I took Cat's Claw for several years, but began to wonder if it wasn't triggering flares. I have read that it can help w/ mild lupus, but would hinder a more progressive form of lupus. I think it is a wonderful herb that helps boost the immune system like no other supplement out there. But maybe not so if you have an immune system that's in overdrive.
I just read your comment on tanning beds. Yes, absolutely, stay far, far away from tanning beds and sun exposure. Preferrable, you need to get your vit D out of a bottle. Your dr. can prescribe some or you could take vit D 3. Either way, you need to have your blood level checked and monitored. Too much can cause some crazy symptoms. And we all know things are crazy enough w/o adding anything else on top of it.
Odd thing, since I've been supplementing my D, getting it out of the low range, I who have almost never been sick at all in the last 6 years, am now getting sick like other people. Is there something about D deficiency that helps stoke the autoimmune system and make it strong? I have heard that people with MS often don't get sick like other people do with contagious illness. And people with MS often start with low D.
Cat's Claw has especially recently gotten me very sick and weak. I tried 5 drops of it and ended up with flu-like symptoms and way-worse weakness. Had to sleep 12 hours for 3 days in a row. Now I'm back to one drop of Cat's Claw a day and can cope with that. For me, Cat's Claw seems to weaken my immune system. Now the "rash" on my face flared and part of it on my nose started bleeding. It doesn't itch or hurt. It's just there.
The only reason I'm doing indoor tanning (regardless of my reaction to it) is I want an answer! It's been 6 years of no results for me despite intense medical inquiry. If what I have is lupus, won't the tanning bed lead to something definitive??? Won't there have to be a medical showdown that will provide me an answer when my body finally has a meltdown? Have you ever heard of UV rays causing thumb twitching similar to, but not quite as intense as would be experienced in a nerve conduction study? That's what I had the last time I did indoor tanning.
Thanks for your suggestion about getting UV rays before having another ANA. My ANAs are always negative and I have always avoided the sun in the past. Now I know better. Why don't doctors tell us about these things???
I think my next step would be to get an ANA after much UV exposure. If it is elevated would that be a pretty good indicator that I might have lupus or could another disease condition cause elevated ANA after UV exposure? Do you know of anything else that would cause ANA to elevate after UV rays?
I value all of your input so much!! Thanks for taking the time to share with the rest of us your extensive knowledge about lupus. Until I get a diagnosis, I'm keeping it as a possibility. The following is something I discovered this morning on the computer and it supports what you had replied about cats claw - that it would not be good for progressed lupus or any autoimmune condition that is already in overdrive.
While I was researching cats claw I came across the American Cancer Society Website discussion on cats claw (see site just below):
Here's what the American Cancer Society said about Cat's claw and lupus: "People who should not take cat’s claw include those who have low blood pressure or an autoimmune disease (such as lupus or multiple sclerosis)." That makes sense to me. Yet I have found other groups actually suggesting that using cats claw (which stimulates the immune disease) might be actually good for autoimmune disease treatment - something I never could understand. Why would more stimulation of an already way overactive immune system that is attacking its own body be beneficial? On the other hand, the American Cancer Society is not likely an expert on autoimmune disease, but what they said about cats claw and lupus does make sense to me.
Just wanted to share with you further back-up of what you said about cats claw.
As far as I know, lupus is the only illnss that would cause the ANA to be elevated after sun expsoure. And I'm not sure what tanning beds emit. In my opinion, I would just stick with the sun exposure. I'm not sure why drs. don't tell us to get sun exposure. I think it is for liability reasons. But when you are going years w/o a dx, I think it is worth it to take the chance of a flare in order to be diagnosed.
If you have an autoimmune disease, the cat's claw is increasing your immune system, thus contributing to the immune system in overdrive. I assure you it is not weakeningyour immune system. If you are symptomatic, I suggest you not take the cat's claw. The book "Nurtritional Healing" states that if you have mild lupus, cat's claw could be beneficial. It sounds like there are some discrepancies about this herb used in AI.
I assume you are familar w/ the 11 criteria for lupus. Which ones do you have?
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Thank you for your kind words and the best answer vote.
Thanks for your kind response! I agree with you that it is worth risking a flare after years of symptoms with no diagnosis!!! However, lately, my nighttime breathing (while using BiPAP) has been scary especially the nights after UVB exposure I feel like I am really fading out and have had low O2 sats in the 70s and 80s. I researched and did find that lupus can cause low O2 sats. After UVB I also had concerning heart symptoms. My son asked me to quit the UVB exposure but I told him just what you said- that after years of no answers, I'm willing to risk the symptoms that UVB brings for me. Of the 11 criteria, so far I see the UVB causing a rash over my cheeks and nose, I have photosensivity, oral ulcers, arthritis and I'm going to be tested again for ANA after tanning - I hope it will show something this time. I also have nocturnal enuresis which lupus can cause. I have heart and lung sequelae as well as extreme fatigue, muscle cramping, neuro symptoms. Have not been tested for anti-DNA or anti-SM because of my negative-ANA- roadblock.
My question to you: How many 8-minute UVB sessions should I have before testing my ANA? And, is it best to test on the same day of UVB exposure or the next day?? Please let me know your opinion on this: I so want an accurate ANA this time!!
I'm not sure I would recommend UVB sessions at all. I'm not familiar w/ how it affects ANA levels. What I would recommend is spending time in the sun just prior to your appointment. Just go early and stand out in the sun for 15-30 min depending on what time of the year. Even if it is cloudy. Meanwhile, stay out of the sun.
I am very concerned about your lung issues. I definitely would encourage you to get that seen about. Have they done an X-ray?
I have about 3 to 4 of the 11 criteria - (not sure about the facial rash yet). I have essentially kept my face covered during the tanning session except for the last one.
Haven't had a chest x-ray recently. It takes a while to get in with pulmonologist.
I do have home O2 and used it yesterday. What would a chest x-ray show?
We just don't have any decent amount of sunlight here at this time of year. Can't picture the little bit of light we have causing any change in my ANA results. I think I first had the ANA tested 2 years ago. Once it was top-normal, but usually it is low, but I have always stayed indoors out of the light most of the time since I don't tolerate sun or heat exposure well. If I ever did go out into the sunshine it was brief and I always used sunscreen.
In the book, THE UV ADVANTAGE by Dr. Holick, he says that tanning bed UV rays are the same as regular sunlight. But I agree with you that they seem actually to be stronger than regular sunlight.
OK, so you said to get the ANA drawn soon after UVB exposure. Maybe I'll just go tan today and then have it drawn.
I spoke to a lady with lupus in our town and she said that it helped her get her diagnosis to be out in the sun for about 30 minutes and then have a skin biopsy of her arm. The skin biopsy resulted in her lupus diagnosis.
I'm not sure what the X-ray would show. I know lupus can cause inflamation of the lining of the lungs, and heart. It can also cause pluresy. Another thing that (I've been told) that "can" go along w/ lupus and other autoimmune is sarcoidosis. Which can cause a dry cough among other symptoms.
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