MCTD?

I am a 48 year old man diagnosed with MCTD 10 years ago.This was due to a very high ANA reading.My symptoms
over the years have been full body twitches,periodic weakness in right foot and right hand,numerous prostate infections,pvc's,etc.My current symptom is really worrying me.I have been getting a lightheaded/dizzy feeling.It
really isn't dizziness but kind of in between.It only happens periodically but seems to happen every day at some time.
Is their anyone else going through this.I would really like to converse with other MCTD people.Please let me know.

[krndhn]

I am a 65 year old female with MCTD., diagnosed a year and a half ago.  I don't think my rheumy is sure that's what is is, but that's the name he pinned on it!  I have symptoms typical of lupus, sjogrens syndrome  (which I have a definite diagnosis of) and myositis.  I too have the recurring dizzy/drunk symptoms.  It seems to me it's more of a dizzy,nauseous feeling, and other times like I'm drunk, kind of staggering and unable to get my land legs.  It's been going on for several months now, but my rheumatologist isn't concerned, so I just deal with it.

My rheumy is not very forthcoming with answers, and kind of brushes aside any new symptoms I have.... not real happy with him but he's the only one within 70 miles.  My most concerning symptom is the severe muscle weakness and pain.  Do you have that?  I've always been very active and overnight  the walking intolerance happened.  I can't walk more than 100 feet before my leg muscles become extremely painful and become so weak they simply collapse.  My GP has given me a handicapped tag for my car just so I can go   grocery shopping..

I guess I'm not much help to you, but I can relate.  Hope you get some answers and if you do, let me know.

[msnova74]

I am a 34yo mother with MCTD.  I also get light headed around the same time every day.  We found that it was due to low blood sugar.  I now have to nibble several times a day, and really watch my sugar levels.

Also my symptoms really come and go.  When I am really flaring I will get the most bizarre infections.

T

[floridagirl11]

Hello! I think I might be able to help some or all of you. I will have to post this in several segments b/c it is so long. Here is my story:

I had not felt good for about 8 years, although my symptoms started off as vague ones and I was able to ignore them for a long time. I would complain to my doctor and she ran all kinds of tests but everything looked just fine. At that time, I was in law school and so she figured I must be totally stressed out. She told me I had anxiety and started to treat me for that. I didn't feel that that was the case, but she was the doctor and so I just went along with it. I never really felt any better though and so the only thing that happened was that any time I told someone I did not feel good, they thought it was all in my head. Little by little, I lost muscle strength and became more and more fatigued. My hair started falling out, I had some joint pain, etc. all my lab work kept coming back normal, however, so no one thought anything was really wrong with me.

This past January, I was under a tremendous amount of stress. I woke up one morning and could not get out of bed. I was experiencing all my symptoms 10 times worse than what they usually were. I felt like a new born baby--I could not sit up and had no muscle control. I was having internal and external tremors--sometimes it felt like I was leaning up against a generator and my body was being vibrated from the inside out; other times, I could actually see different parts of my body shaking but there was nothing I could do about it. My joints hurt terribly, I would bruise easily, I couldn't concentrate, was forgetful, my muscles twitched, I had headaches, acid reflux, dizziness, fatigue, weird sensory feelings like burning, tingling and numbness, my hair was falling out in droves, I was gaining weight, had cystic acne---it was not a pretty picture.

At that point, I started to research my symptoms online and everything pointed to an autoimmune disorder. I went to my doctor and asked that she test my ANA levels. Sure enough, it came back that I had elevated ANA levels with a 1:160 titre and a Nucleolar pattern. She was shocked. I was happy to know I may have had an actual answer as to what was going on with me! I immediately went to see a Rheumatologist, who did not believe my lab results because they were so "rare" and because he had had several patients that had come in over the last few months with that same pattern. To make a long story short, my labs came back for the second time just the same and he diagnosed me with Scleroderma and Lupus--two non-curable, chronic diseases. He told me things were only going to get worse and that besides putting me on steroids, there was nothing he could do for me. It was pretty depressing to be 30 years old and think that your life was pretty much over.

I felt terrible, but I was determined not to have to be put on steroids because I knew that they could do terrible things to your body. What's more, I did not have the hallmarks of either Scleroderma or Lupus (no hard skin, no mylar rash, no photo-sensitivity). Things did not quite fit together in my head or in my heart. I was praying a lot for direction (and because I felt so bad) and I started to research what other things might be caused by my "very specific" Nucleolar pattern. God was really good to me because he started to put medical journal articles in my path that I was able to freely access and actually understand!

One particular medical journal article that I was directed to was about rats that were exposed to low levels of mercury. These rats became sick with Lupus-like symptoms and started produce the very specific Nucleolar antibodies that I also display. 'Mercury?' I thought, 'Well, that's fine for the rats that were actually purposely exposed to it, but where would I have ever picked up something like that? Surely it couldn't be from the mercury fillings in my mouth that the American Dental Association (ADA) and FDA both says are completely safe!'  At that point, I began to research metal fillings and their potential effects on people's health.

I found some very interesting information online with regard to Mercury poisoning. It was the very first time I have seen all of my symptoms described together. It is like I wrote it myself:

"...The primary symptoms of mercury-poisoning are vague psychic ones. Short-time memory deteriorates. You will find it difficult to concentrate on tasks which require attention and thinking. It is easier to execute tasks that are well known rather than to learn something new. You avoid social contacts which demand that you get out of your introvert behavior. You loose your temper easily and switch between different moods for no particular reason. Little by little, a more physical kind of exhaustion is added to the condition. More and more effort is required to initiate activities and you sometimes break things due to inability to co-ordinate your movements with your visual impressions (ataxia). Headaches, minor involuntary muscle spasms or ticks within groups of muscles can also appear. Hands and feet become easily cold, attacks of dizziness or vertigo can occur, and periodically you may find it difficult to focus your eyes and to see clearly. Joint and muscle pains, stiffness, lumbago (lower back pain) and similar symptoms often appear at an early stage. They can be caused or increased by low availability of the trace element selenium. Nervous heart, sometimes accompanied by a week pulse, sometimes by a hard pulse, creates a feeling of anxiety. You don't sleep well, you wake up stiff and never feel thoroughly rested. As a whole, you need more sleep than before, and you are constantly tired. Some individuals develop pronounced intestinal and stomach disturbances. Bloating is common and diarrhea can alternate with constipation. 50 to 200 micrograms of mercury from each amalgam can pass daily through the gastrointestinal tract. There is usually irritation where mercury first interacts with tissues. The upper respiratory tract easily becomes chronically inflamed and symptoms in mouth appear. The gums bleed when you brush your teeth, red and white irritations (lichen, leukoplakia) arise, blisters and sensitivity to certain nutritives develop, your teeth ache, the whole jaw can become more or less inflamed, and some persons develop sinusitis. Metal taste in your mouth is a direct sign of metal-poisoning (mercury, copper). The more poisoned you are, the more serious and chronic your problems become. The pituitary gland will be affected, which often leads to frequent urination. When the thyroid gland is affected, secondary effects on the metabolism can appear. Both glands accumulate mercury. Neurological symptoms such as numbness, hypersensitivity and paralysis exacerbate. It is often hard to determine if the cause is in the nervous or circulatory systems..."

[floridagirl11]

I quickly learned that mercury is more poisonous than any other metal on earth except for plutonium. Although the safety of dental filling material containing mercury has been debated in dental circles since the 1800’s, the official opinion of the ADA is that when mercury is combined with other metals and used in dental amalgam fillings, the toxic properties of mercury are rendered harmless. However, there exists a growing awareness among health care practitioners and researchers that this is not the case and that a significant amount of mercury is released by these fillings to cause health problems, especially in susceptible individuals (like myself). Research has demonstrated that mercury vapor is continuously released from amalgam fillings in measurable quantities from the moment fillings are inserted into teeth. Mercury is inhaled, swallowed and absorbed directly in the mouth. I would urge everyone to watch this video when you can: http://iaomt.org/videos/

Studies have linked mercury exposure with a number and variety of illnesses including allergies, chronic fatigue, Fibromyalgia, MS, Lupus, Autism, Alzheimer's, depression, anxiety, GI disorders (such as IBS and Chron's), immune systems suppression, thyroid problems, periodontal disease, neurological problems, reproductive disorders, birth defects, kidney disease, heart problems, hypertension, respiratory disorders, skin disease, and the list goes on and on.

Mercury can interfere with any process or organ in the body, since it is poisonous to all cells, but it has a marked effect on the immune system. This has been shown by research indicating the presence of mercury amalgam fillings in the mouth reducing the immune system efficiency by one-third to one-half. If a person has a chronic health problem for which a cause has not be found and mercury fillings are present in the mouth, mercury toxicity may be a contributing factor. It is also important to note that while someone like me may be genetically predisposed to extreme mercury sensitivity, others may be toxic and not even know it. Somehow, someway though, if you are toxic, it will eventually catch up with you. Click here for a comprehensive list of mercury poisoning symptoms: http://curezone.com/dental/mercury_symptoms.asp

At this point, I must disclose to you that while the ADA still touts mercury amalgams as being safe, it seems that they have the most to gain by making this declaration because they are the ones that own two patents on the amalgams! Furthermore, in a recent development, the FDA has been forced (through legal action) to put up a disclaimer about the potential dangers of mercury amalgams in pregnant and/or lactating women and children. As soon as the FDA did this, the ADA removed any and all references to the FDA in all of their literature about the safety of dental amalgams.

Even if one does not have any silver fillings in their mouth, they are not necessarily in the clear with regard to mercury. One does not ever need to have had a mercury amalgam to have high levels of mercury in their system. Research shows that while we indeed get a steady stream of mercury from our amalgams, we get even more in our diet and just from the environment in general. What's more, people who once had amalgams, but have since had them removed (without using a biological dentist), can be almost positive that they have high levels of mercury toxicity.

[floridagirl11]

So why hasn't your dentist told you about the dangers of mercury amalgams? Two reasons: 1) they just don't know any better because the ADA is telling them the mercury fillings are safe (they have been duped just like you and me); and 2) if they do happen to know better (and some of them do), they are not allowed to suggest that you get your fillings removed for health purposes BECAUSE THEY CAN LOSE THEIR LICENSE! The ADA will, and has, taken the licenses of dentists who have spoken out about the dangers of mercury. In the absence of a defective filling, a dentist must wait for the patient to ask for his/her amalgams to be removed; they cannot suggest that you remove them!

There is a highly specialized way of removing amalgams that involves filters, oxygen/gas masks for the dentist, nurses and patient, full body covers, protective eyewear, heavy suction of mercury vapors, and more. Most dentists are not trained in this area and therefore, a Biological/Holistic/Environmental Dentist should be consulted. You can find a dentist trained in the specialized way to remove mercury fillings here: http://www.iaomt.org/patients/search.aspx. Even if one is getting a mercury filling out and having it replaced with a white composite for aesthetic reasons, this very specialized procedure needs to be followed. If not, you will most assuredly expose yourself to dangerous levels of mercury vapors and particulate that can cause massive damage to your system. The question that a lot of people have at this point is why one person can be affected by their mercury fillings while another person is not. The answer is relatively simple: it has to do with one's genetic make-up. Some people are just predisposed to mercury sensitivity. It seems that you and I are two of those people. My mother is also suffering from mercury toxicity. My father, however, had all his fillings drilled out and replaced over a year ago and doesn't seem to be suffering any ill-effects thus far. The problem is, even if someone does not feel badly because of mercury exposure, the Mercury is still at work in that person's body and will eventually affect them one way or the other--whether it be in the form of cancer, alzheimers, arthritis, a heart attack, etc. Unfortunately, while there is a growing amount of research that details mercury's terrible effects on the human body, there is still not enough awareness out there so that the average person would be made readily aware of it.

Anyway, after I had done all this research on mercury, I then began to discover a connection between mercury and the fungus, Candida. Candida is a nasty little form of yeast that actually feeds off the mercury and then reeks its own havoc throughout one's entire body. Dr. J. Trowbridge has written in his book "The Yeast Syndrome," that some doctors specializing in Candida treatment have reported to him that they have discovered clinically that 98% of their patients with chronic Candida also had mercury toxicity. As you can see, the relationship between these two things is highly symbiotic. Candida can be present, and often times is, in a person without mercury toxicity; however, if one has heavy metals in their body and does not detoxify themselves of these metals before killing off the Candida, the Candida is just going to grow back.

Candida causes a plethora of health problems and is very hard to diagnose because the symptoms vary from individual to individual. Many times, a person suffering from Candida will be told that their symptoms are "all in their head" or that they are "just getting older" and that it's just a part of life. There are many estimates that 84% of the population is suffering from Candida. Even if a person has no heavy metals present in their body, Candida should be considered as a cause of illness. To see a pretty comprehensive list of the symptoms Candida can cause, click here: http://www.stopcandida.com/candida-symptoms.htm.

After God began to open my eyes to what was going on with me, I went to an alternative health care practitioner in Tampa and asked that she check me out for heavy metals, Candida and some other things that I thought could be wrong with me. Around the middle of July, my lab work came back and I found out that I not only had very high levels of mercury in my body, I also had very high levels of lead! The fact that lead and mercury are present together means that they act in conjunction with each other to do 100 times worse damage to my system than if I just had one or the other alone. I was also highly positive for the Candida, being ranked a Class 5 out of a Class 6. The Candida was not only present in my stool, it was also in my blood.

The heavy metal poisoning, combined with the Candida, has caused my adrenal glands to fail. The adrenal glands regulate cortisol levels, which in turn stimulates conversion of proteins to carbohydrates, supports blood sugar levels, and promotes glycogen storage in the liver – thereby providing the body with the energy it needs to function well.  Unbalanced adrenal glands can contribute to bad metabolic rate, a weak immune system, low energy levels, and abnormal sleep states. Most people with chronic fatigue have malfunctioning adrenals.

As I said above, because my adrenal glands are not working, I am not producing very much cortisol. My cortisol levels are so low that they couldn't even get a reading out of my nighttime urine test. Low cortisol levels have been observed in patients with different stress-related disorders such as Panic/Anxiety Disorders, Chronic Fatigue Syndrome, Fibromyalgia, and Post-Traumatic Stress Disorder. Low cortisol leads to enhanced stress sensitivity, pain and fatigue.

I also have primary hypothyroidism, which I suspected all along, but it took a full review of my medical charts to see the escalating trend in my TSH levels. My neurotransmitters are all over the place, which is also contributing to the anxiety, fatigue, poor mental function and muscle weakness. The combination of all of these things means that my body is just completely overwhelmed.

So now that I had figured out my problem, I needed a solution! Using the IAOMT website, I found a biological dentist that happens to be one of the front-runners of the mercury-free movement. He has been on talk shows and radio programs, written books, articles, etc. Two months ago, I had all my fillings removed and replaced with biocompatible materials.

My dentist, directed me to an "integrative medicine" M.D. who was going to help me remove the heavy metals from my system using oral chelation. Some doctors use IV chelation but this is very dangerous and has even caused deaths. Before attempting any form of chelation therapy, it is imperative that one have ALL of their mercury fillings removed. Otherwise, you can cause more mercury to leech out of your mouth and into your body. The oral chelation I was using was a combination of DMSA, EDTA, ALA, chlorella, garlic, etc. I also was using a spray called "Metal Free." After about a week on the program, however, I felt so on edge and unlike myself that I had to stop the therapy. I did some more research and saw that 1) you really should not start a detox program for several months after removing your fillings and 2) if you have thyroid and/or adrenal problems, you MUST support them first before starting any chelation. I also suspected that I could get a little physical relief by treating my candida, even though I know that there is research that shows candida may never truly be able to be eradicated as long as there are heavy metals present in one's body. This is because the candida feeds off the mercury in your gut so as long as it is present, candida has a reliable food source.

[floridagirl11]

Two weeks ago, I purchased Olive Leaf, Probiotics (refrigerated kind), Thisilyn, Bromelain, Adrenal Caps, Extra Virgin Coconut Oil, Pau D'Arco and Yeast Cleanse from my local Vitamin Shoppe. I have been taking everything in 2 capsules, 3 times a day and am feeling SO much better. The olive leaf, yeast cleanse and Pau D'Arco I take 30 minutes before a meal and everything else I take with my meal. I am also getting about 20-30 minutes of sun every day to help with my Vitamin D levels. The olive leaf has been helping my acne TREMENDOUSLY. I mean, it's like an overnight difference. I am also cooking with the coconut oil and rubbing it on my scalp at night. I have quit using shampoo and only use baking soda and conditioner to clean my hair. Sounds crazy, I know, but it is SO IMPORTANT that you eliminate toxins wherever you can and shampoo is loaded with them. Here's how to go no 'poo: http://www.instructables.com/id/How-to-Go-No-Poo/. There are also alot of other things you need to do around your house and in your life to detoxify--cleaning agents, laundry detergent, perfumes, food and water choices...there are a lot of alternatives out there and you can find a wealth of info on the internet about the chemicals in everyday products and better choices you can make for yourself.

As far as the candida-heavy metal connection, it is important to note that candida alone can cause chronic fatigue. There is a great website that is dedicated to the candida-mercury-chronic fatigue relationship. You can find that here: http://www.cfspages.com/fire.html. Many times, when candida is being killed off, people will start to feel even worse than usual. Most people compare it to a flu-like feeling. This is a good thing because it means that your body is dumping toxins. The symptoms are actually called a "Herxheimer" reaction, which means the digestive enzymes I am taking are working. The Bromelain is supposed to help the die-off. I am also taking Juice Plus and Dr. Mercola's Whole Food Vitamins, Plus Minerals. This may be helping with the die off as well. It is important to take a good vitamin with minerals (only the whole foods kind--no synthetics!) because people with mercury overload are very mineral deficient.

True heavy metal/candida/chemical detoxification can take years to fully complete. It is no easy task, but unless you want to continue to get worse, it absolutely must be done. I have dedicated myself to it as I not only want to get better for myself, but I do not have any children yet and I want desperately to have them--and have them be healthy! I have read thousands of articles about this stuff and I still feel like I am just scratching the surface. There is so much info out there, it is really hard to wade through it all.

There are tests you can take at home for heavy metals, adrenals and Candida. They are the exact same tests that my doctor charged me a lot of money for. They're run by the same labs and everything! If you are interested, I can send you all the information. Also, please feel free to message me if you have any questions. God bless!

[bamberg85]

I too have alot of the symptoms that you have listed above. I have been going through test after test for the last 14 yrs and I have been diagnosed with Scleroderma, Lupus, Fibromyalgia, Osteo, Hashimoto and the list goes on. I would be very interested in any information that you have that could help with purchase the metal tests. I am at my wits end and am tired of feeling so terrible every day. I am going to start eliminating all household chemicals also. Thank you for your help.

[SongBird74]

Hi floridagirl11,

I truly appreciate the time you took to share the information that you did.  I have been suffering with the very same symptoms you described for about 17 years now, but my ANA, RF, etc keeps coming back normal.  During a flare I am visibly swollen and stiff ALL over.  On a non-flare day I am still in very uncomfortable pain.  I am a single mother of a wonderfully understanding 10 years old boy, but would really like to not rob him of his childhood as I feel like I am now.  I can't manage to do anything physical with him and it hurts my heart.  My symptoms have been getting worse over the past year and it is leaving me anxious about whether I am going to be able to continue caring for my child and myself.

I have had to take steroids to try to break the flares and this time it doesn't seem to be working (I've been in a flare fro almost a month now). I was born and raised in Jamaica for the first 14 years of my life, and received two very large sliver dental amalgam fillings.  I am interested in where to find those tests, so I can determine if the filling is the cause of my body betraying me.

I look forward to your reply.

Thanks for allowing the Lord to use you.
SongBird74

[angieluv]

Your story is so simular i cant believe it..tThank you so much for your story .you helped me from today on Im so greatful for finding your experience.

[gail195359]

Hi :) & :( my name's Gail Bertram I live in Australia Qld. I just read your story & started crying & could not stop. My first time on Net & I found you :) because your story is me...AT LAST...it's not me or in my head. 1990 Fibromyalgia.... 2003 my inner tremors started very slow, as an artist I noticed it quickly. Doctor after doctor, pills after pills, until they didn't know what was me, pills, or illness. I gave up my will to live BUT...God didn't give up on me. July 2009 I some how got out of bed & left a 30yrs marriage. He just fed me, couldn't handle his wife who was very strong in mind, body & spirit now just surviving. Today...I'm happy, at peace BUT...illness is worse. Inner-tremors very high, burning mouth, inner-heat, cold feet, outer body jerking with weight bearing...like trying to get up out of my lounge, etc. I had all my amalgam fillings taken out in 2004 but he didn't put a dam-thingy in to catch mercy. Sorry, I have trouble thinking right & writing wrong. I've REPEATED the circle so often, & about to do it again. Everything you said I have and more...I started taken SELENIUM drops 6 months ago & now have room in my brain to think :) BUT...my inner-shaking is getting to me. I just want inner-stillness & inner- quiteness, my all over body pain I can handle. Thank you so much for your story. O'bye the way I'm not on my own, an amazing man came into my life as it was, & loved & cares for me, WOW! We been married 1yr now, that's my story & I give God the glory. I have Love & Hope now... Gail 59 year old  

[monty51]

Wow Gail,  You have just about described what I have gone through since a car accident in the early 90's.  I am Australian and had a string of Drs that just dont get it.  I was diagnosed with Fybromyalgia early on, with Hashimotos sydnrome. I have got progressively worse over time and in 2010 moved from the Gold Coast south and went to an immunologist in Newcastle who diagnosed me with Sjogrens and MCTD.  The pain is horendous.  I would rather give birth 10 times over than put up with the pain I have every day now.  I still dont have any relief from the pain.  My GP just doesnt seem to care and has told me to learn to live with the pain.  I also have osteo Arthritus down my spine and shoulder now and Plantar Fasciitus in both my feet, as well as Pagets disease in the skull.  Unfortunatley due to pain I had to give up work last year but can relate so well to you and florida girl.  Is there NO ONE out there that can help people in our situation.