > > of > > > > > > Bb - an idea I saw in one place once. That source said the > > red > > > cell > > > > > > was poorly penetrated by abx. As for the immunological > > > policing of > > > > > > the red cell, it may be poorly understood - if not I dont > > > quite > > > > > > understand it. Unlike those of mice, ours express no MHC- I. > > > > > > > > > > > > Someone should use fluorescent Ab to make video like this > and > > > show > > > > > > it to the world. > > > > > > > > > > > > ====================================== > > > > > > Andy , Bolton UK – a collection of several > videoclips > > of > > > > > > moving filamentous and granular structures filmed in blood > of > > > > > > chronically ill UK patients diagnosed with CFS and/or > chronic > > > Lyme > > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 and Barb I usually have high WBCs, especially the neutrophils, was misDx with SLE as well but the steroids were a disaster other than a decrease in joint stiffness. However early on my lymphocytes took a nose dive, down to the levels seen in AIDS, and an abnormality in my macrophages was observed but not understood, atypical lymphocytes were regularly picked up as well. I have atypical red blood cells too, one doctor I saw put this down to gluten intolerance with iron and folic acid aenemias, the RBCs improved over time but still get flagged on all the blood tests I have had since 1983. Had real fevers very early one, then many low grade fevers interspersed with periods of a low body temp, it was always obvious to me infections were involved. Just thinking out loud here - could intracellular pathogen inside the red blood cells explain Les Simpson's research findings in CFS? Or be why many of us keep testing with low red blood cell levels of various essential vits/mins and glutathione No one is my family has, or has had sarcoidosis. I suffer from heat intolerance and learned I have to work at keeping cool in hot weather especially my head, however sunlight itself seems to be good for me. A sarc patient I know was complaining about how the recent rise in light levels was adversely affecting her, I on the other hand was feeling the benefits of it, no herxing or feeling worse days or weeks later. She felt better during the winter months; I on the other hand, having had to avoid the sun for months last summer due to my reactions to heat, was experiencing some classic vit D deficiency symptoms. Cheers, Tansy > > > > > > Hey, who has watched this vid by Drs. & Kroun - > link > > > found > > > > > at > > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > > > I think this may be blood left out on the slide for many > > > hours. If > > > > > > so it would be different from what youd see on a straight > > > smear, > > > > > but > > > > > > given the ~12h ideal generation time of Bb, it would not > be > > > too > > > > > much > > > > > > more biomass than exists in circulating blood. What do you > > > guys > > > > > > think about the idea that the red cell may be the prime > > > sanctuary > > > > > of > > > > > > Bb - an idea I saw in one place once. That source said the > > red > > > cell > > > > > > was poorly penetrated by abx. As for the immunological > > > policing of > > > > > > the red cell, it may be poorly understood - if not I dont > > > quite > > > > > > understand it. Unlike those of mice, ours express no MHC- I. > > > > > > > > > > > > Someone should use fluorescent Ab to make video like this > and > > > show > > > > > > it to the world. > > > > > > > > > > > > ====================================== > > > > > > Andy , Bolton UK – a collection of several > videoclips > > of > > > > > > moving filamentous and granular structures filmed in blood > of > > > > > > chronically ill UK patients diagnosed with CFS and/or > chronic > > > Lyme > > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Tansy: What country are you in. Our blood profiles sound similar (and same dx-SLE). Big diff is that I never took oral steroids or has the ocular steroid injections to the back of the eye my Ohpth wanted to do before I found out I had Lyme. Once your tagged with an autoimmune disorder - most Docs will NOT see past that - or insist you have multiple diseases. IMO - your blood profiles are screaming infection. Barb > > > > > > > Hey, who has watched this vid by Drs. & Kroun - > > link > > > > found > > > > > > at > > > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > > > > > I think this may be blood left out on the slide for many > > > > hours. If > > > > > > > so it would be different from what youd see on a straight > > > > smear, > > > > > > but > > > > > > > given the ~12h ideal generation time of Bb, it would not > > be > > > > too > > > > > > much > > > > > > > more biomass than exists in circulating blood. What do > you > > > > guys > > > > > > > think about the idea that the red cell may be the prime > > > > sanctuary > > > > > > of > > > > > > > Bb - an idea I saw in one place once. That source said > the > > > red > > > > cell > > > > > > > was poorly penetrated by abx. As for the immunological > > > > policing of > > > > > > > the red cell, it may be poorly understood - if not I dont > > > > quite > > > > > > > understand it. Unlike those of mice, ours express no MHC- > I. > > > > > > > > > > > > > > Someone should use fluorescent Ab to make video like this > > and > > > > show > > > > > > > it to the world. > > > > > > > > > > > > > > ====================================== > > > > > > > Andy , Bolton UK – a collection of several > > videoclips > > > of > > > > > > > moving filamentous and granular structures filmed in > blood > > of > > > > > > > chronically ill UK patients diagnosed with CFS and/or > > chronic > > > > Lyme > > > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi Barb In the UK so not much hope of getting anything looked into or tests for other infections, though may go for the Bowen test because I want to check out babesia. Have also had low compliments 3 & 4 when tested for. My symptoms mimic MS too; not seen a neuro for 17 years now, but to be honest I now think that's a good thing. Yep my blood tests scream infections, my symptoms scream infections, my major herxes on very small doses of samento scream infections. When AW's test showed up the borrelia infection I told my GP that steroids were at the top of the list of contraindications and what had happened when I was given them; she commented that's exactly what would happen if I had an infection. So here I am trying to treat these infections, or get them treated, whilst most other PWME/CFS in the UK are being told they can be rehabilitated or cured by CBT and graded aerobic exercise. I saw a rheumy a year ago, spoke about infections and ISAC then, silly me should have known better. There she treating RA, SLE, and other AI diseases and no one in her department will even consider ABx instead of steroids. Cheers, Tansy > > > > > > > > Hey, who has watched this vid by Drs. & Kroun - > > > link > > > > > found > > > > > > > at > > > > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > > > > > > > I think this may be blood left out on the slide for > many > > > > > hours. If > > > > > > > > so it would be different from what youd see on a > straight > > > > > smear, > > > > > > > but > > > > > > > > given the ~12h ideal generation time of Bb, it would > not > > > be > > > > > too > > > > > > > much > > > > > > > > more biomass than exists in circulating blood. What do > > you > > > > > guys > > > > > > > > think about the idea that the red cell may be the prime > > > > > sanctuary > > > > > > > of > > > > > > > > Bb - an idea I saw in one place once. That source said > > the > > > > red > > > > > cell > > > > > > > > was poorly penetrated by abx. As for the immunological > > > > > policing of > > > > > > > > the red cell, it may be poorly understood - if not I > dont > > > > > quite > > > > > > > > understand it. Unlike those of mice, ours express no > MHC- > > I. > > > > > > > > > > > > > > > > Someone should use fluorescent Ab to make video like > this > > > and > > > > > show > > > > > > > > it to the world. > > > > > > > > > > > > > > > > ====================================== > > > > > > > > Andy , Bolton UK – a collection of several > > > videoclips > > > > of > > > > > > > > moving filamentous and granular structures filmed in > > blood > > > of > > > > > > > > chronically ill UK patients diagnosed with CFS and/or > > > chronic > > > > > Lyme > > > > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi This is a short quote from Andy 's's talk at last year's Lyme Disease Action conference in June last year in York (UK). " One of the big questions is 'Is intra erythrocytic Borrelia a problem?' Or is it only when Borrelia is in white cells that it's a problem? I get a feeling from looking at hundreds of these slides that when you see Borrelia coming out of a white cell, that's the sickest people. You can get asymptomatic carriers where you only see it coming out of a red cell. Bill's (Harvey) thought a lot about this and it maybe that Borrelia enters in the red cell in the bone marrow and it comes along and because our red cells only die every 120 days, they just drip feed Borrelia. I think maybe 5% of red cells are infected so there's a constant drip feed into the system, then they become tissue invaders, and it just keeps going and going and going. " > > > > > > Hey, who has watched this vid by Drs. & Kroun - > link > > > found > > > > > at > > > > > > in the spirochetes section of the homepage of LymeRICK? > > > > > > http://lymerick.ulmarweb.dk/ > > > > > > > > > > > > Im surprised there hasnt been more shock about this. > > > > > > > > > > > > I think this may be blood left out on the slide for many > > > hours. If > > > > > > so it would be different from what youd see on a straight > > > smear, > > > > > but > > > > > > given the ~12h ideal generation time of Bb, it would not > be > > > too > > > > > much > > > > > > more biomass than exists in circulating blood. What do you > > > guys > > > > > > think about the idea that the red cell may be the prime > > > sanctuary > > > > > of > > > > > > Bb - an idea I saw in one place once. That source said the > > red > > > cell > > > > > > was poorly penetrated by abx. As for the immunological > > > policing of > > > > > > the red cell, it may be poorly understood - if not I dont > > > quite > > > > > > understand it. Unlike those of mice, ours express no MHC- I. > > > > > > > > > > > > Someone should use fluorescent Ab to make video like this > and > > > show > > > > > > it to the world. > > > > > > > > > > > > ====================================== > > > > > > Andy , Bolton UK – a collection of several > videoclips > > of > > > > > > moving filamentous and granular structures filmed in blood > of > > > > > > chronically ill UK patients diagnosed with CFS and/or > chronic > > > Lyme > > > > > > disease (52 Mb) – A MUST SEE ! Quote Link to comment Share on other sites More sharing options...
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