The Start Of Copaxone

[xMatter]

Diagnosed in December 2012, I am finally starting a FDA approved treatment. I am currenting taking LDN and following the MCT Keto Diet. My main reason for even starting Copaxone is because of all the research I found that it can not only reduced flare ups, but also relieve symptoms. I am looking forward to the possibility of symptom relief since most symptoms have remained since diagnosis, even after 2 rounds of IV steroids. Still have the sporadic blurred vision (especially when walking fast or out in the heat) and numbness in my hands. My main symptoms were complete sensory numbness (not paralysis) from the chest down. I plan to continue the diet and LDN (since they can prescribe to reduced Copaxone side effects anyway) and see how this goes. I am going into this treatment with the mindset of giving it a trial run for at least a year and see if I notice I difference. Fingers crossed I am one of the few that reap the benefits within the 6 month sweet spot. Any feedback, positive or negative would be appreciated.

[Ladymac]

Hi There,

Did you consider taking Tecfidera, a pill twice a day rather than the shot with Copaxone? I have been on Copaxone twice.

The benefits of Tecfidera in reducing flareups, relieving symptoms and the quality of life are remarkable.

Blessings,

[xMatter]

I have researched all my options before reaching a final decision. Copaxone seemed to have the least effects on organs and the least monitoring with blood tests. Tecfidera is also BG-12 correct? Not that this matters, but there was an article out there that it costs the pharm company .0007 per year to treat a single patient with Tecfidera. Did you have good results with symptom relief on it? Why were you one Copaxone TWICE?

[Ladymac]

xMatter,

Don't believe everything you read, the articles are referring to a raw form of part of the chemical compound. Clinical Trials cost a lot of money and the research and development.

I am doing fantastic on Tecfidera (BG-12). While on Copaxone 2 yrs I wasn't gaining as many new lesions, I was exacerbating. Went on Avonex 1 1/2 yrs and gained 5 lesions, less exacerbations...so back on copaxone but couldn't take the burning injection sites and welts after another yr and a half came off all meds and went on an IV Solumedrol Protocol every 4 weeks to keep the inflammation down in my brain while we waited for BG-12 to come out of Clinical Trials and gain FDA approval.

[xMatter]

So how long have you been on BG-12?
Any new lesions and exacerbations since the start?
Do you genuinely feel BG-12 is the right drug for you?

I am currently waiting for the nurse to appear at house for a home treatment of Copaxone. Another main reason I chose it was because I really want to continue taking LDN and some drugs like Rebif are not recommended to be taken with LDN.

[bartman]

If you choose copaxone then you might as well add minocycline as together it is a very effective combo. And you will also be treating a possible infection such as lyme and coinfections (bartonella and babesia). Are you familiar with Lyme and the controversy surrounding it.
From the nytimes today.

http://well.blogs.nytimes.com/2013/07/0 ... ref=health

You have to cover yourself in case you have the infections, which you probably do.

[xMatter]

I am all to familiar with Lyme. I had a weird bald spot on my scalp which was perfectly round and they sent me to a surgeon who said it was NOT a scalp cyst. I have since been tested for Lyme twice and came back with bands 23 and 41. The bald spot occurred in April 2012 and my first symptoms were September. 2 doctors and a surgeon could not explain a perfectly round bald spot. I had it for 2 months. Clear liquid came out when I picked at it, but hair grew back the week after the surgeon sliced it open. Weird, weird, weird! And I'm from PA and have ticks in my back yard. My PCP gave me 3 weeks of Doxy, do you think I should start on Mino???? It was always on my mind, and I currently take NAC.

[Ladymac]

So how long have you been on BG-12?
Any new lesions and exacerbations since the start?
Do you genuinely feel BG-12 is the right drug for you?

I am currently waiting for the nurse to appear at house for a home treatment of Copaxone. Another main reason I chose it was because I really want to continue taking LDN and some drugs like Rebif are not recommended to be taken with LDN.

I am now on month 3 of BG-12. No exacerbations since start, my MRI is in August. Even if I had an exacerbation since starting any MED, you have to be on the med for a while before enough time and medication can be at the theraputic level. I believe I read somewhere 3 months for Tecfidera, I will look it up.

I have some friends that started a few weeks behind me, all of us started noticing changes after the first month going forward. The most quantitative jump for me has been in the past 2 - 3 weeks. I am starting to feel like the old me. It is totally awesome. I no longer have side effects, however I make sure I keep the timing of my meals and medications as part of my daily regimine.

I have no knowledge about LDN, sorry.

Good Luck,

[bartman]

Ummmm. You obviously don't know much about Lyme if you are here. You need to see a LLMD if you are serious about getting better. A negative Lyme test does not mean you do not have it!!! Both bands that you mention are specific to the spirochete and Band 23 is specific to Lyme. You live in PA. You have ticks in your backyard.

You are not that familiar with Lyme if you haven't tested for Bartonella and Babesia. These infections are more difficult to test for than lyme so you have to treat all of them regardless of testing. If I were you I would leave this forum and go to a Lyme forum because it is way more likely that is your problem. I would get much more familiar than you think you are, learn about the controversy and find a real good Lyme doctor (ILADS recommended). NOW!!!! The steroids have made you were and a more difficult to treat patient, do not do other immunosuppresive meds until seeing a lyme dr. I would absolutely do minocycline, (or doxy) if your doctor will prescribe until you see a Lyme dr. Expect a herxheimer reaction and it will take many many months to get better with multiple antibiotic combinations. I would also check out the antibiotic cap section on this site for cpn. they use many of the same antibiotics. You have alot to learn to become familiar with Lyme. I want you to get better!

This is an epidemic not getting the attention it should.

[xMatter]

bartman: what makes you think I have Lyme? The bald spot? The bands? The symptoms? My location? I appreciate everything you wrote and will use now by finding a LLMD. I had lesions, spinal tap and all are consistent with why they call MS. I was very addiment that I had Lyme and will continue to be tested. Even want to send to ignex or whatever is. They also tested my spinal fluid for Lyme PCR which didn't show. Thoughts?

[bartman]

location- check, bands- check, symptoms-check, lesions- check, the fact that you were treated with 3 weeks of doxy which means your dr. may have thought so too-check. Your dr. treated you with the standard IDSA treatment for lyme. A 23+ and 41+ band on an IGM Western Blot is CDC positive- if I were you I would call your dr. and physically get a copy of the blood tests that he took. An IGG Western Blot would need 5 positive bands to be CDC positive. Which test did you have? Did you have the ELISA test first? then the WB?, then the PCR? And the fact that you did steroids and are worse.

Do you know about the coinfections? Personally, I believe Bartonella is the culprit. When I speak of Lyme, I really mean the 3 B's ...Borrelia, Baronella & Babesia. The symptoms of MS are the same as the symptoms of these infections and lesions can be seen in both.

This is all based on 12 years of misdiagnosed MS for a close cousin who almost lost his life. He then tested for 5 infections and has been treating with antibiotics for 4 years and improved dramatically! It wasn't easy and it took a long while to see improvement.

make sure it is an ILADS dr.

[xMatter]

Thank you for your reply. I was tested twice months apart with WB from PCP. After MRI, neuro tested PCR with spinal fluid, all fine there. I have been reading about the 3b's and I am currently trying to find a LLMD or ILAD. I am thinking of going to my PCP and getting Minocycline since the neuro won't treat for anything but MS. Sucks to self diagnos, but I truly believe I need to at this point. I have MRIs at the end of this month. Since I have not taken MS drugs and only LDN, vitamins and diet change, I will see if more lesions are there. They say most MS patients have lesions/relapses occur twice a year, so in theory, I should be due since its been 8 months since the initial freight train attack.

[bartman]

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.

[xMatter]

Thank you very much bartman. I took your advice and I am in the process of finding a LLMD. I will hold off on Copaxone for a bit (which it what I wanted anyway) until I can diagnose myself… apparently. I know replies on these kind of sites are not actual medical advice, but you swayed me the way I was an still am leaning. Much appreciated!!!!

I have come across that protocol before and I am taking NAC currently. If I follow that protocol, do you think that will help with Lyme? Because I did see Minocycline in it.

[xMatter]

location- check, bands- check, symptoms-check, lesions- check, the fact that you were treated with 3 weeks of doxy which means your dr. may have thought so too-check. Your dr. treated you with the standard IDSA treatment for lyme. A 23+ and 41+ band on an IGM Western Blot is CDC positive- if I were you I would call your dr. and physically get a copy of the blood tests that he took. An IGG Western Blot would need 5 positive bands to be CDC positive. Which test did you have? Did you have the ELISA test first? then the WB?, then the PCR? And the fact that you did steroids and are worse.

Do you know about the coinfections? Personally, I believe Bartonella is the culprit. When I speak of Lyme, I really mean the 3 B's ...Borrelia, Baronella & Babesia. The symptoms of MS are the same as the symptoms of these infections and lesions can be seen in both.

This is all based on 12 years of misdiagnosed MS for a close cousin who almost lost his life. He then tested for 5 infections and has been treating with antibiotics for 4 years and improved dramatically! It wasn't easy and it took a long while to see improvement.

make sure it is an ILADS dr.

So I just got back from my PCP. He said that no antibodies "lit up" for him to think it is Lyme even though I still have 23/41 bands. He will draw and send my blood work to IGenex though. So that is my next step. Who else has had this type of scenario where you have 2 bands but your doctor does think it is Lyme even though you have a wave of symptoms that fall right inline with everything related to Lyme?