Frustration MS/Lyme Please Help

[savagek]

I hope everybody is having a good year and is doing well. I have been on my own for some time with much determination to work through my issues but I have not had a lot of luck and I realized I received most of my real help here. So I am back to humbly ask for your help and advice.

I am very frustrated and still unsure if I have MS or Lyme or both or what is best to do or treat at this point. I really do not know whom to trust and I am very exhausted from all of my checking and research, as I do not have the knowledge and perception for all of this. I just do not know, and I feel I am too critical in that I want a distinction between the two or clear route of action.

I really need some advice or any information that can help me answer some questions as this will help me a lot.

Some of you may remember me but if not here is a summary before I ask any questions. Sorry for the long post but please read. Thanks!

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3/8/07 Symptoms started, got some numb like feeling in tongue, lip, chin, then got numbness in my hands and feet and trunk. Random changing locations of this numbness sensation in legs. Then shocking feeling down to feet and hands when bend neck - l'hermitte's sign.

6/3/07 Had first MRI and LP

6/12/07 Diagnosed with MS

6/13/07 Started IV steroid treatment per month

7/20/07 Had a Lyme Disease antibody test per Neuro that was negative

8/16/07 Had second opinion by Neuro #2 confirm diagnosis of MS

8/20/07 Had second MRI

8/2/07 Last IV steroid treatment. Did not do any steroids since.

8/27/07 had blood drawn for western blot lyme test by Lyme Literate Doctor.

9/10/07 Lyme Disease western blot test results from iGeneX - IGM positive, IGG negative per iGeneX and CDC standards. Started Rocephin for 1 week then stopped Rocephin and started Amoxicillin and flagyl all per Lyme Literate doctor

9/20/07 Had positive HHV-6 test and was put on Valtrex all per Lyme Literate doctor

10/4/07 Went to Opthamologist due to double vision, got prizm for glasses which corrects problem. Double vision started on 9/28/07 (still have today).

11/29/07 back to Neuro #2 for opinion about all test results including Lyme western blot. He said they only check Lyme Disease with spinal fluid and recommended this test and still confirms my MS diagnosis.

12/6/07 Spinal fluid lyme test results were normal per Neuro #2.

12/13/07 Had third MRI.

12/20/07 Had complete loss of strength and movement of left hand and leg. Balance, Coordination and gait difficulty.

1/2/08  Stopped Amoxicillin and flagyl and started IV Rocephin due to hand and leg issue all per Lyme Literate doctor
.
Had IV Rocephin treatment 1/2/08,1/3/08, 1/8/08, 1/9/08, 1/10/08 and paralyses started going away. Still have balance, coordination and gait difficulty along with double vision.
I am still doing IV rocephin three times a week.

Most recently had double vision get worst to the point prizm did not work, seems to fluctuate now along with light sensitivity. My Opto wants me to see a opto neuron now.

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Questions:

1. I was on steroids at the time I had the Lyme Disease antibody test per Neuro on 7/20/07 and was told that the test is no good by the Michigan Lyme Disease Assoiciation which told me the antibodies test cannot be performed while I was on IV steroids. Can anybody help me confirm this?

2. I was off steroids for 25 days before having blood drawn for the Lyme Disease western blot test on 8/27/07. As I have heard of false positives with Lyme tests, does anyone know if this timeline with steroids could affect this test?

3. I was on antibiotics at the time I had the LP Lyme disease test per Neuro on 12/6/07 and I read that you must be off antibiotics for at least 2 weeks before this test, as it will mask the results. Can anybody help me confirm this?

4. As I had my worst symptoms through my Lyme treatment, then was switched to IV Rocephin and had my symptoms decrease after just 5 treatments. Can Rocephin help with these symptoms if it was in fact MS or would this point to more of a Lyme problem?

Thanks for any help,

Rob

[monotreme]

First, I would appreciate what results on MRI and LP you had that confirmed the MS diagnosis??

Concerning the Lyme disease, I think you should make note of all the negative Lyme tests you have had.  yes, you were on steroids and once on antibiotics.  but don't the "Lyme Literate" doctors tell people how strong and elusive the Lyme spirochete is?  Why, then, could it be so suppressed by some steroids and amoxicillin??  I can guarantee that if you were not on steroids or amoxicillin and had a negative Western Blot or Lyme antibody test, the Lyme Literate doctor would have had some reason why you still have a Lyme diagnosis and still need antibiotics.  I have never seen such a group of physicians who can tell people they have Lyme even though they have negative Lyme tests.  Since Lyme is a rampant disease in our state, there are people who get neurological symptoms and are told by Lyme Literate doctors that they have Lyme even when they have negative Western Blot tests, and they are not on steroids or antibiotics when tested.  

Did you give up sugar when you started treatment??  Because the Lyme docs tell patients that sugar feeds the Lyme disease and you must go off sugar and processed foods as soon as you start treatment.

I have talked to a friend who is a pharmacist and he said that IV Rocephin will get rid of Lyme in  two weeks,  Maybe you should continue if you are feeling better.

Back in September when you were on this forum, my husband sent you a name of a very good neurologist in Connecticut who is an expert on Lyme.  He is world renowned.  He has published extensively and is well respected in the neurology field.  Did you ever contact him?  If you want a trusted diagnosis, contact a neurologist who knows Lyme.  Check the credentials of the Lyme Literate doctor you are getting treated by now.

I hope you find answers.  It is unfortunate that you have not been helped by the Lyme Literate doctors since you were last on this forum.   I know the last time you were on this forum the members tried to help you through a MS diagnosis.  I also know how much anyone would rather be helped through a Lyme diagnosis instead.  I truly hope you will find peace with the eventual correct diagnosis, whatever that may be.

Good Luck
Elaine

[Quixotic1]

I'm baffled by the statement that steroids will change an antibody determination.  They most certainly won't.  Antibodies last in the body about 2 months before they degrade and disappear.  Steroid may shut down new expression of more antibodies , but the one's already made will still be there.

Steroids do affect some of the body's "response" to testing when the testing is looking for specific response.  Examples would be the PPD skin test for tuberculosis.  That test depends on a cellular immune response and is suppressed by steroids.  Or allergy skin testing is also suppressed by steroids.  But, the allergy antibodies which would cause the skin reactions are still there they just can't work, BUT THEY COULD BE FOUND in the blood.

As the number of organisms fall, or as they assume their cystic forms (like stealth cloaking) where the immune system can't see them, the antibody production may fall and make the test falsely negative.  Supposedly steroids act to make the cyst forms return to their active infection forms.

I've tried reading the current literature and it is really separated into two camps which don't accept much of what the other guys say.  I can't figure much of it out.

Yes, some antibiotics can have an anti inflammatory effect on MS.  I do not know if Rocephin is one.  I really wish you had gotten IV therapy earlier.  I\

The ILADS site even states that loss of motor skills is unusual in Lyme.  It is not listed in their long list of things to wach out for.  And then there is the whole controversy about whether lingering symptoms is "Chronic Lyme" (this is disputed by some good minds) or Post-Treatment Lyme Syndrome" which may be a lingering syndrome of immune dysregulation in the absence of active infection.

I, too, recommend you see the Lyme expert in Connecticut.

There is a test called PCR (polymerase chain reaction) that looks for fragments of Lyme DNA in the blood and in the CSF and in the urine.  Now this test would definitely show the existence of Lyme in the body.  The organisms shed DNA as they finish their life cycle and die.  It is this test that they use to see if the therapy has erradicated Lyme from the body.

You have had 5 months of treatment.  What does your MRI look like now?  Is it improved?  My vote would be on asking about the PCR testing for tell-tale evidence of the spirochete being in your body NOW.

What kind of HH6 test did you have?  About 95% of all (ALL) people have antibodies to HH6.  It is Ubiquitous.  How did they prove it was active?

I don't envy your dilemma.  Will your Neuro treat MS while you are on all the antibiotics?  Is he accepting of the treatment by LLD?

Good luck.

Quix

[savagek]

Hi Elaine,

FYI - Here is the link from my first two MRI reports as I posted before and my third one was only for Brain and I have not posted but it shows new lesions. http://www.medhelp.org/posts/show/299734

I have 2 Neuro diagnosis as active MS which satifies me and I can accept that if needed.

For ruling out the Lyme which I personally must do, I am not satified as it appears I have had questionable tests when I had 3 different kinds of test by 3 different Doctors and I cannot get confirmation or accept any of the results quite frankly at this point.

My concern is if I really do have Lyme and is it causing my peoblems as there is really no 1 standard result to go by. I did the Lyme treatment and I still am, but I must say I have declined most of all during this treatment as you can see from notes above. Also, I have done all kinds of diet changes including the no sugar as you mentioned.

I forgot all about the Neuro "Amiram Katz" your husband sent me as he was in Connecticut and I am in Michigan. But it would be great if I could ask him my questions as I do need some respectable Neuro and Lyme Doctors to give me confirmation of the Lyme tests I already had.

I wonder if Rocephin would help someone with MS as it seems it helped me when I got my worst symptoms, but again it could just be remission.

Thanks for the help,

Rob

[savagek]

Hi Quix,

I'm baffled by ALL the statements but at least you have the potential to make sense of a lot of it. With the first Lyme antibody test which may have been correct, would be more accurate in early to recent Lyme, is this correct?

I should have insisted on IV Rocephin early on as that would explain a lot more at this point.

I like what you say about this PCR test and it is definitely a test I will have done.  Does this test differ from the Lyme test I had done?

I will post my 12/13/07 MRI report as soon as possible so you can see exactly what it says.

Not sure how they proved the HH6 was active but I will find out.

The Neuro says I do not have Lyme and he shows no interest in the western blot results as he said they only check for Lyme with CSF, but he did say before their Lyme test that they could treat both at same time. Also, I had mentioned this to the Lyme doctor about taking betaseron during treatment after these last symptoms to protect me on both sides and he said yes, but did later during my IV treatmeant talk about how there is lack of evidence that ABC drugs are affective.

Thanks for the help,

Rob

[speechgeek]

Rob

I am going through the lyme dance myself. My mother has chronic lyme that went undiagnosed for 2 years and finally a PCR urine test found the DNA. I have had all negative test results on my ELISE and Western Blot. None of which were done through IGENEX.

I unlike most I pulled a tick off me in June 2007. It left a red mark but not a bulls eye for greater than a week. I went to the doc and he said the area was just irritated.

I have had significant neurolgical involvment that started November 2007 axonal peripherial neuropathy which is typical for late stage lyme. I was unable to stand for more than 15 seconds at a time or walk signifcant distances.Fine motor involvement, balance and light sensitivity and visual invovement.  If you wish at some time I can send you my time line of symptoms.

I am currently on my second 3 week oral antibiotic 1500 mg amoxicillian per day. My PCP is trying to navigate his way the best he can while we wait for a hopkins and infectious disease referrral.I responded favorable to the first round of treatment but not 100%.

It is my understanding from reading and  from several of the docs that I have seen that antibiotics do have an anti- immflamatory affect more the doxy and the tetra  NOT so much the amox. I have read several places that you need to be off antibiotics for 30 days for a lumbar and even then the accuracy of detecting lyme is low...depending on the sources you read. My mom... normal lumbar.

MS has been thrown around and out and in and out again of the discussion ( along with ALS)

I wish that i could be more helpful.   There is so much controversy in the lyme world . Labs don't even analyze the test the same. Doctors just don't know enough about it. I live in Va. and the docs still say you can only get these tick borne illness from a deer tick. All one needs to do is spend 30 minutes on the internet to realize that's not the case. My mothers PCR DNA of her tick apparently revealed that it was tick that is in Washington state... mom lives in Va. and has never been to Washington state. So who knows

Recommendation... do the IGENEX co-infections test in additon to PCR.

I will be thinking of you and please keep me updated on your journey.

Rebeccah

[sllowe]

Hey Rob,

Glad you came back.  You are a smart person, and sound methodical, throughout this trek, however, now is where the confusion comes in.  It looks like you've gotten some really good information above to start you on your next course.  I may not have much to offer, but will add my 2 cents.  Do you still not believe the MS diagnosis? You have more, active lesions, Rob, that is clear.  Please, some of the information you were given is not so regarding the meds used for MS.

Studies have shown that people have responded to the CRAB meds.  Yes, I agree that there is a chance you will, or will not progress with or without them.  It is a tough decision.  They don't even know how they work - it's a know fact.  However, it still doesn't make it not so.  

It appears you have given the meds for lyme a fair shake.  At least from how this reads.  I think it's time, to work on accepting a few more things, and that may include that you have to come to terms with this being MS.  There are so many diseases that come from ticks, it's understandable that you exhaust that quest the best you can.  Which I think you have so far.  

But, ultimately, you have to believe in something, and decide what you'd like to do about it.  Your not doing these things to your own body, just trying to find the best course to resolve, or prolong anything further.

I'm glad you've returned, you've been through so much.  But please, I think you are a pesistant person who wants answers, as many of us are.  But, please just be sure that you don't do yourself a disjustice where acceptance is concerned.  

I'll pray you find some peace with what you have in front of you right now, and that you get a little relief so you can continue with your next phase of this.  Stay with us, and let us know how you are doing.

Be well,
SL

[savagek]

All,

I have been doubting I have Lyme Disease due to a lot of things that really dont add up with my Lyme tests.

The Lyme Disease antibody test - Results Negative, Bad test if on steroids, ???

The Lyme Disease western blot test - IGM positive, IGG negative per iGeneX and CDC standards. Lyme Doctor says: recent disease, treat. CDC says: A positive IgM test result alone is not recommended for use in determining active disease in persons with illness greater than 1 month's duration because the likelihood of a false-positive test result for a current infection is high for these persons. Serum samples from persons with disseminated or late-stage LD almost always have a strong IgG response to Borrelia burgdorferi antigens.

Spinal fluid lyme test - Results were normal.  Must be off antibiotics for at least 2 weeks before this test, ???

As you can see a lot of question marks, lot of Lyme tests, lot of money spent with no clear answer, lot of treatment time, lot of new symptoms, feeling lot worst etc.. With the western blot I looked to the CDC as their name is on the test results, maybe Im wrong, but if I do have recent disease how would this be causing my neurological problems, lesions etc... and having negative IgG. Does not add up!!!

All my Neuro tests - clear, All MRI reports (Radiologists) - clear...Two Neuro opinions same diagnosis MS - clear...

As Quix said before, some of my symtpoms and also some lesions not typical of Lyme.

Lyme Disease causing my problems ???

Just want to be clear on this, is that so much to ask, if you know what I mean. I will stop complaining as this is what I always seem to do lately.

Please let me know of anything.

Thanks everybody,

Rob

[sllowe]

Certainly, it's not too much to ask, clarity provides peace.  Just a helluva journey getting that clarity.  Just trust your next move, that's allyou can do, and do it. . .

Complain all you want, it's part of what we do w/each other a lot.

be well,
SL

[monotreme]

Rob,
  A decent physician cannot make a diagnosis or answer questions concerning your diagnosis unless you go to the doctor in person and be examined and have the doctor look at the whole picture (reports etc).

   Concerning all the money spent on the Lyme doctors, I would think it would be a good investment in travelling to Connecticut and seeing Dr. Katz.  He is also a neurology professor at Yale med school and I think he will give you more definitive answers and not try to rip you off of major medical expenses.

  You can "google" him for the phone number.
  Elaine

[lucecaboose]

1. I was on steroids at the time I had the Lyme Disease antibody test per Neuro on 7/20/07 and was told that the test is no good by the Michigan Lyme Disease Assoiciation which told me the antibodies test cannot be performed while I was on IV steroids. Can anybody help me confirm this?  

YES. Steroids, like antibiotics, interfere with the immune system forming antibodies, so the test would be inaccurate.  

2. I was off steroids for 25 days before having blood drawn for the Lyme Disease western blot test on 8/27/07. As I have heard of false positives with Lyme tests, does anyone know if this timeline with steroids could affect this test?

This one I don't know and could not find an answer.  As you know, in the Lyme community, Steroids  = Kryptonite.  But I will keep looking.

3. I was on antibiotics at the time I had the LP Lyme disease test per Neuro on 12/6/07 and I read that you must be off antibiotics for at least 2 weeks before this test, as it will mask the results. Can anybody help me confirm this?  

Absolutely.  You must be off abx at least two weeks, otherwise the test results will be inaccurate.  The first time I had an Igenex WB, my LLMD thought I had to be on abx for one month, then get my blood drawn.  Not so.  The one month would have been fine, if it had been followed by two weeks off.

4. As I had my worst symptoms through my Lyme treatment, then was switched to IV Rocephin and had my symptoms decrease after just 5 treatments. Can Rocephin help with these symptoms if it was in fact MS or would this point to more of a Lyme problem?  

If Rocephin was your first IV abx, then it points to Lyme.  If you were only getting oral abx up to this point (with worsening symptoms), then went on IV and improved almost immediately, this is actually fairly common among the most ill in the Lyme community.  IV abx are much more potent, and there are many things that can interfere with oral abx to keep them from helping you.  I am in this same situation.  I was on oral abx for two years and just kept getting worse.  Went on IV and it made all the difference.