MS or Lyme

[Katrina3310]

I was dx with ms in 2009- I decided to request having the Elisa Western Blot
My neurologist called me and said the results were ambiguous  - I have 3 -4 bands
he is going to refer me to see a inf. disease dr. - what does all of this mean

[JackieCalifornia]

Bravo, Rico!  Well said.

You're right that it can't hurt to write, and it might do some good in the way Rico indicates.

Just remember tho that it's not a direct line from Obama telling the docs to change what they do -- it's more indirect, like soooo much of Lyme.  IMO the government shouldn't be involved in our personal medical decisions at all, but since they have their big nose in the tent already, might as well use it to fight back on Lyme.

[Ricobord]

While Jackie is a absolutely correct about the IDSA not being a government organization, there is a good reason to sign the petition, along with asking everyone who knows you've been sick to sign it, too.  

The CDC and NIH back the IDSA.  Both taxpayer funded organizations only give money for studies to the same Lyme Deniers over and over. These studies do little or nothing to benefit patients (such as the recent 17 patient study that proved that people can get Lyme a second time, and the authors claimed it "proved" that there is no chronic Lyme, only subsequent infections.)

They refuse to fund studies from doctors or researchers affiliated with ILADS or who look for evidence of persistent infection after antibiotic treatment.  

Also, the CDC contributes to the problem of testing and diagnosis by using ridiculous and inconsistent surveillance methods and requirements, resulting in massive undercounting; they continue to promote incomplete and false statements about Lyme prevalence and frequency on their website; they refuse to acknowledge that they have hard evidence (since the mid 1990's) of persistent infection after a year or more of Rocephin treatment in a patient with ALS-like Lyme; and they make no effort to inform doctors that patients can test false negative on their horribly inadequate testing protocol for blood tests.

Were the CDC and NIH to do an about face and actually follow the science and the needs of the people, then the IDSA position would crumble and the Lyme Deniers would no longer have the funding to continue their campaign of denial and persecution.  Insurance companies wuld no longer be able to deny treatment.

If the CDC changed its testing protocol to catch the vast majority of cases, there wouldn't be so many cases of chronic Lyme. Doctors around the country would quickly realize that Lyme is far more prevalent and diverse in its presentation than the IDSA and CDC have been saying for decades, and there would be sweeping changes, including demands by doctors for more information on how to treat it.

I have come to the conclusion that the small group of researchers who have a stranglehold on the IDSA's Lyme dogma will never change their minds. They are too entrenched and invested in their beliefs.  No one can make the IDSA do anything.  We can only make them irrelevant by putting enormous political pressure on our elected officials to do more to protect the people.  I hate the idea of legislating specific medical things, but on this, I have changed my mind. It is our only hope.  Waiting another 30 years isn't good enough.

The CDC and NIH ultimately are accountable to the White House. If Obama or the Sec'y of Health and Human Services came out tomorrow and ordered the CDC to revise its testing protocol, start funding other Lyme aware researchers, and stop endorsing the IDSA treatment guidelines, there would be massive changes for the benefit of patients and public health.

A personal note: I complained via email to the CDC about their definition of Lyme, poor testing protocol, and the IDSA treatment guidelines, which they provide a link to and an explanation of why they believe they are the best approach to treatment.  In a reply, someone from the CDC insisted they do not endorse treatment guidelines as those are the responsibility of the various medical organizations of physicians and researchers.  I figure this person was either new and uninformed, or a complete liar.  It was like the little kid with chocolate on her face insisting she didn't eat any chocolate.

And so, my long winded diatribe concludes with, "Sign the petition!"  Many voices can make a big difference.  When the will of the people becomes clear, our elected officials will respond.

[JackieCalifornia]

It's good to speak out, but please be aware that IDSA is a private organization and has a right to state its views (however misguided), just as ILADS does.

You want to 'correct an outrageous injustice done by our government' -- but IDSA is not part of the government.  Obama and the federal and state governments do not control the IDSA and cannot force them to change their views.  It's that 1st Amendment right-to-free-speech thing.

[fourleaf150]

     A petition is currently being circulated on the internet to get President
Obama to take action to overturn the outrageous IDSA Lyme diagnosis and
treatment guidelines which have severely restricted treatment options for
patients and caused many doctors to simply refuse treatment. You can
obtain information on how to get your name added to the list at Jenna's
Lyme blog. I have no affiliation with Jenna's Lyme blogs. I am simply doing
everything in my power to correct an outrageous injustice done by our gov-
ernment. It is imperative that we get as many signatures as possible as
quickly as possible. I signed up last night and got someone at a medical
diagnostic lab this am to sign.

[illinwithoutacause]

hello,

i just had to post as so much of what you have described mirrors my own situation as far as your symptoms are concerned.  i have also had positive igenex testing and my LLMD also thinks that my condition is being exacerbated by metals & mold toxicity.  

he says treatment is a marathon not a race, so i need to be patient.  in the mean time, i am trying to keep the faith that this lyme, etc. is what's going on with me and MS is not a factor.

best of luck to you.  get thee to an LLMD!
blessings,
binx

[fjisback]

To find an LLMD (Lyme Literate Medical Doctor) or more information that could help in your diagnosis, please go to
www (dot) lymenet (dot) org and put a post under the 'Seeking a Doctor' section.

Also just wanted to chime in that there is a new definitive Lyme test that's a blood culture (which means it may take a bit to get results) developed by renowned Lyme Literate Medical Doctor.  Advanced Labs offers the test

Go to www (dot) advanced-lab (dot) com for more information.

[Ricobord]

Doctors who hold to a narrow view of Lyme and insist on CDC "positive" results before diagnosing it really don't understand the science behind the testing.  They have been told that Lyme is rare and testing produces lots of false positives, but that is the exact opposite of reality.  The CDC estimates there are another 3-12 cases of Lyme for each case reported, which would realistically put the total at about 300,000 cases PER YEAR. There are 300K cases of MS in the country in TOTAL.  And yet doctors think MS is fairly common and Lyme is rare.

Igenex does more advanced testing that finds cases other labs miss. Usually patients don't spring for IgeneX testing until after they have tested negative elsewhere.  You would have to be fairly convinced that you have it before shelling out the money for tests.  It makes sense that they show more positives than other labs for that reason. And no, not everybody tests positive there.  That is propaganda coming from those who trivialize Lyme.

The CDC criteria was designed to produce a bare minimum of false positives.  They intentionally left out bands 31 and 34, the two most specific Lyme antibodies there are, because there was a vaccine in the works that would trigger positives on these two bands.  They wanted an interpretation of the tests for surveillance purposes (for watching trends, not for diagnosing) that would exclude vaccinated patients who didn't actually have Lyme.  To exclude those from a diagnosis makes no sense.

There are quite a few Lyme specific bands that can show up on the IgM or IgG WB that show a Lyme infection, even when the CDC says "negative." This has been devastating for patients who go undiagnosed and get very sick.

This website has an over view of the bands and what they mean.  
https://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist

You can also google "Tom Grier Lyme" for articles explaining the reality of Lyme antibody testing.

I find it interesting that of all the stories of patients telling about doctors who ridicule IgeneX, I have never heard a story of such doctor having a meaningful alternative diagnosis to offer, except perhaps Fibromyalgia or Chronic Fatige/ME, for which there are no confirmatory tests or cure.

[Melissa072]

Hi
Saw you mentioned what some bands were on another members test.
I'm posting up what I was positive in, if you know what any  of mine mean could you let me know.....
I got igenex igm positive with the bands 18kDa  ++
                                                           34kDa  +
                                                            41kDa  +
                                                            58kDa ++
                                                            66kDa  +
                                                 83-93               IND  (whatever this is)
I was CDC negative
On my igg I only got a 39kDa  IND
                                41kDa  +
After 12 months of being on orals I still have symptons that come and go, and head dizziness which is almost permanent, but not so noticable when I was on the meds.  Have been off them for about 6 weeks now.
My daughter experienced optic neuritis symptons when she was 8, and has had one christmas 6 weeks of it again, incontinence, tingling, today she still gets tingling, and eye pain on and off which to me is more ms like.
Very frustrating, although as I tested positive we are about to get her tested at igenex too, but I am concerned about all the stuff I read on the net regarding false positives and everyone testing positive at igenex.
What are your thoughts??
And if she does test positive, thats the 2 of us then with a positive lyme result, so wouldn't  that lessen us having ms then???

[Melissa072]

Hi
How did u get on???
Do u have a proper diagnosis yet??
I'm in the same boat, my symptons are very much like relapsing/remitting ms, and a neuro tested me in 2007 but all mri's and LP were normal.
I tested  last year for lyme and bartonella.
Ms is always at the back of my mind though, also too because my daughter has had neuro symptons too such as tingling, incontinence, optic neuritis symptons and forgetfullness.
We are about to get her tested for lyme too.
Were your symptons relapsing /remitting???

[JackieCalifornia]

Go to:

Contact (at) ilads (dot) org (I think it's org ... Spacing out here)

And tell them where you are more specifically than the NE. They can send you contact info for lyme specialists in your area. If that doesn't work, come back to us, ok?  Take care.

[Katrina3310]

does anyone have the name of dr.'s for lyme in the ne area
thanks

[Ricobord]

I am so sorry to hear you've had symptoms for years. Wise of you to request testing!  Ask your neuro to fax or send you a copy of your lab report so you can see it for yourself.  If you have 3-4 bands positive, and at least 2 of them are Lyme specific, then for sure you have Lyme.  Some Lyme docs will diagnose on symptoms and history with no or one band and elimination of other possibilities.  They call that a clinical diagnosis.

Note: Lyme docs rarely order LPs, as only about 10% of patients who have then test positive. Unfortunately, my negative CSF test was used to deny me a diagnosis.

If you don't see the exact bands on your results that are positive, you can request them. You just call the lab and ask them to send the complete results with the bands to your doctor, and then you can get them from your doc. Then you can look up to see if they are Lyme specific.  

My Lyme resembled MS. I tested negative on the first screening test I took, as well as on a spinal fluid test. Multiple doctors told me I did not have Lyme because of this.  But when I got tested at IGeneX, a specialty lab, they reported that I had 2 Lyme specific bands on my IgM Western Blot, even though I was "CDC negative." I just barely recorded as 'equivocal' on the screening test at IGeneX.  No ID doc would ever have diagnosed me with Lyme with those test results.

I found an LLMD (Lyme Literate Medical Doctor), as we patients call them. They are associated with ILADS and are familiar with the disease.  However, ID docs are very strict about Lyme.  They believe only in a strict test interpretation and a month of treatment, regardless of symptoms, which makes no sense to me.  If you have had Lyme for 3-4 years, a month is unlikely to cure you. An ID doc will then either say you never had Lyme or you have "post Lyme syndrome" and send you home.  My doc just told me today to expect 15 months of treatment, possibly more if another coinfection shows up, such as mycoplasma or chlamydia pneumonia.

Sorry I am rambling on here...  One more thought: you can Google "Tom Grier Lyme". He is a scientist who had Lyme and coinfections for 13  years. He has written some very informative articles on testing.

[mojogal]

Ditto for what Jackie said., Lyme is the illness that is the great imitator, I have been told I have Lupus, vasculitis, and other things when in reality it is Lyme. I have lesions on my brain but was lucky to have a radiologist who recognized the difference between Lyme and MS and it was purely by chance. I had yet to see my LLMD at the time. The Lyme doctor can set you straight. If it is indeed Lyme, then it is a totally different treatment. Good luck.

[JackieCalifornia]

Welcome--sorry to hear what you have been through. I would go to a lyme specialist rather than an infectious disease (ID) doc.  ID docs as a group do not understand lyme and very well could keep telling you that you have MS. They just have a blind spot when it comes to lyme. If you need help finding a lyme specialist, let us know. Also email to contact (at) ilads (dot) org for a referral. Ilads is the main voluntary group for docs who understand lyme. Let us know what you do and how it goes, okay?  I went thru 20 docs before I found a lyme doc and finally was properly diagnosed and treated. So hang in there --