Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 In a message dated 3/10/00 6:18:21 PM Pacific Standard Time, conniek@... writes: << She told me of a story of one gentleman she is treating. He has absolutely no postive blood tests for lyme. Not one Band. She sent him to Stoneybrook, for a spinal tap. The Drs. at StoneyBrook, couldn't believe the amt of the Lyme bacteria they collected. So much so, they asked him if he would be willing to submit to another spinal tap, because they felt there was so much, they could collect enough to culture it and grow it....and perhaps use it to help work towards a cure. Can you believe that? Those buggers get in deep ....I truly believe there are people out there with dx of lupus, ms, and many other diseases, that are really Lyme. Anyway just wanted to share that.....I'm really tired and as soon as this abx drips in and I can unhook myself....I'm off to bed. Connie nwnj >> Thanks for sharing this info Connie. It is fascinating. Goes to show how one must not give up in getting a dx and treatment. Hang in their with your abx, and please don't leave us because you're cranky! You are herxing, and having a rough time working, and getting tx, and going it solo. Pat yourself on the shoulders, and take a few from me too! <G> Pj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hi Everyone, Well, its two weeks on Rocephin......Herxing.....and feeling horrible. I was at my Dr., she is hoping people are waiting to release new information, study results, and new tests that may be out there at the March 25th Lyme Conference. I hope she is right. I was talking to her about Spinal Taps....assuming that the only people that would be positive, are those that are unable to walk, bedridden and in wheelchairs. She said, sound like that would be reasonable, but untrue. She has wheelchair Lyme patients, that have spinal tests come back negative. She told me of a story of one gentleman she is treating. He has absolutely no postive blood tests for lyme. Not one Band. She sent him to Stoneybrook, for a spinal tap. The Drs. at StoneyBrook, couldn't believe the amt of the Lyme bacteria they collected. So much so, they asked him if he would be willing to submit to another spinal tap, because they felt there was so much, they could collect enough to culture it and grow it....and perhaps use it to help work towards a cure. Can you believe that? Those buggers get in deep ....I truly believe there are people out there with dx of lupus, ms, and many other diseases, that are really Lyme. Anyway just wanted to share that.....I'm really tired and as soon as this abx drips in and I can unhook myself....I'm off to bed. Connie nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hi Connie, My doctor tells me that those the sickest with LD, rarely test positive....it sure makes sense to me, or at least in my case. I sure do identify with your herxing, me too, afternoons are the worst for some reason, I infuse about 11AM, so maybe that's why. So I am super behind in my mail as usual, spend most afternoons in bed and wake up around Midnight, at least I can get some mail done then, but soon tire, and never ever finish all of them. I hope your doctor is right that the coming Lyme conference will be a good one, with lots of important information. I hope they put in on a website like they did last year for those of us who can't attend. I am surprised about the spinal tap results of that fellow you mentioned, I was under the impression Borrelia is hard to find in the spinal tap fluid, glad it worked for him. If my insurer insists I have one before they will approve further IV, I will go for it, what do I have to lose, Hang in there with the herxing, I think I am on my third week of IV. Losing track. Hugs, Marta >From: ConnieK <conniek@...> > >Hi Everyone, >Well, its two weeks on Rocephin......Herxing.....and feeling horrible. >I was at my Dr., she is hoping people are waiting to release new >information, study results, and new tests that may be out there at the >March 25th Lyme Conference. I hope she is right. > >I was talking to her about Spinal Taps....assuming that the only people >that would be positive, are those that are unable to walk, bedridden and in >wheelchairs. She said, sound like that would be reasonable, but untrue. >She has wheelchair Lyme patients, that have spinal tests come back >negative. > >She told me of a story of one gentleman she is treating. He has absolutely >no postive blood tests for lyme. Not one Band. She sent him to >Stoneybrook, for a spinal tap. The Drs. at StoneyBrook, couldn't believe >the amt of the Lyme bacteria they collected. So much so, they asked him if >he would be willing to submit to another spinal tap, because they felt >there was so much, they could collect enough to culture it and grow >it....and perhaps use it to help work towards a cure. Can you believe >that? Those buggers get in deep ....I truly believe there are people out >there with dx of lupus, ms, and many other diseases, that are really Lyme. > >Anyway just wanted to share that.....I'm really tired and as soon as this >abx drips in and I can unhook myself....I'm off to bed. Connie nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 > My doctor tells me that those the sickest with LD, rarely test >positive....it sure makes sense to me, or at least in my case. Marta, Did your doc happen to comment on why this might be? I'm just curious - been reading up a bit on the liver lately, and wonder if this could be due to Lyme's (or co-infection's) assault on the liver, and the liver's function in antibody production.... Thanks, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 Hi Sue, I'm sorry, if he told me I have long forgot the reasoning, I don't even know if it is true or not, he may have just been trying to make me feel better since all my tests come up Negative. Hugs, Marta >From: Sue <tlizzy@...> > >> My doctor tells me that those the sickest with LD, rarely test >>positive....it sure makes sense to me, or at least in my case. > >Marta, > >Did your doc happen to comment on why this might be? I'm just curious - >been reading up a bit on the liver lately, and wonder if this could be >due to Lyme's (or co-infection's) assault on the liver, and the liver's >function in antibody production.... > >Thanks, >Sue Quote Link to comment Share on other sites More sharing options...
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