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Post by Admin/ Traveler on Dec 17, 2017 21:21:13 GMT
I've been half heartedly following the reports on what's going on with the TBD working group that the Government has created - why only half heartedly? I have serious doubts that they will be able to change things - I hope they can, but ...... Here is a report from one of my favorite publications when it comes to reporting on Lyme - the Huffington Post: Huffington Post - 1st meeting of Tick-borne disease working groupWith this the last part of the article and I agree with it: "Yesterday, two back-to-back presentations were a bit perplexing when taken together. In the first, a researcher essentially stated that Borrelia burgdorferi, the bacterium primarily associated with Lyme disease, has been proven in laboratory settings, in both human and non-human animals, to be able to persist in some circumstances through and following antibiotic treatment. Of all Lyme disease controversies, this is the polka-dotted, neon magenta elephant in the room. The next presenter, an official from the Infectious Diseases Society of America, spokes exclusively about the need to develop improved diagnostic tests and an effective vaccine for Lyme disease. He didn’t address persistence. This was a glaring omission, particularly from the IDSA, which denies that any legitimate evidence of potential persisting infection exists in human beings. By stacking these presentations—the first of which unequivocally stated something as undeniable fact, and the second of which ignored that statement while representing an organization that ignores the body of research on which the expert’s claim was made—the need to debate this of all issues within the Working Group was emphasized. And yet, there was no debate, no room and no time for debate. I hope that that will change. If it doesn’t, then the Working Group is an entirely futile effort. I realize that only days one and two of the Working Group have been convened so far, and it is too early to levy strong criticism—and so I am simply raising a red flag....."
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Post by alyeska on Dec 18, 2017 10:12:35 GMT
I've been half heartedly following the reports on what's going on with the TBD working group that the Government has created - why only half heartedly? I have serious doubts that they will be able to change things - I hope they can, but ...... Here is a report from one of my favorite publications when it comes to reporting on Lyme - the Huffington Post: Huffington Post - 1st meeting of Tick-borne disease working groupWith this the last part of the article and I agree with it: "Yesterday, two back-to-back presentations were a bit perplexing when taken together. In the first, a researcher essentially stated that Borrelia burgdorferi, the bacterium primarily associated with Lyme disease, has been proven in laboratory settings, in both human and non-human animals, to be able to persist in some circumstances through and following antibiotic treatment. Of all Lyme disease controversies, this is the polka-dotted, neon magenta elephant in the room. The next presenter, an official from the Infectious Diseases Society of America, spokes exclusively about the need to develop improved diagnostic tests and an effective vaccine for Lyme disease. He didn’t address persistence. This was a glaring omission, particularly from the IDSA, which denies that any legitimate evidence of potential persisting infection exists in human beings. By stacking these presentations—the first of which unequivocally stated something as undeniable fact, and the second of which ignored that statement while representing an organization that ignores the body of research on which the expert’s claim was made—the need to debate this of all issues within the Working Group was emphasized. And yet, there was no debate, no room and no time for debate. I hope that that will change. If it doesn’t, then the Working Group is an entirely futile effort. I realize that only days one and two of the Working Group have been convened so far, and it is too early to levy strong criticism—and so I am simply raising a red flag....." Aaaargh! Why don't they just come to the thousands of Lyme patients like us and test our blood? I guarantee they'd find some in Borrelia burdorferi in mine!!! Stupid, stupid, stupid.
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Post by Admin/ Traveler on Dec 18, 2017 17:30:36 GMT
Aaaargh! Why don't they just come to the thousands of Lyme patients like us and test our blood? I guarantee they'd find some in Borrelia burdorferi in mine!!! Stupid, stupid, stupid. Well, the problem with that is that we don't have testing that is reliable enough to be used!!! Even the CDC admits that there "surveillance testing" that is being used, was never intended to diagnose patients - but that never even slowed down IDSA officials that are interested in controlling the narrative on this disease. They've got big dreams, you know! So, we need to throw out the ELISA and the IFA, honestly. The Western Blot can stay - as a screening tool - if need be, but the real testing - for DNA with a highly sensitive test - is what we need, and we needed it decades ago. But, those that have tried to bring in new testing have either held the patents, or have been shot down by the 'powers that be'. Dr. Alan MacDonald was one of many that developed a good test, his was the DNA testing that was highly sensitive. I followed him closely, and even worked in a group hoping to promote his work, as his desire was to put one of these DNA testing machines in every DR's office in the US, and train them for free - but he needed the Govt's help - and he got shut down instead. After that, I realized what was going on, and have not followed anyone else trying to develop new tests, as if they do what they really need to do, they will simply be blocked, the patents will be held or some other way that the 'powers that be' have to stop this information from getting out. And no, this is not the rantings of a conspiracy theorist. These are facts that can be searched out and proven for anyone that has a desire to know the truth. What we need to ask ourselves is why the 'powers that be' feel they have the right to withhold better testing and better treatments for a pandemic of a particular disease that doesn't kill (at least not right away), but definitely disables those that get infected.
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Post by alyeska on Dec 20, 2017 4:51:45 GMT
Aaaargh! Why don't they just come to the thousands of Lyme patients like us and test our blood? I guarantee they'd find some in Borrelia burdorferi in mine!!! Stupid, stupid, stupid. Well, the problem with that is that we don't have testing that is reliable enough to be used!!! Even the CDC admits that there "surveillance testing" that is being used, was never intended to diagnose patients - but that never even slowed down IDSA officials that are interested in controlling the narrative on this disease. They've got big dreams, you know! So, we need to throw out the ELISA and the IFA, honestly. The Western Blot can stay - as a screening tool - if need be, but the real testing - for DNA with a highly sensitive test - is what we need, and we needed it decades ago. But, those that have tried to bring in new testing have either held the patents, or have been shot down by the 'powers that be'. Dr. Alan MacDonald was one of many that developed a good test, his was the DNA testing that was highly sensitive. I followed him closely, and even worked in a group hoping to promote his work, as his desire was to put one of these DNA testing machines in every DR's office in the US, and train them for free - but he needed the Govt's help - and he got shut down instead. After that, I realized what was going on, and have not followed anyone else trying to develop new tests, as if they do what they really need to do, they will simply be blocked, the patents will be held or some other way that the 'powers that be' have to stop this information from getting out. And no, this is not the rantings of a conspiracy theorist. These are facts that can be searched out and proven for anyone that has a desire to know the truth. What we need to ask ourselves is why the 'powers that be' feel they have the right to withhold better testing and better treatments for a pandemic of a particular disease that doesn't kill (at least not right away), but definitely disables those that get infected. Wow. I love how you can explain things so concisely. I was trying to talk to my husband about this and asking him to read the petition and hopefully sign it, and he just wasn't following me. It's not that he doesn't support me, it's that he's working on a cancer drug for a very specific kind of cancer, and he knows the ins and outs of trials and political/legal/monetary ramifications if the company who makes a drug takes one wrong step. He just hasn't had enough time to research this disease even though I've been diagnosed with it for years. (You'd think he'd be a little more interested in the disease that's affecting his own life, but no, it's all about cancer, cancer, cancer. I think he's just too worried about what Lyme is going to eventually do to me and doesn't want to think about it. I get it, but it hurts too.) He thinks I should try to see if my doc can get me into some clinical trials, even if it's just clinical trials for diagnosis. I think it's highly doubtful, but I see him Friday and will ask.
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Post by alyeska on Dec 20, 2017 5:09:16 GMT
My husband signed the change.org petition! I can't believe it!
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Post by Admin/ Traveler on Dec 21, 2017 17:58:11 GMT
Well, look at that!! You're having more of an impact on your hubby's views that you realized!!! Congratulations!!!
And - it may not be that he's not interested. There are a lot of cancer patients that now have Lyme disease - and most of them say that Cancer is nothing compared to Lyme and company!! He may have seen "enough" for him to understand this - and it has him scared to loose you. I know when a lot of hubby's finally break down and speak the truth - they are usually very scared that they will loose the person they have loved. I know that's what my hubby finally broke down and told me as well.
Keep trying to 'bring him into the conversation' on these infections, but do your best to keep your patience with him shying away from it at the same time. Gentle, loving influence has done wonders with my hubby!! LOL! He now announces to doctors that I know more than they likely do about these infections!! Ha ha ha!!! Talk about embarrassing me!!! It's one thing for me to start the conversation and to end up proclaiming I must know more than they do, but for him to just announce it?? Ugh. Oh well, it's still his way of support!! LOL!
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kb69
Junior Member
Posts: 72
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Post by kb69 on Dec 21, 2017 21:45:51 GMT
Aaaargh! Why don't they just come to the thousands of Lyme patients like us and test our blood? I guarantee they'd find some in Borrelia burdorferi in mine!!! Stupid, stupid, stupid. Well, the problem with that is that we don't have testing that is reliable enough to be used!!! Even the CDC admits that there "surveillance testing" that is being used, was never intended to diagnose patients - but that never even slowed down IDSA officials that are interested in controlling the narrative on this disease. They've got big dreams, you know! So, we need to throw out the ELISA and the IFA, honestly. The Western Blot can stay - as a screening tool - if need be, but the real testing - for DNA with a highly sensitive test - is what we need, and we needed it decades ago. But, those that have tried to bring in new testing have either held the patents, or have been shot down by the 'powers that be'. Dr. Alan MacDonald was one of many that developed a good test, his was the DNA testing that was highly sensitive. I followed him closely, and even worked in a group hoping to promote his work, as his desire was to put one of these DNA testing machines in every DR's office in the US, and train them for free - but he needed the Govt's help - and he got shut down instead. After that, I realized what was going on, and have not followed anyone else trying to develop new tests, as if they do what they really need to do, they will simply be blocked, the patents will be held or some other way that the 'powers that be' have to stop this information from getting out. And no, this is not the rantings of a conspiracy theorist. These are facts that can be searched out and proven for anyone that has a desire to know the truth. What we need to ask ourselves is why the 'powers that be' feel they have the right to withhold better testing and better treatments for a pandemic of a particular disease that doesn't kill (at least not right away), but definitely disables those that get infected. It's so frustrating. It just makes you wonder what it's going to take for the science to win and an entirely different approach to testing -- like you mentioned, Trav -- and treatment become standard practice. I remember when the White House told the public that President Bush had been treated for Lyme. They waited an entire year to release that information! Why? I wonder how he was treated. How many weeks or months of treatment, and what types of treatment, were made available to him? I believe in the power of people to create change. But, history shows us that time has to be on your side. For so many of us struggling with this disease, time is just a luxury we don't have. It makes me so angry.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Dec 21, 2017 21:55:23 GMT
Well, look at that!! You're having more of an impact on your hubby's views that you realized!!! Congratulations!!! And - it may not be that he's not interested. There are a lot of cancer patients that now have Lyme disease - and most of them say that Cancer is nothing compared to Lyme and company!! He may have seen "enough" for him to understand this - and it has him scared to loose you. I know when a lot of hubby's finally break down and speak the truth - they are usually very scared that they will loose the person they have loved. I know that's what my hubby finally broke down and told me as well. Keep trying to 'bring him into the conversation' on these infections, but do your best to keep your patience with him shying away from it at the same time. Gentle, loving influence has done wonders with my hubby!! LOL! He now announces to doctors that I know more than they likely do about these infections!! Ha ha ha!!! Talk about embarrassing me!!! It's one thing for me to start the conversation and to end up proclaiming I must know more than they do, but for him to just announce it?? Ugh. Oh well, it's still his way of support!! LOL! I am one cancer survivor that would agree with you 100%, Trav. I had breast cancer 6 years ago. I caught it early, and have an excellent prognosis. When it was discovered, there was testing and staging and then ... a plan. A tried and true plan that left little ambiguity as to how to move forward. With Lyme? Nothing feels further from the truth. Like you and Alyeska, I know that talking with your husband about Lyme/Co's can be a delicate balance. My husband wants to be supportive, but I know he gets frustrated when he can't just fix the problem. Yesterday, he blew me away with his response to my tearfully lamenting that I didn't know if there was a path forward. He said, "there is a path. But, there's no map. There's no map for Lyme. It's like they drop you in a jungle and hand you a machete. There's a way out. But, it's up to you to figure out how to cut through the brush to get there. And, all you can do is keep trying, and recalibrating when you hit a bump or bend you didn't anticipate." Here's to all of us and our machetes. And, here's to this forum -- it's so helpful to get input from others as you're trying to chart your path to recovery.
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Post by Admin/ Traveler on Dec 21, 2017 22:29:58 GMT
KB, your hubby hit the nail on the head!!!!
"there is a path. But, there's no map. There's no map for Lyme. It's like they drop you in a jungle and hand you a machete. There's a way out. But, it's up to you to figure out how to cut through the brush to get there. And, all you can do is keep trying, and recalibrating when you hit a bump or bend you didn't anticipate."
EXACTLY!!!! And it's not an easy thing to complete either!!! We have to think of ourselves in a show like "naked and Afraid" (LOL) - as that's pretty much how we are. We are exposed (naked) to the reality of how complex this all is and no road map. We are afraid, and for good reason, because there is no road map!!!! We have to just keep trying things and researching to see what's next for us, because no one has the answers, at least not once we enter into chronic infections.
BUT!! There IS hope. Many have healed these chronic infections and been able to return to a "nearly normal" life. I did, then too much stress on a newly healed body, and I fell flat on my face with adrenal exhaustion, which, by the time I got a doctor to agree that my adrenals were in trouble, I had moved on into Addison's. Then another tick bite.
Anyway, please tell your hubby I said Thank you for that explanation!!! It's perfect!!! And, may I use his words in other places as well???
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kb69
Junior Member
Posts: 72
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Post by kb69 on Dec 21, 2017 23:43:14 GMT
KB, your hubby hit the nail on the head!!!! "there is a path. But, there's no map. There's no map for Lyme. It's like they drop you in a jungle and hand you a machete. There's a way out. But, it's up to you to figure out how to cut through the brush to get there. And, all you can do is keep trying, and recalibrating when you hit a bump or bend you didn't anticipate." EXACTLY!!!! And it's not an easy thing to complete either!!! We have to think of ourselves in a show like "naked and Afraid" (LOL) - as that's pretty much how we are. We are exposed (naked) to the reality of how complex this all is and no road map. We are afraid, and for good reason, because there is no road map!!!! We have to just keep trying things and researching to see what's next for us, because no one has the answers, at least not once we enter into chronic infections. BUT!! There IS hope. Many have healed these chronic infections and been able to return to a "nearly normal" life. I did, then too much stress on a newly healed body, and I fell flat on my face with adrenal exhaustion, which, by the time I got a doctor to agree that my adrenals were in trouble, I had moved on into Addison's. Then another tick bite. Anyway, please tell your hubby I said Thank you for that explanation!!! It's perfect!!! And, may I use his words in other places as well??? Naked and afraid -- ain't that the truth! I've never felt more vulnerable in my life. Yes, of course, please use his words if you find them helpful. Hubby would be flattered to know that he offered a useful analogy to this experience. Of course, he just got home, and we got into an argument about Lyme. He asked if I was getting excited about the holidays, and I answered that I would be excited if I could figure out whether I was still herxing or whether I should be brave enough to try another Bicillin shot with Christmas right around the corner. "Yesterday, you said you were herxing, now you're not? Are you sure?" How do I know? Sometimes you just feel awful and you can't tell what's going on. I know he just wants us all to have a nice Christmas. Maybe Santa needs to bring me a new machete...
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Post by Admin/ Traveler on Dec 22, 2017 17:36:13 GMT
How wonderful, thank you to you and your hubby!!! I have copied it word for word, as I don't want to get it wrong!!
I would say, with Christmas just days away, wait on using the Bicillin. A few more days of waiting sure isn't going to hurt your treatments, will give you a bit of extra time to continue detoxing....and just might help with you having a better, more comfortable and more enjoyable Christmas!
We need to make adjustments, as your hubby said. And I'd say that Christmas deserves to have adjustments so that we can enjoy it as much as possible with our family and loved ones!!!
And maybe Santa can bring you something other than a machete that will just show you the love that you have within your family. We can help you with that machete. LOL!!!
You're still posting over on healingwell, aren't you KB? (no worries, lol!! Girlie posts here too - we made sure to keep it like that!) I would encourage you to continue to post there - let's face it, they have more members - and keep double checking the information you get over there (as well as here, or anywhere else) to be sure it's right for you. But, the more you talk to others, the more information you will have.
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