Monday, March 31, 2014

15.  Reflecting on Red Square - The Tourist Days

A man on a thousand mile walk has to forget his goal and say to himself every morning, today I'm going to cover twenty-five miles and then rest up and sleep.              Leo Tolstoy,  WAR and PEACE

Give yourself some time to enjoy!

Leading up to my entrance to Pirogov evening of April 6, I'm now in Moscow and conquering the city in my own brave tourist way. Left my coat in the London flat, so had to buy one here. Should have considered the currency exchange, but it's warm. And definitely needed it. This week is only supposed to be in the 40s. Sunny early, snowed on my walk back home from Red Square.

For those of you who end up in Moscow for HSCT, I hope you can add some tourist days. Sure, you might have to go backwards up the stairs inside St. Basil's, on your bum, like I did. But even that will be worthwhile. Memories of this beautiful city will go home with my soon-to-be brand new healthy immune system when I leave.

I may not stop the takeover of the Crimea or the Ukraine, but I will make a very good personal impression on this city as a world traveler!  Always be kind, be patient, be grateful. Don't be loud, brash, demanding - it only makes it easier for people to stereotype your country.  Like we've done with the Russians at times. I've found nothing but courtesy and open friendliness. It's a small world, and traveling to Moscow for HSCT is perfectly fine. Do it!

Random travel notes:

  1. You will want to use a VPN service. I recommend  It's $10 a month and it looks like you're using your computer from NYC (in my case) so less likely to have sites blocked or slow or non-performing in English. 
  2. Pack light for layering (cashmere/silk/light wools this time of year). The weather changes regularly. For those of you from anywhere in the USA but California, you may already be used to sun in the morning and snow by afternoon. 
  3. Europe electric current - bring your converters and I recommend the ones that are also surge protectors. 
  4. Old shoes only! Do not travel with new shoes - ever! If you've got to walk, the rattiest old comfortable pair will do. Preferably not 'tennies' as they're a sure-bet ID for Americans. Black leather is always good. Don't underestimate the wisdom in this suggestion. Blisters will ruin your trip. It's not a fashion show. You will walk more than you expect to, everywhere.
  5. Do not pack a bunch of food from home. You can buy anything here in Moscow (or anywhere else) including fast foods, all other products (just about) you're used to from home. PLUS you ought to broaden your experiences by eating local anyway. 
  6. Do not be afraid, be cautious. A traveler who is aware of surroundings is a safe traveler. Moscow, during the week they intend upon taking over the Ukraine, is quiet and unmoved by the drama playing out on TV. If you or your family are worried, think about how the USA daily life was when we were at war in Iraq, Afghanistan, etc., etc., - it's like that here, too. Not to worry.
  7. I did pack one separate suitcase with items specifically for hospital, and I have not opened it through my tourist days. It's kept clean, antiseptically sealed inside (ziplock bags, etc) and I think this was good planning. Also easier to manage.

I'm sure I'll think of more. If you're like me, 'doing' eases tension. A lot of the general anxiety I experienced ahead of leaving for Russia and HSCT was spent learning everything and organizing the packing. Stress alleviated setting up the trip details, and filling my hospital suitcase. Whatever you need to do to de-stress, do it!  And once you're here, it's all going to be just fine.

Maybe right now I can only do 3 miles a day on my way to my 1000 miles.  But I'm still on the move, and it's a beautiful world out here!

Friday, March 28, 2014

14. The Flood That Might Break the Dam - HSCT Patients, Themselves.

Деревья скоро садят, да не скоро с них плоды едят.
One generation plants the trees, another gets the shade.

I've been taking a break in London, filling up my senses with art and doing a little work.  My brother just emailed me, questioning if this is all a ruse to hang out in London and then Moscow, shopping and playing. And I can see how he might get that idea (he knows me).  But then he did a remarkable thing. He called me "brave".  And you know what, I am!  I might be just a shadow of my former self, but I AM a brave shadow!

I'll take that "brave" and add mine to the many who have already done this and in whose footsteps I follow, because we're learning from one another that THIS is the only thing that truly arrests the immune system's assault on our nerves, bodies.  HSCT has been around for more than 25 years, and is proven to work for cancer. Dr. Slavin, Tel Aviv, Israel, (known as the father of HSCT for autoimmune diseases) has been using it to stop the body's immune system even before cancer develops, when people with MS, or CIDP, or Sjogren's or even Lupus and many others are suffering not just their own illness, but also the serious side effects of the 'accepted' pharmaceutical treatments.  Look up Tsybari's side effects if you want to see brave!  Or those of the steroids that are often the only or last (and cheapest) treatment. They both are likely to kill you.

So 'Brave' is relative.  

But what I wanted to say is that this generation of HSCT patients are opening the door for it to become mainstream so future patients will not have to seek out clinics in far-strewn areas of the world and wait many months just to get a slot in line.  Dr. Fedorenko in Moscow is now scheduling into February, 2015, and is being flooded with applications for treatment. 

We are a flood tide.  And yes, we're brave. Just not brave enough to go through the FDA accepted treatment regimens that are not working. 

We're planting the trees so those who come after will have the shade! 

I feel brave!  And others have already provided shade for me.  I'll plant even more for you.

Day after tomorrow I fly to Moscow.  All things go well, and I begin my HSCT testing on April 7 and about 4 days later, the procedure itself.  

Saturday, March 22, 2014

13.  One Person Can Make a Difference:  HSCT Feature, "60 MINUTES", Australia - Our Own Kristy Cruise + more

"Although on a conscious level a man lives for himself, he is actually being used for the attainment of humanity's historical aims. A deed once done becomes irrevocable, and any action comes together over time with millions of actions performed by other people to create historical significance."                              

                                                  Leo Tolstoy,  War and Peace

I had in mind I'd posted this link before, but I think I posted it only on Facebook and not on my blog, so I'm posting it here.

This is the recent "60 Minutes" segment featuring my friend, Kristy Cruise, a nurse who went to Moscow for her MS.  It is notable here that in Australia BIG Pharmaceutical companies cannot advertise on the media, therefore they can't hold pressure of ad revenue to keep stories like this one off the air. This would, in my opinion, never air on USA TV. Next time you watch TV, notice how many ads there are for drugs.  They're definitely not interested in this story getting out. They make far too much money on chronic illnesses.  But that is a side note.

The story is getting out anyway. Kristy, one person, has allowed her story to be used "for the attainment of humanity's historical aims" and all of us in these early years of HSCT 'cure' are doing our best to get the word out to those out there who feel alone, isolated and terrorized by their autoimmune illness as well as by the medical treatments they're allowed.  Our hope is that the collective rising flood waters of patients demanding cure will break through that dam of Big Pharma's big money blocking same, and that this treatment will soon be mainstream for all autoimmune sufferers who want it.  It's serious, true, but no more devastatingly so than the illness itself, nor the current endless maintenance drugs and IVIg side effects.  So here is Kristy's story.  

Click the photo to play 60 Minutes segment:

Kristy also appeared on "The Today Show" in Australia, and has an excellent blog:

Kristy isn't the only one. There are heroes like Lorraine Saipe, whose article appeared in her regional newspaper (also Australia):

Lorraine just got finished with her HSCT in Moscow about a week or so ago. And already she's helping others along the way, getting the word out.  

And there are quite a few others whose blogs and posts you might want to consult if you're looking for help or information regarding HSCT:

Brooke Taylor Slick is amazing! Here's her blog:  

Having named only a few, there are many many people who are working to spread the information that the Big Pharma-controled medical community seems loathe to convey. There is a viable option for remission. For MS, over 80% success rate with HSCT. From my unscientific notes over 3+ years, it's a little higher for CIDP patients, too.  HOPE!

And in the 'FILES' tab on the Facebook group, you'll find a wealth of information, but you probably have to join the site first so perhaps this link will not work:

One voice becomes many voices. Exponential in nature - the tidal wave is in action! 

Excuse me now - London awaits!

Friday, March 21, 2014

12. LONDON:  Life is Short - LIVE WELL!

Кого жизнь ласкает, тот и горя не знает.

He dances well to whom fortune pipes.

Краси́во жить не запрети́шь.        

                                                Literal: You can't forbid living beautifully.

Yes, I'm on my way to Moscow now, but of course it's not always a straight line we walk, is it. 

I am having a pre-HSCT break in London for 10 days, then Moscow for 7, just enjoying the tourist part of my trip.  I'm fortunate, I know, and I'm in Europe often. I'm an antique dealer, and this is part of my work, too.  I'm stopping off in London for a bit, enjoying the city and living the life. 

So this posting is mostly for my family who are following along.  Here is my South Kensington flat that overlooks a little park. This probably looks familiar to my kids and grandkids.  They've been here before with me:

The flat has a nice bedroom, but my luggage was all over it, unpacking, so it didn't get a click. There is a small flight of about 7-8 steps up to a little indoor veranda/sunroom off the bedroom, and a door there that leads out to my roof top patio with plantings and table, benches.  I love this flat! 

And London is LOTS of walking, so I'm adding Prednisone to my load of pills just to get more out of my legs. Prednisone, if you could see it, would look like this, I'm pretty sure:

My CIDP feet/legs (such as they are) will wander me all over London this week. Today I just stayed outdoors and enjoyed the blossoming of Springtime. Here's St. James' Park, and if you do a 180, you'd be looking at Buckingham Palace. I began my walkabout there and spent 5-6 hours on these legs today. Benches abound.  And I did drop into 2 churches. To my great pleasure each had fine string orchestras practicing for their evening performances. So, having been performed to today, I bought a great seat for tomorrow night's "Kings of the Dance" performance at the London Coliseum.

Never underestimate the perfect placement of a plethora of benches throughout UK and Europe. They are a CIDP patient's saving grace. A bit of a sit, the legs are ready to go again. Otherwise, you just have to fall down now and then to get some rest. 

Oh, yes. It's definitely London.  That's Trafalgar Square and the National Gallery ahead:

11. The First Thing You Feel is 'Alone'

Оди́н в по́ле не во́ин.                   One can not conquer alone.                                                                  Literal: Single man in a field is not a warrior.

When you learn that you have CIDP, the first thing you begin to feel is 'ALONE'.  No one you know has ever had it. No one you know has ever heard of it. Most doctors have never heard of it, which is why sometimes it can go undiagnosed and progress to life-threatening levels or put you on ventilator, in a wheelchair, etc.  For me, I was diagnosed quickly so in the course of 12 days I was partially paralyzed to my waist only, and not to my diaphragm (which can stop breathing and you just die if not on ventilator).  Sure, I could barely walk and I hurt like crazy everywhere, and I couldn't stay awake or think straight - the inside of me was all raging, no matter how normal I looked on the outside. It's isolating when you can't really find words to explain nerve pain, nerve damage. 

But even if you're fortunate enough to have a quick diagnosis, CIDP or MS or Lupus or any of the many other autoimmune disorders can leave you searching for information, answers, a community.  

        "But you look so healthy!"

        "Are you sure it's not all in your head?"

        "I'll bet you just need exercise and to start eating right."

Those are statements you'll hear from people who do not have CIDP.  You'll hear them often.  So often, you might start feeling even more alone than you felt when you heard the diagnosis: CIDP.

I have been very fortunate to have very supportive family, but even so it's hard to explain what this is like inside my body, when the outside still looks the same.  Many others I know, though, have had very difficult time with family. Some couples ended marriages through their CIDP time, unable to get through the crisis that is chronic debilitating illness. 

I told you earlier I would give some guidance and connect you with people, in this case, who have or did have CIDP (some are 'cured' for all intents and purposes, having already gone through HSCT). The wealth of knowledge and support shared in these groups is phenomenal, and is your armor and line in battle.  I highly suggest joining the following ones on Face Book (of all places!) and you might have to ask to join as they are closed groups (not all of your friends will see what you're writing or be able to read the group's postings, saving family members and friends from worry).  

Some of the groups I found very helpful, supportive, informative:

And these about HSCT ( )

And this last one is about the prospect of finding yourself en route to Moscow, Russia, as I currently do, and to your own hopefully full remission or 'cure' via HSCT:

You'll stop feeling so alone. You might even begin to feel like a true WARRIOR!  It's empowering to learn, engage, suit up, do battle. Don't let anyone tell you there is no cure. Don't let anyone tell you you must put up with endless 'maintenance' treatments and drugs, IVIg and plasmapheresis, and the side effects of those.  Don't let anyone make you feel alone!

                          But these are just people, patients themselves.

If you find yourself thinking that, and thinking that you prefer to rely upon your Dr. alone, know that among these fine people are doctors, nurses, scientists and all people who have or did have CIDP (or MS, or Sjogren's, or Celiac, etc., etc.,), and share their knowledge of what works, what does damage, what can help and how to deal with your immune system trials and the people you live with who think "you look completely normal".  

Remember in earlier posts where I linked you to Kristy Cruise's segment that just aired on "60 Minutes"  in Australia?  She's just a normal person - a patient herself.  Well, and a nurse. And she's just one in an entire battalion of warriors that stand with you.  Welcome!  You look like absolute hell on the inside, and we all 'get it'.  

Wednesday, March 12, 2014

10. My Final IVIg Series - Begun!

Близо́к локото́к, да не уку́сишь.

So near and yet so far. Literal: Your elbow is close, yet you can't bite it.

I've just begun my final series of IVIg (intravenous immune-globulin). I'll be here 7 hours today, tomorrow and Friday, absorbing the immune globulin cells of more than 1000 donors - the very expensive but life saving "goo" that we all depend upon to keep our immune systems from desolving the myelin sheathe from our nerves.

I've depended upon it for over 3 years now, and it's served me well and allowed a lot of healing to take place, but it's not without cost.

IVIg side effects can include blood clots, (pulmonary embolism is most common); elevated blood pressure (though some Dr.s will tell you that's not true); migraine and it's more serious condition, aseptic meningitis).  I've had elevated BP from it and seriously debilitating migraines for the last year. I feel like I'm in line for septic meningitis, the natural progression.  I'll be happy to leave this serious treatment behind me.  There is also the remote chance of getting some disease from the IVIg, itself.  Or, as happened to me, MRSA or staph infection from all the time spent in clinic.

And it's the one that comprises the biggest share of the $244,000 per year my 'illness maintenance' costs.

Someone is profiting from my suffering, and that of so many others with CIDP, MS, other serious autoimmune illnesses.  And keep in mind, the majority of these have lost their job, had to go on SSDI (Social Security Disability Insurance) in order to get medical care.  Taxpayers, make note.

HSCT eliminates this expensive maintenance treatment and is a one-time fee of $45,000 to $150,000, depending on where you go to have it done.

There is a wonderful new award-winning (architecture) hospital I can view from my house, in the valley below us.  So near and yet so far.  They do HSCT for cancer patients, safely and routinely. They won't yet do it for people like me.  So I must pay out of pocket and travel to Russia to get healed.

So near and yet so far!

Monday, March 10, 2014

9. This is what it's about:  LIFE

Бережёного Бог бережёт.

The Lord helps those who help themselves.

 Literal: God keeps those safe who keep themselves safe

Just a quote today.  I think it says everything.
   Dmitriy wrote: 
"As were talking last night my wife and I reflected on something. Right now we are talking about our relocation for my new job and putting an offer on a house. Several years ago we were talking about how to apply for disability for me because of MS. This is the difference that HSCT made in our lives"

It's about getting your life back, after all.  Nothing more, nothing less!

Saturday, March 8, 2014

8. Gathering Accurate Information

Чем да́льше в лес, тем бо́льше дров.

 Literal: The further into the woods, the more firewood you'll encounter.

I thought my next post (this one) would be about the amazing people who pay it forward - those in our online groups who have gone through HSCT and come out on the other side healthy, able to walk again (after years in wheelchair, or cane), with their energy returned and their lives back on the 'LIVING FULLY' setting.  

But then I saw a post that made my heart almost stop.  One woman in a Southern USA state said that once she posted her intention to have a "Stem Cell Transplant", she lost many many FB friends, and some of her own family and home town won't talk to her.  They, in their ignorance and self-righteousness, thought that she was going to benefit from embryo stem cells, which they found both repugnant and 'Un-Godly", immoral.  

So allow me to clear up that issue here for anyone reading along who wonder about the process I'm about to go through.  It is HSCT - Autologous (from my own body) Hematopoietic (Blood) Stem Cells.

No human embryos are sacrificed in order to cure CIDP, MS or other autoimmune ailments in this process.

When you get chronically ill, you begin to dig deep - go further into the woods, in order to help yourself since the current 'treatment protocols' are all nearly as great an assault as is the CIDP, and you are a bit on your own to learn all you can, gather all the firewood you'll need to proceed with your own inner fire that leads you to a curative HSCT, even if it's in Russia.

The article in the following link is a good basic overview:

AMA Basics of Stem Cell Research

Hematopoietic Stem Cell Transplantation 

Peripheral Blood Stem Cell Transplantation

I found initially that just one location in the USA was actively doing HSCT for autoimmune disorders like CIDP, MS and others, and that was at Northwestern University, under the research of Dr. Richard Burt.  Now in the 3rd phase of a clinical trial, Dr. Burt has been performing HSCT for more than 10 years already for autoimmune affected patients, and has a few more years to go before full FDA approval is achieved. This is a sore spot with most of us because it only takes a couple years to get a new 'endless maintenance' drug approved, sometimes even less, and short shrift is given life saving cures like this that are being done already for many other patients (Cancers, Lymphoma, Leukemia, etc. etc.) throughout the USA. The study is only to gain FDA approval to use this life-saving treatment on disorders of the immune system, before they turn into cancer.  

Dr. Richard Burt, DIAD (Division of Immunotherapy and Autoimmune Diseases)

While some insurance companies are already agreeing to pay for HSCT at Chicago, Illinois with Dr. Burt (BC&BS, Aetna, United, USA Federal Empoloyees Ins, Medicare to name a few) my own Kaiser-Permanente is not. They will wait until I get cancer or until the FDA final approval is in place, even though it's agreed this procedure is saving MS and CIDP (etc.) patients' lives and futures.  So for me to go to Dr. Burt in Chicago, the quote is more like $155,000 plus apartment/hotel and travel expenses.  Plus the study is tightly defined and so it's possible I, like many others, would be turned away owing to the results of a capricious EGG test result or to age. One out of the stage 3 testing, and fully approved, I might be too old to get HSCT.  


I've gone deep into the woods!

Friday, March 7, 2014

7. Good Blogging (my apologies for not editing)

Брань на во́роте не ви́снет.

Sticks and stones may break my bones, but words will never hurt me.

 Literal: The scolding won't hang on one's collar.

If you've read this far you know I'm not a great writer, and that I don't edit at all.  Please consider this posting an apology.  Sorry!

Thursday, March 6, 2014

6. Knowledge is Power - Put your money where your mouth is

Уче́нье свет, а неуче́нье тьма.

Knowledge is power.
 Literal: Studying is light; not studying is darkness.

When it comes to WAR and PEACE, it's worthwhile to look at what w're doing to achieve each here in the US.  And nowhere but the USA so vividly declares itself than by budget allocations.  Consider this:

And funding for pharmaceutical 'illness maintenance' in the USA? 

You'll want to review the US Gov's 2006 report from which these stats were taken:


NOTE: And it's amazing to think that the USA pharmaceutical industry spends more on advertising than is spent on R&D - I don't know if 'advertising' covers the lobbying and huge investment in legislator's election funding (ergo decision making) or not, but why do they need to 'sell' so hard if the medications actually work?  You understand this means more than half of the $244,000 per year my own pharmaceutical 'cash cow' contribution to BIG Pharma has gone to line pockets (and sway minds) of everyone from the FDA, to legislators, to the doctors themselves. Now extrapolate that figure by the number of chronically ill people in the USA (more and more each year) and you begin to get the picture. No wonder no one is funding research into actually curing people.

You'll want to read the article that screen shot came from, so click this next line:

Big Pharma Spends More On Advertising Than Research And Development, Study Finds

But with a self-admitted full AUTOIMMUNE DISORDERS EPIDEMIC threatening our personal, familial, and economic safety at home, Consider the budget for research into cures for all 80 Autoimmune Disorders the NIH (National Institute of Health) says we allocated (sure, it's a 10 year old graph, but things have changed very little:

I don't want to beat a dead horse here, but just to lay the groundwork for why it's necessary for patients to take their health into their own hands, and to research and find who's really being cured and how.  That's what I've spent the past 2.5 years doing.  Oddly enough, I've learned most of it from the very people with Autoimmune Disorders, themselves. Ground roots forums on FACE BOOK, and sharing forums, blogs like this one.  It's like an underground railroad, chugging along to take patients to safety and to cures.

For me, these groups have been tremendously important. And if you're reading this because you have CIDP or others, Examples of autoimmune (or autoimmune-related disorders included below), you'll want to look for other people who are researching on their own, getting cured, working to help others find the underground railway to health:

In my next post, I'll try to connect you with some help, and will tell you about the most valuable bunch of people I know these days (outside of my family and close personal friends) - people like me (and you) who are searching for their own answers, for the return of their own good health. . . . . . . . . . . . 

5. There is no cure.

Что пнём об сову́, что сово́й об пень.

Have you any idea how much damage that bulldozer would suffer if I just let it roll straight over you?

Literal: Whether you hit an owl with a stump, or a stump with an owl.

It's shocking to hear that something you did not have 14 days before will now take your life away. When I was initially 'felled' by GBS, I was told it is an acute attack and usually subsides within 3-6 weeks after which the body will heal the damage to the nerves. My Neurologist said most people recover all or nearly all of what they lost, and it's a waiting game. Healing nerves can take up to 5 years for optimum return to normal.  But it's comforting to know that I hadn't lost my use of my legs permanently, and that eventually I'd have my normal life and health back. 

Guillain-Barre' Syndrome is the acute one-time attack, can be brought on by illness or a flu shot. 

With GBS, you have hope. You believe the Neurologist that in a few weeks of IVIg treatment, the immune system will revert to normal and stop attacking your own nervous system. Sure, you can't walk and you sleep all the time right now, but in months or years things will return to near normal.  That is awful, but it's hopeful.  Gets you through the first few months.

"What we're trying to do here is stop a freight train". That's what my Neurologist said. So full-on treatment with various pharmaceuticals began. Within days I went from being someone who never took vitamins or anything, to someone with many pills, divided into one of those segmented containers:

Plus IVIg (intravenous immune-globulin) 4 days at 28-day intervals.  IVIg was a godsend then. By a few days after the IVIg treatment course, I had improvement. It essentially distracts the body's T-cells (etc) from dissolving the myelin sheath from one's nerves, and they can heal. Slowly. 

The body can repair myelin sheath relatively effectively but only by microns per day. Hence the reason they say it might take 2-5 years to fully heal from a one-time acute GBS attack.  

For the first week or two following IVIg, yI could tell I was doing better. It's obvious. And then in that last week I would decline back to how bad I'd been before IVIg.  That decline in 4th week is telling the Dr. your immune system isn't stopping, is now into the chronic version. So now your GBS is officially CIDP.  While most Drs. will eventually see or know of a GBS patient, rare as it is, most will never have a patient with CIDP. Most don't even know what CIDP is. At least my Dr. knew both, and I was fortunate to have quick diagnosis. Most are not so fortunate and so don't get helpful treatments early. About 5% of GBS attacks are fatal. This is mostly because it comes on fierce and fast, but also because of misdiagnosis.  CIDP is even more rare, being only a small fraction of GBS sufferers. This is the first place we go to start learning:

When my neurologist explained my new permanent condition, CIDP, and I spent a lot of time researching it, I asked "So, what you're saying is, this is a chronic debilitating disease that will eventually put me in a wheelchair, then bedridden, and it's what I will most likely die of - way too young".  And he said simply, "Yes". Who knew one single word could pack such a punch. I was the owl hit with a stump, owl hitting a stump. CIDP was the stump and it mattered not to the stump if the owl hit it. 

I would be on IVIg for life, he explained. A constant arching effort to heal a little and then relapse a lot, month after month. Did that for about 18 months until I considered that it was the 4th week that wasn't working for me. Why not shorten the treatment cycle to 3 weeks, leave that 4th week out and I asked my Neurologist if we could try that. 

This part is important!  I learned that he's as much in the dark about CIDP as are most Dr.s and that I probably needed to be the expert if I wanted anything to change for the better. By 18 months, I was able to walk a bit more; the severe double vision had mostly subsided; the level of constant pain had diminished. The fatigue abated somewhat and I now slept 12-13 hours a day rather than 18 hours a day.  

NOTE: Over time you realize that most organizations like MS Society or GBS/CIDP Foundation International are primarily funded by the pharmaceutical companies and their goal is to 'sell' or provide supportive information about drugs and management meds. These organizations are not in business to find a cure, ever! And doctors are paid by pharmaceutical companies based on how many prescriptions they write.  Pharmaceutical companies also host elaborate jaunts to vacation destinations under the auspices of educating Drs about the meds the company makes. 

Institutional Corruption of Pharmaceuticals and the Drug Safety Myth

Harvard: Risky Drugs: Why the FDA Cannot Be Trusted

You'll find no end to such references. Remember the charts from my last posting - profits of Big Pharma?  The portion of those profits that finds its way into FDA and Legislators and Disease foundations and societies is enormous, and it's definitely a quid-pro-quo.  So why don't we have funding to find cures, you ask?  Because curing disease is not profitable to the pharmaceutical companies.  

Oh, don't get me started! If I had not been Dx'd with a serious life-threatening chronic illness, I would think someone who wrote the above was kind of over the edge, a bit kooky.  I don't blame you. You haven't had to learn all I have.  Once you're in the USA treatment protocols, you are a mini-franchise for the pharmaceutical companies. 

You are now, officially, a cash cow for the pharmaceutical companies. You will NEVER be cured.  You are worth far too much as a chronically ill person. 

Big Pharma Pockets $711 Billion in Profits by Price-Gouging Taxpayers and Seniors

Wednesday, March 5, 2014

4. CIDP: An Internal War Zone

"Битва выиграна, кто твердо привержена."

"A battle is won by him who is firmly resolved to win it."  
Leo Tolstoy, War and Peace.

Read more at: "

Someone asked me if I'm crazy going to Moscow - didn't I know it's a war zone?  In fact, Moscow isn't a war zone, but my own body is.  That's about the only way I know how to think of CIDP and the 'illness maintenance' protocols I've been using to fight it for over 3 years now. 

       I AM a war zone!

I suspect my comment in last post caught your eye, caused a look of incredulity:  $244,000 (my annual Rx bill, including IVIg for CIDP)

Hefty profits, no?  That's just ONE cost  I want to address.  But I wanted to speak to some of the other options for 'illness maintenance' that make the war zone within even more dangerous.

Initially, my meds included pain relief aid, Gabapentin. This is a drug used in epilepsy, and it does calm the nerve messages so brain isn't overloaded with false pain notifications from all those small nerve fibers that have been demyelinated. But it also makes one lethargic, spaced out, sleepy.

I was also prescribed pain meds like Hydrocodone, which did nothing for my pain, but aggitated me and worked against the Gabapentin.  It's also seriously addictive. I turned it away very soon and asked for something that would work better on pain, but not agitate me otherwise. I was then given Tramadol, a pain relief med that is more directed to nerve pain in particular. I've gotten along well with that.

There are side effects to meds like Gengraf (cyclosporine) and Cellcept, (each designed to reduce the body's immune response, and each at times part of my meds), to include serious elevation in blood pressure and that increases over time. IVIg also elevates BP.  Just before Christmas, 2013, I had a period of spiking BP and on 23rd, had 215/125 BP. I looked online and it said "call 911".  I went to the ER on my own. I don't think everything needs an ambulance.  I was prescribed 2 different meds to counter the elevated BP that is a side effect of CIDP meds.  And those depleted my Potassium, so another med was added to help those levels stay up. Very low potassium can cause heart failure.

My meds have meds.

And as IVIg has caused severe migraines for the past year, it's possible I'd be put on a regimen of high steroid dose, something like 60-80mg of Prednisone soon.  I've used Prednisone in short burst fashion to extend my legs' ability to stay under me for buying trips.  It is a true "heaven/hell" med.  If one were to diagnose Prednisone, I believe it would be bi-polar.  The prednisone makes you have more energy, (and insomnia) and removes a good deal of inflammation everywhere so you actually do feel very good on it, at least initially. You also have hot flashes.  While a couple of intermittent short period 'boosts' in a year is relatively harmless, those who are put on Prednisone as a primary med for CIDP or other Autoimmune Disorders suffer terrible side effects over even a relatively short period. Just yesterday I saw a post from a man who, on Prednisone, put on 60 pounds in a few short months, exacerbating other body systems' health.

I'm going to copy here for you the literature about Prednisone (quoting WebMD):

Drugs & Medications - Prednisone Oral

prednisone oral

Does prednisone oral have side effects?

The following side effects are associated with prednisone oral:
Common side effects of prednisone oral:
Infection Severe
Conditions of Excess Stomach Acid Secretion Less Severe
Chronic Trouble Sleeping Less Severe
Increased Hunger Less Severe
Nervous Less Severe
Infrequent side effects of prednisone oral:
Bleeding of the Stomach or Intestines Severe
Thin Fragile Skin Severe
Osteoporosis Severe
Diabetes Severe
Cushing's Syndrome Severe
Low Amount of Calcium in the Blood Severe
Small Red Skin Lesions caused by Dilated Blood Vessels Less Severe
Irregular Periods Less Severe
Dry Skin Less Severe
Puffy Face from Water Retention Less Severe
High Blood Sugar Less Severe
Rare side effects of prednisone oral:
Pseudotumor Cerebri Severe
Disease of the Nerves Severe
Muscle Problems Severe
Increased Pressure in the Eye Severe
Increased Pressure in Eyes Severe
Cataracts Severe
Injury of the Optic Nerve Severe
High Blood Pressure Severe
Complete Stoppage of the Heart Severe
Slow Heartbeat Severe
Abnormal Heart Rhythm Severe
Chronic Heart Failure Severe
Obstruction of a Blood Vessel by a Blood Clot Severe
Obstruction of Blood Vessel caused by a Fat Globule Severe
Vasculitis Severe
Blood Clot in Vein Severe
Fluid in the Lungs Severe
Ulcers of Esophagus Severe
Ulcer from Stomach Acid Severe
Acute Inflammation of the Pancreas Severe
Lupus-Like Syndrome Severe
Rupture of a Tendon Severe
Delirium Severe
Hallucination Severe
Seizures Severe
Trouble Breathing Severe
Enlarged Liver Severe
Abnormal Liver Function Tests Severe
Broken Bone Severe
Impaired Wound Healing Severe
Life Threatening Allergic Reaction Severe
Reaction due to an Allergy Severe
Kaposi's Severe
Insufficiency of the Hypothalamus and Pituitary Gland Severe
A Rupture in the Wall of the Stomach or Intestine Severe
Anemia Severe
Large Purple or Brown Skin Blotches Severe
Decreased Neutrophils a Type of White Blood Cell Severe
Mood Changes Severe
Paranoia Severe
Mental Disturbance Severe
False Sense of Well-Being Severe
Extreme Sense of Well Being Less Severe
Depression Less Severe
Blurred Vision Less Severe
Optic Disk Edema Less Severe
Hemorrhage of Blood Under the Skin Less Severe
Absence of Menstrual Periods Less Severe
Problem with Periods Less Severe
Inflammation of Skin caused by an Allergy Less Severe
Redness of Skin Less Severe
Skin Stretch Marks Less Severe
Excessive Hairiness Less Severe
Acne Less Severe
Hives Less Severe
Joint Pain Less Severe
Muscle Weakness Less Severe
Loss of Memory Less Severe
Feeling Faint Less Severe
Sensation of Spinning or Whirling Less Severe
Dizzy Less Severe
Excessive Sweating Less Severe
Rash Less Severe
Visible Water Retention Less Severe
Small Reddish-Purplish Pin-Point Sized Spots on the Skin Less Severe
Scaling of Skin Less Severe
Weight Gain Less Severe
Head Pain Less Severe
Fast Heartbeat Less Severe
Hiccups Less Severe
Feel Like Throwing Up Less Severe
Swelling of the Abdomen Less Severe
The Presence of Sugar in the Urine Less Severe
Numbness and Tingling Less Severe
Not Feeling Well Less Severe
Overactive Thyroid Gland Less Severe
Underactive Thyroid Less Severe
Water Retention Less Severe
Abnormal Fat Distribution Less Severe
Confused Less Severe
Over Excitement Less Severe
Disorder involving Personality Changes Less Severe

Considering just these few in the arsenal of meds used by CIDP and MS and other AD sufferers just to 'manage' symptoms, you can easily see why I think research into a cure makes far more sense for everyone. Not only the patient but also their families and society at large. Of all the people I've met with CIDP, and that's probably around 500 around the world, nearly all - more than 80% - are not able to work, or are not working in order to qualify for SSDI and the resulting medical care.  It didn't take all that long to exceed a lifetime benefit cap in the old insurance years pre-ACA, and as we learn too late, insurance companies used to jump at any chance to remove a chronically ill person from their rosters. If you can't work, you probably lose your insurance, too.  So in order to qualify for medical care, many went to SSDI rosters in order to gain use of Medicare/Medicaid for their medical bills.  A travesty, some of which points are addressed in the ACA.

But if you have never had a serious life-altering and chronic illness, you don't think about that.

Please remember my first post, where I explained how quickly my very healthy and vibrantly active lifestyle was demolished by the onset of CIDP. From healthy to serious disability in the space of 10-12 days!  I learned so much about our insurance and medical institutions in the USA. I am outspoken now in support of ACA, though it is far from perfect. At least our Nation now does not leave a person out in the cold, drive them to bankruptcy, hasten their death for lack of coverage.

So, the reason people like me search out HSCT and are willing to undergo full-on Chemo as part of the HSCT process is that the alternative 'FDA approved protocol' is killing us!