so confused

[frhorngal]

Hello Everyone,
 
   So I had a bugger of an appointment with my LLMD/Infectious Disease doctor today. We've been very aggressive with treating my Lyme (treatment protocols are in my siggy line) but since I've hit a plateau, other testing was in order. My results are past exposure to 2 different mycoplasmas and epstein-barr, but not current infections. However, I've been back on the mino for just 3 weeks after doing a 2 month abx washout to see if my immune system could keep the Lyme in check (it couldn't.) It (the mino) is helping somewhat, but she is afraid that I am developing erosions and wants me to see a rheumy and get on one of the immuno-suppressants to try and calm things down.  I'm already on a severely restricted diet with all of the major triggers out so I can't try that for inflammation…the vit D thing helps a little bit…I'm allergic to ginger, curcumin, etc. so herbal anti-inflammatories are out…I want to keep going with the abx protocol but am getting scared…my livelihood depends on my wrists and hands (I'm a pianist and french horn player) and my wrists are in excruciating pain and my knuckles on my right hand have been swollen for months.

Thanks for any wisdom, insight, and thoughts you might have.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[linda]

It seems like many of us are faced with that decision. If your livelihood depends on your wrists and hands you may have to bite the bullet and take immunosupressants for a while. If you do, try to stay away from prednisone as it is terribly difficult to discontinue and has many side effects. The safest drugs are probably the NSAIDS like Celebrex or Mobic.

Keep in mind with your decision that biologics may not work as well if you start and stop them as your symptoms require; the immune system makes antibodies sometimes and makes them inefffective, and this happens more often if you stop taking them or space out the doses when you feel better. The injectable ones are probably the least harmful, at least they clear our system quicker than the IV biologics, this is important if you become sick or need surgery.

 I can tell you that the Humira injections are painful for most people because of the preservative they use. Joe's wife, Michelle, has very little pain with her injections, but I found them to be so painful that I would numb the area to be injected with an ice pack and still find them so painful that I woulod get nauseated. There was also quite a bit of pain after the injection. Enbrel comes in 2 forms, one is a ready to use injectable that also has a preservative, and a form that you mix yourself (it's easy) but has no preservative and is painless. Humira is 2x/month, Enbrel is 2x/week. There is a new one called Simponi that is once a month. For all of them make sure you check their websites for financial aide, many of them, like Enbrel, will give you a few free injections. There is some paperwork that your doctor will have to sign, but he'll know about that (believe me, the pharm reps keep them updated). Remicade is an IV as is Orencia. Remicade worked well for me for about 2.5 yrs.
 
The biologics work better with mtx, and mtx is supposed to help prevent antibodies from being formed against the biologics. But it is another drug to add and can be hard on the liver. Mtx can also be used alone successfully. I hope this helps with your decision, I'm sorry that you have to try and figure this out. At least with AP you have a chance of being able to eventually quit taking immunosuppresants.

linda

[PhilC]

[user=414]frhorngal[/user] wrote:

I'm already on a severely restricted diet with all of the major triggers out so I can't try that for inflammation…the vit D thing helps a little bit…I'm allergic to ginger, curcumin, etc. so herbal anti-inflammatories are out…

I noticed that I am also sensitive to some spices, including the ones you mentioned.  However, there are a number of other options that you may be able to tolerate.  Are you taking any kind of natural anti-inflammatories at all?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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