The Good and Bad Sides of Zinc Supplements

We are all paying much more attention to supplements now. Many of them are hard to overdose with, however some that we need can be bad news if we take too much. Zinc is an essential mineral that is needed by your body to manufacture about 300 enzymes. Each of these enzymes have diverse processes and functions such as cell reproduction, immunity, protein synthesis, wound repair, vision, protection and immunity. The immune system does not work as well when a person does not take in enough zinc.

Some Zinc deficiency symptoms are diarrhea, lesions, loss of appetite, growth retardation (in children), hair loss, delays in wound healing, taste abnormalities.  Extra zinc  may help with the loss of taste sensation or smell, wound healing, anorexia / loss of appetite, paranoia, depression, strong body odor, impotence, certain hair, nail and  joint / arthritic problems, impotence, cataracts and optic neuritis, and some skin conditions such as acne and dermatitis.

The RDA of zinc is about 9-11 milligrams is enough for adults. However, only about 30% of the zinc that you intake can get absorbed by your body. Many factors can interfere with zinc absorption such as phytates in your brain and fibers. If your body cannot absorb as much as it needs, you may need to take zinc supplements in order to prevent a zinc deficiency. It has been shown to be effective  in shortening cold symptoms, reduce the severity of cold sores, increase energy levels, treat ADHD in children, fighting hair loss and managing conditions such as hypoglycemia and diabetes.

There is not a reliable laboratory test that can exactly measure how much zinc your body needs.

TOO MUCH ZINC: Can lead to serious effects. A zinc dose of 40 milligrams is approved safe to use by FDA and a zinc dosage more than this can pose certain risks. In terms of zinc toxicity, there is no other way to put it: excess zinc is dangerous! It can interfere with the metabolism and absorption of other essential minerals in your body, most especially iron, magnesium and copper. Zinc side effects can become potentially serious if you take doses from 150 to 450 mg a day. Taking this much can decrease your copper, iron and magnesium levels, selenium, phosphorus, Vitamin A, B1, C, reduce your body’s immune function, and reduce your HDL (good cholesterol) level.  It may also cause, or contribute to gastrointestinal problems, hair loss, anemia, loss of libido, impotence, prostatitis, ovarian cysts, menstrual problems, depressed immune functions, muscle spasms, renal tubular necrosis /interstitial nephritis, dizziness, vomiting, High zinc doses over long periods may increase the risk of urinary tract problems, including infections. An adult should not take in more than 40 to 70 milligrams of zinc per day from foods and supplements combined.

Rare side effects have also been reported and these include fever, sore throat, mouth sores, weakness and fatigue but you only need to take just enough. An overdose of zinc can lead to severe nausea and vomiting, headache, and fatigue.

Zinc can reduce the body’s ability to absorb some antibiotics and other drugs, which can cause them to not work well.

The Politics of CCSVI


Recent events have put me at the cross roads to re evaluate my online activities as it pertains to CCSVI. There were some before me who have found themselves in that position and chosen to take a break for awhile or delete their accounts permanently.


Several years ago I belonged to a website for people with Mulitple Sclerosis. It was advertized as a support site and I was involved like many others in gaining information and sharing mine. As far as I knew, things were fine for over two years until Dr. Zamboni’s news about treating people for Chronic Cerebro-Spinal Venous Insufficiency hit the internet.


At that time I used Facebook for playing Farmville with my family and connecting with a small circle of friends. A few of us from that site were interested in pursuing the angioplasty procedure. I spent up to 8 hours a day posting and reposting information. That was not easy to do with the severe cognitive issues I had back then. As in many other websites, things turned ugly in a hurry. I rewrote the same information so many times that I stopped posting long bibliographies and annotations.


Dr. Zamboni started his research in the 90’s. He asked his patients to keep his findings to themselves, and rightfully so. Many doctors a year and a half ago also did not want their information out because they didn’t know what legal ground they were standing on and did not want to be overwhelmed with phone calls. That too is reasonable.


I gave the names of doctors out online prematurely and it caused quite an uproar with a few people. It was not done maliciously. I was trying to get people to doctors just like the person who had the list in her online notes. When asked to take it down, I did so immediately. The tongue lashing I got was not called for, but it’s over.


Because someone read a post of mine, I was able to enter a study and have my procedure done. As with any study, the details are not subject to public scrutiny before they are concluded. It may seem like a long time, but in reality has only been about two years. I was asked to not give information out online with some exceptions just as everyone else in the study. When I was told I could give that information out to individuals and their GP’s, I did. One incident occurred when someone I thought I could trust gave my doctors’ information out to about a dozen other people, I was no longer welcome to do it at all for about six months. I am still in that study. When it will be published is information I am not privileged to know.


In the mean time, I have tried like many others to do what I can to help others learn about CCSVI and how to find ways to live healthier lives. Like most of you, I am a lay person who has lived with MS for many years. I was fortunate enough to have good results from the angioplasty procedure for CCSVI. I feel badly when someone does not get the results they had hoped for, but I am not personally responsible for that.


There is no ego involved, neither should there be. I have many interests to occupy my time. I do this because I want to help. I have seen firsthand how the procedure has helped change lives.


This is the greatest self advocacy movement in recent history. MS patients and other interested parties have worked very hard to forge ahead to see that everyone who needs treatment gets it. Just as with any other procedure or treatment the expertise of the doctors providing it varies greatly. Protocol and equipment are not universal. Many doctors are sharing information, others not so much. Mine have been kind enough to look at CD’s for me at no cost. They have have called other doctors at the request of me and other patients and not exactly been welcomed with open arms. Unfortunately that is the way it is. The competition and scrutiny is unfair but we are the only losers. The doctors providing the treatment are not doing it for free. Nor should they be expected to do so. Studies  however can be very different from open clinics.


As much as everyone has accomplished, it won’t continue to help as long as there is in house fighting, groupies, and condemning each other. It’s wonderful for patients to prefer their doctor over another. That doesn’t mean that he or she is the only one qualified. (Yes there are women qualified to do this). Some are better than others. There is still much to learn.


As long as an online presence is a good thing and people are getting the information they need, it is important to be available. For a few of us, we need to decide if we are still in that category. I am struggling with that issue myself, as have many others.


It takes the efforts of many. No one person is responsible for the advancement of this treatment. It has and should remain a group effort, regardless of individuals who feel they need to bow out.

Hypochlorhydria, or low stomach acid is common in MS

It seems that we never have a lack things to be concerned about with  MS/CCSVI. Symptoms and vitamin & mineral deficiencies are certainly a big part of our responsibilities in self-  health care. I’ve seen many articles lately about B-12 deficiency, Vitamin D, Magnesium and so forth. Eriks Is in one of the groups I belong to on Facebook. He often addresses this topic, and I think more people should hear about it. Hypochlorhydria, or low stomach acid is common in PwMS. Simply put, it is the stomach’s inability to produce hydrochloric acid.  It is also common in people with Chronic Fatigue Syndrome, Fibromyalgia and Myalgic Encephalomyelitus. Of course we already have many symptoms in common with these conditions also. It is also associated with child hood asthma and most doctors don’t test for it on their own.

Hydrochloric (Stomach) acid is necessary to :

  • Digest proteins
  • Correctly empty the stomach (gastro-esophageal reflux disease or GERD develops without it)
  • Sterilize the stomach and kill bacteria and yeast
  • Absorb calcium, magnesium, zinc, copper iron, selenium and boron

Food allergies, medications, and some medical conditions can cause low stomach acid. As we grow older, acid production decreases naturally. Mal absorption increases the risk of osteoporosis, as well as other signs of mal-nutrition. Vitamin D, B-12 and magnesium, which coincidently PwMS seem to lack, are three of the most common elements that are not absorbed properly. Antacid tablets and H2 blockers can cause low stomach acid also.

Trace elements are needed for the body to function correctly. If we don’t have them, the risk of cancer, heart disease, and neuro-degenerative conditions increases at a younger age.

When there is not enough stomach acid to sterilize the contents of our stomach, we become more likely to develop gut infections like gastro-enteritis, and viruses like Epstein barr virus, Echovirus and Coxsackie virus. Overgrowth of bacteria and yeast will cause foods to ferment instead of being digested. Gas and bloating is the result. It is the bacteria and yeast that irritate the stomach lining and increase the cancer risk. Candida and iron deficiency can be caused by low stomach acid also.

Medications like Omeprozole which is prescribed for heart burn or GERD greatly reduces the absorption of B-12.B-12 deficiency is common for PwMS and causes a number of problems such as:

  • Mental confusion
  • Delusions
  • Paranoia
  • Headaches
  • Depression
  • Impulse Control
  • Pins and needles in the extremities
  • Balance issues
  • Nausea
  • Vomiting
  • Heartburn
  • Bloating
  • Loss of Appetite
  • Weight Loss
  • Diarrhea
  • Constipation
  • Fatigue
  • Paleness
  • Shortness of breath that results from only very light exertion
  • White spots on the skin (typically the forearm) due to decreased melatonin

Hypochlorhydria  can be treated with acid supplements like cider vinegar. (Not a good choice for some people because it contains some yeast.) High doses of vitamin C at mealtimes. My choice is Betaine HCL. It comes from beets , and is available in capsules. By correcting your diet and eating smaller meals, it is possible that the stomach will begin to produce enough acid on its own.

Betaine must be taken with meals. Start with one capsule a day and increase the amount until the issue is resolved.

Before my procedure and for sometime afterward, I suffered from Hypochlorhydria and had most of the symptoms. It was bad enough that I became very susceptible to yeast and staph infections. It’s common enough that you should talk it over with your GP.

Looking Forward to the New Year!

My New Year’s Resolution is to continue the fight to assure safe and effective treatment for CCSVI for all, regardless of nationality, financial situation, or negativity of their own physicians. CCSVI was the top story for 2010. It will be the biggest success story for 2011. We have become the largest and most successful patient advocates in modern history. The tyranny of a few has ended, but there are many to take their place. We have prevailed against the power and influence of drug companies, MS Societies and our own neurologists to end the suffering and disability of a great number of people diagnosed with Multiple Sclerosis. Some have literally shed their wheelchairs and other assistive equipment to regain at least some of the quality of life we all deserve. Those who oppose us would be the first to embrace our cause if they had to live the restrictive and painful day to day existence from before this year has known little respite.

Don’t give in to the dismal rhetoric of those who are beginning to mourn the loss of their cash cows, and lashing out in every direction to check our progress and end our dreams. We need not, we cannot allow them any forward movement against us. The suffering, accumulative disability and loss of life continues; needlessly unabated without the angioplasty procedure. My memories of the last seven months are rich with the joy of interacting with family and friends as a “normal” for the first time in many years. There are many challenges with symptom improvements also. I believe this will be more of an issue in the coming year. I am one of the people who was wheelchair bound and had severe cognitive and speaking issues, so my changes are very visible. As more like me have to start over, the challenges we face will become more apparent and open for discussion.

Happy New Year to all of you! Be safe, be happy and pass it on

When Will CCSVI Stop Being Treated Like a Bastard at the Family Reunion?

Try as we might, we can’t control everything. We have supported and helped each other well over the past year in regard to MS and CCSVI. I understand as well as anyone how important it is to me and all of us that we have good follow up care. There are a great many people who have spent almost all their time and energy to spread the word and contribute where they can. Some have more than others to give; time, money, emotional support, research results, etc. We need to keep in mind that we are responsible for our own health care, which includes securing a doctor to perform our angioplasty procedure. Keep in mind that while our choices were almost nil 10 months ago, our options are still very limited. It is not in our best interest to go outside our local area. We all understand this, yet I would be lying if I said that I would rather convince a local doctor to learn the procedure and volunteer to let him practice on me. That is exactly what many of us did out of necessity. If I had the option of the latter, or traveling to a doctor who has a lot of experience in this arena, I wouldn’t hesitate to travel. We have to be realistic. Who among us wants to fork over $10,000 to have a procedure which their doctor has had little experience? On the other hand, if we don’t garner doctors in our own area, there will never be enough providers to make this globally available. It is a conundrum few of us are comfortable with, yet we have to address it sooner or later.
Unfortunately not everyone has the where with all to bring treatment to their respective cities. Even where this has happened, not all doctors agree on the same technique or protocols, as it were. I for one am grateful to anyone who has helped in the smallest way to forge ahead to insure treatment for everyone. It was nothing short of torture for me to find my own doctor. I was lucky to find my eye glasses. I took hours to type what once could be accomplished during TV commercials. Many PwMS have cognitive problems as well as physical limitations that make the simplest of tasks difficult. I was very lucky, period. I did quite admirably for myself, but not without the aid of others. I also cannot look someone in the face and tell them to go hunt up a doctor. I also can’t provide one for everybody. That is an impossible task for anyone. Those who had treatment early on were aptly tagged as guinea pigs. I became very angry with people who wanted access to the procedure as long as they didn’t get their nails dirty. Where and whenever we can ease the burden, we should.I surely can’t force any doctor to hire a PR agent to advertise what is clearly not yet an accepted procedure. No person should be forced to lie to insurance companies to get approval either, but it is what it is. That so much has been accomplished in this short span of time is medically speaking, amazing. People who think that PwMS have it made in America are sadly mistaken. There is considerable pressure to modify progress as much as possible. In addition to finding doctors and fundraising, we need public opinion and political support. Mainstream media has not been our greatest ally. Some are doing a great job, most are having a good laugh at our expense. We do make an amusing pastime. A few well known people have come to our aid, too few. JK Rowling, Annette Funicello and others have been quite generous. The people who have sworn us their allegiance, for example our neurologists, MS societies, governments and other MS “support” groups are not a part of our fan club. There is not enough profit in it for those. I intentionally didn’t list the drug companies because they have never pledged anything to us other than their advertising schtick. The sad truth is that the support of highly visible and influential people come from either the ones who have MS themselves, a loved one with MS or someone who stands to benefit financially from advocating the procedure or have some other vested interest or personal agenda. If there are any outside of that criteria, I am woefully ignorant of their identities. Celebrities who have aligned themselves with other treatments and therapies aren’t willing to give up the gravy train mid-stream for the likes of real people with CCSVI. Some employees of the above mentioned groups broke ranks to have the procedure for either themselves or a family member. They did not do so publicly either, but rather added to the entire secretive, carnival like atmosphere that we have unwillingly become a part of and witness to.
As much progress as has been made, the disparity in the supply and demand will continue to grow as more people with Multiple Sclerosis are made aware of this treatment option. I estimate that only a third of the MS community knows anything about CCSVI or are woefully misinformed. You can test my postulation by signing into the NMSS website or any of the for profit research support sites and share your own CCSVI story. The response will positively tickle you unless you wear your heart on your sleeve. Those who stand to lose status, reputation and an obscene amount of money will continue to work diligently to ascertain that CCSVI remains a controversial,divisive issue in 2011. They have had years of success so far. Dr. Zamboni, the World Wide Web and technological progress in medical imaging have been the most substantive flies in their ointment so far. Until now all research, and studies have remained in locked file cabinets and external hard drives.
We are becoming a force to be reckoned with, but not without further sacrifice and diligence. We still must make every effort to find and convince interventional radiologists, vascular surgeons, neurosurgeons and our general practitioners the efficacy and benefits of angioplasty for CCSVI. The brave among us may want to share the information with their neurologists, but expect fireworks. Most of them are a bit touchy about being told they have been treating the wrong disease. Here’s to a better year in 2011

Finding Common Ground

Things are hectic for everyone right now and I’m no exception. I have fallen back on my blogging to work on Christmas projects. Today I decided to go to an MS meeting, not something I have done in a very long time. I was invited by a friend from the CCSVI Locator group who lives close by. We had never met in person and communicated only a few times on the internet . I didn’t know what to expect or how I would be received. My plan was to sit, listen and speak only if spoken to. Except for the person who extended the invitation, I was the only person who had the CCSVI angioplasty procedure. A year ago, I would have felt right at ease with a group of people who were using wheelchairs, walkers, canes and crutches. Now I felt out of place. Rick came with me and we sat down out of the way. It was awkward for about two minutes, then everyone began to welcome us and introduce themselves. My friend Roy and his wife came in right before the meeting was to start, and of course I didn’t know him from Adam, until one of the members of the group gave me a heads up. There wasn’t time for chit chat before they began the meeting. Someone had brought a couple boxes of Avonex with her to share. The local National Multiple Sclerosis Society representative was introduced and I began thinking of ways I could quietly slide under the table unnoticed. I started to feel like a sheep being led to slaughter. Had I been set up again? After all, I’ve had my Facebook, Twitter and email accounts hacked , a lawsuit filed against me from a neurologist and numerous confrontations over CCSVI in the very recent past. My words against the NMSS are written all over the internet as I’m sure most of you know. After a short presentation from the nice MS Society lady, Roy was asked to give his presentation about CCSVI. I figuratively wiped the sweat off my forehead when I realized that I would probably leave without being stoned and perhaps my dignity intact. I needn’t have worried, everyone was listening to Roy intently. Most of them knew very little about CCSVI, in fact one lady in a familiar looking power chair had never even heard about it all. Color me majorly surprised. I had no idea I would be asked to speak so therefore prepared nothing. I brought a few pictures with me to show Roy. I knew he had seen my videos on Youtube, but thought he might like to see the difference before and after so he could judge for himself. He told everyone some general information that was well received. The next thing I knew, their chairperson asked me to tell my “story”. Well that took care of any trepidation on my part. My original plan of staying in the background quickly dissipated as I started to speak at length, actually. They were wonderful! They asked questions and were keenly interested in all I had to say. Most of them didn’t notice Rick and I when we walked in, so as I explained my MS journey and level of disability, you could hear a pin drop. A few jaws dropped also. There were some dicey moments when questions about the reticence of neurologists to accept CCSVI, the MS societies’ stand, and of course the drug companies. I wanted to be tactful, but I told them how I feel about all three. The MS society rep. didn’t say a single word for the entire hour after her presentation. She got up and left for a few minutes and came back in the room and sat down.

The normal time to close was ignored and there was considerable chit chat after the meeting was concluded. I think it went extremely well. Most of them asked for my phone number and email address before we left. I decided to share this experience because it gave me some important things to think about. It may seem to many of us that most people with MS are familiar with at least basic information about CCSVI. If today was an example of the reality of this issue, those of us immersed in the entire theory of the venous connection to MS and the Liberation procedure are indeed in the minority. Clearly, education and exposure for CCSVI is sorely lacking in the overall MS community, which may explain in part, the reason that the “Big Three” have been able to sweep us under the rug. I believe that no person or group of people will continue to enjoy their opposition to the angioplasty that is turning the MS world upside down. We are not merely frustrating annoyances anymore and have become a force to be reckoned with. People are tired of the lies, greed and suffering they have been forced to endure and even the most timid are speaking out. We have reached a turning point in our fight for the right to have a better quality of life. In one short year, we have achieved remarkable success though it may not seem that way to most of us as we tackle one obstacle after another. It is happening! We are fighting the good fight and victory is the only logical conclusion.

We can’t throw caution to the wind, but full speed ahead!

There are a few things that I hear and read very little about concerning the Liberation Procedure. Though the original name gave it a somewhat theatrical air, I find it more appropriate as my life improves. There are common sense steps to take for any medical treatment or procedure. There were no “Guides to Liberation” when I first began to investigate what I thought might be another puff of smoke in a long line of broken promises I came to expect after 15 years of Multiple Sclerosis.
Dr. Zamboni and other front line pioneers seem to have back peddled a bit. I am beginning to understand the critical need for trials, but abhor the idea of double blind placebo studies that are not drug related. Just as we have been exposed to more than our share of unscrupulous neurologists and corporate types who know nothing about MS from a medical standpoint, there are vascular surgeons and interventional radiologists whose bottom line is financially based. I have had the opportunity to watch the procedure, and testing on several individuals. All of those had good results and life enhancing improvements. Before long we began to hear of less than optimal results and the inevitable disappointment which followed. In perfect world we would be able to go to any large city and have this done as a matter of course. That will be the future for MS, I have no doubt.
One consideration is regular follow up care. We spent years getting MRI’s for what purpose, I still have problems understanding. If we are taking blood thinners, we need to have our labs checked on a regular basis. We can’t have other medical issues addressed when we go to the doctor without “mentioning” that we have had a life changing procedure. For those whose visible symptoms were only minor, it may not seem as important, yet it is. I have had a couple of interesting visits with specialists for other issues, such as stomach surgery, because my records indicate problems that are no longer considerations. If there is a medical emergency, we may not be able to explain our medical history. I have had a difficult time getting through new patient forms because I am not sure what is relevant and what does not need close attention.
Immediately following the procedure, most of us are simply sent home after as little as one hour. That isn’t prudent for any procedure that can result in the changes we may experience within 24 to 72 hours. I was so excited I could walk that I pushed myself to see how much I could do. That was unwise as it caused me to overdo it and I damaged my left ankle. It takes time for our bodies to deal with the trauma of the procedure. It is not particularly invasive but can result in the body’s ability to react and move in ways that may have been impossible for long periods of time. Unused leg muscles need time and careful therapy to avoid damage that may be difficult to resolve later. My heart was not ready for the energy I suddenly had and I started to experience palpitations and chest pains that were unrelated to the MS Hug. My first procedure was in June, the beginning of the “cooling vest” season for me. Heat intolerance was a severe symptom for me and many other PwMS. I was disappointed that it did not disappear, but instead escalated. After the second procedure was done, it settled done considerably. Finally my doctor and I decided that exertion was the main reason I wasn’t getting any relief. Those of us with moderate to severe disability accumulated over many years will need to consider the shock that rapid improvements might adversely affect us.
Some who do not get immediate results may find that time is the answer. There are many reasons why a number of people get incredible improvements while others get none. I have addressed that earlier. We should be able to insist on an overnight stay at the clinic or hospital. I know! I can hear the moans and groans already. There is added expense and many considerations to do this. From a medical stand point, I think it is a sound one. My team agrees with that whole heartedly. Not only is it safer for the patient, but the doctors would be able to learn much about what takes place within those all important 24 hours. While there are many questions we don’t have the answers for yet, there is some information we need to be given before we go home. Those who have traveled a long distance in particular need to ask specific questions about what post op issues could occur. I have been reading about some people who are taking major health risks immediately after their treatment rather than resting and getting familiar with their “new” body. Improvements vary greatly from patient to patient. There are some problems which can occur that might be dismissed because the individual thinks it’s a normal reaction. Some doctors are providing complete and comprehensive care with regular follow up appointments and somewhere to call if they have concerns. I don’t think I’m far off the mark when I say that there are not many who stay that involved. The doctor who performs the procedure may have no idea what effects the procedure may have on the many systems in our body. I discussed this with my IR and my GP after my first procedure. Together we came up with a list of things that would be comforting and informative for post procedure care.
We also need to consider the state of our general health long before we set a date with our new doctor. Developing a good diet, sleeping habits, etc. will have an effect on how we react to a plumbing system that suddenly works. Many of us have other health issues other than CCSVI or MS. I was umprepared for the difference in my diabetes, for instance. As symptoms subside, medications will change. Your PCP will want to have some central control on your medications. In my case, I no longer needed Baclofen, Effexor and some of the other drugs used to control MS symptoms. Bowel and urinary changes will most likely occur. There are many side effects that can happen when starting or ending a medication. I was on many different medications and had to learn what was safe to stop, which I needed to be weaned from and some that temporarily had to be replaced with others. Any person who is taking three prescription medications can have interaction issues. We already know that some of the alternative supplements that are considered safe can be deadly when they are combined with blood thinners, and other common medicines for PwMS and post procedure needs. Educate yourself about that special tea you may be drinking or the megadoses of vitamins and or minerals. I can’t possibly list all the contraindications here, but the information is easy to obtain.
Our overall health care is our own responsibility. Though that has always been true, it is essential when we are considering a treatment still fighting for validation. All of these concerns will be routinely dealt with at some future date. There is a great deal we still do not know. That is why we are being cautioned by earnest physicians. On the other hand, people like me don’t have two to three years to wait, let alone the projected five to ten that is likely to become a reality. If you don’t feel comfortable having the procedure done while it is still so new and unexplored by so many, then don’t. Maybe you will be fine waiting and not have to suffer some of the setbacks we are experiencing now. Keep in mind, however that the venous connection to MS and many other conditions most likely has been kept under wraps for a very long time. We have come a long way with only a handful of doctors and the internet to aid us. Making the procedure available is priority number one right now. Someday, it’s my hope that the deliberate cover up will be exposed with some names and details. In the meantime, we are no more guinea pigs then we ever were. The entire MS community fell for faulted theories about Multiple Sclerosis, solely to satisfy the global pharmaceutical companies who know no borders. It could be argued that every person involved in the research and development of expensive pharmaceuticals had no part in the lies and greed exposed to us now. Yet there are many who choose to keep the status quo regardless of the lives lost and damaged. That is unacceptable. There also has been no apparent change in their activities though there is now some awareness.
Of utmost importance is getting better, safely. In order to accomplish this, the standoff has to end.

Don’t Ask, Don’t Tell!

Absurd Double Talk of the Month OR WTH?!

This is an example of what happens when you ask dumb questions to dumb people. I simply asked why there is so much opposition to providing angioplasty to people who have CCSVI. In answer to my e-mail, this is in part the reply from a neurologist in Canada. Any reply at all was unexpected, but below is beyond me .

“….the concern isn’t for the people with a *factitious disorder, or diseases that are impossible to diagnose because they do not exist. Chronic Fatigue Syndrome and fibromyalgia are adequate examples of illnesses that are diagnosed for individuals unable to manage stress. Multiple Sclerosis is often difficult to prove by clinical observation. The condition known as Chronic Cerebro Spinal Venous Insuffciency belongs in this category. The so called “Liberation Procedure” affords patients with no clear diagnosis of Multiple Sclerosis a fortunate cure for their disease. The dubious results have been reported only by people with Relapsing Remitting Multiple Sclerosis who undoubtedly were misdiagnosed. In my opinion this is one of the more remarkable examples of the **placebo effect, probably successful due to the diminished capacity of MS patients with symptoms of cognitive disorders.”

Dr. David Os…..(MS specialist)

This term was unfamiliar to me so I looked it up.

*”Factitious disorders: are conditions in which a person acts as if he or she has an illness by deliberately producing, feigning, or exaggerating symptoms. Factitious disorder by proxy is a condition in which a person deliberately produces, feigns, or exaggerates symptoms in a person who is in their care. People might be motivated to perpetrate factitious disorders either as a patient or by proxy as a caregiver to gain any variety of benefits including attention, nurturance, sympathy, and leniency that are unobtainable any other way..[1]However, other more tangible benefits might be derive.”

**”Placebo: An inactive substance or dummy treatment administered to a control group to compare its’ effects with a real substance, drug or treatment.”

Placebo effect: A positive or therapeutic benefit resulting from the administration of a placebo to someone who believes the treatment is real.

Childbirth and The Angioplasty Procedure for CCSVI!

You might be happy to know that Megahn’s procedure was a complete success. Her ilj was almost totally blocked, The irj was 45%. The azygous had blockage as well as an occlusion in the left sigmoid sinus. She is standing, raising her hands above her head,and the spasticity driving her crazy non stop: stopped! It has been only about six hours.The greatest thing of all is she was able to stand, holding her new baby, Jennie. She was leaning on her husband for the pictures , just to to be safe. As you know, her first procedure , the ilj was not even treated and her improvements were only minor. They decided to go ahead with getting pregnant. She had to miss her June appointment due to the pregnancy. Now she can take care of the baby and is nursing her, just like she planned. If I never have the opportunity to be in the room for another procedure, it was worth it for this one! This is what it’s all about, life!
I hope to get her pictures up as soon as possible. It took a lot of courage to have a baby after her October 2009 procedure. She had only minor improvement. The above results make it easy to understand why. She was able to get an appointment for June, soon after my first procedure, but had to cancel because of her pregnancy. After a nightmare nine months of excruciating pain from spasticity in her arms and legs, she finally gave birth to a tiny, but healthy 5 pound 1 ounce baby girl, Jennie. From the beginning, she worried about caring for her new little family. Her tremors, pain and cognitive problems made them decide to not have any children. She has been SPMS for about 8 years. After she felt a little better from the first procedure they were excited when soon she found out she was pregnant. Some woman do much better during pregnancy, but not for her. She was wheelchair bound and needed constant daily assistance. Her doctor wouldn’t let her go full term and a C-section was necessary. This has been a long, hard road for the three of them. She was denied this procedure in Canada. At 38 years old, they had to make the most difficult of all decisions; to try to have a baby with rapidly progressing Multiple Sclerosis. Then there was the concern that the baby might never know its mother. Nobody should have to be faced with a situation like this when there is obviously a better way.

Deja vu all over again!

For the first time in years, I have a virus, cold, touch of the flu or some other little nasty that has me wiped out. Since it’s going through my entire family, and we all have the same regrettable symptoms, I’m confident in my diagnosis. The last time I felt this tired was before my angioplasty procedure in June. That may be the one and only perk that PwMS get. There is enough news on the CCSVI front to feel discouraged. I didn’t need a virus to remind me how I loathe MS fatigue. It’s a wake up call for me that enough progress is not forthcoming to provide the treatment for CCSVI. A 72 hour dose of this one symptom liberally forced upon each and every neurologist, or other professional standing in the way of our collective goal might be an advantage in reaching our one legitimate demand. Angioplasty for all, anything less is unacceptable!
We are not unreasonable. Anyone who has any doubt or incertitude concerning the angioplasty has the right to refuse it. The rest of us have more than sufficient reason to undergo the treatment if we so desire. All the misleading medical rhetoric so far does not change the truth. To force anyone to live with blocked and narrowed veins is indefensible. The statistics of authentic procedures speak for themselves. Blockages and strictures would not be elusive if the tests were standardized and provided by knowledgeable, practiced professionals. Until the procedure is performed by only well trained interventional radiologists or vascular surgeons we will continue to see and hear the heart breaking stories of failures. Every successful procedure is anecdotal, non-scientific and subject to dismissal as deception or delusion. Each less than optimal result is cogent evidence that CCSVI is a hoax designed to give false hope to the hopeless. Every attempt to delay treatment also prevents the doctors who are eager to proceed from gaining experience and developing their technique.
There is no uncertainty or doubt as far as I am concerned with CCSVI resulting in the MS symptoms I have lived and fought with for almost 17 years. I don’t need one video, blog, or website to witness anything for me. I know what I had, and I know that I have no appreciable symptoms of it now. If it is not the result of angioplasty, then it would by process of elimination have to be a certifiable miracle. That would surely open a new can of internet worms. Many people know about CCSVI, yet far less than it would appear to those of us perusing the internet. Youtube and Facebook apparently do not lend much credibility to the not so rich and famous. Those willing to look beyond Google know that there is much more to the back room drama concerning this debate than is appearing in status updates. Whatever it is that needs to happen to submarine this impasse, has not yet occurred. To date, what mainstream coverage we have been afforded has been severely compromised by deceptions of those not on our “friend” list. The hypocrisy, evasion and double speak is almost tangible. I’m off to the kitchen for a cup of chicken noodle soup. It is purely anecdotal evidence, but it has been rumored that it may speed my recovery of the common cold. I’m a patsy for well known placebos.