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Wilson's syndrome?
Posted by: Katherine
Date: July 23, 2002 3:16 PM

I have been unable to work for the past 10 months. A person suggested I may have Reverse T3 so I did a web search on it and found this web site. In Oct, another teacher came down with valley fever. I thought I had valley fever since we have had some of the same bizarre symptoms, but my blood tests for cocci and chest x-rays are fine. CBC, pulmonary function test, MRI of brain is fine. My symptoms are as follows: weakness, extreme exhaustion and physical fatigue, difficulty walking, subnormal temperatures (yesterday temps were 95-97 degrees), had pain/pressure in one eye or the other the first 6 months, but that went a way, had an aching left arm along with so much pain I could not move it for one week, but that went away, blurred, double vision, have gone from being a multi-tasking person to only being able to do one thing at a time and I need to talk myself through that at times. Mobility waxes and wanes, some days I can walk around the block with difficulty. Other days that is too much. I sleep well most nights from 7-9 hours, sometimes a short 30-45 minute nap in mid morning, bloating...I haven't had the bloating the past few days, but I have not been drinking as much water, I am thirsty a lot, have burning/chapped lips frequently, right now shoulders are fatigued as if I have been at the computer for 60 hours a week instead of 60 minutes, somedays I can not sit at computer at all...most likely today because I have been pushing the envelope lately. I am fine if I am lying down, I have shortness of breath with mobility..just taking a shower and getting dressed. I can not take a shower every day...too exhausting. I have had several job changes at work in a short period of time. I was running on overdrive. Also moved to new residence in October that had just been painted. I know there is more but that is all I can recall for now. Poor concentration. Ringing in the ears and lowering of hearing. I have had this before, but it stopped for about 2 years before this hit. It returned with this.

I am looking for background on what needs to be done and the info to give to my doctor in order to help. He is at a loss as to what to do but seems to be willing to work with me.

I also had a lesion on my stomach as the co-worker who was diagnosed with valley fever. Hers was biopsied and determined to be valley fever. Doc's just keep saying since you don't have a fever, your cocci blood tests are negative and chest x-rays fine...you do not have valley fever.

I have also been tested for allergies, and none were found.

Teacher friend is still out of work also. We both have had our breasts swell during this time as if we were getting ready to nurse. Both are not doing bad for 162 year old ladies. HA!

RE: Wilson's syndrome?
Posted by: Katherine
Date: July 23, 2002 8:55 PM

I have also had a thyroid test and I was found normal. I have had an HIV test and tested negative. Heart test was fine. A nutritionist scanned my body and credited me $500 worth of supplements several months ago. I believed they helped, but since this waxes and wanes it is difficult to determine. I also can not afford the supplements at this time. I have changed my diet to raw veggies and juice when I am strong enough. I have cut out diary, white rice, pasta, wheat, corn, limited fruits. An NP I saw for WTS said she thought I had candida.I am taking vitamins and garlic capsules. I had dizzinesss/vertigo with the eye pain/pressure the first 6 months. I use to have migraines, but whatever this is has cured the migraines. I have not had one in 10 months. I have had dizziness/vertigo in the past a few times. I was not able to teach those days. I also had pain in my eye like I have never had before and thought it was a migraine, but different. The Imitrex did not help and it lasted a long time. I had an MRI after that. One lesion was found, but determined not to be noteworthy. That one lesion did not show up on the recent MRI. I was working 40 plus hours a week before this hit. Now, it is a good day if I am able to take a shower and get dressed, walk around the block and fix oatmeal for breakfast before I have to lie back down. I see a neurologist in SF in August for consulation regarding MS and a local opthalmologist for consultation regarding a tensilon test for Mysathenia Gravis in August. My biggest problem is finding a doctor who cares. They are OK the first visit, but don't like to see me twice if I am not well by the second visit. I have tried all the doctors in this area. I live in a small town. I went to the town an hour a way and was banned from that center after I called to complain because the doctor had still not put in the paper to have me seen by Sansum Clinic in Santa Barbara after 3 months of seeing her. I have more stories, but the point is...just telling me to talk to my doctor about it is not working. The current doctor thought it was a good idea for me to go to Sansum Clinic, but we will see if he follows through on it. He also told me not to come in again for a month and has offered no solutions or ideas to what needs to be done. He does seem to be open to my suggestions though for now. He said that he has learned in the past 36 years of practice that most things just go away. I am sure they do. He also said he thought I should at least have a dignosis. I agree. I also have written the HMO that I have and complained and requested help. I have written the Dept. of Managed Care in Sacramento and done the same. Whatever I write goes back to the doctor to be answered. NO accountability. Back to symtoms. I was down for 2 weeks in October. Thought I had the cold/flu or something...also had started taking Herbal Fiberblend, beet and carrot juice from AIMS, moved to new residence, moved to new classroom and started taking different supplement. Had headaches in Sept/Oct that were different than before...rubberband feeling around head. Missed work because of them. That is why I had the new supplements. Drove 2 hours to see the nutritionist...and legs were very stiff. Very difficult to walk. She tested me for that and gave me supplements. Did not feel it was a concern. Said I did not test for MS or Valley Fever. Found virus' and a parasite. After 2 weeks of being done, I went for a morning walk like I did before coming down with DLDD. I was fine. Started folding clothes and felt like I was climbing Mt. Everest...labored breathing, difficulty standing etc. Took a break and had lunch. Went to old residence to move rest of things. Had difficulty walking up the sidewalk. Went to friends car, lay down, she removed some of my things. Felt as if I was drunk when I returned to new residence. Body was too weak to lean against wall. I had to lie on the floor. Next morning, I woke up feeling OK again. Went for a walk. Five or 10 minutes into the walk, had difficulty moving legs. Talked my legs back home. Things have not been the same since. I will rarely have a day when I am functioning normal. It is great. But they are very rare. In May, I was able to stay upright for about 3 hours, lie down for an hour and then be upright for 3 hours again. I was not normal during those times, but I did have mobility around the house. In June and July, I have had to lie down a lot. I don't know if it is the heat or not. I do have air conditioning. A co-worker named this the Dreaded Leaded Duck Disease when I was trying to tell her what it is like. I look fine on the outside, but something is wrong on the inside. I tried to go back to work twice. Both times I made it through the day, but couldn't move off of the couch for several days after that. This continues to happen if I have over done it. I am learning to try and pace myself except I never know how much I can do each day.

RE: Wilson's syndrome?
Posted by: Ron Kennedy, M.D.
Date: July 24, 2002 3:05 AM

Of course from a medical-legal standpoint I can't diagnose you as I have never actually seen you, but I can say that many cases I have seen and treated presented in similar condition with similar complaints and they turned out to have what I call intermittent acidosis. When alkaline reserves are almost exhausted one is on the verge of collapse. When that fine line is crossed and the blood edges toward acidity, fatigue and many bizarre symptoms set in with a vengeance. The cause of intermittent acidosis is not the same from one person to the next, but the most common cause is infection of the gut wall which produces persistent dysbiosis and this is where the acid is coming from in these cases. A few years ago someone noticed that these people grow a lot of yeast and it was dubbed the "yeast syndrome" but really this is a very poor name for it as the yeast play a minor role in etiology. They thyroid system can be involved and even Wilson's syndrome can be present, but this is not necessary (and is not common) to produce these symptoms. Mercury poisoning from dental amalgam is usually involved, but this is not necessarily present. Unfortunately, even people who recognized the reality of "yeast syndrome" have few clues about how to treat it. They try to kill the yeast which is analogous to shooting the TV because it has an image of Osama bin Laden on the screen. Here is an article which will take you deeper into the subject:

[www.medical-library.net]

RE: Wilson's syndrome?
Posted by: Katherine
Date: July 24, 2002 5:46 AM

Thank you for replying so quickly. I printed out the info on Mercury Toxicity. At this point, I am not sure where to go from here.

I do recall the valley fever doctor asking me if I had recently had any dental work. I think it was 2 years ago or more that I had two new front teeth put in when I was living on the coast.

I did go to see a dentist locally after visiting the valley fever doc and asked the dentist about amalgam mercury poisoning. He said that he didn't feel it was a problem and had it in his mouth. But, he refused to work on me until it was determined what I had.

We have had one teacher out with valley fever which included pneumonia. Two others hospitalized with pneumonia or as one of them put it something..she wasn't sure what.

We all worked in the same building. I am wondering if there was something at work that could have caused this. Last I heard, the air quality was being checked at work because of the unusual amount of teachers who have had respiratory problems in that building.

It is taking all I have to sit up and try to process this right now. I will read the info again later when I am lying down and see if I can come up with step one.

I do have a dentist appointment in August with another dentist. I am thinking I need to call first to see how he responds to the idea of removal of amalgam and if the insurance will cover it.

And can my primary doc give me the DMPS test?

I also had a routine colon check and I was determined to be fine. But, it makes sense that the microscopic holes would not shown up.

RE: Wilson's syndrome?
Posted by: Ron Kennedy, M.D.
Date: July 24, 2002 6:18 AM

People vary widely in their ability to tolerate mercury. Perhaps your dentist can tolerate it well. That proves nothing about the next person's ability to tolerate it.

I advise my patients to never, ever go to a dentist who would even dream of putting metal into a human body, especially mercury amalgam. That means one must find a biological dentist (uncommon). That type of advice also goes for doctors. A doc who is not already familiar with a DMPS Challenge Test is sure as heck not going to know how to treat such a problem. Also, never have a DMPS test until all the metal is removed. You will see why all this advice when you read the article.

We have a couple good biological dentists here in Santa Rosa. As you are apparently in Northern California, I advise you to come see the best docs and dentists in the country for treating such a situation as you apparently have, namely me and my dentist associates. 707-591-4088.



Edited 1 time(s). Last edit at October 4, 2011 6:32 PM by Dr. Kennedy.

RE: Wilson's syndrome?
Posted by: Katherine A. Morrison
Date: July 24, 2002 5:20 PM

I live a couple hours east of Fresno and west of Paso Robles. I do have Delta Dental at this time, but it will end in September unless I am able to get back to work for a couple of weeks at least.

Getting back to work is not realistic at this point unless someone could drive me there and I could lie down the biggest part of the time. My body is too weak to hold itself up for very long.

I have yet to read the paper work. Eye sight is still not in focus yet. I am getting fairly good at typing with my eyes closed and my body slouched over for a short period of time.

I will lie down, try to regroup and figure something out here. They say in every obstacle is an opportunity or something like that.



This Thread has been closed

 




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