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Variation in symptoms - Judy?

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Variation in symptoms - Judy?

Posted by
Sonja on July 26, 2001 at 07:24:36:

I was so lucky to find a TCM practitioner/ acupuncturist in Norway where I live, even in my city. My concern was namely that there weren't any.

My second concern is...going to doctors. I always feel uncomfortable, even if they are alternative ones. I do rely on their ability to make a right diagnosis, but the state of my health varies to a large degree. Symptoms come and go; some are constant, some periodic, some seemingly unrelated to others. I have just started a symptom diary. And the symptoms are very different from those I had, say, last year, or the year before that. But one thing is certain; whatever I ever have is definitely worse just before my period.

According to what I read in your posts, this both does and doesn't matter. If the condition is diagnosed correctly, the symptoms will weaken or resolve - also before the period - but on the other hand they do observe and I do look differently and feel differently in different periods of time. And if asked, I can't ask straight away: this is how it is. All I can say is: Sometimes it is like this, other times like that.

My background, too, is complicated. To put it short: I have spent 3 years on getting rid of candida/parasite long-term infection, after I found out of it by myself. My major symptoms were mental/ personality problems, raging hypoglyceimia, insomnia, rage fits, hypersensitivity etc. After the initial 6 months of diet, probiotics, and especially after anti-parasite herbs - all gone. Further 2,5 years of digestion problems, now much better. Went through a profound psychological change, but the cure has been quite hard on the body. Don't know if liver/kidney problem is a consequence of hard anti parasite cures or if it was an underlying problem all the time. (Have been a sick child, always ill, so it may as well have been).

So when I finally understood my liver was weak and/or toxic I recently tried to support it. I also had problems with gallbladder (stones or sand) which led me to liver. My liver improved, and the gastrointestinal problems. Then my kidneys collapsed. But it took me a while before I recognised the symptoms, ignorant as I am... and worse, recalling these symptoms I realised that the kidneys were always involved, since childhood. After reading your (godsend) posts, realised I have problems with spleen too.

The 'fleeting' nature of the problems have made me think that Chinese medicine will be the right solution.

The question is: are all the things I mentioned here relevant - at all - to a TCM doctor? Should I mention some of them…?

Thanks for taking time to answer. I keep reading all your postings and appreciate that you send them.

Sonja



Re: Variation in symptoms - Judy?

Posted by Judy on July 26, 2001 at 23:43:31:

In Reply to: Variation in symptoms - Judy? posted by Sonja on July 26, 2001 at 07:24:36:

Multiple symptoms that wax and wane in severity and come and go are a classic symptom of CFIDS. This is something you may want to research, especially since candiasis so often is associated with CFIDS. So is hypoglycemia. So are sleep disturbance (both insomina and hypersomnia), mood swings when the person is the sickest, and hypersensitivity/ allergies.

You may also want to research FMS. Some experts believe that FMS (fibromyalgia syndrome) and CFIDS are the same thing. If the pain predominates, the person gets the FMS diagnosis; if fatigue predominates, the person gets the CFS/ CFIDS diagnosis. Certainly there is a great overlap between the symptoms of the two, and the last I read something like 85% of those diagnosed with CFIDS also are diagnosed with FMS.

From a TCM standpoint, Bob Flaws has discovered that the Organ systems most often involved in FMS are the Liver, Heart, Spleen, and Kidneys. (The Heart often is involved in sleep disturbance.

BTW, the CFIDS started out for me as mono-induced hepatitis 6 months after gall bladder surgery because of stones. In TCM gall bladder and kidney stones are viewed as Damp Heat and Phlegm conditions. (Wish I had known way back then that there are herbs that can dissolve stones and other things that can help stones to dissolve and prevent them from forming.)

My symptoms always got worse right before my period. They don't in all female PWCs, but I was one of the ones that definitely got hit hard. In my case the worsening of symptoms were linked to a need for magnesium and Mg taking a nose dive right before my period. Mg supplementation helped a great deal.

BTW, there are different causes of PMS from both Western and TCM standpoints. I don't remember all the details of the Western findings, just that Mg deificiency is related to one of them. I believe problems caused by too much salt is another type.

There are different PMS patterns recognized in TCM too, but the number one syndrome that occurs in almost all of them is Liver Qi Stagnation. The swollen and painful breasts, the cramps, the extreme mood swings, etc. are all related to Liver Qi Stagnation. (There can be other causes of some of the symptoms like cramps (like Cold for one), but this particular constellation of symptoms is linked to Liver Qi Stagnation.

Allergies and hypersenstivity to foods, herbs, medicines, anything ingested often have a Root of Spleen Deficiency in TCM. The Liver also can be involved as can the Kidneys. In the case of allergies to inhaled substances, the Lungs also need to be considered.

Everything you mentioned (and more) is relevant in both TCM AND in Western medicine. I want to repeat again that multiple symptoms that come and go and wax and wane in severity are very characteristic of CFIDS. One thing that I tell healthcare professionals is that even if the patient/ client comes in with a page long list of symptoms, if you suspect CFIDS, always ask what the person is not telling you. I can guarantee from personal experience and from the experiences of other PWCs that we don't tell our doctors everything even when we tell them a long list of symptoms. What we tell them is what are the most pressing and most debilitating symptoms at present. The only examination I ever had that covered just about everything was the TCM examination by the herbalist. And he got the best results of any healer. The results were so good that I ended up learning TCM. The more I learn, the more I finetune treatment, the more I continue to improve.

I too am very leery of doctors, even alternative ones because to be blunt, I have been treated so badly by so many doctors plus I've had loved ones who did not have CFIDS but had life-threatening problems like cancer treated so badly. I also have been treated very well by some doctors, nurses, and other healers who have made a big difference for the better. But any time one sees a doctor or any other healer, it's like a craps shoot (gambling). This also applies to TCM healers, especially now that TCM is starting to catch on in Western countries and is in danger of becoming faddish. This is why it is so important that individuals learn all they can from many sources. Even when a doctor or other healer is caring, competent, and conscientious, it's impossible for one individual to know everything. The best healers and even the good ones appreciate patients/ clients who do a lot of research and can teach them things that will not only help that individual but others as well. Learning healing and being a healer is an on-going process that never ends if the healer is really a healer and good at what s/he does.

Judy





Re: Variation in symptoms - thanks, Judy

Posted by Sonja on July 27, 2001 at 04:36:38:

In Reply to: Re: Variation in symptoms - Judy? posted by Judy on July 26, 2001 at 23:43:31:

Dear Judy,
You answered so well to everything I wondered about - and more. I really appreciate it.
I so agree with what you said about healers. Normally I have no problem with authority anxiety, so I either like them or leave them. Still it can be mentally exhausting. I can emphatise with your bad experiences with doctors, and I hope your loved ones managed to recover.

Thank you also for advice on PMS and other conditions. I only wrote very shortly of my background, so I might have given you a wrong impression of where I am now in the process.
I have actually come very far and researched quite a lot - apart form TCM - mostly on my own. I was definitely a CFIDS sufferer, can't say I would classify as a FMS sufferer.

But even when I was at my worst and on a sick leave for a year, I could still mount enough energy to get up and do things. Among many other things I have read work of a certain Dr. Tintera on adrenal exhaustion, and came to a conclusion that I must have strong adrenals. So in some ways I was not a classical CFIDS sufferer either.

What I forgot to say was that I have improved tremendously during the last 3-4 years. The symptoms, which made, just as you said, a long list, that was by no means final, have decreased by say, 80 %. The severity as well. For instance, while I used to have a two weeks of PMS and a terrible period week, I now have only 4- 6 days of relatively few symptoms that I can easily cope with - in comparison. My period, which was down to 2 days, is now 5 days, and the last 6 months it has been pain-free. This is mostly thanks to my (US educated) chiropractor/ reflexologist who put me on Dong Quai and on Licorice. This worked very well. I was apparently not one of many women who are oestrogen dominant, but was oestrogen deficient.
Dong Quai, which I took for a year, helped also my liver, which was toxic and weak.

But there are still some things that needed to be discovered and dealt with, since PMS is, I know (bought all books on the subject at amazon, but only one was good) really a combination of many different factors, some of them unrelated to each other. What you said - about magnesium taking a nose dive right before - rang a huge bell, because I do feel that something takes a nose dive, only I never found out - what. Since some of the problems are slight constipation and water retention problems, it might as well be that. I guess I can try a supplement and see if it makes a difference. But on the whole, I have now a minimal PMS compared to before, and especially after a liver detox (with milk thistle, flax seed oil &cottage cheese, castor oil packs, lecithin etc.).

Speaking of liver detox, I only started it because I had symptoms of a gallbladder attack while studying for an exam this spring. Generally studying is bad for my physical health, since it involves a lot of sitting and not eating as creatively as I should.
The symptoms were a terrible pain on the right side of stomach, constipation, pale yellow stool and general feeling of anger. We printed a Reflexology chart and my husband put the pressure on different points on my feet. When he found the gallbladder I screamed, but the treatment helped. The pain attack lasted for about 3 days, and it took about 10 days before there was any bile in the stool. I was scared, but still did not want to go to the regular doctor for an ultrasound examination. I could get my suspicion confirmed, fine, but apart from that, they have little to offer. So I started reading again and that led me, again, to liver. Apparently improving the liver function would help the GB problems. And it did. But then my kidneys got involved. (Liver detox might have been too harsh on the kidneys, too.).

This is getting rather long, but to explain finally how I got to TCM… After the exam, I went on holidays. This meant a 3-day journey by car to Croatia, the land of my origin, and I was exhausted to start with. The journey was hard on the kidneys and the spleen. It was eventually my best friend (she is also a buddhist monk) who has a basic knowledge of Chinese medicine, who pointed me to kidneys. Indeed I have been eating cold food and drinking cold drinks, was dizzy and had double vision, and started to wake up at night again….and there were several other things that all just clicked, and I could see that I needed to do something about my inner organs, only this time I felt I could not do this on my own.
I saw again the complexity of my condition and for the first time I realised how other conditions can influence me in unimagined ways. There is little I can do about cold weather in Norway, or having to undertake long journeys, which according to my friend, affects the Spleen.

When I got back home I found your postings on the BB, and since many of your symptoms were similar, I was reassured that I should take it all a step further and try TCM. I completely agree with you that self-education is crucial, and will try to read some books ASAP.

Finding a healer that will learn together with you sounds like a dream come true. The guy I was recommended is Chinese. He was described as a TCM doctor who has been practising acupuncture for 10 years in Norway. It sounds reassuring, but… we'll see.

Also I have a lung problem unexplained, persistent spitting of white stuff. I now wonder if my kidneys are so bad that the lungs take over and detox. This (and the stones, and some other things) points to Phlegm. And …while I previously had problems that point to excess of something, it now seems the other way round. All of this is probably somehow related, but - I will waste no more time bothering you, and will try to get it all properly diagnosed.

Again, many thanks for taking the time to answer, it was really helpful. I am impressed by your knowledge and by your ability to give thorough answers. Hope you are doing well yourself these days.

Best regards

Sonja




Re: Variation in symptoms - thanks, Judy

Posted by Judy on July 27, 2001 at 10:44:16:

In Reply to: Re: Variation in symptoms - thanks, Judy posted by Sonja on July 27, 2001 at 04:36:38:

Don't worry, you didn't give me the wrong idea about where you are. You've made tremendous progress and want to make more. My husband kids me when I announce a new goal healthwise. He'll grin and say, "Never satisfied, are you?" I'll grin back and say, "Nope, not for long." This is a good kind of "dissatisfaction" that results in even more improvement.

Interesting that the gall bladder attack occurred while studying. It's recognized in TCM that different Organs are particularly vulnerable to different "emotions". The Spleen is particularly bothered by pensiveness and by too much studying. Furthermore - getting into 5 Element Theory - there is a Victor-Vanquished relationship between the Liver and the Spleen. The Victor-Vanquished relationship is an inverse relationship. If the Liver is out of balance and too active, this has weakening effect on the Spleen. The 5 Element way of expressing this is "Wood (Liver) Over-acting on Earth (Spleen). This corresponds to the Organ Theory disharmony of Liver Invading Spleen.

But sometimes, this V-V relationship gets reversed, and "Earth (Spleen) Insults Wood (Liver). What's happening here is that the Spleen is failing to transport Fluids and Dampness is accumulating. The Dampness is accumulating and "attacking" the Liver and Gall Bladder and interfering with the smooth flow of Liver Qi and under the wrong circumstances creating Phlegm in the Gall Bladder which can become gall stones.

For readers new to TCM, the Liver and Gall Bladder are "coupled" Organs in TCM. They're both classified as belonging to the Wood Element. This sounds real esoteric, but what the "Elements" are are different aspects of energy. The "Wood" aspect of energy can be compared to energy flow in the spring time. It's a time of increasing Yang energy after the quiet and turning inward of the maximum Yin time of the year (winter). Seedlings are bursting forth out of the earth, animals are delievering young, etc. It takes a special quality of energy to accomplish this, and the symbolism the Chinese choose was that of Wood. The predominate atmospheric energy in most places in the spring is wind.

Then spring passes into early summer, the most Yang time of the year. This season is classified as Fire, and the Fire systems are the Heart and Small Intestine (also the Pericardium and Triple Heater). Heat is the predominate atmospheric condition at this time of year.

Late summer arrives, and this is the Earth time of year. The predominate atmospheric energy (in many places) is Dampness. The Earth Organs/ Meridians are the Spleen and Stomach. (Note: Late summer in a lot of places isn't characterized by Dampness, but the relationship between the Spleen and Dampness still holds. The Spleen is particularly vulnerable to Dampness, and a weak or damaged Spleen will give rise to Dampness. On the other hand, the Stomach likes some moisture and can be damaged by too much Dryness.)

Fall follows late summer, and this is the Metal time of year. This is a time when Yang is waning, and Yin is waxing. The Organs/ Meridians are the Lungs and Large Intestine. People, animals, nature are starting to slow down.

Winter is the most Yin time of year and is symbolized by Water. The Water Organs/Meridians are the Kidneys and Bladder. The Kidneys are especially vulnerable to Cold. The Spleen also does not like Cold. Cold can be very damaging to Yang, just as excessive Heat can damage Yin. Yang heats and activates; Yin cools and calms.

For those wishing more info insight into the symbolism of the Elements, check out Dagmar O'Reily's Newsletter From China.

Getting back to the Liver-Spleen relationship in TCM, what this Wood Over-acting on Earth and Earth Insulting Wood means in practical terms is that Liver/liver and Spleen/spleen problems frequently occur together. They definitely did in my case. The CFIDS started out for me as mono-induced hepatitis 6 months after gall bladder surgery for stones. Through the years it also meant that my liver and spleen both swelled. I would get pains in my right side in the area of the liver and sometimes these would be followed by pains in the left side in the general vacinity of the spleen. What lead to my being diagnosed with mono (yet again) during the 4th major flare-up of the CFIDS was when I made the comment to my doctor, "I've come to dread pains in the left side because they always signal I'm about to get sicker." She replied, "I want a monospot test on you." I didn't want it to be mono again, and I started giving her all kinds of reasons why it couldn't be mono again - my age, I wasn't in school, I'd already had mono several times - and she repeated, "I want a monospot test on you." Yeah, it was positive (again), and that was the day I said, "Screw this," and headed to a local health food store for some advice on alternative methods of dealing with mono. That was the start of my really getting into alternative medicine big time. Before I had just dabbled until I got some relief. By that time (19 years of this), I was tired of waiting for the allopathic prince to come and save me and restore me to full health. It took me a long time to figure out that prince was never going to show up, or if it did, it would be after my lifetime. I was a slow learner.

Mixed Exess and Deficiency problems are very common, and sometimes one is so bad as to mask the other. Internal Dampness is a mixed Excess-Deficiency pattern. The Dampness is Excess, but what gave rise to the Dampness almost always is a Deficient Spleen.

Standing in one spot too long is damaging to the Spleen. So is overwork. So is excessive worrying. The Spleen is most vulnerable to Dampness, but also doesn't like Cold.

There is a "Mother-Son" relationship between Earth (Spleen) and Metal (Lungs). The Mother-Son relationship is a direct one. If the Mother (Spleen) is Weak, it can't supply the Lungs with the Qi and other things they need. In TCM, the Spleen extracts the Grain Qi from the food one eats and carries it to the Lungs where it mixes with the Air Qi extracted by the Lungs to become the general Qi resevoir of the body. If the Spleen is weak, it doesn't extract or transport the Grain Qi. Tonify the Mother in order to tonify the Son. Take care of the Spleen Deficiency in order to strenghten the Lungs.

The Kidneys can also be involved in breathing problems. There is a special variation of Kidney Yang Deficiency called Kidneys Refusing to Grasp (or Receive) Qi. In 5 Element terminology this is Metal Not Generating Water. Lung Qi is supposed to flow downward. It's assited in this by the Kidneys. If the Kidneys are weak, they fail to grasp or receive the Qi. The Kidneys will need to be strenghtened. If this is the problem, pressing on the acupoints Kidney 27 will help. This point is located right under where the collar bones rise slightly before connecting to the breast bone.

I'm doing well these days. I'm to the point where I can do several hours of physical labor per day as long as I take frequent rests and don't over-do to much. This includes gardening, painting, carpentry, etc. (I like to build and repair things around the house.)

Judy



Re: Variation in symptoms - thanks, Judy

Posted by Sonja on July 27, 2001 at 13:18:05:

In Reply to: Re: Variation in symptoms - thanks, Judy posted by Judy on July 27, 2001 at 10:44:16:

Wow. Little as I know about this, and esoteric as it sounds, it does already make sense!

In the meantime I have ordered 'The web that has no weaver' and am going to check the web sites you recommended. By the way, this is because I spent half a day finding everything you posted and saving it under subject names in a word catalogue. I have a tendency not to give up before I am finished, and you described so well what that may lead too...anyhow, I was truly intrigued by what I just skimmed through and will read it properly soon.

I rang the TCM practitioner today and it turned out it was a She not a He. She only works two days a week, so I'll have to phone next week. Now I'm really excited about it.

I can relate to quite a lot from your experience, although it is also quite different from mine.
I took the charge of my health when I was so ill in 1997 that my GP of 10 years (of the silly-pill-pusher kind) said that Psychiatry was the only solution for me. That was never an option to me, and luckily I got access to the Internet, at just about that time. It all started when I typed hypoglycemia and off it went - the search that is by no means over yet.

I am really lucky - and feel an immense happiness - for being alive, since I was near death quite a number of times, yet now I feel as good as I never did before. Initially I was bitter and disappointed, for wasting so many years of my life (was 35 when I found out of it all), but I quickly accepted it and am today grateful for all the knowledge I got. Having succeeded was good for the self-esteem too.

While reading your posts I found out about your mother and was so sorry to read that. With risk of getting too personal, I'll merely comment that it made me reflect over the fact that my father died at 44. Supposedly of a heart attack, but not really having had a heart disease previously. He did have serious problems with his 'nerves', but did not smoke, drink or drink cofee, and was very careful with what he ate. That too was in the sixties, but I was only six, so I don't know much about it.

This is luckily a different time, and I am grateful for the increased availability of information. Only, it is not easy to find our way in the Info Jungle. You are a wonderful guide - thanks again! I was really glad to hear that you are doing well and are able to spend time out in yoyr garden, even doing small jobs!

Best wishes

Sonja



I want to emphasize something you referred to for others

Posted by Judy on July 28, 2001 at 02:31:31:

In Reply to: Re: Variation in symptoms - thanks, Judy posted by Sonja on July 27, 2001 at 13:18:05:

I want to emphasize for others that CFIDS most definitely is NOT depression and will respond poorly to many treatments for depression. In fact, one of the treatments - exercise via Cognitive Behavioral Theory - can make true CFIDS a lot worse than it was.

Having said this, I also want to say that yes, being depressed can be a part of CFIDS, but CFIDS is not depression. The depression - or at least feeling blue and down - can arise because the PWC is losing so much, especially if s/he is experiencing the ups and down in energy levels. One day you're able to do something, and the next day you're not. Things like this can cause a person to be blue. Also, PWCs often have to drop out of school, quit jobs, etc. Sometimes relationships go sour because of the ill health.

Also, depression in CFIDS can arise if the PWC (Person With CFIDS) also has an active viral infection, in particular Epstein Barr. One of the possible symptoms of mono is the person will feel very depressed. No amount of talk therapy or antidepressants is going to relieve this depression because increased cytokline production is causing it. What will relieve it is getting the viral infection under control and regulating the immune system. In a way this particular depression is protective (as long as it doesn't get too bad). What a person with EBV desperately needs in order to heal is rest, and this particular kind of depression does encourage rest. (Just like fever as long as it doesn't get too high will help to kill pathogens, just like pain in a broken foot can keep you off it until it's set and can heal properly, etc.)

Sometimes the older antidepressants like Norpramine are given, and they can help some PWCs. But, they will not cure the CFIDS, and PWCs require much lower dosages than the usual ones. Also, there are cases where these drugs will actually trigger depression in a PWC when none existed before. (PWCs tend to react to many common drugs in unexpected ways.)

The reason I'm so concerned that readers understand that CFIDS is not depression is because thinking of it as depression can interfere with treatment that does work and can even make a PWC a lot sicker than s/he was.

One of the hallmarks of CFIDS is that exercise, or rather over-doing physically, will make the PWC sicker. From a TCM standpoint, CFIDS often is a mixed Deficiency/Excess pattern. It's typical for PWCs to suffer Qi Deficiency (and/or Blood Deficiency, and/or Yin Deficiency, and/or Yang Deficiency). The Qi simply isn't there, and pushing on regardless of how one feels is going to deplete the Qi still more to where in some cases there's not enough for all basic bodily activities. Also, overdoing physically can damage the Spleen still more, and the Spleen plays a critical role in extracting Qi from food and transporting it in the body. As old-fashioned as it sounds, sometimes the body needs rest to recharge from both a Western and a TCM standpoint. Not only is rest sometimes critical in recharging and accumulating Qi, it can be critical in increasing Yang and Yin in the body.

When CFIDS is misdiagnosed as psychological, there is a tendency for people to push on regardless, and this can be one of the worst things possible for a PWC. I know, because this is how I ended up with the 4th major flare-up which was the sickest I've ever been. I got tired of no one being able to tell me what was wrong and figured maybe it was depression like some said, and I would just ignore it and push on regardless. As a result of this I ended up so sick I was having to crawl to the bathroom at night and didn't even have the energy most of the time to sit up.

It is possible for PWCs to exercise IF they are first brought up to a certain level via herbs, nutrition, rest, etc. first. What impressed me so much about TCM was 3 weeks after starting on the herbs, I had the energy to start a daily, moderate exercise program that specifically targeted certain health problems (like some yoga exercises for the recurring thyroid problems, etc.). I want to stress the word "moderate" here. Also, some exercises are better for PWCs than others. Aerobic exercise is a definite no-no until you're cured. Among the safest exercises for PWCs are stretching, yoga, weight lifting, and Qi Gong. But, there can be problems with the weight lifting until the Spleen is brought up to a certain level. The Spleen plays a big role in muscles strenght and mass. If the Spleen is too Deficient, no amount of weight lifting is going going to bulk a person up or even make muscles stronger until that Deficiency is corrected at least some. All it's going to do is weaken the Spleen still more and cause muscles to become even weaker. When a TCM healer is observing a client, if the muscles appear poorly defined, if the movement appears weak, the healer automatically suspects Spleen Deficiency and then rules in or out.

There's been a debate in TCM for centuries about which has the greatest overall impact on health, the Spleen or the Kidneys. Both are very critical, and the imbalance of one eventually will impact on the other.

Judy

Judy



Re: I want to emphasize something you referred to for others (Archive in CFS.)

Posted by Walt Stoll on July 28, 2001 at 09:58:55:

In Reply to: I want to emphasize something you referred to for others posted by Judy on July 28, 2001 at 02:31:31:

NMI

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