Any Advice, Have Appointment Monday!

[savagek]

Hello,

I have been diagnosed with MS 6/12/07, but also have a Lyme Literate doctor to rule out Lyme Disease. I will get my results from iGeneX on 9/10/07.

Please let me know of any information, advice, or questions I should know about before going to this appointment.

Thanks,

Rob

[savagek]

Tory,

Good point, please explain to me what Lyme doctor did that he can't be trusted?

I know what turned off Quix was the "detoxification therapy"  from previous post 8/29/07, which was an abstract paper he gave me with a diet book. Also, the BioMeridian Health Analysis the Lyme Doctor mentioned.

Quix, please clarify.

Tory, make to read my post just above.

Rob

[savagek]

I am really starting to loose track with you, but I do appreciate the appology.

I can understand that you do not trust the Lyme Doctor. It is just like I did not trust the first Neurologist as he seen my rashes, he knew my symptoms, he did an MRI and LP, and after I asked was Lyme disease ruled he said NO! and he had the spinal fluid to do it. Then he said, you do not want Lyme disease! Now I thought to myself back then WOW, is he making it be MS, but I said, NO thats crazy to think that way.

At this point I have spent so much money out of pocket with the first Neurologist and the Lyme Doctor I cannot continue much more. This is why I am somewhat pissed at the first Neurologist for not doing the Lyme test wth the spinal fluid as I could of been at the point I am at now back then, several months ago and 1800.00 less of an expense for me.

I do think though I could be running out of time due to some changes with my symptoms and I want to get down to the bottom of this and get treatment.

And even now, I do not know who to trust at this point. I did in fact like this Lyme Doctor due to his approach, communication, and offering for me to record my appointments,.so different then other Docs I have seen, which did give me an overall sense of trust with him. But I tend to trust your opinion over his being the position your in versus his.

Reading over my reply to you I may have been a bit defensive and I do appologize, I really think this whole thing is starting to get to me but it is something I must follow through with.

I hope you understand.

Thanks,

Rob

[tory2457]

I too have been busy, yet I read all posts;  can someone please explain to me what  Rob's Lyme doctor did that he can't be trusted?

And for Rob ordering tests from IGeneX directly....that won't happen. A doctor MUST order the testing, and IGeneX will only release his test results to the ORDERING doctor.
Read IGeneX's website; they are very clear about that...

As for a doctor "fudging" test results? Can I assume Quix you were speaking of Rob's Lumbar Puncture results? that his Neurologist recommended he needed?

Rob, did you order your LP directly? and did that lab send you those results directly to you?

[Quixotic1]

Your're right, I was harsh and I was offensive toward you. You have posted no inconsistencies, except maybe proceeding with this doc without double checking (a second opinion) the meaning of the Igenex findings, but you actually have not yet had an opportunity to do so, as you point out.   I am sorry.  Frankly, I do not trust your Lyme doc (based on what you told us) and I'm frustrated that you do.  Given the things that he was telling you about his practice, I believe he very well may have falsified your test results.  It's your call and none of my business who you deal with and how you choose to do it.  I do appologize, but my frustration is sincere.  Quix  

[savagek]

Now you might be offending me!

Let me say, I got diagnosed by one Neurologist which said a lot of things I did not appreciate and he did not explain anything at all, in and out, in and out! I know he did the correct tesing and all, but I had a serious problems with our relationship, so I fired him. And seeked another oppinion right away in which I got the same diagnosis with the confirmation to rule out Lyme through LP or Lyme Doctor.

I then got to finally rule out Lyme Disease and to my surpise the results came back positive. The report states that IgeneX ruled Positive, CDC ruled Positive, NYS ruled positive. As I stated I still have the second oppinion Neurologist and by the way cannot get an oppiontment for 2 months. I will have him request the results from IgeneX as you stated, even though I really dont think he somehow altered the report sheet as I recorded all my oppiontments with him which was his suggestion. But if I do in fact find out he did, I will see my Lawyer. At this point I dont know what else to do until then and it was what you suggested.

I have not at any point accused the Neurologists of being a Liar but when I asked questions I did not answers or even get what kind of MS I had. You have given me more information about MS then my first Neurologist.

As for the probiotic that I take is Florastor twice a day. I have done my best to explain everything to the best of my ability as I really want to do the best for myself in what seems to be a huge crazy controversial sickness which I just found out about and dont know half of what the hell is going on. But I feel I am on the right track and this is partly to Thanks to you.

You let me know what the real inconsistencies are in what I have told everybody that makes you wonder, as this insults me but I will do my best to explain as I have no reasons to do this at all.

Rob

[Quixotic1]

Actually, Rob, I do have a couple of additional thoughts about your Lyme Diagnosis.  I find it odd that you seem so ready to accept the new diagnosis without seeking a second opinion.  When you heard it was MS, you immediately sought a second view.  But, now with this new Dr. whom you said has a great personality, you are willing to embark on a long, expensive therapy of antibiotics.  A single dose of Rocephin when I was in practice was a few hundred dollars.  Craig, above suggested a conventional Lyme research/Therapy Center in Connecticut.  I would wholeheartedly suggest that you seek another view from a place such as that.

Is it that this diagnosis holds out the hope of cure?  I have tried to tell you without coming out and saying it, that I think your new Lyme doctor practices what I consider to be quackery.  The nonsense about healing the "bi-lipid cellular membrane" (ie. the blood-brain barrier) is absolutely a crock of deception.  I hope you read the reference to the decades-old use of the electromagnetic field devices for diagnosis and therapy.  I am not closed to alternative medicine having practiced meditation and used acupuncture myself for many years.  But, I do like to see some real thought behind new practices, and what you told us of the new doctor - it was clear that  he was never going to accept MS and was all prepared to treat you for a host of other things rather than admit you have MS.  I was 100% sure that he would find something, ANYTHING, different and I told you so at the time.

I am curious as you never answered the question.  When this new doc placed you on high dose amoxicillin did he also begin you on a probiotic?

I decided when I began posting on this forum that I would take every person at their word about what they were going through.  But, there are real inconsistencies in what you tell us that make me wonder.  Do you have plans to verify this Lyme diagnosis?  Because if it is false, you risk years of neurologic degeneration before you will find out.

Those are my honest thoughts, cynical though they may be.  Quix