I don't take anything doctors say "as law". I know I have a right to deny treatments and I have denied taking medications before when I thought it was pointless (ie: antibiotics for a virus and overly strong pain meds). I don't like taking anything unless I know why I'm taking it, if I'm allergic to it, benefits vs side effects, and things like that.

I just got over chemo treatments for lymphoma and my doctor wants to put me back on chemo because my immune system is attacking my kidneys and my eye now among other things.

Honestly, at this point I'm not too sure if being on chemo drugs is going to help much since I think that they kind of made things worse in the first place. I rather just wait and see what happens for a while but he keeps insisting to put me back on medications. I also don't want to lose vision or kidney function. I take 800mg of Motrin for pain and to keep swelling down and it seems to be helping but I still worry about the rest of my body and how much damage my body is actually doing to itself.

I'm going to my rheumatologist in two weeks to see what she thinks but it would be nice to have a second opinion before then since I'm not a doctor and my health worries me a lot. At this point, I would just be happy to know that my vision is going to come back and be clear. I'm just so frustrated with doctors.

I'm not a doctor by any means, but chemo should theoretically work for a while because it does kill your immune system.. weakening your immune system would weaken the attack on your kidneys and eye. But I'm not sure that that would fully solve your problem because if that's the case, your body is pretty much rejecting your eye and kidneys and classified them as threats. But the main thing is... you do not want to lose your kidneys... you can live without them on dialysis, sure. But that's not a fun process so your doctor might be trying to put that off for as long as possible. Honestly, what's going to be best for you will be second, third and maybe fourth opinions from other doctors. The sooner you get those, the better.

Ask about going on a water pill for the swelling if you still have issues with it even with the motrin and there's even over the counter supplements you can take. very vitamin-esque that act similarly to a water pill. those might be worth a try.

:hug: You're such a strong person Mystic, and I love your avi! I'm not sure I've seen her with clothes on before lol But I too hate to take medications unless it's truely necessary. I think doctors are very quick to perscribe a medication even when it might not be totally necessary, or could possibly wait and be avoided. They also perscribe high doses when I don't think it's necessary either. My one year old got strep, for the third time since she was born, poor baby, and each time they perscribed her the strongest medication, and it wasn't until this last time that she got it did I find out they were giving her enough to treat two cases of strep, and were having me give her all of the medication. So even though it was gone after five days, they still had me give her five more days of it. So the fact that I've treated her little body with that medication for thirty days all together, as if she'd had it six times, makes me sick to think about. You'd think they would at least perscribe her something different so that her body doesn't become immune to the medication. I don't know.

But I won't take Advils, or annnyything like that, even when I'm hurting. I just don't like the idea. BUT, I do think your case is different Mystic. There is a big difference in a headache and what you have going on. I think, if I were in your shoes, I would look into homeopathic(sp?) remedies before I hopped back on the meds. I hear that stuff really really works. My grandmother went through chemo for years, and that stuff made her more sick than we think the cancer would have. But then again it kept her alive longer too. I would have to do some research on lymphoma to really know what I'm talking about in your case, but it's really up to you to decide what needs to be done in the long run you know? Figure out how much time you have before your kidneys will begin to be affected, and in that time try some alternative healing methods if you're willing. If they don't work, then get on the medication. I guess, that's what I would do anyway. A second opinion in situations like this is always a great idea :yes:

Good luck Mystic :hug: Let us know what you decide?

Thanks to both of you.

Right now I'm trying to see if there's anything other than meds that can be done. Not many doctors I know have interest in anything aside from chemicals and harmful medications that aren't needed. I know this sounds a bit weird but my psychic was telling me about natural healing and I think I may go to talk to her about doctors that practice more traditional types of medicine to try to get help that way. She goes for natural healing and things like that.

Chemo drugs just dragged me down so much and I really do not want to go through that again. I figure if it's not one thing it's another thing at this point. I really can't afford to lose any more weight either and the chemo made me a bit out of wack and I lost a bunch of weight due to not eating much. Not something that I want to do again.

I can't really imagine what chemo is like. I know that essentially its poison and really wrecks a person's body. immune system, blood cell count, stomach lining.. everything. You're a very strong person to have gone through all of that and still be here today. especially with lymphoma... I hope this all works out for you this time. I'm not so sure homeopathic methods will work for something as serious as autoimmune stuff but it's worth a try at least while you're getting more questions answered by your doctors and maybe other doctors. If anything, it might make you more relaxed and comfortable and I think that'd be a very good thing for you at this point.

:) I guess I have a good homeo. example. My mother has a thyroid problem, and for years she was taking random medications. One would cause another problem, so she would switch, and that one would cause a different problem (as all medications do in the form of side effects). Last year she finally decided to see a naturalistic doctor. He did blood work and other things that told him what was going on with her. He personalized a list of vitamins, herbs etc. for her to take, and in ten years of medications, she is just now, with these homepathic remedies, getting her body back on track.

But again, I don't know much about what's going on with you, but if you can find a doctor that can get your body back on track, maybe it will stop attacking itself? I don't know.

But yes, chemo is awful, for you and the people who love you as well. It's tough to watch, I can't imagine what it's like to go through. If I ever have to go through something like this, I can only pray to have the strength and courage that you show. <3

Ah I'm hypothyroid. I tried homeopathic methods for a while but I didn't notice any big changes. pretty much the only drug that works for me is synthroid but I've been on so many others. And I'm not sure why but not even the generic form of synthroid (levothyroxine) works for me. I feel a big difference between the same mcg dosage /shrug. But there were people telling me to take iodine and eat certain foods that would help. nothing really worked. But I'm ok with the synthroid. Bummed I have to take it the rest of my life but it's better than wanting to sleep 24/7 and being so much heavier in weight and even forgetting sentences before I say them... who knows. I know there is one bag of, i don't even know, but my friend gave it to me and whenever I have a migraine or headache in general, I go or that bag and just keep it next to me for a while. that bag of scent seems to just cut it down to almost nothing. The body is a very mysterious thing sometimes.

I think it's amazing that you go against doctor's orders with medication. Personally, I haven't been given anything besides very strong pain killers and antibiotics for allergies. If you don't want to take harmful medication, I suggest you do something herbal? My grandmother, when I was younger, had a lot of plants and each one was for different things. You should try it out, I think. c:

I wish you luck on everything! Sorry I'm not much help. <3

Chemo therapy targets all cells. So it makes you pretty sick at first. The more you take the chemo, the more likely you are to get better. I've never had chemo, but I wouldn't refuse treatment. Cancer is a very slow and painful death. It's really weird and upsetting to see a family or friend shrivel away because of cancer.
Upside: Medical marijuana. >3

@Marionetta: I was actually going to do more research on medical marijuana since I read something a while back on benefits to lupus suffers. Chemo is something I just want to stay away from at this point.

^ LOL SMOKE ALL THE DOPE YOU WANT!!!
I hope you get better.

Ha, well weed isn't the worst thing I could do for my body. :P

I am also supportive of medical use of it for several reasons. I figure anything is less harsh than chemo.

I go to the doctors on Monday for another check up but the rheumatologist still didn't have anyone cancel any appointments so I'm still stuck waiting another week for that.

I feel slightly better today than I have been feeling but still am stressing out over the vision problems and my irregular heart beat that's shown up. I went to the ER and they said I wasn't dying so I guess I shouldn't worry too much about it anyway. I'm just hoping that's due to stress and nothing autoimmune.

Don't steroids also depress your immune system? Why don't you see about getting on those instead?

You might hallucinate a bit though depending on the steroid. Do not be home alone if you can help it....I was so scared when I was on them and I hallucinated...or maybe it was actually there. IDK.

BTW here....there isn't much choice for a second opinion. You either do what your doctor say....or don't. End of story.

Lupus makes everything more complex than it needs to be.

I had a doctor say that I was going to die and it's been five years later. He thought he knew everything and was prescribed me medications that I did not even need to be on. He's the whole reason I started researching things before I take them. He told me that it was because of my diet I was sick when my nutritionist said everything was fine after blood tests and things like that. I looked at a second opinion from another doctor who was more than willing to help me and diagnosed me with lupus. That was only a few weeks after I switched doctors. The doctor who told me I was going to die did not bother doing any testing on my immune system. Not every doctor knows what they're talking about.

If you end up going the medical marijuana route, try a vaporizer. My best friend has chrons, and a prescription for MM. She uses a vaporizer because smoking it makes her sick and triggers her symptoms.

If the chemo makes you miserable, you should consider other options.
But I have no clue what might help. :(

I'm sending good thoughts your way, okay?

Thanks.

Yeah, the way I figure it is if my body is reacting badly to something it shouldn't be in my body to begin with. I'll update once I go to the doctors again on Monday. It's frustrating me since I really have no answers until then.