Guest guest Posted July 12, 2011 Report Share Posted July 12, 2011 Yes, IgeneX. > > Hi All, > > I was diagnosed with MS in 1997, and they did a " Lyme test " then (not sure what exactly, only found a mention of it years later in my hospital records). > > These days testing is more accurate etc, so I want to get retested. I thnik the best place is IGeneX Labs, but I'm checking in case any one has other ideas. I'm a big researcher. > > Tahnks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2011 Report Share Posted July 13, 2011 Hello all, ,this is responsse to your inquiry about labs. IGeneX appears to be one of the labs of choice. One of my docs has also used Frye. My younger daughter 's lyme clearly showd up on IGeneX. Not so vwith my older daughter's IGeneX. She is the one with MS. After 5 years of trying to determine what is causing her MS - when lyme was suspected by several alternative docs practically from the start - a lab called Spirostat recently identified Babesia, a parasite and co-infection of lyme and a another diffferent spirocette. My Naturopathic doc and my Chineses herbal doc both said if Babaesia shows up there is lyme. ***Spirostat lab tests for the DNA of the bacteria or parasite as opposed to the markers for anti-bodies which is what IGeneX tests for. It has been helpful to actually see a lab identifying the bacteria and parasite. I think both are of value. Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2011 Report Share Posted July 14, 2011 Thanks, this is very helpful! > > Hello all, > ,this is responsse to your inquiry about labs. IGeneX appears to be > one of the labs of choice. One of my docs has also used Frye. My younger > daughter 's lyme clearly showd up on IGeneX. Not so vwith my older daughter's > IGeneX. She is the one with MS. After 5 years of trying to determine what > is causing her MS - when lyme was suspected by several alternative docs > practically from the start - a lab called Spirostat recently identified > Babesia, a parasite and co-infection of lyme and a another diffferent spirocette. > My Naturopathic doc and my Chineses herbal doc both said if Babaesia shows > up there is lyme. ***Spirostat lab tests for the DNA of the bacteria or > parasite as opposed to the markers for anti-bodies which is what IGeneX tests > for. It has been helpful to actually see a lab identifying the bacteria and > parasite. I think both are of value. > Joan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Most nueros are very closed minded and don't think outside the box. I did a lot of research after the nuero walked into my hospital room and said I have MS. Now, five years later I am not too happy that Lyme disease has ravaged my body, but at least I have a face to the monster. Yes, Mike it would seem important if nueros or MS specialists were required to order a specialized test for Lyme before they tell you there is nothing they can do for you. I started my treatment for Lyme and the antibiotics are kicking my butt. Biaxin and then I am supposed to add a $1700 antibiotic in two weeks,, my insurance will pay half.  Subject: Re: Re: MS versus Lyme To: mscured Date: Saturday, July 16, 2011, 4:54 PM  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 17, 2011 Report Share Posted July 17, 2011 I agree with everything being discussed in regard to my post....after the fact. However, before the fact it clearly states in the report that the test is only 90% accurate for MS with the aforementioned elevated albumen and related markers and a bacterial or viral infection may be present. It only stands to reason furthur testing should've been done to rule out a bacterial infection; Lyme most relevant in my case. If a woman is pregnant and misses her period she gets an at home pregnancy test to confirm. An OBGYN would need to see an ultrasound or another clinical supporting factor to support a positive pregnancy case..... You don't prescribe chemo for a sprained ankle. It's not on me, a 30yr old laymen to know I may have Lyme Disease and not what doc's are determining from over 10k in testing...objectively speaking. -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2011 Report Share Posted July 21, 2011 , 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 21, 2011 Report Share Posted July 21, 2011 Mike,  You can say that again  I am particularly grumpy and feeling -- well I won't say from the antibiotics I am on... hmmm.. uggggh .. would be the word. I get comfort from my furry friend Cody who suffers through my kisses-- haha and a funny movie helps me not get to wrapped up in my illness when yet in the back of my mind it seems that it has wrapped me up.  Best,  Subject: Re: MS versus Lyme To: " mscured " <mscured > Date: Thursday, July 21, 2011, 5:28 AM  , 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 21, 2011 Report Share Posted July 21, 2011 Also,  I wanted to add-- since it seems we have been on the MS v Lyme topic that if you read articles written by certain LLMD's that the Lyme bacteria can cause an MS illness, ALS, Lupus, Fibromyaligia, CFS syndrome, etc.... I was watching a radio interview by an LLMD and he talks about the way a great many of these illnesses are misdiagnosed as to their root causes and he talks about the treatment and success in subsiding the symptoms in certain cases. A systematic illness that is driven by bacteria will become worse at times and at other times subside where many symptoms disappear. He also in the interview discusses the nature of the Lyme bacteria-- it's shape of a corkscrew and how it easily invades body tissue-- in fact-- it prefers it and penetrates the blood brain barrier into the brain as well as other organs in the body including the heart--- can go into lymphatic system.. He also discusses how that if the bacteria is not eradicated quickly in the body and the person goes undiagnosed or misdiagnosed than there is more likely to be the issue of co-infections that have to be dealt with in the body. The radio show took calls from the public for the LLMD to answer and most of the calls were from people who had been misdiagnosed with other causes for their illnesses-- such as MS Lupus, etc....very interesting. He also mentions how Lyme is prevalent everywhere and not just localized to one area of the country and that most NEVER know they have been biten by a tick and most never have a rash.  Best,  Subject: Re: MS versus Lyme To: " mscured " <mscured > Date: Thursday, July 21, 2011, 5:28 AM  , 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 23, 2011 Report Share Posted July 23, 2011 I'm a poster boy for Lyme mistaken for MS. Have written MUCH about the topic here on MS Cured. Visit the CALDA (california Lyme disease association) www.lymedisease.org and get a copy of Lyme Doc Joe Burrascano's " Putting Lyme Behind Us " . He discusses diagnosis and treatment. GREAT lecture !! Rebif is a 2 BILLION dollar per year drug. Recently they were fined 44 million for paying physicians to prescribe Rebif. NONE of the Lyme (borreliosis) tests are 100% accurate, especially the standard test our front line physicians give us. If we have had steroids (prednisone)and or drugs to throttle out immune systems back, we are " steroid disasters " and a likely candidate for IV antibiotics. Potentially I will be having a port installed for IV antibiotics. The diagnosis is a CLINICAL diagnosis based on history, drugs, etc. For symptoms: www.CanLyme.com One of the prevalent co-infections, bartonella, is also a brain infection that inflicts personality changes on people. My history: April 2000 optic neuritis (left eye 20/15 to 20/400) April 2004 MS diagnosis, took prednisone, Rebif for one year, Cpaxone for 10 months. Aug 2006 : MS diagnosis Sept 2006 : hired a quackish physician and started LDN. Then intravenous EAP March 2008: Lyme disease and coinfections Sept 2010 hired LLMD #2 and #3. > > > > Subject: Re: MS versus Lyme > To: " mscured " <mscured > > Date: Thursday, July 21, 2011, 5:28 AM > > >  > > > > , > 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 24, 2011 Report Share Posted July 24, 2011 SirR, I may be mistaken however I found that at the link you provided you must become a member to have access to the DVD set on Dr. Burrascano's lecture you refered to which may actually be titled " Putting Lyme Behind You " ? It also states that a $50 donation upon membership will get you the DVD's. I'm not opposed to this but since I haven't actually been diagnosed with Lyme yet I'd like to keep my reseach as cost free as I can at this point. If you have or know of where I can view the lecture for free (a different/modified link), perhaps you could supply it to the group? feel free to contact me directly........... Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2011 Report Share Posted July 24, 2011 Am not a member of CALDA. Just pressed the button that said " $40 donation " , and ordered the DVD. http://www.lymedisease.org/lyme_store/lyme_store_burrascano.html The speech is very good for diagnosis AND treatment. Under Our Skin is a bit theatrical showing how BAD the disease is, but not much on diagnosis. The diagnosis is a CLINICAL diagnosis based on history and symptoms. For symptoms www.canlyme.com The longer we wait, the longer the spirochetes and coinfections have to reproduce and burrow themselves into our tissues. Also place MUCH research into finding a LLMD. Not all LLMDs are a good fit. Give the first one 3 to 6 months and start shopping for the next LLMD. the LLMDs frequently have a 4 to 6 month wait. > > SirR, > I may be mistaken however I found that at the link you provided you must become a member to have access to the DVD set on Dr. Burrascano's lecture you refered to which may actually be titled " Putting Lyme Behind You " ? It also states that a $50 donation upon membership will get you the DVD's. I'm not opposed to this but since I haven't actually been diagnosed with Lyme yet I'd like to keep my reseach as cost free as I can at this point. If you have or know of where I can view the lecture for free (a different/modified link), perhaps you could supply it to the group? feel free to contact me directly........... > > 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 My Igenex test was 200 Sent from my iPad > bout $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 i= s a " slam dunk " test. At least mine wasn't. There are a couple of other options. The book " Healing Lyme " by Buhner, ava= ilable 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 disaste= r " . 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 antibio= tics for 2.5 years now and still use a 4 wheel walker to move through my ho= me. The intravenous abx with tube to my heart may be my only route out of t= his 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 insi= de 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 Not yet, I'm waiting for my IgeneX blood results first. I did test pos. for Lyme on a homeopathic test that my LLMD has used on other patients, 100% of which who also tested pos. came back pos. on their blood work. -M 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 Seems like the price has been reduced :-) I had my test done in 2007. Ordered by reviewing the web page, then telephoning the order in. The Lyme doc I hired preferred a test from Fry Laboratories, so I also ordered that test, which was also about $500. I was able to " float " my tests on my credit card. Feel like I had to " escape " the MS-cult. Strongly feel that if I slid this far down the medical-industrial-complex tunnels, others have also been incorrectly shoved into the MS-cult :-( I sleep A LOT. Feel free to send me a note to wake me up :-) > > > > > > 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...
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