Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Joan, thank you for your insightful post. I'm trying to make sence of my Lumbar Puncture report and as a laymen it is " mind numbing " to say the least. As things stand for me I just got tested through IgeneX and will get my results back on Aug 3rd. What has peaked my interests as of late is (given my limited understanding of the text); is why wasn't a Western Blot performed to rule out Lyme Disease when it clearly states an abnormally high albumin level in both the CSF (cerebrospinalfluid) and Albumin Index (IGg) are present........The test clearly implies its' imperfect nature for a soid MS diagnosis if their elevated. I mean it's only 90% indicative for MS. Is it fair to say that an MS diagnosis was a bit premature without performing additional testing; such as Western Blot to rule out Lyme Disease; which would have ultimately supported the notion that the eleveted albumin levels were proof of MS definitively. Because if this lab work comes back positve for Lyme in Aug, I can assure you this question will require an answer. I'd like to know who has the authority to get away with giving a short-sighted diagnoses that may have perminentley damaged my CNS. Thanks again, Mike M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Mike, the ones who can and decide OVER everyone CDC and FDA. In case of lyme well IDSA is the culprit and their outraging power over peoples lives! All illness has a cause, even MS, and if not genetic then what? Well, the causes possible are plenty but no one seems to really wanna find them, including the MS society... Sadly in the end it's on you and like-minded others... all the best! Connected by DROID on Verizon Wireless Re: MS versus Lyme Joan, thank you for your insightful post. I'm trying to make sence of my Lumbar Puncture report and as a laymen it is " mind numbing " to say the least. As things stand for me I just got tested through IgeneX and will get my results back on Aug 3rd. What has peaked my interests as of late is (given my limited understanding of the text); is why wasn't a Western Blot performed to rule out Lyme Disease when it clearly states an abnormally high albumin level in both the CSF (cerebrospinalfluid) and Albumin Index (IGg) are present........The test clearly implies its' imperfect nature for a soid MS diagnosis if their elevated. I mean it's only 90% indicative for MS. Is it fair to say that an MS diagnosis was a bit premature without performing additional testing; such as Western Blot to rule out Lyme Disease; which would have ultimately supported the notion that the eleveted albumin levels were proof of MS definitively. Because if this lab work comes back positve for Lyme in Aug, I can assure you this question will require an answer. I'd like to know who has the authority to get away with giving a short-sighted diagnoses that may have perminentley damaged my CNS. Thanks again, Mike M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Valery, exactly my point. The financial loss to big pharma, oh boy, cannot afford that so lets keep folks sick and get their money... so sad.so disgusting! Bianca Connected by DROID on Verizon Wireless Re: MS versus Lyme > > Joan, > thank you for your insightful post. I'm trying to make sence of my Lumbar > Puncture report and as a laymen it is " mind numbing " to say the least. As > things stand for me I just got tested through IgeneX and will get my results > back on Aug 3rd. What has peaked my interests as of late is (given my > limited understanding of the text); is why wasn't a Western Blot performed > to rule out Lyme Disease when it clearly states an abnormally high albumin > level in both the CSF (cerebrospinalfluid) and Albumin Index (IGg) are > present........The test clearly implies its' imperfect nature for a soid MS > diagnosis if t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2011 Report Share Posted July 24, 2011 I would be interested in seeing an LLMD and getting the Iginex test. Unfortunately my health insurance does not cover any of the LLMDs in my area or the Igivinex test. I suppose it would be about $300 for the consult and another $200 or so? for the test. I suppose it would be worth it if I am one who has Lyme and not MS. I did have the standard Western blot but that was negative but I know from those here that that is not a valid test. If I were to come out positive on Iginex I am not sure I want to put my body through years of antibiotics, so this is a hard call for me. Is there any way symptomatically that one can try to figure out if they have lyme versus MS caused by other things? Zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2011 Report Share Posted July 24, 2011 I would be interested in seeing an LLMD and getting the Iginex test. Unfortunately my health insurance does not cover any of the LLMDs in my area or the Igivinex test. I suppose it would be about $300 for the consult and another $200 or so? for the test. I suppose it would be worth it if I am one who has Lyme and not MS. I did have the standard Western blot but that was negative but I know from those here that that is not a valid test. If I were to come out positive on Iginex I am not sure I want to put my body through years of antibiotics, so this is a hard call for me. Is there any way symptomatically that one can try to figure out if they have lyme versus MS caused by other things? Zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Zoe, You may be able to find a LLMD near you that participates with IgeneX labs (http://igenex.com/Website/) by contacting IgeneX directly. If you haven't already done so, I'd call all of the LLMD's that they give you (near you and not)Don't just go off what your ins. co. tells you. You may find one who is in/out of network for your ins. Also, The Western Blot is a valid test for diagnosing a particular Lyme bacteria (I believe Borrelia). The problem is that MD's usually stop there. IgeneX does a wider panel of bacterial tests as well as co-infections that won't be detected on a Western Blot alone. And you can't stop there. Fry Labs does additional testing IgeneX doesn't and vice-versa. As for antibiotics, the spirochete bacteria is more dangerous to your body if left untreated than antibiotics. There are alternative/holistic testing/treatment options. check out this link http://www.ehealthland.com/Kits_Boiron.asp. I believe my LLMD used a portable test kit like the one in the link. He told me that 100% of the patients who tested positive using the homeopathic test came back positive on their IgeneX blood work (I was positive for Lyme); so it may be worth looking into...........Good Luck Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Zoe, You may be able to find a LLMD near you that participates with IgeneX labs (http://igenex.com/Website/) by contacting IgeneX directly. If you haven't already done so, I'd call all of the LLMD's that they give you (near you and not)Don't just go off what your ins. co. tells you. You may find one who is in/out of network for your ins. Also, The Western Blot is a valid test for diagnosing a particular Lyme bacteria (I believe Borrelia). The problem is that MD's usually stop there. IgeneX does a wider panel of bacterial tests as well as co-infections that won't be detected on a Western Blot alone. And you can't stop there. Fry Labs does additional testing IgeneX doesn't and vice-versa. As for antibiotics, the spirochete bacteria is more dangerous to your body if left untreated than antibiotics. There are alternative/holistic testing/treatment options. check out this link http://www.ehealthland.com/Kits_Boiron.asp. I believe my LLMD used a portable test kit like the one in the link. He told me that 100% of the patients who tested positive using the homeopathic test came back positive on their IgeneX blood work (I was positive for Lyme); so it may be worth looking into...........Good Luck Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 Mike, You were treated for Lyme? How did it go, are you symptom free? > > , > Always interesting to see the reactions expressed by members in regard to different subjects pertaining to MS. I've been a member for a couple of years now and I think two things to try and keep in mind here are that most if not all of what you read about in here pertains to or encompassed MS in one way or another. Second, as with all things they WILL come and they WILL go. With MS it is such an unknown. I believe healthy debate/discussion is vitally important to exercising an objective understanding of the entire scope of MS. I find when I get grumpy and that's quite often I can aways count on my dog or a funny movie to bring me out of my funk. We all have to find our way.......... > Cheers, > Mike Macchiarella > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 Mike, You were treated for Lyme? How did it go, are you symptom free? > > , > Always interesting to see the reactions expressed by members in regard to different subjects pertaining to MS. I've been a member for a couple of years now and I think two things to try and keep in mind here are that most if not all of what you read about in here pertains to or encompassed MS in one way or another. Second, as with all things they WILL come and they WILL go. With MS it is such an unknown. I believe healthy debate/discussion is vitally important to exercising an objective understanding of the entire scope of MS. I find when I get grumpy and that's quite often I can aways count on my dog or a funny movie to bring me out of my funk. We all have to find our way.......... > Cheers, > Mike Macchiarella > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 saw a post on my Lyme Disease Facebook account about a group / fund for financially helping people get IgeneX tests. My IgeneX test was about $495. My last LLMD appointment was about $300. The standard inaccurate test is the ELISA test. IgeneX is a Western blot. Sadly, if we have had the sickness for a while, not even the IgeneX test is a " slam dunk " test. At least mine wasn't. There are a couple of other options. The book " Healing Lyme " by Buhner, available on Amazon, uses herbs to make tea. Currently I am taking an herbal tea in addition to my antibiotics. Sadly, I have taken prednisone, and Rebif, and therefore a " steroid disaster " . Will be moving to IM antibiotics and maybe intravenous antibiotics. I am EXTREMELY puny as I have been sick for so long. Have taken oral antibiotics for 2.5 years now and still use a 4 wheel walker to move through my home. The intravenous abx with tube to my heart may be my only route out of this mess. I have TWO MS diagnoses. Have taken Rebif, Copaxone, and EAP. The longer we wait, the longer the spirochetes and coinfections have to reproduce inside of us :-( > > I would be interested in seeing an LLMD and getting the Iginex test. Unfortunately my health insurance does not cover any of the LLMDs in my area or the Igivinex test. I suppose it would be about $300 for the consult and another $200 or so? for the test. I suppose it would be worth it if I am one who has Lyme and not MS. I did have the standard Western blot but that was negative but I know from those here that that is not a valid test. If I were to come out positive on Iginex I am not sure I want to put my body through years of antibiotics, so this is a hard call for me. > > Is there any way symptomatically that one can try to figure out if they have lyme versus MS caused by other things? > > Zoe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2011 Report Share Posted July 27, 2011 SirR, Look into hyperbarric oxygen chamber therepy. It opens the muscle tissues allowing your herbs/antibotics to penetrate deeper and attack spirochetes that have burrowed in. Also, my naturopath informed me my protease breaks down the biofilm that these bugs encapsulate themsrlves in to hide from the immune system, herbs, & antibiotics. Look into it -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2011 Report Share Posted July 27, 2011 Also, it is more likely for the body to develop co infections if Lyme is left untreated. One of the co infections that can be present is babesia and if this is present hyperbaric cannot be used because babesia thrives on oxygen. I brought up HBOT to my LLMD and he said we would have to sort out my co infections first. Sent from my iPad > SirR, > Look into hyperbarric oxygen chamber therepy. It opens the muscle tissues allowing your herbs/antibotics to penetrate deeper and attack spirochetes that have burrowed in. Also, my naturopath informed me my protease breaks down the biofilm that these bugs encapsulate themsrlves in to hide from the immune system, herbs, & antibiotics. Look into it > > -M > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2011 Report Share Posted July 28, 2011 Thanks , I didn't know that about Babesia and HBOT. I was reading on the CALDA site about Babesia and something struck me. Babesia allows HHV-6 and EBV to flourish. I have both and have been unsuccessful at nuetralizing the EBV after months of trying different therepies (alternative and conventional). It'll be very interesting to see if I have had Lyme all the while and more interestingly if I have a Babesia co-infection. Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2011 Report Share Posted July 28, 2011 Your welcome Mike:) I didn't either and was in my LLMD's office asking for a script from him to try HBOT when he told me about the babesia. You should watch the radio show where he is interviewed. He talks about a wide range of issues......do a Google search on Dr and Lyme and you will find the video link. Best, Sent from my iPad On Jul 28, 2011, at 7:57 AM, Macchiarella wrote: > Thanks , > I didn't know that about Babesia and HBOT. I was reading on the CALDA site about Babesia and something struck me. Babesia allows HHV-6 and EBV to flourish. I have both and have been unsuccessful at nuetralizing the EBV after months of trying different therepies (alternative and conventional). It'll be very interesting to see if I have had Lyme all the while and more interestingly if I have a Babesia co-infection. > > Mike Macchiarella > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2011 Report Share Posted July 29, 2011 thanks........also found another very interesting site. Talks about HBOT therepy and how it was shown to be unsuccessful treating Lyme Disease. (was different reasons than what you expressed. http://www.lymebabesiaphysician.com/articles/why-lyme-treatments-fail.html Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
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