Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 Well, got my results back from the nerve conduction tests and MRI. Neuro doc says it’s not MS. (Well, duh.) I have all the symptoms of MS, but no lesions so it’s not MS according to him. He’s doing a neuro blood panel (no idea what labs are involved) to see what else it could be. He did say he thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica to help with the pain and I refused. I told him I would not take that crap! LOL! I know right now that something isn’t right. My hormones are off track for some reason. Trying to sort it out. Wish I could get labs for that done! Just wanted to let ya’ll know what I found out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 My daughter had to have one of those nerve conduction tests and I know they are not fun......I am glad you hear there are no lesions so far.....did want to mention that tryptophan (according to Rochilitz www.wellatlast.com )is contraindicated for people with porphyria. We are in the process of testing our family for it and if one has a genetic, or secondary porphyria caused by microbial infection or mercury toxicity...you should avoid dark meat of poultry and salmon ( because of the tryptophan.....I'll tell you I am thinking of writing a book called Don't make all the mistakes I've made " We are all so unigue and I am finding out that quite a few things which have been recommended over and over again in groups or by Dr.s have been problematic for my daughter. Another example is Epsom salt baths. After lugging in literally a ton of the stuff from costco for years and encouraging her to soak for mag. suplementation and detox....I find out she has problems with sufflation pathways and actually should avoid foods with Sulfites and magnesium sulfite ( Epsom Salt) is out.We just ordered the Mag chloride transdermal gel and bath as she really does need the mag. Anyway sorry to get carried away on a different subject but I saw you were supplementing the tryptophan and thought hhhmmmmI wionder if it is really good for you....FYI porphyria can present with many neurological symptoms .....seems like something all of us who are having a rough time should test for. Hope things improve for you Hugs, Well, got my results back from the nerve conduction tests and MRI. Neuro doc says it’s not MS. (Well, duh.) I have all the symptoms of MS, but no lesions so it’s not MS according to him. He’s doing a neuro blood panel (no idea what labs are involved) to see what else it could be. He did say he thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica to help with the pain and I refused. I told him I would not take that crap! LOL! I know right now that something isn’t right. My hormones are off track for some reason. Trying to sort it out. Wish I could get labs for that done! Just wanted to let ya’ll know what I found out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 ((((((((((((Big huge to you ))))))))))) Yea, it must be a flare. I’m sooooo tired and on the verge of severe depression. I am not liking it at all right now! Grrrrr… I did find out that the blood panel I’m getting is a bunch of stuff. It’s the ‘peripheral neuropathy panel’ – it’s the basics plus a hepatitis panel, thyroid (none of the ones I’d get of course), heavy metals, autoimmune… I think that was about it. It will be interesting to see for sure. I hope there is a natural killer lab on there too! The last time I had one it was a 2! I’m going to ask about the SPECT. If I can get some research/something to back up why I want to get it I think he’d at least consider it. We’ll see. I don’t go back until June, ugh! Thanks so much! From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of H Sent: Tuesday, May 04, 2010 4:03 PM To: Lyme_and_Rife Subject: Re: Re: OT: neuro appt Hi , Maybe it's the spring Lyme flair, 'cause I'm worse than normal (is that word in the Lyme dictionary? LOL) too. Anyhow, just thought I'd weigh in on the SPECT. If you insurance will cover, I'd say go for it. If not, I'm not sure what more you would learn. Our son had one this fall at the Amen Clinic. It told us that his brain was toxic and on overdrive. We already knew that. The amino acid / fishoil therapy didn't even touch him. I knew that too. So they moved right on into the psychotropic, stimulants, etc. Not an option. It doesn't sound like you'd be doing this at Amen so you might receive different results. I would just hate for someone to spend the big bucks like we did, and learn very little. It will be interesting to see what your labs are like. I had a telephone appt. with Dr. EHS today and she is mailing my lab requ. It will be interesting to see the labs she orders. Think happy thoughts, I don’t know if he’d do a SPECT. That would be cool if he did. My hubby is getting a degree in health physics and actually is doing some graduate work at the place where I had my MRI’s done. He’s ‘acquainted’ with the guy that owns the place and several of the docs. He’s tried getting me into the study they are doing (as a control) – if they happened to find something wrong with me, they’d pay for all the testing. Anyway… total long shot on all of that! Will keep trying though! J Doc seemed pretty convinced that it’s not MS. I asked him what it could be since I have electric shocks, altered sensation/numb spots, (among other things consistent with MS) and he didn’t have an answer. Going tomorrow to get my blood drawn for the neuro panel. We’ll see where that takes me… From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of tamarashorr Sent: Monday, May 03, 2010 1:35 PM To: Lyme_and_Rife Subject: Re: OT: neuro appt , My MRI did not show anything. It was the SPECT scan that showed the lesions in my brain. It really doesn't much matter in the end we have Lyme! Of coarse your hormones are all screwed up. Tamara > > Well, got my results back from the nerve conduction tests and MRI. Neuro > doc says it's not MS. (Well, duh.) I have all the symptoms of MS, but no > lesions so it's not MS according to him. He's doing a neuro blood panel (no > idea what labs are involved) to see what else it could be. He did say he > thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica > to help with the pain and I refused. I told him I would not take that crap! > LOL! > > > > I know right now that something isn't right. My hormones are off track for > some reason. Trying to sort it out. Wish I could get labs for that done! > > > > Just wanted to let ya'll know what I found out! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Hi , Thanks for sharing,hope you gals don't mind me dropping in here. I want to get tested for the Porphyria also. I was looking into it then got distracted with other protocols.You r so right about us all being so different. I tried so many things that were posted on the groups and did not do well except right at first and then finally got the positive for Pyrroluria and it made so much sense to me. I am slowly seeing shifts now since being on the treatment. Do u think the book is worth the money? Keebler on Lymenet posts a lot about KPU,Porphyria etc and gives addys for the support groups. Just in case you and others interested did not know. Peace and Blessings XJ Well, got my results back from the nerve conduction tests and MRI. Neuro doc says it’s not MS. (Well, duh.) I have all the symptoms of MS, but no lesions so it’s not MS according to him. He’s doing a neuro blood panel (no idea what labs are involved) to see what else it could be. He did say he thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica to help with the pain and I refused. I told him I would not take that crap! LOL! I know right now that something isn’t right. My hormones are off track for some reason. Trying to sort it out. Wish I could get labs for that done! Just wanted to let ya’ll know what I found out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Hi , So madam author, what is keeping you from writing this book? :-) Now is as good of a time as ever... Mag chloride is much better than Epsom salts, more will be easily absorbed... I was pretty surprised to lean that Epsom salts are not easily absorbed by the body... Might make one feel good in a soak, but so will mag chloride and it will be much easier absorbed. Take care, Jim > > > > > > > Well, got my results back from the nerve conduction tests and MRI. Neuro > > doc says it's not MS. (Well, duh.) I have all the symptoms of MS, but no > > lesions so it's not MS according to him. He's doing a neuro blood panel (no > > idea what labs are involved) to see what else it could be. He did say he > > thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica > > to help with the pain and I refused. I told him I would not take that > > crap! LOL! > > > > > > > > I know right now that something isn't right. My hormones are off track for > > some reason. Trying to sort it out. Wish I could get labs for that done! > > > > > > > > Just wanted to let ya'll know what I found out! > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Thanks for the vote of confidence Jim! Somedays i feel I could fill a book ) The Mag. chloride arrived today Yahoo! Hugs, Hi ,So madam author, what is keeping you from writing this book? :-) Now is as good of a time as ever...Mag chloride is much better than Epsom salts, more will be easily absorbed... I was pretty surprised to lean that Epsom salts are not easily absorbed by the body... Might make onefeel good in a soak, but so will mag chloride and it will be much easier absorbed. Take care,Jim > > >> >> > Well, got my results back from the nerve conduction tests and MRI. Neuro> > doc says it's not MS. (Well, duh.) I have all the symptoms of MS, but no > > lesions so it's not MS according to him. He's doing a neuro blood panel (no> > idea what labs are involved) to see what else it could be. He did say he> > thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica > > to help with the pain and I refused. I told him I would not take that> > crap! LOL!> >> >> >> > I know right now that something isn't right. My hormones are off track for > > some reason. Trying to sort it out. Wish I could get labs for that done!> >> >> >> > Just wanted to let ya'll know what I found out!> >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Thanks Buddy, I appreciate you keeping me posted. Unable to afford the book now. Does it say its genetic? Does he talk about the Poor mans Porf test. I saw it on LN or the Porf groups a yr ago. It was about putting urine in the sun,I forget how long and it turns a different color. I will try and find it again when up to searching. Mine turned an orangy red,if I remember right. Hugs and Healing Blessings to you and sweety pie. Well, got my results back from the nerve conduction tests and MRI. Neuro doc says it’s not MS. (Well, duh.) I have all the symptoms of MS, but no lesions so it’s not MS according to him. He’s doing a neuro blood panel (no idea what labs are involved) to see what else it could be. He did say he thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica to help with the pain and I refused. I told him I would not take that crap! LOL! I know right now that something isn’t right. My hormones are off track for some reason. Trying to sort it out. Wish I could get labs for that done! Just wanted to let ya’ll know what I found out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Oops sorry for the typos. i am sitting here attempting to type without my glasses N. Joyce There is different types of Poephyria . Some genetic, some from heavy metals, but many with genetic are asymptomatic until going on an antimicrobial drug therapy......I found information ,for example, on secondary Porphyria caused by treatment for CP try this link www.cpnhelp.org/secondaryporphyria Many with Lyme also have CP.This author says all patients should be screened for Porphyria before treatment. There are many many drugs on the no list which will push one predisposed into trouble....hormones also problematic. Hugs, Thanks Buddy, I appreciate you keeping me posted. Unable to afford the book now. Does it say its genetic? Does he talk about the Poor mans Porf test. I saw it on LN or the Porf groups a yr ago. It was about putting urine in the sun,I forget how long and it turns a different color. I will try and find it again when up to searching. Mine turned an orangy red,if I remember right. Hugs and Healing Blessings to you and sweety pie. Well, got my results back from the nerve conduction tests and MRI. Neuro doc says it’s not MS. (Well, duh.) I have all the symptoms of MS, but no lesions so it’s not MS according to him. He’s doing a neuro blood panel (no idea what labs are involved) to see what else it could be. He did say he thought I was B6 toxic and to stop taking it. (???) He offered me Lyrica to help with the pain and I refused. I told him I would not take that crap! LOL! I know right now that something isn’t right. My hormones are off track for some reason. Trying to sort it out. Wish I could get labs for that done! Just wanted to let ya’ll know what I found out! Quote Link to comment Share on other sites More sharing options...
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