More thoughts about TCM

[LBS]

I posted a week or so on a thread about traditional Chinese medicine (TCM), and thought I'd start a new thread to toss some thoughts I'm having around, especially since I've been reading a lot of the information here.

First, the nutshell version of my experience so far: 52 years old, CFS symptoms for some 30 years, gave up looking for help years ago. Recently went to see my GP who is trained in both Eastern and Western medicine, and he prescribed a traditional chinese formula for my symptoms.

I started feeling better almost immediately, and continued to feel well for about a month. Better than I have in years. Eventually I ran out of the initial bottle of medicine that I had purchased and replaced it with a different brand. About the same time as this, I also stopped taking two other supplements I was using (co Q10 and ALA) and not long after, I caught a cold.

I have been struggling since then with a relapse of CFS symptoms. At first I thought it was due to stopping the two other supplements, but added them back in and still did not feel well. Then I thought that I must have been gearing up for the cold for a week or so before it actually came on, and that was dragging me down.

However, I finished up the second bottle of pills and replaced it with a third bottle from the same company that made the first bottle, which is a company that at least advertises that they do very strict quality control. Now I have energy again. It's early, but I'm feeling a bit more like I did before, so I'm suspecting that the company making the second bottle of pills probably isn't adhering well to standards and I won't purchase that brand again.

So, there is my experience. Some more background on me is that about 3 years ago I was diagnosed with multiple environmental allergies, and I have suspected for many years that I have some sort of autoimmune disease which causes or contributes to these feelings of fatigue. When I went to see my doctor this last time, I asked him to test me for Lupus and RA, and those tests came back negative. Now I am reading, here on this site, about the new research from Norway which strongly points toward autoimmune disease in at least some subset of CFS cases.

Last night I looked for information on immunosuppressant herbs in TCM, and it seems that this TCM formula I've been using contains several herbs that supposedly have this property. This could account for my feeling better initially, and it could also account for catching a cold-- something that almost never happens to me.

Obviously this is all speculative, but interesting speculation, at least to me. For now I plan to continue taking the formula, but tweaking the dosage so that I find the smallest dose that's effective for my CFS symptoms, to avoid exposing myself to another cold, or something worse-- if possible. Of course that is assuming that, unlike all my other attempted remedies, this one continues to help! I shall keep you all posted on how it goes, if you're interested in hearing it. Thanks for letting me share this experience here.

 

[Navid]

hi

can you pls share the name and brand of the tcm that helped you....and congrats on feeling better.

I posted a week or so on a thread about traditional Chinese medicine (TCM), and thought I'd start a new thread to toss some thoughts I'm having around, especially since I've been reading a lot of the information here.

First, the nutshell version of my experience so far: 52 years old, CFS symptoms for some 30 years, gave up looking for help years ago. Recently went to see my GP who is trained in both Eastern and Western medicine, and he prescribed a traditional chinese formula for my symptoms.

I started feeling better almost immediately, and continued to feel well for about a month. Better than I have in years. Eventually I ran out of the initial bottle of medicine that I had purchased and replaced it with a different brand. About the same time as this, I also stopped taking two other supplements I was using (co Q10 and ALA) and not long after, I caught a cold.

I have been struggling since then with a relapse of CFS symptoms. At first I thought it was due to stopping the two other supplements, but added them back in and still did not feel well. Then I thought that I must have been gearing up for the cold for a week or so before it actually came on, and that was dragging me down.

However, I finished up the second bottle of pills and replaced it with a third bottle from the same company that made the first bottle, which is a company that at least advertises that they do very strict quality control. Now I have energy again. It's early, but I'm feeling a bit more like I did before, so I'm suspecting that the company making the second bottle of pills probably isn't adhering well to standards and I won't purchase that brand again.

So, there is my experience. Some more background on me is that about 3 years ago I was diagnosed with multiple environmental allergies, and I have suspected for many years that I have some sort of autoimmune disease which causes or contributes to these feelings of fatigue. When I went to see my doctor this last time, I asked him to test me for Lupus and RA, and those tests came back negative. Now I am reading, here on this site, about the new research from Norway which strongly points toward autoimmune disease in at least some subset of CFS cases.

Last night I looked for information on immunosuppressant herbs in TCM, and it seems that this TCM formula I've been using contains several herbs that supposedly have this property. This could account for my feeling better initially, and it could also account for catching a cold-- something that almost never happens to me.

Obviously this is all speculative, but interesting speculation, at least to me. For now I plan to continue taking the formula, but tweaking the dosage so that I find the smallest dose that's effective for my CFS symptoms, to avoid exposing myself to another cold, or something worse-- if possible. Of course that is assuming that, unlike all my other attempted remedies, this one continues to help! I shall keep you all posted on how it goes, if you're interested in hearing it. Thanks for letting me share this experience here.

 

[LBS]

Oh, sorry... I had put it in an earlier post. Here it is:

http://nuherbs.com/items/detail/113

 

[LBS]

One more piece of my history that I forgot to include, but which may be important. Some years ago I had a battery of tests done in order to qualify for health insurance, and my doctor called me in when he got the results. He said they had run a test that measured my level of T cells and that this was a test that some insurance companies run as sort of a sneaky way to see if a person is HIV positive, even though they are not supposed to discriminate on that basis. He said that test result was abnormal, but that instead of having too few T cells, I had too many. He did not know how to interpret this result, but assured me that he would go to bat for me if the insurance company gave me a hard time about it-- which didn't happen.

Now I'm also reading here that T cells and B cells are possibly connected to CFS. I have a lot to learn here about the science of this, but thought this was also possibly of interest.

 

[ruben]

hi there LBS, I've been to the website where you have had the herbal formula from. From what I can see the formula is unavailable to me while I am not under any health professional. Do you know who I could contact so I could buy this product. I live in suffolk by the way

 

[ruben]

LBS, sorry I forgot to say thanks, ROBIN

 

[heapsreal]

One more piece of my history that I forgot to include, but which may be important. Some years ago I had a battery of tests done in order to qualify for health insurance, and my doctor called me in when he got the results. He said they had run a test that measured my level of T cells and that this was a test that some insurance companies run as sort of a sneaky way to see if a person is HIV positive, even though they are not supposed to discriminate on that basis. He said that test result was abnormal, but that instead of having too few T cells, I had too many. He did not know how to interpret this result, but assured me that he would go to bat for me if the insurance company gave me a hard time about it-- which didn't happen.

Now I'm also reading here that T cells and B cells are possibly connected to CFS. I have a lot to learn here about the science of this, but thought this was also possibly of interest.

T-cells can be elevated trying to compensate for poor natural killer cell function, this is one of the most common findings found in blood tests of me/cfs people. Also t-cells can be elevated from herpes viruses(ebv/cmv/hhv6) reactivating.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf

cheers!!!

 

[LBS]

hi there LBS, I've been to the website where you have had the herbal formula from. From what I can see the formula is unavailable to me while I am not under any health professional. Do you know who I could contact so I could buy this product. I live in suffolk by the way

Oh, this is unfortunate. I'm in the US and, here, we can purchase this over the counter or via the internet. I purchased my last bottle from a place called wellnessworks.net but I do not know if they ship products to the UK. They do have international shipping and there's a help line you can call for information. Here's that information: http://www.wellnessworks.net/Merchant2/merchant.mvc?Store_Code=WW&Screen=Ship

I hope you're able to find a source for this and at least give it a try.

 

[LBS]

T-cells can be elevated trying to compensate for poor natural killer cell function, this is one of the most common findings found in blood tests of me/cfs people. Also t-cells can be elevated from herpes viruses(ebv/cmv/hhv6) reactivating.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf

cheers!!!

Thanks, it's good to know that the pieces of this question of what is really wrong with me are finally coming together, even if the medical community still has little to offer for the moment. At least it appears as though a few things have been learned in the intervening 20 or so years since I last sought an answer to this problem! I'm now getting excited to learn as much as I can.

 

[heapsreal]

Thanks, it's good to know that the pieces of this question of what is really wrong with me are finally coming together, even if the medical community still has little to offer for the moment. At least it appears as though a few things have been learned in the intervening 20 or so years since I last sought an answer to this problem! I'm now getting excited to learn as much as I can.

Hardest part is finding a good doctor i think. Theres alot of new info out there now but not many docs know about it or care.
good luck.

 

[LBS]

I'm thinking I may have to travel to get a good diagnostic workup, but the more I read, the more I believe I should do it-- if only to be able to get into line if a breakthrough does occur. I'll be checking out the forum with CFS doctors and clinics to see what i can find that's relatively nearby.

 

[LBS]

Okay, it's been a few days since I got back on track with this therapy (Gui pi wan). First of all, yes there is a huge difference between this brand and the other one I had used. This is definitely working. My energy level and ability to concentrate are both improving, not quite yet back to the level that they were at a couple of months ago when I had my initial experience with this, but it's only been a week or so. I'm beginning to feel as though I'm up for some light exercise-- last time I was up to a daily 30 minute moderate workout on the treadmill before I crashed and burned. That's the good news.

The not so good news is that this seems to have exacerbated my eczema, which I should have expected, since it happened before I crashed and burned the last time, too. I'm taking a slightly smaller amount of the formula than before (3 pills 2x day instead of 4) and have added in 3000mg of fish oil daily, which I use to keep the eczema down (it's a chronic problem I have), and that seems to be controlling the outbreak and preventing new ones, at least for now.

Overall I don't feel as good on this slightly lower dosage, but remember that it also took time for things to ramp up the last time, so will stay with this program for now and see what happens. I'll need to bring the fish oil down eventually, but want to see if I can get to some sort of equilibrium before I start worrying about that.

 

[LBS]

There does not seem to be very much interest in this thread, but I thought I'd update anyway. I woke up this morning with the beginnings of a sinus infection, and decided to take a couple of days off from taking the formula. I am hoping to find some balance between feeling somewhat better and becoming so immune-compromised that I can't continue. That may not be possible, but I am going to continue to try to work with this, as it's the only thing I have ever tried that's given me full relief (i.e. relief that helps all aspects of my problem and doesn't interfere with my sleep or wear off after a few hours, like stimulants do).

In the end, though, it may not prove to be worth it. As with other things I have tried, I am starting to get that sinking feeling that I've discovered the "catch." There's always a catch. And I do caution that playing around with immunosuppressants is not casually advised-- I am willing to take the risks for the chance at feeling well, but I've also been at the brink of suicide feeling so poorly, and I weigh one risk against another. If I can have a shorter life but feel well again-- a risk I am willing to take, but not for everyone. Will continue to update, if anyone is interested.

 

[Jenny]

Thanks for the updates LBS - I for one find this thread very interesting. TCM is just about the only thing that's helped me in the past and I think I was given Gui pi wan, amongst other herbs. Sadly my practitioner moved to the US and although I've tried three others in the UK, they haven't helped at all. A lot depends on the skill of the practitioner, I think.

I'm sorry you're not so good at the moment - hope you feel you can continue with it for a while.

I look forward to hearing more.

Jenny

 

[maddietod]

Yes, please keep posting. I'm subscribed, but haven't had anything to add. Except now - I hope this works out for you, and I'm sorry it's rough right now.

Madie

 

[LBS]

Thanks; I ended up taking a dose this evening because I already feel I'm starting to fade, and I have plans for the evening. Maybe cutting back to half what I was taking each day for now would be better.

 

[LBS]

Another update: I'm now taking 1/2 the prescribed dose (which is 2 teapills 2x daily) along with 1000mg of fish oil, also 2x daily. I'm again at a point at which I have fairly steady energy through the day, better concentration, and-- perhaps best of all-- am waking up each day feeling as though I had restorative sleep (how great is that???) Whereas for as long as I can remember I have had to drag myself out of bed, frequently getting to work late, I am now getting up feeling well soon after waking, and getting to work early.

My eczema continues to remain in check with the daily fish oil, and the sinus infection I was starting to get did not worsen once I backed down to this dosage. I'm going to stay at this dosage for as long as possible and see if this will turn out to be a good maintenance regimen. I don't think I will update this thread again unless/until something changes.

 

[Jenny]

Good to hear LBS. Thanks very much for the update.

Jenny