Herbalist says he will try to keep me alive

[angeldancer]

Hello everyone,

I have been silent awhile but do read the posts.  I kind of gotten down about my recent blood test, cat scans, and previous pet scan.  Looks horrible for me so I turned to a chinese herbalist and acupuncturist.  I asked him how do I stay alive with all my medical problems.  I am back in a horrible flare and my cancer markers have increased.

He calmly told me that there is no cure for sjogrens even with all the greatest herbs but he will help my system try to fight.  He also said all our meds is to help us be comfortable with the disease but do nothing to help our system fight.  This sucks royally and now to figure out how to survive to live to see children married and possibly grandchildren. I feel like I have to strip my life totally down to survive.  My stress level did get raised after a horrible 3 story fall my son took at a job in Virginia.  It really didn't help.  I think I was stable until that happened in June and  my cancer markers and now everything is raised. 

The herbs are expensive but speaking that I am trying to keep the cancer from returning what choices to I have.  I live in daily pain and try everything to keep symptoms down.  I haven't seen my rheumy in a while and will make an appointment to see him next week.

That being said how many of you have tried a strong herbal protocol to help with symptoms? Did you stay on them and did they lesson any of the symptoms.  I feel like I am not doing everything to stay put in this world until I am 92.  I do take my heart meds and my plaq and neurontin.  I must admit though I feel my best when on prednisone but it's too dangerous to stay on too long.  Before June I was ready to get back to a full time job and since June I can barely keep moving.  I push to get my son to doctors and to surgeries and the like.

You are all the best and I am grateful to be a part of this forum.

Angel dancer

[Joe S.]

Jan and I are currently running about $300/ month in supplements. I avoid sunlight and try to keep the climate in the house stable.

I suggest that you do your own research also. Check everything for side effects, counter indications, and drug interactions.R-Lipoic and Acetyl-L-carnitine seem to help with Sjogren's.

Tomorrow I will get to use toneations again for other problems. I brought the generator out of storage as we have a convention to attend this weekend. I have a new list of frequencies that I am working with that has 6 nano-bacteria frequencies.

Good Luck with your experiment.

[irish]

Have you ever been on Rituximab? This is the latest drug IV that is being found to help sjogrens,. It has several different variations of the name so don't get confused. Anything you take will have to be approved by the oncologists in order to keep those markers down. Good luck. Irish

[Lotus1]

So sorry to hear you are in this state.

I think the herbalist is right about no cure, manage SS symptoms instead.

I've found glyconutrient supplements very helpful for SS & also for my lymphoma (parotid gland) surgically removed 2015 I believe.
Of course the supps are expensive, but I'm glad to have more quality of life.

I use high dose krill oil to manage my rheumatoid arthritis.

I've just used a circulation promotor I bought for the first time this morning to hopefully help the lymph system.
I've not been able to walk outdoors much during a cold, wet winter.
Should be able to walk more now the weather is getting warmer.

If you are interested in the names of the glyconutrient supplements feel free to message me.
I'm not sure if I'm allowed to name the supps on the forum.

I wish you the best in trying to get help.

Lotus1

[warmwaters]

I have not experimented with an herbal approach.  I did try acupuncture and was in more pain. The acupuncturist said that was an unusual side effect (I'm think I may be the queen of unusual side effects).

I am concerned a bit for you in that in many cases Chinese herbal medicine is dispensed in a blend, so you may not know what you are taking, and how it might interact with any traditional meds you may take. Nor whether you are getting the same thing each time.  I echo Joe's comment about researching what you're taking before you take it.   

I know that many people in China successfully use Chinese herbal remedies, but it is a very different approach, and you need to feel ok about your practitioner and his or her approach.

[angeldancer]

I agree with you on knowing about what I am taking.  I am setting up a meeting with him to discuss the last batch he gave me.  The first two were on point.  It helped my hot flashes, My white blood count went up, The ringing in my ear stopped. etc.  This last batch did nothing at least I did not feel well at all and then I took a flu shot and absolutely crashed. My pain levels are extraordinarily high and trying to get relief has been a struggle. I told him my goal is to stay alive for the next twenty years and I know that it will take my immune system becoming my friend more so than not.  I have to keep the cancers away.

Thanks,
angeldancer

[Sharon]

I tried a herbalist and thought she may know what she was talking about,
but later researched the herbs she wanted to compound in a tincture for me and
realized she was WAY OFF. Had I taken it, it would have worsened my sicca and affected the potency of the biological drug I'm taking. So yes- research.

I second Irish's suggestion to get on Rituximab. Helps with both Cancer and SJS.
I fought long and hard to get my insurance to approve Orencia and am so glad I did.
It has helped so much with the pain (but not the sicca).

[WhatYouSjo]

I take some supplements, but I'm leery of anything that doesn't have some peer-reviewed data behind it. It is easy to rack up a large supplement bill for treatments that likely do not work. When I do add a new supplement, I make sure that I don't change anything else for a couple of months so I can evaluate its effects in isolation. In the past, I have encountered herbs that seem to make my symptoms worse, so I am very careful.

I've listed my own treatment regimen in my signature if you are interested.