Alternative Treatments?

[Pmarsh]

Just wondering if anyone has benefited from alternative medical treatments like seeing a Naturopathic Doctor or getting Acupuncture? I am thinking about trying Acupuncture. The Dr I may see says she has a lot of experience treating patients will various auto-immune diseases. Worth a shot? What other types of treatments have you tried? I also go for massage, but it's more of a feel good thing for loosening up sore muscles from physical activity.

Cheers.

[norcalian]

I'm a fan of accupuncture. I haven't been yet for my Wegs...but that's basically because I don't go much of anywhere these days. But I've seen one for other stuff with a lot of good success. Once my drugs have been adequately tapered I'll go to a guy I see here in Oakland. If you end up going to one, let me know how it works with your Wegs.

[Sangye]

The Dr I may see says she has a lot of experience treating patients will various auto-immune diseases. Worth a shot?
You can use holistic medicine to a degree but you need to be very careful. Here are a couple of threads with my suggestions and explanations (look for my posts):
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/346-my-roommate-i-2.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html

[Thakator]

Also, be careful with massage. No deep masssage for those on chemo.

[vdub]

I think I'd listen to Sangye on this one..... Be very, very careful.....

[Jack]

I think you are going to get a similar reaction from most on the Forum. Alternative treatments are a subject that has come up many times over the years, but I've yet to hear much in the way of success. However, we all know how finely balanced our current drug regimens are and know how quickly things can go horribly and even permanently wrong.

[JanW]

What Jack and Sangye said. You aren't going to see too much talk about alternative treatments as being a substitute for standard medicine for wegs, and since our conditions are often so precarious (even when healthy), you have to ask yourself with the benefits outweigh the risks. I haven't gotten so much as a massage since I have been on mtx. I did get accupuncture because of my problems with my ankle. It didn't help, but mtx certainly did.

[drz]

Also, be careful with massage. No deep masssage for those on chemo.

I used to really like a good massage and got several before my diagnosis. They seemed to help me feel better for an hour or two but did nothing to help the joint pain from the Wegs.

What are the risks from a massage? I have not got any since my diagnosis.

[pberggren1]

I used to really like a good massage and got several before my diagnosis. They seemed to help me feel better for an hour or two but did nothing to help the joint pain from the Wegs.

What are the risks from a massage? I have not got any since my diagnosis.

I think the risks from a deep tissue massage are that it can release the toxic ctx or other chemo that has built up over time in our muscles. If it is released it can wreak havoc on our body and possibly kill us.

[Pmarsh]

I'm certainly not looking at alternative treatments to replace typical treatments, just compliment them. From what I've read there is no real reason for someone on Chemo to avoid massage. The only risks are greater likelihood of bruising with deeper massages, and of course the risk of infection if you have cuts or scraps and there is poor hygiene at the clinic you go to. I will certainly be cautious about what I do - knowing that the goal is still immuno-suppression - but I'm also curious about whether anyone has found any alternative treatments to be beneficial.

[JanW]

The risk I've always heard (and Sangye should certainly chime in on this) is that massage can be immune system stimulating, which is something you want to avoid at all costs if you are on chemo. I don't trust the standard massage therapist enough to know what to do to NOT stimulate the immune system, so I just avoid them (it wasn't something I was doing on a regular basis in any case).

[Sangye]

Peter, it is very dangerous to do anything but the lightest massage for someone on chemo (and even for quite awhile after stopping chemo). Chemo stays in the tissues for years, and massage can release it into the bloodstream all at once. I've never met a massage therapist who didn't know this and have a very healthy respect for the limits it requires.

[Sangye]

(LOL Jan and I posted at the same time)

There isn't a big concern about stimulating the immune system with massage unless the therapist is doing a specific technique. That is not very common and you can tell them up front to avoid anything like that.

[drz]

Peter, it is very dangerous to do anything but the lightest massage for someone on chemo (and even for quite awhile after stopping chemo). Chemo stays in the tissues for years, and massage can release it into the bloodstream all at once. I've never met a massage therapist who didn't know this and have a very healthy respect for the limits it requires.
Darn it, I was thinking about getting some more massages since I remember how good they felt. I used to get a lot before my diagnosis but haven't had any since. Now I suspect they won't touch me.

I had also taken some meds to boost my immune system when i went on trip to South Africa before my diagnosis cause I didn't want to get sick there. My immune system was already compromised due to my diabetes but i survived the trip fine.
After my return I was also bitten by a spider or tick and ended up getting treatment for Lymes disease twice since my joint pains mimic that pretty well. I think these two things probably helped kick the GPA into high gear.

[Sangye]

You can still get light massages, drz.

What did you take to boost your immune system before going to Africa? If it was holistic supplements or herbs it couldn't have contributed to Wegs.

[Stephanie78]

We actually had this conversation today with Johns neuohrologist. Our neighbor who has a different immune disease (no clue the name) swears by her acupuncturist and Chinese herbal meds. She has been trying to convince us to give it a try. Being newly diagnosed with WG we are extremely cautious of anything not suggested by Johns dr. John has had horrible stomach issues and our neighbor swore it helped her stomach issues.
When brought up to the dr today he said..... I don't feel comfortable with him doing anything like that at this time. With all the meds and the changes in his body from the disease and inflammation he didnt feel comfortable with it. He also said that our main focus needs to be on his current treatment. However, once in remission he does not see a problem with giving it a try.
John of course sees nothing relaxing about needles. He said he has had enough IV's and blood drawn that he feels like he has already had it ;-)

[marta]

I have had many massages since getting diagnosed and I love them. I've had a couple of sessions of scar tissue massage to break up the scar tissue that was developing and causing me a whole lot of grief from my lung biopsy - extremely painfull massage but so worth it as I haven't had any problems since I had the massages. I've also had reflexology (Rwo Shr - I think that's how it's spelled) and I actually saw my liver function tests normalize after two weeks of that painful but obviously benefitial therapy (my LFT's were way high - GGT was in the 200's). As far as the massage goes, my doctors both had no problem with it and wrote me out perscriptions to get it. I know there are some precautions to take, and we've had this discussion on here before so I did some research about chemo and massage - here's a site that gives some good info. Chemotherapy Drugs and Side Effects Information - Chemo Care (http://www.chemocare.com/complementary_therapy.asp). I know we have chemo for different reasons than cancer, but if the question is just about chemo and massage, then it's worth a read. Couple more... Massage During Chemotherapy - Is It Safe to Get a Massage During Chemotherapy (http://cancer.about.com/od/alternativetreatments/f/Massage-Chemotherapy.htm), The Human Touch: Massages for Chemotherapy Patients : Healthymagination (http://www.healthymagination.com/blog/the-human-touch-massages-for-chemotherapy-patients/)

[Pmarsh]

Thanks Marta. I found those websites too, and spoke to a couple different MD's who couldn't seen an issue with having massage while on Chemo. I've gone quite a few times over the past couple months and I find it relaxing, although it hasn't totally helped with some muscle soreness in my chest and neck. I wouldn't say it's deep tissue massage, but it's not super light either. I'm going to try Acupuncture on Saturday. Sounds like the Dr has some experience with auto-immune diseases and I'm sure we will have a long chat before any treatment.

[Sangye]

Peter, MDs don't believe chemo remains in the body, so they naturally do not understand how massage or detoxes can harm someone.

[marta]

Like I said, I've had quite a few since detox and I feel that they've helped me tremendously - on many levels, but like everything else with Wegs, different strokes for different folks.

[jola57]

I totaly agree with Marta, I have had massages since being diagnoses. I did stop for a while at the time that I had the worst flare and was on 50 pred and cyclo. But then I didn't feel like having anyone touching my body at the time anyway. Massage and reflexology is great for the aching muscles and whole well being. While it is true that some residual chemo is present in our bodies, the amounts are not significant enough to do harm. I survived the dropped foot and regained mobility and partial feeling in both feet because I got into a hot tub every day and massaged the heck out of my feet and continued to do so at every possible moment. I just came back from Poland where I stayed at a Sanatorium for 12 days (first time for me). It is basically a holistic live in treatment center. Look up Sanatorium in Poland to get more info. It was great, I swam and excercised in salt water every morning, had massage, hot mud packs and electric current on my feet. I enjoyed every minute of the stay and highly recomend it to everyone.

[pberggren1]

Next time you go Jolanta, just put me in a big suite case.

[Sangye]

I While it is true that some residual chemo is present in our bodies, the amounts are not significant enough to do harm.
Chemo lingers in fat and particularly in the liver. People who've been on chemo will often taste it or have other signs of it years later during a detox. Holistic centers that treat people with cancer very strongly advise against deep tissue massage while on chemo and for some time afterwards. Even though we take lower doses, we are often on it for longer periods of time.

[drz]

and electric current on my feet. I enjoyed every minute of the stay and highly recommend it to everyone.

Years ago I read about electrical stimulation being used to treat neuropathy on an experimental basis. I also noticed when I had nerve conduction tests which used electrical currents (often painful) that my neuropathy seemed to improve for awhile. electrical stimulation might prove to be a helpful treatment for neuropathy.

[jola57]

The treatment I received was non invasive, that is the current was run into a sponge which was then placed on my foot and lower back. The result is that I feel a lot better. Whether that is due to my 10 day rest with lots of lying on bed with feet up or the benefits of the current therapy, I don't know. Maybe next time I will go for longer. I can tell you that the rest and excercise has made a lot of difference. I felt better and had no significant pain as supposed to when I am at home and working full time. Phil, any time you are ready :biggrin1:

[Pmarsh]

I was thinking a little more about the discussion of massage therapy on this thread. There seems to be two different opinions on the matter. For me, I have had a dozen or so massages in the past 4-5 months while on Cyclo and have had no ill effects... so I tend to lean toward the "massage does no harm" side. Most of the websites I have found and the Dr's I have asked (although not specialists) have said there is no issue with massage while on chemo. Just wondering if anyone can point out any studies or papers arguing against massage?

My thought is that if we store toxins in our fat and liver then it would be best to flush these out regularly. I would think that massage would help with this. Just a thought though...

[Sangye]

Peter, I suggest you contact a national massage therapy association for info. Personally I wouldn't rely on a medical doctor's opinion of a holistic therapy, even when they say it's safe. They have no training in evaluation of holistic remedies whatsoever (unlike holistic physicians, who have to learn in full detail about medical diagnoses and treatments). It's like asking your lawyer for medical advice.

I'd be surprised if you can find actual research on the subject. Massage therapists don't have the millions of dollars necessary to do such studies.

Your thinking about flushing toxins is correct, but it needs to be done at a very slow and steady rate or you can become quite ill. There are many factors involved, including the proper function of excretory systems (intestines, kidneys, skin) as well as the general state of the body. Massage is a stressor to the body, in that it shifts the body from its state of equilibrium. Ideally that additional stress will result in improved function. But if the body is currently using all its resources to heal and to manage the drugs, the added "stress" of massage may be too much.