The Start Of Copaxone

[MissKatie]

I was on copaxone for over 3 years and liked it, but the nearly $700/month co-pay was killing me. For most of the time it was working for me with no new lesions. I think I began worrying about the cost and it quit working! It did not burn, give me welts, and flu-like symptoms like rebif did. I have just started tecfidera, and, luckily, I am tolerating it much better than most people. I would like to know more about LDN. Did your neurologist prescribe that? It sounds like a wonder drug!

[xMatter]

LDN information is abundant on the web. My PCP would not prescribe and my Neuro would prescribe ONLY if other FDA drugs did not work. She also said she would prescribe to take side by side with Rebif, but from what I read, LDN and Rebif should NEVER be taking together. I am NOT a conspiracy theorist by any means, but I believe she would NOT prescribe because there is no money in it. I pay $99 for a 90 day with NO insurance involved. I found a doctor that does phone consults and costs less than $10 bucks a minute to speak to. Just spoke with him last week and cost $38 and i am anxiously awaiting delivery. I can say that LDN, after 4 months) is showing some promise. I have my second set of MRIs coming next week and I am curious to see results. I have not taking a single FDA drug and I am about to be discharge by my Neuro. I do recommend LDN especially for fatigue. Do yourself some research and if you think it might good, find a doctor. If you PM me, I can give you a facts sheet about what LDN should and should NOT be taken with. Good luck!

[bartman]

With all do respect to your PCP, he is clueless about Lyme and the testing. The 23 band is considered a no-brainer. You are blessed to have a 23 band as it is borrelia specific. HAVING THE 23 BAND IS BEING LIT UP when it comes to lyme and is enough to treat clinically, your doctor is afraid like most doctors! You are best to find a LLMD quickly as to take the path of MS and be wrong is much worse than taking the path of Lyme and co-infections and being wrong, especially when you have a 23 band already. Was it a WB IGM or IGG? Do you have it in your hands? I have heard many many stories of people being positive and still not getting the treatment needed. Did your PCP test for co-infections? The sicker a person is the harder it is to test for antibodies especially if prior use of steroids. It is harder for your body to produce antibodies due to the immunosuppresion of the steroids and perhaps even the infections themselves.

This is serious stuff, an LLMD recommended via ILADS is what you need.

[xMatter]

Results print says:

Lyme Antibody IGG Western Blot Inte

P23 AB Present!
P41 AB Present!

Not sure what the AB means but the paperwork says p23=OSPC and p41=flagellin are criteria for positively. Is my p23 the same as this p23?

Another paper says LYME Total AB Screen Result=0.60

I was tested back in September 2012, given Doxy in January 2013 (only because I requested it) and tested again in April. Both tests came back the same. Steroids occured December 11th, 2012, so after first test but before second test. He did not tests for co-infections. He pretty much went on the back burner because I was given a Neuro. I have a LLMD apt on the 29th and we shall see what he thinks. I have done alot more research and I know band 23 belongs to the Bb family. But is band specific to LYME bacteria or just the Bb family? Also, does it matter which test I have IGG or IGM?

[bartman]

Does it matter which test IGG or IGM? Yes and No- the testing is inaccurate. However, IGM would signify an active infection and would require 2 bands to be considered CDC positive. IGG would indicate a past infection and requires 5 bands to be considered CDC positive. Most doctors give you both the IGM and the IGG at the same time. Neither are accurate and there is much controversy about these tests.

Yes, your P23 is present. This protein is OuterSurface protein C which is specific to Lyme. Bb stands for Borrelia Burgdorferi aka Lyme Disease(named for Willy Burgdorferi who discovered it in 1982). I believe 23 is specific to Lyme. The 41 is specific to Flagella which part of spirochetes. There are other spirochetes such as Syphilis. So 23 is specific to Lyme, 41 is specific to a bacteria with flagella (which could be others but which also could be lyme).

I hope this helps, the 23 is enough for most LLMD doctors to treat. As you treat more bands come out because you start to begin to make antibodies again. I feel better knowing you have an appt on the 29th.

[xMatter]

Since the weird bald spot on my scalp happened in April 2012 and I was not tested until late September, would the IGG (no active or old infection) test p23 still as Lyme specific? On my results sheet for IGM it simply negative, there was no breakdown like the IGG. I wish I could send a photo of the 2 results sheet for better explanation.

[bartman]

Which lab did the test? In regards to IGM or IGG it doesn't matter there is much debate about this. A 23 on either is specific for Lyme. I have never seen an IGM WB without the listed bands. Stony Brook lab is considered a good lab to test with. But you gotta have the right doctor order the right tests.

[xMatter]

Get a copy of the WB. Get the mino if you can but don't panic if you start taking it and feel bad. Lesions don't mean MS. Something causes lesions and lesions can be caused from infections.

Learn about the wheldon protocol also- google it and do it. You need multiple antibiotics to beat it. I hope I was helpful. good luck and wishing you improved health.

So I requested my results be mailed to me:
Remember, bald spot on scalp April 2012 and first symptoms September 2012

I am only listing the positives.

FROM PCP:

09/26/2012

IGG: P23AB & P41AB

IGM: P23AB

11/128/2012

IGG: P41AB

IGM: P23AB

06/06/2013

IGG: nothing

IGM: nothing

All tests were done from same lab. Any thoughts on these results and the disappearance of bands?

[bartman]

Pretty interesting nothing on the last test. But that's why you can't trust the test and you need a clinical examination from a knowledgeable doctor. This is where you have to understand the actual test and the reason many use specialty labs that report the entire blot. I am sending you a PM with a good read on the testing and the criticism.

[xMatter]

Thank you! It really isn't all that strange that nothing showed in the last test. From what read it is quite common and the fact that I have been taking NAC as a first line defense may have helped.

[xMatter]

That was a very interesting article. I would if anything more recent since it was dated from 1994. I appreciate all your help.

[candycoffey]

I was on Copaxone for two years and have recently switched to Tecfidera after giving Avonex a brief try. The only side effect I experienced from Copaxone was bruising at the injection site. The decision was made to change because it was not effective at stopping the lesions nor did it really provide any symptom relief. I've had 3 relapses while taking Copaxone, the most recent one led to the entire right side of my body going numb. Unfortunately I did not have much success with it