3. FOLLOW ME, please - by bookmark for now.

I'm a techno-dunce, sorry.

FOLLOW:   As noted, this blog (like me) is a work in progress. At present I have no idea how to add a 'follow' tab and after 45 minutes, still don't understand the instructions, so in the meantime, BOOKMARK if you wish to follow and drop in now and then. Thanks.  I'll get the hang of this blogging thing soon, promise!

2. Treatment vs 'cure' - CIDP 

Алты́нного во́ра ве́шают, а полти́нного че́ствуют.

(Little thieves are hanged, but great ones escape.)

 Literal: The thief who stole an altyn (3 kopecks) is hung, and the one who stole a poltinnik (50 kopecks) is praised.


If you've found this blog, it's probably because you've got CIDP yourself or someone you care about has been diagnosed with CIDP, MS, other autoimmune illnesses from the list here, and you're searching desperately for answers. We've all been there.

Our doctors in the USA seem to be adept to greater or lesser degree with treating our illness. The problem is that, with rare exceptions, no one seems motivated to search for a cure.  There's just no money to be had in curing people. We have a myriad of 'treatments', drugs, advice and more drugs, all of which maintains our state of illness to a greater or lesser degree.  It will take longer for our CIDP to kill us, perhaps, but the side effects from the current FDA approved treatments might kill us first so it's like a double assault.

As an example, the following more or less describes the most successful maintenance treatment I've found for CIPD - IVIg (immune-globulin via intravenous delivery).  My routine is now 120gr per treatment, given over a 3-day period at 21-day interval. Each of the three days I go to the out-patient infusion center, am on IV for around 5-6 hours.  For the first 2 years on IVIg, I had relatively good healing of damaged myelin sheath and regained much of the use of legs I'd initially lost to GBS/CIDP.  This last year, however, I have been showing more and increasingly worse side-effects from the IVIg. The worst being severe migraine that can last anywhere from 1-5 days (to date) relative to the 3 days it takes to complete my IVIg infusion treatment.  Other times it saps what energy I do have, and about all I can do is go home and sleep for 12-16 hours, get up and return to the next day's infusion.

Here you can see what IVIg is about, though I can't express to you the intrusion into one's life it truly is, nor the worry each time over how bad the side effects might be:

This is how I spend 6 hrs a day, 3 days of every 21:

And this is essentially how it works to distract the body's errant immune system from attacking it's own tissues (for those of you who love graphics and charts):

And this is what IVIg looks like, basically.

GAMMAGARD PATIENT INFORMATION INCLUDING SIDE EFFECTS
Brand Names: Carimune, Flebogamma, Gammagard, Gammagard S/D, Gammaplex, Gammar-P I.V., Gamunex, Octagam, Polygam S/D, Privigen, Sandoglobulin
Generic Name: immune globulin (intravenous) (IGIV) (Pronunciation: im MYOON GLOB yoo lin)
What is immune globulin intravenous (IVIG) (Gammagard)?
What are the possible side effects of immune globulin?
What is the most important information I should know about immune globulin?
What should I discuss with my health care provider before using immune globulin?
How is immune globulin intravenous given?
What happens if I miss a dose?
What happens if I overdose?
What should I avoid while using immune globulin?
What other drugs will affect immune globulin?
Where can I get more information?

What is immune globulin intravenous (IVIG) (Gammagard)?
Immune globulin intravenous is a sterilized solution made from human plasma. It contains the antibodies to help your body protect itself against infection from various diseases.

Immune globulin is used to treat primary immune deficiency, and to reduce the risk of infection in individuals with poorly functioning immune systems such as those with chronic lymphocytic leukemia (CLL). IGIV is also used to increase platelets (blood clotting cells) in people with idiopathic thrombocytopenic purpura (ITP) and to prevent aneurysm caused by a weakening of the main artery in the heart associated with Kawasaki syndrome.

Immune globulin is also used to treat chronic inflammatory demyelinating polyneuropathy (CIDP), a debilitating nerve disorder that causes muscle weakness and can affect daily activities.

Immune globulin may also be used for purposes not listed in this medication guide.

What are the possible side effects of immune globulin?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have a serious side effect such as:

urinating less than usual or not at all;
drowsiness, confusion, mood changes, increased thirst, loss of appetite, nausea and vomiting;
swelling, weight gain, feeling short of breath;
wheezing, chest tightness;
feeling like you might pass out;
fever with headache, neck stiffness, chills, increased sensitivity to light, purple spots on the skin, and/or seizure (convulsions); or
pale or yellowed skin, dark colored urine, fever, confusion or weakness.
Less serious side effects may include:

mild headache;
dizziness;
tired feeling;
back pain, muscle cramps;
minor chest pain; or
flushing (warmth, redness, or tingly feeling).
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Read the Gammagard (immune globulin) Side Effects Center for a complete guide to possible side effects

Learn More »

What is the most important information I should know about immune globulin?
Immune globulin can harm your kidneys, and this effect is increased when you also use certain other medicines harmful to the kidneys. Before using immune globulin, tell your doctor about all other medications you use. Many other drugs (including some over-the-counter medicines) can be harmful to the kidneys.

Before using immune globulin intravenous, tell your doctor if you have kidney disease, diabetes (especially if you use insulin), a history of stroke or blood clot, heart disease, high blood pressure, a condition called paraproteinemia, or if you are over 65 years old.

To be sure this medicine is helping your condition and is not causing harmful effects, your blood will need to be tested often. Your kidney function may also need to be tested. Visit your doctor regularly.

This medication can cause unusual results with certain blood glucose tests. Tell any doctor who treats you that you are using immune globulin.

Immune globulin is made from human plasma (part of the blood) which may contain viruses and other infectious agents. Donated plasma is tested and treated to reduce the risk of it containing infectious agents, but there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication.

One reason I'm looking into HSCT (Hematopoietic Stem Cell Transplantation) is I have developed many of the noted side effects, plus I'm now 64 years old, have med-related elevated blood pressure, migraines, drowsiness, weight gain, confusion and etc., etc., PLUS, while we have excellent insurance, the meds and delivery costs for me (just one of many many people using IVIg) add up to roughly $244,000 per year.  And prior to ACA, most people who need this costly med to keep them from a very fast deterioration to wheel chair and bedridden state have lost their ability to work, or have had to quit working in order to get SSDI (social security disability) which was the only pathway to getting medical care via Medicare/Medicaid as a disabled person. That means our tax dollars are maintaining the illness of a huge number of people. 

It would seem to me that the idea of $45,000 to $125,000 as a one-shot fee for HSCT would benefit not only the patient and their families, but also the tax payers and the National debt. But with the immense lobbying success and funding to legislators by the pharmaceutical industries, there is no funding for cures. FDA squelches or demands exceptionally long trial phases that might otherwise produce affordable curative treatments such as HSCT, which is used internationally and has roughly an 76-85% full remission & 'cure' rate currently.  

And while the costs are much lower for the other popular 'treatment' for Autoimmune illnesses across the board is Prednisone (a steroid), the side effects are much much worse.  Ah, the more you learn as 

you're trying to regain your life, the more discouraging it becomes.

My experience over the past 3+ years of WARing against CIDP's and 'illness maintenance' ravages has brought me to the doorstep of an adventure into PEACE and to a 'cure' - HSCT, and I'm entering a well respected clinic in Moscow on April 6, 2014, to reboot my immune system with my own stem cells. Yes, after 3+ years of illness maintenance and its side effects, I'm choosing the best path to full remission - a 'cure'.  More about the clinic later. . .  come along with me. 

1. I have CIDP, a very rare malady that is much like MS.  

Без труда не вытащишь и рыбку из пруда.
[byes troo-DA nee VI-ta-shsheesh ee RIP-koo ees proo-DA]
You cannot pull a fish out of a pond without effort.

Meaning: You need to work hard if you want to get something.




A work in progress. That's what I am. And I want my life back!

I am someone whose immune system was pushed into overdrive by a flu shot (read the fine print next time - where it mentions Guillain-Barre Syndrome, GBS).  And after a few months of waiting for GBS to subside, which it did not do, I gained a new acronym, CIDP, which stands for "Chronic Inflammatory Demyelinating Polyneuropathy.



What is that?  I'm going to borrow from National Institute of Health:

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

Is there any treatment?

Treatment for CIDP includes corticosteroids such as prednisone, which may be prescribed alone or in combination with immunosuppressant drugs. Plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) therapy are effective. IVIg may be used even as a first-line therapy. Physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.

What is the prognosis?

The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve axons is recommended. However, some individuals are left with some residual numbness or weakness.

This is what a healthy nerve looks like:

This shows you the proliferation of nerves in a human foot (lots of them, far more than the illustration)

This shows the length of nerves, and why hands, arms, feet and legs are most affected by CIDP damage, owing to the long length of the nerves.

What happens to the nerves in the body is illustrated here:

Obviously the type and severity of this syndrome depends on how much demyelination takes place. In light cases, much of the damage gets healed over time and with IVIg or other meds that distract one's own immune system, but many suffer paralysis and or massive sensory loss or alteration as an ongoing feature. Closest to MS (Multiple Sclerosis), CIDP normally affects the peripheral and sensory nerve systems, where MS is usually confined to the central nervous system. CIDP is far more rare, as well.

But they make it sound far less ominous than it truly is, so allow me to give you a brief outline of my own 'syndrome' within the CIDP heading (dates might not be exact, but close):

Jan 20, 2011:  My pinky toes were both numb (weird, not too worried as I thought it had to do with an old back injury from an auto accident. 

Jan 21, 2011:  All of my toes were numb when I woke up, and parts of both feet, uniformly. And through the course of the day that numbness creeped up my feet 'til even my ankles were numbing. Plus, on vacation in Death Valley with my husband, I found I was physically unable to climb up a sand dune. I thought I was really out of shape!  My leg muscles just would not allow me to climb at all, and I found myself also tripping on things, heavy weird sensation in legs.

By Jan 23, 2011: Home from vacation, I met with my doctor and told her about my weird numb feet. She thought diabetes initially, took labs - not diabetes, so she immediately phoned a Neurologist, referred me. And I went off to Denver for the weekend to go sledding with all of my kids, grandkids.

Jan 25, 2011: Every hour I lost another bit of strength in my legs. Numbness was also creeping higher. I fell trying to get up from the toilet, and later trying to lift myself up into an airport tram. I could not walk up the stairs at my son's home in Denver without huge effort and pulling with my arms on the banisters.  Tried to keep it from my kids, we went to Winter Park to enjoy tubing, and I just couldn't do stairs. I declined the tubing except for one run with grandkids, and struggled to get back to the top even with the lift and help from my big strong sons.  

Jan 27, 2011: Back at home, a couple more falls, unable to lift a leg for one single stair step, I met with Neurologist for my referral appt, and after a lot of tests, including spinal tap to check for a certain protein that is definitive confirmation of demyelination occurring along the length of my nerves.  Within the course of a week's time, I had lost all deep reflexes in knees, ankles, elbows and wrists; numbness and partial paralysis had migrated up to my waist and my hands and lower arms were involved; severe double vision was next and the center 1" of length of my tongue was numb/altered sensation. Add to that, excruciating pain, as I not only had demyelination on motor nerves in the Peripheral Nervous System, but also Small Nerve involvement, meaning sensory havoc. He Dx'd me as having Guillain-Barre Syndrome.

Feb 3, 2011:  By the time I began IVIg, (a life-saving intervention of immune-globulin from a mix of over 1000 donors), I could walk no more than 20 steps on flat surface; could not do one single stair step, had excruciating constant pain in all affected areas, and strange sensory features like feeling like my feet had layers of shredded cardboard glued all over them. I could barely feel the floor to gain balance, so the moment I closed my eyes, I'd tip right over. Very frightening to lose yourself in the space of 10 days!  So this is about my long journey back to 'me', and the things I've learned along the way about how our USA approaches patient care, and ultimately, about my decision to stop endless 'treatment' and go for a curative procedure, instead.  

Come and join me on my journey to Moscow, Russia, and to HSCT, the one procedure that is helping people like me, and MS and other Autoimmune Disorder patients arrest the chronic assault and the secondary assault that is our medical system, medical treatment to 'treat' the disease, but not to cure it. Because profit comes before patient health in our Capitalist Nation, and someone has been making over $244,000 a year prolonging my CIDP rather than offering me a cure. 

Why did I name my blog "War and Peace", you might ask?  Because illness in our country is as long and drawn out and excruciating as that famed Russian novel, and in the end, my story will take me to Russia to put an end to CIDP.  Come along.