More information about brain and spinal lesions.

Linda Rousay A lesion is an area of tissue that has been damaged through injury or disease. So a brain lesion is an area of injury or disease within the brain. While the definition sounds simple, understanding brain lesions can be complicated. That’s because there are many types of brain lesions. They can range from small to large, from few to many, from relatively harmless to life-threatening.
Brain lesions can be caused by injury, infection, exposure to certain chemicals, problems with the immune system, iron deposits in the brain that breach the brain blood barrier (BBB), and more. Many times the cause is not known.
Types of brain lesions:
• An AVM (Arteriovenous malformations ) These usually are congenital. Arteries and veins become tangled and connect from the development of fistulae, tube- like structures.Sometimes veins rupture and blood leaks through these structures by the force of blood flow from the weakened arteries. The brain doesn’t receive enough oxygen. Brain damage occurs and the patient may begin to have seizures which is the first symptom of AVM’s.
• Cerebral infarction: (Stroke) is a brain lesion where brain cells die from lack of blood.
• Cerebral Palsy: These lesions develop before birth. They do not progress. The damage is done resulting in the child being unable to move or communicate correctly.
• Multiple sclerosis (MS):Conventional medicine(neurologists) attributes these lesions to an autoimmune condition which damages the nerve linings (myelin) in the brain and spinal cord. These lesions make it difficult for messages to be sent and received properly between the brain and the rest of the body.We are learning that this is part of a vascular problem (CCSVI) which causes iron to reflux into the brain and cause the lesions.
• Tumors: Tumors are clumps of cells that grow abnormally from normal tissue. Some tumors in the brain are noncancerous, or benign.
The treatments for lesions range anywhere from surgery to doing nothing if they are not causing problems. Diagnosis and treatment is complex.
While I believe that neurologist on on the wrong page with their obsessive behavior over MS lesions, they are important. They can cause damage to the brain and affect virtually every bodily function. In CCSVI when the cause is treated, the lesions regress and some damage at least can be reversed.
Conditions associated with brain and/or spinal lesions:
• Von Hippel-Lindau disease
• Alzheimer’s Disease
• Parkinson’s Disease
• Vascular dementia
• Alcohol-associated brain lesions
• Devic’s Disease (NMO) This is one example of a true autoimmune disease
• Systemic pesticide exposure
• Birth injury
• Migraine Activity
• Irritable bowel Syndrome (IBS)
• Viral and Bacterial infection
by Linda RousayImage

Lesions and Lies

Those who are bedazzled with the medical jargon of their neurologists do themselves a disservice. They count and assess brain and spinal lesions like pennies dropped one by one into a piggy bank. After all, monetary compensation is the major motivation for MS care providers in general. Ask them to,explain brain and spinal lesions and be prepared for a smorgasbord of nonsensical medical verbiage and doublespeak that is second to none; bring a lunch and take notes.

Lesions are part and parcel for MS. There is little question that neurological damage can occur. They are caused by the reflux of iron into the brain due to impaired blood flow. In “normal ” people blood drains easily from the brain back to the body.This fact stares in the face of the currently accepted cause of Multiple Sclerosis.

To my knowledge there are only a handful of neurologists in the world who accept the fact (at least publicly) that lesions are not caused by a faulty immune or over active immune system. If your neurologist tells you that you need to take disease modifying drugs to manipulate your immune system and you believe that line of reasoning then there is little that anyone else can do for you. I’m speaking to every one in general not an individual.

Unless or until normal blood flow can be restored, it is likely that damage will progress. There are many ways to treat CCSVI. We in this group have identified approximately a dozen or more reasons why we have the symptoms we have identified and a laundry list of things to do to improve our health.

The most common and accepted belief is that our options in health care are limited to the choices our doctors make. As long as we are willing to adhere to protocol dictated by governments, HMO’s, insurance companies, drug companies, and organizations such as the Multiple Sclerosis Societies, nothing will change, including our inability to acquire a quality of life we deserve and they take for granted. We are like a willow in the wind leaning in whatever direction the wind blows. They are the ones who manipulate the breeze .

For over 4 years groups of like minded people have fought to change the status quo with varying degrees of success. People who do not have MS as it is defined for us by the powers that be, are observers and dictators. We are the observed and subservient . We do not have the political, professional, legal, or financial resources to balance that of the aforementioned. Canada leads their people by the nose with promises to placate them into compliance. People in the UK have been totally ignored without the benefit of any promises whatsoever. The United States appears to be the only country where the people are free to choose a wider variety of health care options. Looks can be deceiving. The US government’s coercion is simply more subtle.

Progress has been made on a small scale. Unfortunately it has been of benefit to a somewhat limited number of people. MS is hardly the lone bastard disease bereft of fair representation and treatment. It merely seems that way to the people who own it.

Food for thought:

(This is an excerpt from a blog I wrote about the growing conflict in the clinical diagnosis of Multiple Sclerosis and how it relates to CCSVI,  trauma,Chlamydia pneumoniae,vitamin and mineral deficiencies and other causal factors in both MS and  CCSVI.)745056-fig2Probiotics_Info_from_siteshapeimage_9SpirochetesEx2[1]

Now that Lyme has become a hot topic, people are demanding better testing facilities. A fair number of people previously diagnosed with MS have learned they have Lyme Disease. That is another factor in the growing suspicion that MS as it is globally defined, is not a disease at all but rather a term used to pigeon hole people into a generic box of symptoms. Interestingly enough, some of these people also have CCSVI and been treated successfully with angioplasty.

This has been a fascinating puzzle for me but I have finally come to make some sense of it. Most venous anomalies are congenital, not to be confused with hereditary. Ten people can be bitten by ticks who harbor the spirochetes that cause Lyme disease. Statistically speaking less than half of them will actually develop the disease, other health issues not withstanding. We are beginning to get a clearer picture of “MS” with in depth review of the facts we have learned about CCSVI over the past several years. The narrow view that CCSVI is confined to PwMS has been blown out of the water. Some patients with other neurological disorders such as chronic fatigue syndrome, fibromyalgia and Alzheimer’s disease meet the criteria for CCSVI also. It’s no wonder that people are confused by the diverse laundry list of symptoms among those in the MS community.

Chronic Illness is not synonymous with failure.

fairy-tales-6-tn[1]Dignity comes from within. People who do not know what it’s like to have severe cognitive issues, balance problems, etc. cannot relate to how we feel, period. They don’t have to. The change has to come from within. When I gave away all of my stiletto heels something died inside of me. I wasn’t self absorbed or shallow but I liked my heels. They were an expression of my personality. I thought I hit rock bottom when I traded my shoe collection for a pair of AFO’s decorated with lilac butterflies. In fact it was only the beginning of my downward spiral into the dark abyss of self-loathing and pity.

My career as a Family/Mental Health Counselor was a great source of self satisfaction. People relied on me and knew that I was as good as my word. In both our church and community, my family was known as one who accepted challenge and thrived on service. My self-esteem was tightly bound to my professional and personal success. A people pleaser, “no” was not in my vocabulary. My husband, Rick, was proud of me for my accomplishments. Our home was the neighborhood hub of activity and service.

As long as relapses were mild and short lived, I adapted. It took a great deal of effort to “look so good” (Haven’t we all heard and winced at that patronizing remark?) My first neurologist and the only one I ever trusted once observed, “You are a patient who has no complaints and dresses up for doctor appointments to convince both of us that you aren’t sick.” When RRMS turned into Secondary Progressive I began to lose my place as the matriarch, organizer, confidant and center of my busy home. My life was over as far as I was concerned.

After my recovery I was again in uncharted waters. It took a couple of years to convince myself as well as my family that my value transcends the limits of my physical body. In learning to adapt to progressive disability I forgot that I always had options but chose to dismiss them. Lost in Cog Fog Hell, I lost respect for myself therefore didn’t deserve it from others. In my mind I became an unwanted burden to friends and family as I could contribute nothing of value. It is a self-made trap that we cannot afford to stick our heads in. My favorite saying is, “Be who you are and say what you want because those who matter don’t mind and those who mind don’t matter.”

After a rough new beginning I am stronger, older, wiser and less concerned about what people think of me. My life has come full circle. In a better place and taking the road less traveled, I don’t fear the future anymore. We are all better than that.

Steroid Use in MS

During my journey through MS, steroids worked wonders for me. My ON cleared rather quickly, my balance improved. I could swallow much better and my left side weakness improved by at least 50%. The relief was very welcomed, albeit temporary. Steroids don’t stop a relapse but can make parts of it more tolerable. That’s the good news. The bad news is that even oral prednisone can cause horrendous side effects.

Although I have all but recovered from MS/CCSVI symptoms, I have had to deal with permanent damage to:

  1. Pancreas
  2. Biliary system
  3. Skeletal system
  4. Reactive hypoglycemia to augment my diabetes.
  5. Osteoporosis is another gift from steroids. I had broken my jaw, shoulder, arm and fractured other less critical bones.
  6. Severe wound healing problems
  7. Cataracts
  8. Thin skin (My skin literally tears with little resistance)
  9. Abnormal Heart Rhythm
  10. Muscle Problems
  11. Dry Skin


My Temporary or transient effects:

  • Increase in appetite
  • Difficulty sleeping
  • Weight gain
  • Changes in mood
  • Increase blood glucose levels
  • Puffy Face
  • Staph infections
  • Trouble Breathing
  • Nausea
  • Bruising
  • Confusion
  • Unusual tiredness or weakness


Some of the more temporary side effects are :

  • Increase in appetite
  • Difficulty sleeping (insomnia)
  • Changes in mood and behavior
  • Flushing (redness) of the face
  • Rapid weight loss
  • Weight gain due to increased water retention. Increase blood glucose levels
  • High blood pressure
  • People with glaucoma have an increase of the pressures within their eyes
  • Worsening of symptoms in people with congestive heart
  • Irregular Periods
  • Puffy Face from Water Retention

These side effects usually resolve after a few days once the steroids are stopped.

Long term effects include:

  • Glaucoma
  • Cataracts
  • High-blood pressure
  • Heart disease
  • Diabetes mellitus
  • Obesity
  • Acid reflux/GERD
  • Osteoporosis
  • Myopathy (Muscle weakness is the most frequent symptom of the myopathy. Wasting of the affected muscles is common. Weakness of muscles may lead to unbalanced forces on the joints, causing a restriction in their range of movement and consequent joint deformity. A lack of muscular support for the spine may cause spinal curvatures (scoliosis).

Other symptoms include pain, stiffness and cramping, or the inability to relax the muscles. There may be breakdown of muscle fibers, releasing into the blood a red pigment (myoglobin) which is then seen in the urine.

  • Increase in certain types of infections
  • Cushing syndrome
  • Bleeding of the Stomach or Intestines
  • Thin Fragile Skin      
  • Low Amount of Calcium in the Blood              
  • Small Red Skin Lesions caused by Dilated Blood Vessels
  • Dry Skin
  • Pseudotumor Cerebri (Pseudotumor cerebri occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. The increased intracranial pressure can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.
  • Disease of the Nerves
  • Muscle Problems     
  • Cataracts
  • Injury of the Optic Nerve
  • Complete Stoppage of the Heart      
  • Slow Heartbeat       
  • Abnormal Heart Rhythm       
  • Chronic Heart Failure            
  • Obstruction of a Blood Vessel by a Blood Clot
  • Obstruction of Blood Vessel caused by a Fat Globule 
  • Vasculitis    
  • Fluid in the Lungs
  • Ulcers of Esophagus              
  • Acute Inflammation of the Pancreas
  • Lupus-Like Syndrome            
  • Rupture of a Tendon
  • Delirium     
  • Hallucination            
  • Seizures      
  • Trouble Breathing   
  • Enlarged Liver          
  • Abnormal Liver Function Tests
  • Impaired Wound Healing     
  • Kaposi’s      
  • Insufficiency of the Hypothalamus and Pituitary Gland             
  • A Rupture in the Wall of the Stomach or Intestine      
  • Anemia       
  • Large Purple or Brown Skin Blotches
  • Decreased Neutrophils (Type of White Blood Cell)     
  • Mood Changes        
  • Paranoia    
  • Mental Disturbance
  • False Sense of Well-Being    
  • Extreme Sense of Well Being             
  • Depression
  • Blurred Vision          
  • Optic Disk Edema    
  • Hemorrhage of Blood Under the Skin             
  • Absence of Menstrual Periods           
  • Inflammation of Skin
  • Redness of Skin       
  • Skin Stretch Marks  
  • Excessive Hairiness 
  • Acne            
  • Hives
  • Joint Pain
  • Muscle Weakness   
  • Loss of Memory      
  • Feeling Faint             
  • Sensation of Spinning or Whirling     
  • Dizziness    
  • Excessive Sweating
  • Rash            
  • Visible Water Retention       
  • Scaling of Skin          
  • Head Pain  
  • Hiccups       
  • Swelling of the Abdomen     
  • Numbness and Tingling         
  • Overactive Thyroid Gland     
  • Underactive Thyroid              
  • Abnormal Fat Distribution


“Stay hydrated”..RIGHT, leave me alone!


“Stay hydrated”..RIGHT, leave me alone!

Drink even if you think you aren’t thirsty: if you feel thirsty, it means you are already dehydrated and your body is trying to let you know. Of course PwMS may not get that message from the body to the brain, so keep a water bottle or wine skin attached to you, your bike, car etc.

Go to any CCSVI website and the words”keep hydrated” or “drink plenty of water” will be on every page or close to it. I use to think I was a little OCD about hydration until I met Daryl. Seriously, even many of us who have had the procedure are tired of hearing about it. The truth is that it is not simply a good idea, or necessary: it is critical that we stay hydrated. I am one of the lucky ones who can tell quickly when I become dehydrated. Some people have not been as fortunate. Feeling thirsty is a sign that you are not keeping ahead of the need for drink.

 Due to my own severe heat intolerance I also have hyperhidrosis (profuse sweating). If you are picturing a large person with a dirty tee shirt and huge armpit sweat marksyou have the wrong picture. As long as I keep my core temperature under the red zone, I look like any other old lady on the smallish size. It takes much planning and cooling equipment, as well as an up to the minute means of weather information. An individual can be severely dehydrated, particularly in the summer, and not be aware of it until it becomes a medical emergency.. It doesn’t matter if you are in constant A/C or not. People can sweat as much or more during as they do in the summer. It is quite possible to lose even more fluid during the winter months under all the flannel and knickers. Dehydration can and will be a catalyst for restenosis.

Walking in public places, church, meetings etc. can be embarrassing if you let it. I don’t. My health is more important to me than the “drinks are not allowed” signs in many businesses. Try to bring your sippy cup into the theater and see what happens. They all have “no dogs allowed” signs also. Well there are exceptions to every rule. The ADA allows access to service animals who are trained and certified to accompany disabled people in grocery stores, airplanes or any other building or facility open to the public.The law also makes allowance for the disabled to have “handicapped only” parking spaces. Of course enforcing the law in both the above situations has been a nightmare for many of us. I have  lifetime handicap license plates and 2 placards for cars in which I am a passenger. My service animal has all of her papers and certification on a laminated card I take with me everywhere she goes. (BTW in the US you don’t have to show any paperwork to anyone but it saves a lot of confrontation opportunities from ruining your day.)

So what do we do if we have to use other medically necessary non-traditional aids? You have options.   You can explain quietly that you aren’t trying to stiff the theater for the price of a Coke. That rarely works. You can carry a large purse but eventually you have to take the bottle out and actually use it. You can appeal to their compassionate side and explain your situation. That works at least 10% of the time. You could also have your doctor sign a “medical necessity” form. That option works for me. Should this all be necessary? In a word,hell no! (Ok two words) But we all know the crap we have to put up with when it comes to the rights of people who are handicapped, disabled or otherwise not the “average” citizen; whoever that may be, I haven’t met one yet. What we are talking about here is not setting up a wet bar in the county courthouse. We are talking about an unobtrusive innocent container of water.

I have written 7 or 8 blogs about how to beat the heat from absolutely free to $1000.00 & up. Since I have to wear a cooling vest, sometimes even in winter, I do what I must. If I needed a portable oxygen tank, I wouldn’t be as concerned about etiquette as I would be about passing out from low O2 stats.

Heat intolerance may lead to heat exhaustion under severe circumstances. If you experience signs of heat exhaustion or heat stroke, you may need to seek emergency medical treatment. These symptoms include:

•             Confusion

•             Loss of consciousness

•             Vomiting

•             Muscle cramps

•             Body temperature of 104 F or higher

•             Elevated heart rate

•             Rapid breathing

Some doctors may tell you that is heat intolerance is merely an inconvenience. However MS induced heat intolerance can result in heat exhaustion and stroke just like anyone else out in the sun too long. We don’t have to be in a scorching desert; a warm room can do the trick. Heat stroke can be fatal.

If you have MS, heat intolerance can lead to problems with your vision. This can range from blurred vision to temporary loss of vision. An increase in body temperature amplifies the distortion of your body’s nerve signals in those with MS. This is referred to as Uhthoff’s phenomenon.

What to do?

Stay hydrated and keep cool.There are a myriad of different cooling methods.


v  A cooling vest with a liquid Cooling System has been proven to be the most effective, affordable portable personal solution to heat stress. This is not a vest you soak in water which becomes slimy, can’t be worn under other clothing and doesn’t perform well in high humidity. This is not a vest with packets of frozen liquid that are bulky, heavy and quickly lose their effectiveness. This is a vest that is lightweight, breathable and uses NASA-developed technology to cool you with chilled water circulated through a network of microtubing. It costs a little more, but it works much better. Cost: approximately $500.00

This is the system I use:



v  An ice vest with packets of frozen gel is much cheaper and fine for most people. An extra set of gel packs is very convenient. You can have one in the freezer a while using the other.


$35.00 & up



v  Wrist wraps

v  Bandana cost: $10.00

v  Evaporative gardening hat: cost: $20.00



v  Make your own cooling vest:

Cooling neck wrap


v  One yard of 36″ wide tan cotton muslin will make 9 neck coolers. “Magic Crystals” are the watering crystals you put in the soil of your potted plants. “Moisture Plus” and “Soil Moist” are two brand names.  It is NOT vermiculite or perlite! These tiny beads absorb up to 100 times their weight in water, and swell  with the water a then give it off slowly to the plants, or to a hot neck in our case. They can be found in the garden department of discount stores, or garden centers. One package will make MANY neck-coolers.


v  Cut the muslin into 4″ wide strips (by 36″ long). Fold lengthwise and sew across the short (selvage) end, and down the long side, using a fairly short stitch length. Leave the other end open. Turn the tube right-side out. A pencil makes this step fast and easy. Press flat.


v  To contain the crystals in the middle section of the neck cooler, sew a line across the tube about 10″ from the stitched end. Spoon just 1/4 teaspoon of crystals into the open end and make sure that they slide down to your sewn line. Sew another crosswise seam about 15″ from the first seam, to contain the crystals. Finally, just stitch the open end closed.


v  (NOTE: since crystals vary in size by manufacturer, make ONE neck cooler as a sample first, soak it for 10 to 12 minutes, to determine the correct amount of crystals to use. The fully expanded crystals should fill the tube, and not burst the seam! The tube must be able to BEND enough to be tied around the neck!)


v  One note of caution: You will be tempted to add more crystals, thinking that more is better. However, these crystals swell A LOT. (1/8 tsp swells to about 1/3 cup of gelatinous balls).

v  Soak the collars in water for 8-12 minutes until they swell and then tie them on, The crystals eventually wear out and will not absorb as much water. However, they should last a month or two.


 To use your neck cooler, soak the middle of the cooler in water until the crystals in the middle bulge. The first soaking may take as long as ten minutes before the crystals absorb as much water as they are capable of. You can then tie the neck cooler around your neck. The crystals will slowly give up their absorbed water and the evaporation of the water should cool you for hours. The neck cooler can be re-soaked and used again and again. It should last about two months before the crystals lose their ability to absorb water.


Other Strategies:


v  Get a cheap spray bottle – fill it with water, adjust it to fine mist and spray it on your exposed skin for an instant chill-zing cooling effect.

v  Keep the back of your neck in shade (wear a cap backwards, or raise your collar) or put a wet handkerchief on the back of the neck. The sensor for our body temperature control system is in this area, and so with this method you can make the rest of your body think that you are “cool”.

v  Place or tie an icepack behind your head.

v  Wet all your hair, or just all along the hairline in a pinch. The evaporation of the water will cool your head (though it may make your hair a bit frizzy if it’s curly!).

v  Wear a bandana with water soaked in it and put it on your head. Or you can relive the 80′

v   Water misting fan. These portable devices are battery operated so you can take them with you wherever you go. As you mist and fan yourself, the water is evaporated on your skin, giving you an instant cooling sensation.

v  Soak a t-shirt in the sink, wring it out and put it on. Sit in a lawn chair (or other chair that lets air through to you) in front of a fan. Re-wet as it dries. Use lukewarm water for this so you don’t “shock” your system with cold water.

v  Wear a short sleeved shirt and put water on the sleeves only. If there is a breeze or fan blowing on you, you can actually get cold! Use a squirt bottle, the sink or hose if outside to keep your sleeves wet. If you are outside and wearing long pants and you put water on your legs, the water will cool your legs. Long skirts are also good for this. Just sprinkle the hemline with water.

v  Run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour.

v  Soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids wading pools are great for adults feet too.

v  Fill your bathtub with cool water and get in. Once you are used to the temperature, let some water out and refill with cold water. Keep doing this until you are sufficiently cold. Your body will stay cool for a long time after you get out. For a fast cool-down, add ice!





v  Wear nothing. (or as we say at our house, “ run around nakie” .If you’re in a situation where you can go without clothes, this can be the most comfortable and natural way to stay cool.

v  Wear next-to-nothing. Put on a swimsuit, or wear your underwear at home.

v  Wear summer clothing. Wear loosely-woven natural fabrics (cotton, silk, linen) rather than polyester, rayon, or other artificial fibers (with the possible exception of performance fabrics).

v  Wear light colors. Darker colors will absorb the sun’s heat and stay warmer longer than light or white clothing, which reflects light and heat. Wear natural summer clothing.

v  Cover yourself up. Covering up may actually keep you cooler, especially if the heat is low in humidity. In the scorching temperatures of the Middle Eastern deserts, traditional cultures wear clothing covering from head to toe. By protecting your skin from the sun beating down, you’ll also shade your skin. Be sure your clothing is made of natural fabrics and loose-fitting.



v  Lie on the floor. Warm air rises (since it’s less dense than cooler air) so it’s layered on top of the downward moving cooler air, which sinks lower. If you’re in a house, for example, stay lower than the warm air. Make your way to the basement or lower level. It will be coolest near the floor on the ground level.

v  Snorkeling system. Take a glass and fill it almost to the brim with ice cubes. Hold it up to your mouth and blow gently into the cup. The ice causes the air you are blowing into the cup to cool down drastically, and since the air only has one way out of the cup (the hole which should now be aiming right at your face) the cold air is forced out over your skin.

v  To put the “snorkeling system” to more efficient use, point a fan into a square of four cups filled with ice water and ice cubes. The cooler air in the cups have no where to go but out. Each night, refreeze the cubes and open the windows instead.

v  Sit in the shade. Find a shaded area and set up a water misting system that connects to an ordinary garden hose that can be found at home improvement stores. Sit there and let the mist cool you off.

v  Avoid peak sunlight hours. Take a cue from people in extremely hot climates and avoid going out between 10 a.m. and 3p.m., when the sun’s rays are hottest. You’ll also avoid a sunburn this way.

v  Close your blinds. Shutting your blinds and curtains during the day will help block the sun’s heat. As soon as the sun hits your building in the morning, close all windows and keep exterior doors and windows closed throughout the hottest part of the day. Do this until night falls and it’s cool enough to open the windows for the night.

v  Open the windows at night. Open selective windows so that cooler night air is blowing in throughout the evening. Leaving all interior doors open (including closets and kitchen cabinets) helps, too. If you leave them closed, they store the daytime heat and your house won’t cool off as much at night.

v  Cool down your house with fans. Position a ceiling fan, an upstairs window fan or an attic fan to draw off the heat collected in upper rooms and push the heat outdoors. Set up your portable fan so that the fan sucks up cooler air from the floor below, and blows hot air upwards towards the ceiling.

v  Make a DIY air conditioner. Put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice. Or, use one or more 2 liter bottles and fill them mostly full of (water – 70%) & (rock salt – 10%) (air – 20% for expansion) (the salt brings the temp of the frozen water down to a lower ºF), freeze them, then place them in a large bowl (to catch dripping condensation). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.

v  Turn off all heat sources. Don’t use the stove or oven to eat. Eat cold food, or use the microwave. Incandescent light bulbs also create heat – switch to compact fluorescents or LEDs. Turn off your lamps and your computer when you’re not using them. You should also turn off your TV since it gives off a lot of heat, as well as some plug-in power adapters.

v  Avoid steam. During the day, don’t take a hot shower, wash dishes and clothes or cook until after dark. Make sure your pot lids are tight-fitting. Make sure the door gasket seals on your oven, washer and dishwasher are in good shape and have no breaks or rips.

v  Adjust your pilot light. If you have a gas stove with pilot lights, make sure they are set correctly. If they are set too high, they will produce excess heat.

v  Put smooth white fabrics over anything in your house that’s fuzzy. For example, you could cover corduroy pillows with white satin pillowcases for summer, put linen slipcovers over wool sofas, or just throw white sheets over furniture. Light-colored fabric will reflect heat instead of absorbing it, and the smooth texture will give you an impression of coolness.

Okay what else?

v  Freeze a water bottle and keep it with you. Drink from it, or just put it on your skin.

v  In front of a fan (that is running) put a cup of ice. Stay in front of the fan and colder air will get to you.

v  Do not leave a fan on in an enclosed room when no one is present (unless it’s an attic fan). A fan does not cool the air already in the room; in fact, it heats it. The fan’s motor generates heat and even the circulating air creates a less significant amount of heat from friction. It just feels cooler when you are present because of natural moisture evaporation from the skin, which only cools your body if you are in the room. Save electricity and turn off all fans in enclosed rooms that are not occupied.

v  If your garage is under living areas of your home, leave your hot car outside to cool off before putting it in the garage.

v  If all else fails, go to the mall, library, church, movie theater or some other air-conditioned public building.

v  The early morning and evening are usually cooled down enough to enjoy your walk, run, hike, bike, gardening, or yard work.

v  During a heat wave, many towns and cities open up air-conditioned “cooling centers” in nearby schools and community centers, and will help you reach them. People with MS (or other medical conditions) can call their local government services for a list of cooling centers.

Dysautonomia and MS/CCSVI Part 1


Dysautonomia is a medical term used for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. This means that the automatic things your body always does may not be happening so well.

 Dysautonomia is a dysfunction of your autonomic nervous system. Obviously, the autonomic nervous system is very important to our bodies. The heart, stomach, intestines, blood pressure, body temperature regulation, endocrine system (glands), pupil dilation, and muscles (in the skin, around blood vessels, in the eye, stomach, and in the heart) are all controlled by the autonomic nervous system. A malfunction of this system impacts every organ of the body. Most of the time we are unaware of our autonomic nervous system working in its usual “involuntary” manner. It controls our systems automatically and we usually take it for granted. It works 24/ so we don’t have to rely on reminding our hearts to beat for instance.

Some patients develop symptoms after a viral illness, immunization, or trauma. Vaccines play a larger role in chronic illness than is generally known. Children may have symptoms after a growth spurt, common in early teens.

Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families.

When we stand up – gravity pulls about 1/3 of our blood to the lower part of our body. Then our autonomic system responds and immediately tells our brain we are standing up and to do three things:

  1. make the heart beat faster
  2. increase the force of the heart’s contractions and
  3. tighten blood vessels in the lower part of the body to about three times it’s previous tightness.

The effect forces  blood from the lower half of our body into the upper half. Then, our blood pressure regulates properly and we are good to go.

In some people with dysautonomia the brain does not get these messages correctly and their blood stays in the lower part of their body and then their blood pressure drops and their heart rate increases.

Low blood pressure has nothing to do with our intelligence or how smart or clever we are. It can cause cognitive dysfunction such as short term memory loss .It affects their ability to think clearly and to concentrate. This impact on concentration is usually brief or transient.

Some people are overwhelmed by their symptoms and have to lay down all the time. The heart rate often shoots up as the body responds to a drop in blood pressure. This can be the cause for a lot of tiredness and fatigue and generally feeling washed out.

It is often difficult to see the symptoms of dysautonmia. A general physician sometimes misses the clues leading to a proper diagnosis. Cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia children. Sometimes neurologists get involved though personally I wish they didn’t. Research is being done at the Cleveland Clinic, Johns Hopkins, Mayo Clinic, Medical University of Ohio, National Institutes of Health, NY Medical College, Vanderbilt Medical Center and others. It is exciting and revolutionary, and there is tremendous hope on the horizon. Tragically, there are also extremely rare fatal forms of dysautonomia but this is not at all common in children.

The average person may have never heard of dysautonomia before, but progress is being made in this field of medicine every day and word is getting out. With time and awareness, more and more people will start to understand the various forms of dysautonomia and more and more people will know what it is. Thanks to medical science and compassionate physicians and researchers, there is tremendous hope.

For additional information on the history of dysautonomia:

Dysautonomia: A family of misunderstood disorders



Symptoms of dysautonomia may include:


  • tachycardia (extremely fast heart rate)
  • bradycardia (slow heart rate)
  •  palpitations
  • chest pain
  • dangerously low blood pressure
  •  wide swings/sudden drops in blood pressure
  • orthostatic intolerance (the inability to remain upright)
  •  excessive fatigue
  •  exercise intolerance
  • Dizziness
  • Fainting
  • near fainting
  • gastrointestinal problems
  • nausea
  •  insomnia
  • shortness of breath
  • anxiety
  • tremors
  • frequent urination
  • convulsions
  • cognitive impairment
  • visual blurring or tunneling
  • migraines

Pharma Gave Us Super Bugs and Walked Away.

What doesn’t kill us won’t necessarily make us any stronger. We are a nation of people who don’t want to wait for the bus, a hamburger or the newest car to hit Detroit. Repair shops used to fill downtown areas, now it’s easier to buy a new anything than have the old one fixed. Instant gratification is our birth right here in the western world. Everything from diapers, clothes, relationships and cell phones are disposable. No one should have to deal with an inconvenient headache with so many remedies only a bathroom medicine cabinet away.

If I had been born in the 1900’s I would have far outlived my life expectancy for that time. That’s sobering to a person with a medical history that reads like a tragic romance novel. If we can buy an iPad which will allow us to stream “Criminal Minds”, upload dozens of pictures to be sent around the world in under a minute while we chat with our Facebook friends, we certainly shouldn’t have to deal with pesty annoyances like colds, ear aches, hammer toe or pancreatic cancer right?Good health rained down on us in the 50’s with the use of wonder drugs like antibiotics, and steroids.

Now for a reality check. Overuse of these life saving marvels is responsible for the proliferation of bacteria known as  Methicillin Resistant Staphylococcus Aureus – the infamous MRSA – a bacterial species resistant to methicillin and all other penicillinsDrugs like vancomycin and teicoplanin were held in reserve to compensate for the failure of health care providers to keep a reign in on antibiotic overkill. The resistant bacteria grew stronger. Since 1998 when MRSA killed a handful of otherwise healthy children, the infection rate now lies in the tens of thousands range. It kills more people than AIDS. One of the easiest places to get your own super bug is at the corner hospital or clinic.

Antibiotics are useless against viruses like the common cold but are prescribed daily for it nevertheless. The drug companies helped put us in this mess and then decided to walk away. There have been no new class of antibiotics since 1987, nor are there likely to be. They have abandoned new research for antibiotics because “there is no profit  in it.”! It is expensive to develop compounds which will only be used for short periods of time. The real profits come from chronic illness. Convince someone they have bi-polar disorder, ADHD, osteoarthritis, high blood pressure or high cholesterol and you have hit pay dirt.

Steroids, antibiotics  and other medications which bring fairly rapid relief leaves us in a state of Adrenal fatigue and weakening of our immune systems.

Tomorrow at least a dozen people will walk into a neurologist’s office and be given

  1. A diagnosis of Multiple Sclerosis
  2. A dire warning about their condition  
  3. A bag full of literature with color coordinated designs. There is usually a picture of a beautiful smiling woman on the beach watching her handsome husband fly a kite with their 2 healthy children as she strolls easily along the waterfront.
  4. A written prescription for Avonex, Tysabri or some other disease modifying drug . The annual cost is anywhere from $32,000 to $43,000 per year. By the way, the drugs were designed for a disease these people don’t have but that is irrelevant to this issue.


Drug companies refuse to fork out the bucks to constrain their man made bugs but also prevent people from availing themselves of remedies that DO work:

  • Natural remedies like colloidal silver
  •  aloe vera
  •  garlic
  • medicinal herbs
  • high-potency nutritional therapies

These have been attacked, censored and criminalized by physicians and Big Pharma alike.

Now we have a problem handed us by drug companies with no more chemicals to throw at it. We also have a corrupt medical system that censors natural treatments. It is a far reaching one at that. Routine operations like hip replacements or organ transplants could be deadly because of the risk of infection. A person with a minor surgery is at risk for infections that can put him/her in intensive care. Sally Davies, the chief medical officer for England, said global action is needed to fight antibiotic, or antimicrobial, resistance and fill a drug “discovery void” by researching and developing new medicines to treat emerging, mutating infections.

Carbapenem-Resistant Enterobacteriaceae, or CRE, are bacteria that are unique in that they are resistant to most antibiotics. They typically live in the soil or water. Patients infected with the bacteria are typically not symptomatic, but can develop pneumonia, kidney and bladder infections, and bloodstream infections. They began appearing in the U.S. roughly ten years ago, and have since spread to at least 41 states. There is no effective treatment yet available for the bacteria, which can linger in the body more than a year, and mortality rates hover at 40 to 50 per cent. Disturbingly, the patients are not symptomatic, as the bug waits in the body until the immune system is compromised and an infection sets in. The first known U.S. case was detected at a North Carolina hospital in 2001.

‘What’s really astonishing in all this is the delusional belief that only Big Pharma can discover new drugs that kill these drug-resistant bacteria. In all of western medicine, there is never any discussion of the all-important  role of probiotics in establishing healthy gut flora, thereby crowding out the dangerous strains. If “anti” biotics are the problem, then “pro” biotics are the solution’.

Before you decide that I have nothing else to rant about, I was hospitalized with a staph infection that caused me to drop down to 89 pounds and months of wound care. My husband thought he was taking me home to die; my doctor as well.



Steroids: A band-aid, not a cure..

I am on another anti-steroid campaign. I’m not sure that I am capable of re-wording the information to make it more palatable, but I’ll give it a go. For over 30 years we’ve known that steroids can routinely cause over-activity of adrenal hormones, which produces Cushing’s disease. They can also cause muscle wasting, hyperglycemia, water retention, bruising, insomnia, serious mood changes, menstrual problems, impotence, loss of libido, or even allergic shock and diabetes and its evil twin, reactive hypoglycemiaI have reactive hypoglycemia, osteoarthritis with the broken bones to prove it as a result of IV Solumedral therapy. New studies show that much lower doses of steroids are just as damaging.

Like antibiotics, steroids are one of the most abused class of drugs in this country. Daily low doses of prednisone can double your risk of hip fractures and cataracts. I have had my share of fractures and recently learned I have cataracts. Steroid  treatment is the cornerstone of managing diseases and conditions where inflammation is the prime issue. Intractable pain is good motivation for steroid therapy. Crohn’s disease, rheumatoid arthritis and inflammatory bowel disorders respond well to steroids. They have a place in medicine, just not the prime spotlight.

Irreversible damage from steroid treatment is no longer the  rarity it was when it was used in emergency situations 15 to 20 years ago. Some of the most dangerous among them include:

  • liver damage, jaundice
  • Fluid retention
  • High blood pressure
  •  Increases in LDL (bad cholesterol)
  • Decreases in HDL (good cholesterol)
  •  Renal failure,
  • Severe acne
  •  Trembling



  • Shrinking of the testicles
  • Reduced sperm count
  • Infertility
  • Baldness
  • Development of breasts
  • Increased risk for prostate cancer 


  • Growth of facial hair
  • Male-pattern baldness,
  • Changes in or cessation of the menstrual cycle
  • Deepened voice 


Why do physicians make steroids a first line of attack? They give the appearance of the instant miracle cure the patient expects Too many doctors prescribe these drugs and cross their fingers that the patient feels better quickly and find a different practitioner before the next bout. They refuse  to believe that steroids can cause the terrible damage that drug companies have long admitted to. Even they can’t give us a line of BS with a straight face when it comes to these drugs because the side effects easily lead straight back to them.

The fastest relief is what medicine in this country is all about. (After profits of course). The answer to what ails us is to  suppress inflammation and the immune response, working against the body. If there is a fever lower it, if inflammation is present provide steroids to remove it. If it appears we may have a virus or a bacterial infection just quell it with antibiotics. This way of doing things can be effective in the short term, and important in life threatening situations, but potentially devastating in the long term especially when over-used. Many of our most debilitating diseases can be traced to some form of inflammation. Those of us with Multiple Sclerosis are learning  this and hoping our doctors follow suit.

This type of medical care eventually weakens our immune system making it less effective while the disease burrows deeper into the body and must be dealt with in the future. Doctors seek immediate resolution of present symptoms merely to treat a chronic condition later on. Why do you think so many of us have chronic illnesses?  The key is to NOT suppress symptoms unless it it becomes perfectly clear that it is absolutely necessary.  Symptoms are a sign the immune system is working and doing its job. We cannot continually weaken tImagehe immune system hoping to kick start it further down the road without some unfortunate outcomes.