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

[monotreme]

Hi Rob, I will get that name for you.  Also, I noticed that you have low total testosterone of 250.  I was reading an alternative medicine article that my wife got about how they tested the testosterone of men with MS and they were all low.  I also have low testosterone which happened in 2004.  I am not diagnosed with MS but am working on getting tested.  Mine runs in the high 200s...too low for my age.  Just thought it was an interesting coincidence!!..Craig

[Quixotic1]

Nice article By  Dr. Donta (2002)

http://www.immunesupport.com/library/showarticle.cfm/ID/3579

[Quixotic1]

The conventional medicine specialty which deals with Lyme diagnosis and treatment would be Infectious Disease.  If the center in Connecticut is unfeasible for some reason, you might try the University in Ann Arbor - check with the medical center's Infectious Disease Department and See if they have a Lyme specialist.

Also there is a well-known MD in Boston:

Sam T. Donta, MD
Editorial Board, JSTD
Infectious Diseases
Professor of Medicine
Infectious Diseases & Molecular Medicine
Boston University Hospital
Boston Veterans Administration Medical Centers

He is the Director of the boston University Medical Center Lyme Clinic.  Having found him and read one of his articles I intend to read more as his stuff makes the most sense of anything I've read.  I couldn't find a phone number, but you could probably just call BUMC.

Quix

[savagek]

Hi Craig,

Sorry I did not get back to you as it seems things took a negative turn for some reason !!!

Anyway, please get me that information if you could I would appreciate it as I lived in Mass. most of my life, one state over, so might be a possibility. Either way, it sounds like a great place for information/questions/answers.

Thanks,

Rob

[monotreme]

Rob, the place in Lyme Connecticut is the original conventional medicine center that discovered Lyme disease and is the best place for treatment.  I will find out the name and let  you know, in case you want a second opinion.  The doctors there publish extensively on Lyme disease...Craig

[tory2457]

thxs Rob, no need for you Quix to clarify.

Good to know you started treatment. I'll wait for you to post when you have your first Jarish Herxheimer reaction.

or if you don't have a reaction, I'll wait for that as well.

[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

[Quixotic1]

I have no educated thoughts at this point.  The 2+ IgM indicates active infection of something.  I nothing of the particular bands in question.  I would seek the neuro's input, and request that he request the Igenex results independently and meantime start antibiotics (Rocephin).

Good luck, Quix

[savagek]

Well, here are the results of my IgeneX Western Blot:
IGM - 28 ++, 31 IND, 39 +, 41+, 58 +, 66 +, 83-93 IND
IGG - 39 IND, 41 +, 45 +

I started IV antibiotics (Rocethin or Rocephin???), not sure on spelling. Will be doing this 2hrs 4 days a week with evalluation/testing every 4 weeks. He said with Lyme Disease the rule is for every year you had Lyme Disease it takes 3 months to get better. Once I feel better he said they will continue 2 more month and then stop. Also, he said in my case my MS is Lyme.

Please let me know your thoughts.

Thanks,

Rob

[Quixotic1]

I only have a few minutes as my family is here, but I know you want to get ready for your appointment.  You had distinct oligoclonal bands on your first LP.  This means you had a some clones of activated antibody-producing cells that were in high production of a certain antibody, so when they put it in the diffusion gel they migrated as a darker band.  These usually indicates an activation of the immune system and it also happens in the peripheral blood stream also.  Infact, when it happens it is ONLY supposed to happed peripherally.  This kind of immune activity in the CSG indicates the "Blood-Brain Barrier" has been breached and abnormal immune activity is happening in the cerebrospinal fluid.

They measure the serum to see if there are any bands there.  And they do the CSF to look for bands and compare the two.  If the CSF has any bands that ARE NOT present in the blood serum, then they know the abnormal production is, in fact, happening in the Central Nervous System, CNS.  So you had 4 different bands in the CSF that were not present in the bloodstream.  This is considered a positive result for the diagnosis of MS.  HOWEVER, if the Lyme bug has invaded the CNS by getting across the blood-brain barrier, then it can stimulate immune action against it.  This also may produce oligoclonal bands of antibodies which are specific for Lyme.  If these are found it is darn direct evidence of the Lyme organism in the CNS.  The IgG Synthesis Rate reflects this special immune activation.

The markedly elevated Myelin Basic Protein is also a weak indicator of myelin damage, turnover, or repair.  It cannot be used to diagnose MS, but does point slightly toward it.  I would have to do more reading to see if it is elevated in neurologic Lyme disease, but it wouldn't surprise me.  The problem with this is that a good number of people without neurologic illness also have MBP in their CSF.

It is possible (probably unlikely) that they saved some of your CSF from the first LP and froze it.  If this is the case, maybe it could be examined for the specific bands - or perhaps, the specific bands were identified the first time.  Your new neurologist could tell you if this is even possible.  If it is not he may very well wish to redo the LP (in which case remember my rec).

The Human Herpes Virus - 6 is a common virus which causes the childhood illness Roseola.  About 90% of people "have the virus,"  meaning they were infected at one time.  We know that herpes viruses remain alive and usually dormant in the body after infection, but  they can be reactivated later.  Examples of common herpes viruses are the Chickenpox virus, EBV, herpes I & II, and HHV-6.  It has been strongly implicated as one of the possible triggers for the immune inflammation in MS.

When one measures for the presence of the HHV-6, they can look for 1) long-lasting IgG antibodies against the virus.  Again, 90% of Amercans will be positive.  2)  they can look specifically for higher levels of an antibody against a antigen (protein) produced early in an infection (or re-activated infection) by HHV-6.  In several studies a significant subset (like two thirds) of people with RRMS had high titers against this early antigen and 1/5 of the healthy controls had it.  3) They can look for the virus itself, by testing for HHV-6 DNA.   In the study I referenced, about one third of people with MS showed this DNA in their serum and none of the healthy controls had it.

So, depending on the test the LLMD did, it may or may not be significant, but if it was one of the sensitive tests (and not just the long-lasting antibody, IgG) it would tend to point toward MS and not Lyme.  I have found no evidence that they think HHV-6 infection directly causes MS, but may excite the immune system to produce the disease.  There is actually stronger evidence for this role by EBV (the mono virus)

I don't see any reason to invoke yet another cause of your problems with looking for heavy metals, when you already have two good answers, but "what the hey."

SOAPBOX ALERT -next two paragraphs

Somehow I lost the link to the article on Lyme and MS.  I'll keep looking, but reading it prompted a lot of what I told you.  Rob, I have no doubt AT ALL that a serious problem with undiganosed Lyme disease exists.  I believe that it is (often? I don't know) misdiagnosed as MS.  I don't believe that half a million new cases appear each year and that most of the neuro diseases we face today that we call autoimmune are, indeed from Lyme.

I don't believe that one needs to rewrite current science, disregarding the existence of autoimmunity in order to make their case for better diagnosis and treatment of Lyme disease.  It is this stance, in fact, that actually angers me.  I have read these "position papers" and the people writing them do not understand the science of autoimmunity.  Heck, they base much of their belief that it is "irrational or silly" for the body's immune system to turn on itself except in extreme and unusual cases.  They have said so here.  In fact, the immune system "acts silly" all the time.  In the case of allergies, the body produces antibodies (in this case, IgE) against things in our environment which offer us no danger at all.  Yet we become ill from the effect of these antibodies and can even die.  Do I need to be protected against the olive tree in my parent's yard?  It honestly has never threatened me.  I've had only nice things to say about it.  Yet walking under it when it blooms will land me in the ER.  I could, of course, go on and on.  Allergies are a misguided, inappropriate hyperactivity of our immune system against proteins and "antigens" in our external environment.  That a similar destructive  process could occur internally is hardly a leap of the imagination, is not more silly, and has, in fact been proven in many, many diseases.  I am working on a blurb on the evidence for an autoimmune process in the development of Mulitple Sclerosis.  The data also looks very strong that an infectious process or trigger and a genetic and probably an environmental factor is also involved.

ALERT - passed

I have no comment at all on the Candida test, nor the others.

I would love to see your neurologist and the LLMD working together to determine what your optimal course would be.  Let me know if I answered your question.  The most basic question I won't be able to answer, but will have to be determined by your physicians.

Best wishes, Quix

[monotreme]

Rob,  A  daughter of someone I work with has a very bad case of Lyme which left her in a wheelchair.  However, he took her to Lyme Connecticut where there is a center that has advanced treatment for Lyme.  They may be able to clarify your diagnosis.  They are research oriented and have access to all the latest drugs for Lyme.  It is conventional medicine.  Do you want me to try and get the name of the center for you? ,,,,,Craig.  By the way, his daughter is now walking.

[grannyhotwheels]

I'm very sorry that you are having to go through this, it must be so hard.  I hope you are feeling well and not having alot of pain.

I'm very anxious to know what the doctors decide.  Can you be treated for lyme and MS at the same time?  If not which do you choose first, because if you have progressive MS you would want to start treatment as soon as you can?  It all sounds very confusing to me.

I had a western blot lyme test when I was at the Mayo Clinic and it came back negative.  Do they use the Igenex labs for there test or does anyone know?  If they did'nt, should I be re-tested?

I'll be praying that everything goes well for you and please keep us informed.

Carol

[Momzilla]

Hi, Rob!

I want to chime in here and wish you luck and good health.  It seems to me you are doing everything you can to make sure you get the proper diagnosis/diagnoses so that you can begin treatment to stop the progression of your symptoms.  Very smart.  

When we had the debate before on the forum about Lyme, I did a lot of reading and, conventional medicine tells us that Lyme disease is over diagnosed.  Neuro Lyme is a mimic of MS, which, according to your LP results, you most certainly have.  I think that these so-called "LLMDs" have created a niche for themselves, but I'm not quite sure what it is.  All neurologists are Lyme literate.  My neurologist ruled out Lyme.

I have a friend who was "bitten" or whatever, by a deer tic, (it was on his forearm) and went to the doctor right away.  He was started on antibiotics.  He developed the bulls eye rash and everything.  Had a bit of fatigue and mild arthritis.  But he never went into the Neuro Lyme or anything because he was on antibiotics right away.  His PCP was "Lyme literate."  I'm from Michigan.  I doubt he had his labs checked by Igenex or whomever the Magic Lab is.  It's so interesting that they only send reports to the doctor, not the patient.  I wonder why that is.  If you wrote to request it, they should by law give it to you.

Quix makes so much sense.  She's got the medical knowledge that most of us lack.  All the training that and education that puts things into perspective like we can't.

Anyway, we are here for you, Rob.  I am sorry you are struggling so with your diagnosis.  I hope you feel well.  

Peace,

Zilla*

[savagek]

Quix,

To answer your LP question, I went over the papers and noted the following -

The LP paper work states: CSF is positive for four or more obligoclonal bands. Since these bands are not seen in the corresponding serum, it is supportive evidence for mutiple sclerosis.
Also, the following item was circled on the Cerebral Spinal Fluid Studies sheet:
the Synthesis Rate result was 10.71 and the reference range was (< 8.01)
Also circled on a separate sheet was the Myelin Basic Protien CSF: 7.5 ng/ml (<3.0)

Also, you mentioned the infectious agent Human Herpes virus -6, which the Lyme Doctor did this test on me and said it was I think for the brain and it could be causing my problems. I have not heard the results for this as I gave blood for this before the IgeneX results came in. The only other thing this doctor talked about was a heavy metals test which he has not done yet. I do not know if he will still do it now knowing the Lyme results.

NOTE: the Lyme Doctor took additional blood and urine at my first appointment for tests which he said -
Candida which was 185 he said it should be less than 100 and he gave me Nystatin Oral Tablets which I have been taking.
CD57 test - 156 he said was good.
Blood Sugar, Insulin - 23.9 he said a little high.
Bad Cholesterol - 138 he said was OK.
Testosterone - 250 he said it should be above 300.
Sinus common allergy test - Negative

Any information that is of interest, that I can supply you from either doctor, please just let me know as I have all my tests/records/reports from the Neurologists that I would be more than happy to share with you if you would like.

Please let me know and Thanks again for all your help, I really appreciate it!!!!!!!

Rob

[Quixotic1]

Hi, Rob,

Personally, and due to my increased reading on Lyme, I believe that Lyme is a great mimic of MS.  I do not buy into the threory that all MS is actually Lyme.  My increased reading into both the established medical literature and the cites from the Lyme websites have strengthen this view.  I also am very open to the idea that Lyme and OTHER infectious agents (specifically EBV, for which there is strong indirect evidence, Human Herpes virus -6, and Chlamydia pnuemoniae) may trigger an an immune reaction that leads to the disease we call MS.

A faction of the Lyme people will jump to tell you that the Lyme spirochete has been found at autopsy in the plaques of brain lesions of people diagnosed with MS.  This is true, but there have been many subsequent attempts to reproduce this finding and they have not been able to show that this is true with any impressive frequency.  Most have not found it at all.  This tells me that a certain number of people with neurologic Lyme Disease have been misdiagnosed.  That is no great surprise and is the reason that part of the work up (and in the formal international diagnostic criteria for MS) that "all better answers for the neurologic problems and lesions be ruled out."

A "clinical diagnosis" is one that is made on the weight of the patient's history and the results of the physical exam alone.  Lyme is indeed very good at evading attempts to diagnose and find it directly.  It is very "fastidious" meaning it requires extremely exact and stable conditions to survive with attempts to culture it.  Some of the Lyme people say that even completely negative test results should not dissuade a doctor from an empiric trial of meds.  The list of symptoms that are said to be common in Lyme is twice the length of my arm, and the more radical of the Lyme people claim that it infects close to half a million people a year in the US alone.  So that anyone with any sort of neurologic symptoms that are not clearly identifiable apparently should get a minimum 6 months of empiric therapy - no matter what any testing shows.

The problem with this is that not all Lyme responds to the same antibiotics nor the same combination of antibiotics.  Also, on the Lyme sites, the length of time needed to determine the likelihood of improvement is in hot debate, though I believe 6 months would be accepted by most.  But, if there is no improvement in 6 months, what then?  Another trial of another antibiotic?  The ILADS site recommends up to 4 years of treatment or until symptom free.  If the lesions on MRI are scars, these will not heal, (and if the spirochete has caused other nerve death)   But, that is an ideological question and not what you asked.

As for the spinal fluid testing for Lyme.  In your case where your evidence of CNS damage is so strong, it should be considered.  Previously on this board, someone from the Lyme group stated that looking for the bands or evidence of Lyme in the spinal fluid was "a waste of time" and any good Lyme doctor knew it.  My reading of the scientific Lyme literature read a little different.  Oligoclonal bands specific to the Lyme organism can statistically be found in the CSF in about 12% of confirmed Lyme cases.  Well this is about 1 in 8.  So it is harder to identify this way, and you could argue whether it is worth doing an LP for.  I would discuss it further with the neurologist.  If he really wants to do another request that it be done in a radiology department under fluoroscopy guidance.  This really, really minimizes the trauma  I don't remember.  Did you have oligoclonal bands on the first LP?   If not, it is doubtful that a second LP will reveal them..

Which disease do you have?  If the result of the Igenex test is true, I would say you found an MS mimic and should treat for Lyme.  If you have not improved significantly in some length of time - I don't know 6 months to a year - or if you continue to have progression of disability - then a reevaluation should be done. Sometime midway along, you could repeat the MRI to make sure that the "lesion burden" is stable or decreasing.  I can't answer whether you could have both diseases.  I certainly don't see why not.  People have co-existing conditions all the time. Doctors practicing in Africa used to say (this was before the HIV horror) that all patients had tuberculosis, malaria and parasites.  Then you had to figure out what their problem was on top of those givens.  But, to keep the question clearest, it would be best to treat for one to begin with.  Especially one that is treatable and to which you should see some measurable improvement.

I would recommend that the new neurologist request the Igenex result for you, so you have confirmation that it is a true result.  Would a doctor fabricate lab results?  The answer is yes, it happens.  More than one medical license has been lost over this very thing.  Charlatans exist in every field of human enterprise.

I hope this is useful.  Quix

[savagek]

I did not use a recorder until I seen the Lyme Literate Doctor who recommended it. I thought to myself "Man, I should have been doing this all along".

From what you said it probably wont go over to well with all doctors, but maybe I could hide it though LOL!

Thanks,

Rob

[savagek]

To clarify -

My Neurologist did not recommend the Lyme test, my family doctor back in Mass. said to make sure they rule out Lyme if I was diagnosed with MS. I asked my Neurologist what tests were done to rule out Lyme and he siad none, he then had me do an antibodies test at the hospital which he said was negative. I then was convinced I had MS, until I talked with the Michigan Lyme Disease Assoiciation which told me the antibodies test was inconclusive and cannot be performed while I was on IV steroids, they also told me about the Lyme Literate Doctor and said that was the best way to rule out Lyme. I then got a second opinion from another Neurologist who agreed with the MS diagnosis and agreed that I need to rule out Lyme. He said he rules out Lyme by doing a test using the spinal fluid, which I already did (lumbar puncture) with the previous Neurologist in which he did not perform this Lyme test. He openly said he knew nothing about Lyme and that I could see a Lyme Literate Doctor and he refered me to one. As I was very reluctant to do this lumbar puncture again due to horrible problems the first time, I seen the Lyme Literate Doctor to rule out Lyme and now I have the positive Western Blot IGM and IGG test results.

I guess now I am wondering - Do I have MS and/or Lyme??? and what is causing my symptoms??? Do I treat both and/or which one??? as my original thinking was it was either one or the other but at this point I am in question but have always thought through all of this that they mimic each other.

Should I get another Lumbar Puncture and get this other lyme test???

What about Lyme is a clinical diagnosis first???

Please let me know what you think at this point please.

Thanks,

Rob

[tory2457]

IGeneX will only release test results to a doctor...

You can however get your results from the ordering doctor. They are your results.

I'm very impressed that your neurologist recommended you get tested for Lyme Disease. Glad you have answers.

Remember Rob, even with test results aside, Lyme is a clinical diagnosis first.

[LLWB]

Your dr actually lets you use your recorder? I asked my internal medicine specialist once to record my visit, and she absolutly refused! Said if I didn't turn it off she was leaving. And put in my patient notes I was offensive, and it was all in my head.Needless to say, she is no longer my PCP. Good for you! And good luck with treatment.