Why some need DMARDs/Biologics along with AP

[Maz]

[user=86]Susan Lyme/RA[/user] wrote:

I'm not advocating them, but unlike Maz, I do not want any further joint damage. 

Maz,

Here is a website about a doctor in Florida who is regrowing cartilage by taking your own stemcells and injecting them into the damaged joint.

 

Hi Susan,

Boy, I should learn not to post late at night! :roll-laugh: Who wants joint damage? Not me!!!  😯  Biologics just aren't an option for me, though, as I have a brother with the worst kind of MS (chronic progressive) and a contraindication of the biologics is that you mustn't take them if you have MS or a close relative with MS. As for the other DMARDs, well….that has been more of a personal choice not to take them in addition to my LLMDs strong advice that to suppress my immune system would be a big no-no with the Lyme (except for plaquenil, which is a Lyme cyst-buster and anti-babesial med). Our two docs work very differently – not that either is wrong, but sure would be nice to know what might be progressive thought amongst LLMDs and what isn't. They all have such vastly differing approaches. 😕 Might be interesting for all the Lymies to start a LLMD thread to explain the different approaches. When I was a new Lymie, I had no idea that there were so many treatment philosophies.

I'm fascinated to know if your LLMD's approach is unique in using biologics or if other LLMDs are now employing biologics. I'm deeply interested not just because of the MS connection in my family, but also because one of the known side-effects of the biologics can be the emergence of MS-like symptoms. It occured to me that those patients who do experience these MS-like symptoms may actually be undiagnosed Lyme patients (with neuro Lyme), as Lyme is known to mimic MS. In other words, could suppression of a Lyme patient's immune system bring out these neurological complications of Lyme?

All of this seems like such a balancing act…it's like we must trade off one risk for another. I figure that if I have to have joint replacements at some point, at least my immune system would be intact. It's all such a cost/benefit thing, isn't it? :doh: Sucks that we have to make these kinds of decisions, at all.

Thank you very much for your thoughtfulness in sending the stemcell website, Susan. Amazing what is being done now! I will pass it along to my Dad. 😀

Peace, Maz

PS I know you've only been put on Enbrel as a temporary measure while you go after some of your infections, so the above probably isn't a concern for you….really just meant patients who may have Lyme, don't know it and aren't taking any Lyme treatments, but put on a biologic.

[Susan LymeRA]

Kim said:

The orthopedic surgeon that did my knee replacement also is into regrowing your own cartilage, but when I asked him about it he politely told me it was only for younger patients……..mainly kids and athletes with injuries instead of degenerative problems

:X:X:X 

You, my friend, do NOT look old!  How rude!

Maz,

Hee-Hee!  I didn't think you were saying you wanted damaged joints, only that you are willing to risk it for a treatment you believe in.  I'm with you there.  I have often thought,  “if I didn't ride horses, I could live with some joint damage”.  But because I ride, I desperately need to be functional in EVERY joint.  It is a physical sport.

I started this thread to reassure some here who are not getting the results from AP fast enough to save their joints and find they must go on biologics or DMARDS.  I prefer the biologics over the DMARDS because the DMARDS do not stop joint damage.  Please don't think it has to be either/or.  I believe infection is behind all A.I.  It just might be that the particular infection causing you trouble requires a different antibiotic.  Currently I am on an anti-protozoal for Babesia.  So, do what you must to save joints but keep looking for the cause.

I don't advocate steroids at all.  Seems they do as much damage as the disease itself.  Biologics are only 15 yrs old, so no one can say for sure that there is not some longterm damage there too. 

I had the “but I need my immune system to fight the bugs” argument with my doctor and she explained she doesn't normally have to use the biologics for her lyme and company patients, but I am extreme.  I continue with inflammation despite a very good diet, tons of anti-inflammatories (all natural.  Advil works but wrecked my gut already) as well as antibiotics AND plaquenil. 

So, I figure if I have to go down this rarely tread path, I might as well let all you guys benefit from my experience, good or bad.  I certainly hope I never have to tell you I developed something like MS or that my family has to come on here one day to inform you I passed on from some deadly infection.  Ugh!

On the other hand, crazy as this may sound to anyone who is not a horsenut, if I have to choose between riding or not riding,  I choose riding.  Stupid as it sounds, I would take anything that will keep me riding.  Once I am no longer riding, …..well, I won't say it.  It sounds so selfish.  But it is how I feel. 

Susan

 

 

 

[A Friend]

[user=40]Kim[/user] wrote:

Susan, this one's mainly for you.  I'm in the middle of a 30-day parasite cleanse and yesterday …………. :shock::shock::shock::shock::shock::shock::shock::shock::shock::shock::shock::shock: 

Too many more 'discoveries' may just do me in!

Kim, today is March 25, and I'm reading lots of posts on the subject after reading Maz's post about ordering the Humaworm cleanse.  A question for you:  Does this cleanse involve doing a cleanse, then waiting a certain number of days or weeks, and repeating the cleanse a certain number of times?  (In the reading I did several years ago by Dr. Hulda Clark, several series were recommended, because of the hatching of the eggs left over after the previous cleanses.  Sounded reasonable to me, as otherwise the eggs hatch and it all starts all over again???)

These parasite cleanses first captured my attention several years ago when I received an e-mail with a copy of a mother's experience with her toddler who developed serious reactions, including constant seizures many times a day, ongoing no matter what, and the toddler's dedicated doctor who, after many months, finally learned something that caused her to put the toddler on an effective parasite cleanse.  The results pointed back to a dog bite that broke the skin.  The toddler had had constant seizures until the cause of this ongoing calamity was discovered and addressed.  Thankfully, the toddler recovered.  The mother wanted to share this experience with anyone who might need it, and gave permission for her story to be circulated.   

AF

[Author]

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