i have a friend whose doctors are insisting she has MS and of course refusing to look into lyme, as her spinal tap came out negative (trust me, i know -- i definitely think she may have lyme and am encouraging her to access an LLMD and read all she can on lyme, which she is currently doing).
as of now, they're putting her on Betaseron injections, which is an interferon (for the supposed MS). does anyone know anything about this injection, if it will be harmful to her if she does have lyme, etc?
thanks so much.
~heather.
Posted by Lymetoo (Member # 743) on :
I think it's bad....but not sure. Why don't you do a search on the internet for it??
up for more responses.
Posted by treepatrol (Member # 4117) on :
Interferon beta-1b (marketed as Betaseron) is a drug in the interferon family used to treat multiple sclerosis. It is administered by sub-cutaneous injection and has been shown to slow the advance of the affliction as well as reduce the frequency of attacks. Betaseron is manufactured by Berlex Corporation.
It is believed that Interferon-Beta based drugs achieve their beneficial effect on MS progress via their anti-inflammatory properties. Studies have also determined that Interferon-Beta improves the integrity of the blood-brain barrier (BBB)--which generally breaks down in MS patients, allowing increasing amounts of undesirable substances to reach the brain. This strengthening of the BBB may be a contributing factor to Interferon-Beta's beneficial effects. These studies were carried out in vitro (outside a living organism - a "petri dish" experiment), so it does not necessarily mean it works the same in people.
Closely related is Interferon beta-1a, also indicated for multiple sclerosis, and with a very similar drug profile.
If the spirochetes are in the brain and this stuff seals the BBB back up thats good but not great because then already difficult to get abx's to cross BBB anyhow. At least its not steroidal.
Overview
It is believed that Interferon beta based drugs achieve their beneficial effect on MS progression via their anti-inflammatory properties. Studies have also determined that Interferon beta improves the integrity of the blood-brain barrier (BBB), which generally breaks down in MS patients, allowing increasing amounts of undesirable substances to reach the brain.
This strengthening of the BBB may be a contributing factor to Interferon-Beta's beneficial effects. These studies were carried out in vitro (outside a living organism; a "petri dish" experiment), so it does not necessarily mean it works the same in people.
Nonetheless, Interferons have side effects. The two main ones are flu-like symptoms, and injection-site reactions. The flu-like symptoms tend to happen immediately after the injection, and last for about half a day.
In many patients, these symptoms diminish over time, but some patients continue to experience them over the long term. One can mitigate these symptoms by using a dose that is injected less frequently, and by taking the medication before bedtime.
The injection-site reactions can be mitigated by rotating injection sites, or by using one of the medications that requires less frequent injections. Side effects are often onerous enough that many patients ultimately discontinue taking Interferons (or Copaxone�, one of the other disease-modifying therapies requiring daily or weekly injections).
The most commonly reported side effects are injection site disorders, flu-like symptoms, elevation of liver enzymes and blood cell abnormalities. Patients with depression, seizure disorders, or liver problems, should discuss treatment with Rebif with their doctors.
While these drugs improve certain diagnostic test results, many patients report no perceived improvement, along with serious side-effects that substantially reduce quality of life.
It is important to recognize that these drugs are intended to treat symptoms and possibly delay disease progression, but do not provide a cure to multiple sclerosis.
Furthermore, tolerance develops over time in some patients, due to the development of "neutralizing antibodies," which reduces the effectiveness of these drugs, while side effects may persist even after discontinuation.
Posted by Sojourner (Member # 9424) on :
Heather, First, I'll be clear in that I think you are doing the correct thing in trying to get your friend to see a llmd.
I know a bit about interferons which I'll share with you.
Interferons are produced naturally in our bodies as a way to fight virus' and bacteria (especially in macrophages). No one is really certain the true mode of action of the interferons that are injected by MS patients, but there is some speculation that they are (in a small way) fighting an infection.
Now, I don't think interferons are terribly effective in fighting anything-MS or Lyme, but I also know that it is not completely contraindicated if one decides to use abx to treat MS disease. So my point is that if someone is freaking out thinking that they have MS, but also wants to pursue a llmd, it would not be the worst thing in the world to do both for awhile. I know several people who stayed on their MS medication while starting abx, just as an insurance policy.
I was dx'd with MS and had been taking Betaseron since August 2000.
Now I am dx'd with Lyme, and have stopped the injections.
Dr. P in CT (who is knowledgeable of the MS/Lyme connection) told me that he did not think the Betaseron would do any harm, and that I could continue them.
I decided to stop the Betaseron when I began Lyme treatment about 6 months ago. It is a heavy-duty drug, and I figured there is only so much my body (especially my liver) can handle. I am having enough trouble with the minocycline and diflucan.
If I was not dx'd with Lyme (positive IgeneX IGG), I would probably still take it.