Diagnosed, Devastated, & Defenseless

[annekat]

Really excellent post, Pierre! So good that I bookmarked it. That is, I bookmarked this page of the thread.

[Birdie]

You can research the quinolones on the web, and the problems they can cause. But first make sure that was indeed what you were taking. I think it probably was, since I can't find "levoflaxim" in a Google search.

Try "Levoflaoxacin"

It's a broad spectrum antibiotic of the fluoroquinolone drug class, according to Wikki.

One of many, many, many antibiotics from my past.

[Birdie]

Flares happen - Like The Spanish Inquisition.

Nuf said...

[annekat]

Try "Levoflaoxacin"

It's a broad spectrum antibiotic of the fluoroquinolone drug class, according to Wikki.

One of many, many, many antibiotics from my past.

Levaquin is the brand name for levofloxacin. It can easily be researched under either name. At the time I took it, no generic was available and that may still be the case. It is fairly expensive. Back in 2008, after having joint, muscle, and tendon problems, apparently from taking it, I researched it and found that many have reported even worse problems than I had. Others, I presume, are not affected in that way. As I said above, I later took Cipro, or ciprofloxacin, another fluoroquinolone, and had no problem. It is probably not as strong as Levaquin, though, which is considered a "big gun".

[Joni]

Thank you WG Mom, I as you were asking almost daily, how he is doing.. Somedays I still do.. If I didn't hear from him, I texted him. I never want him to think this is how I define him. He is so much more than that! I seem to be letting this blasted disease influence my learning, reading, watching and shopping for anything to make it go away! My ears perk up like a puppy when I hear the words.. Autoimmune, Inflammation, GPA, all the words associated with this.. It gets so overwhelming sometimes, I just lay down and cry, then I start wondering if there was anything I could have done to prevent him from having it. Even today on Public TV there was a show on Immune Deficiancy, I was glued to TV with my paper and pen waiting to jot anything down with reference.. I will TRY and take your advice and slow down, I hope he knows that if he wants to share with me, I am and always have been there to listen.. I really needed to hear your advice.. Thanks from one Mom to another!!

[Joni]

Pierre 42, you sound very wise! I have a question.. There are vitamins, 'out there' (stores), that claim to build your immune system.. If one is taking medicine to destroy your immune system, should you take these vitamins or eat and drink foods that are suppose to build it up? Aren't you fighting one against the other? Sorry if this is a dumb question, I really do not understand.. Sorry and thanks...

[annekat]

Pierre 42, you sound very wise! I have a question.. There are vitamins, 'out there' (stores), that claim to build your immune system.. If one is taking medicine to destroy your immune system, should you take these vitamins or eat and drink foods that are suppose to build it up? Aren't you fighting one against the other? Sorry if this is a dumb question, I really do not understand.. Sorry and thanks...

Not a dumb question, and sorry it missed getting answered until now. Your logic is right, we should not be taking things that tend, or claim, to boost or build our immune systems that are malfunctioning. We aren't quite trying to "destroy" them, as we will die with no immune system at all. But we are trying to suppress them so that the damage they are doing will be minimized. By taking the meds, we are aiming to slow down and stop the progress of the disease yet still be able to fight off infections and other bugs, and allow healing of tissue. Immune system boosters would just ramp up the level of what we are trying to control. Things to avoid include echinacea, too much garlic, too much vitamin C, etc.; I'm sure there are other common ones I'm not thinking of. I think it is OK to eat some garlic, just not large quantities, and many of us do take vitamin C but limit it to 1000mg./day. That is my understanding of this, and others may have more to add.

[Pierre42]

Not a dumb question, and sorry it missed getting answered until now. Your logic is right, we should not be taking things that tend, or claim, to boost or build our immune systems that are malfunctioning. We aren't quite trying to "destroy" them, as we will die with no immune system at all. But we are trying to suppress them so that the damage they are doing will be minimized. By taking the meds, we are aiming to slow down and stop the progress of the disease yet still be able to fight off infections and other bugs, and allow healing of tissue. Immune system boosters would just ramp up the level of what we are trying to control. Things to avoid include echinacea, too much garlic, too much vitamin C, etc.; I'm sure there are other common ones I'm not thinking of. I think it is OK to eat some garlic, just not large quantities, and many of us do take vitamin C but limit it to 1000mg./day. That is my understanding of this, and others may have more to add.

VitaminC is fine to take, the only downside I'm aware of is that truly STUPENDOUS doses (think tens of grams) will tend to have a laxative effect.

Often the recommendation (eg to slamdunk a cold) is to take enough to reach that point, then back off a little. The phrase "dose to bowel saturation" has been used.

As far as Garlic goes, the ONLY sites warning about garlic are saying "garlic boosts your immune system" (ie snappy soundbyte with zero real content - amazing how much of that there is).
Everything even vaguely scientific talking about Garlic talks about the many and various ways garlic kills bacteria, thins the blood, etc but nothing concrete about any "interaction" with your immune system itself.
Sure it has "drug interaction warnings" but they're mostly due to that "thins the blood" (because eg Warfarin or NSAIDs).

I suspect the above "boost" soundbyte is in reality "does good things so your immune system doesn't have to" in the same sense that VitaminC does.

Personally I fall on the "eat lots of garlic" side of the fence. I do, and I'm in remission.

Echinacea, Goldenseal, and friends (however) are seriously toxic, don't take them ever unless you like staying in ICU.

[annekat]

Pierre, I tend to agree that garlic is a healthful and delicious thing to eat lots of. That and the Vit C and echinacea are just things I've heard said on here. These things do tend to get exaggerated. I wish I could think of better examples. I would definitely avoid buying supplements especially designed to strengthen the immune system when we are trying to suppress it. Echinacea may be an example of that, and I have no idea what vitamins, or possibly herbs, were in the things Joni saw "out there".

Do you mean echinacea and goldenseal are toxic to everyone or just to people with misbehaving immune systems? I don't take them now but have occasionally in the past, before WG dx, and not in large doses or on a regular basis. They had no negative effect that I was aware of.

[MaxD]

The immune system is a complex beast. It's simplistic to say that X or Y "strengthen the immune system and therefore we (GPA souls) should not take them because we are trying to suppress it." First off, "strengthening the immune system" is a very ambiguous claim - exactly what aspect of the immune system does X or Y change? Second, it's not that we are trying to suppress our immune system - all that our doctors are trying to do is get rid of the ANCA. But the only way we have to do that right now is to eliminate the peripheral B-cells (RTX) or pretty much anything in its way with CTX. Unless X or Y specifically increases the production of ANCA, there should, in principle, be no harm in ingesting it. For example, we're all told to get flu vaccines (just not the live ones) - simply to build immunity (aka strengthening our immune system).

So, take your Vitamins and whatever else - BUT, just don't take mega doses of anything. This applies for healthy non-GPA people as well.