Autoimmune Syndrome and Pesticides in our Food Supply

Pesticides Being Sprayed on Food Crops (image source: nmorganics.net)



I recently read an article in "Natural Awakenings" the Central New Jersey version, June 2012 issue, that I wanted to share.  I've written about this subject before but felt it was time for a re-visit.

The title of the article is "Is Your Body Allergic to Itself? - The Plight of Autoimmune Syndrome" and is written by Dr. Nikki Conte (unfortunately the article is available only in print or PDF format which is where the above link will take you).

Dr. Conte's article focuses on, what I agree is, the real cause (or one of the main causes) of autoimmune diseases such as ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia.  I don't understand how the presence of staggering amounts of chemicals, including pesticides and synthetic bovine growth hormone, injested by the average American every day in their food can be all but disregarded by our government, medical establishment and the general public.  Our food supply has become inexcusably poisoned and the presence of these chemicals is routine and completely legal. 

image source:  http://www.lowdensitylifestyle.com/obesity-can-be-caused-by-chemicals-in-foods/

Pesticides are created to kill insects, fungus or any other living thing that may endanger the particular crop they are applied to.  Although I realize human beings are quite a bit larger, therefore less vulnerable to the fatal effects of these chemicals, this daily ingestion must have some cumulative effect.  I think it's naive to think that chemicals who's sole purpose is to kill, will have no negative impact on human beings as a whole.  I've often thought (and I know I'm not alone) that these chemicals must have some part in the increase of autism cases and many other diseases, such as obesity, that the medical and scientific communities seem baffled by. (For more information about obesity and pesticides click on the source link under the above image) 

Our immune systems simply don't know how to react to the onslaught of these relatively new agents and in some people, have become so confused that they wage a full autoimmune attack on benign substances in our food or environment that have been in existence for many generations, or in the case of wheat, since human beings began an agrarian existence around ten thousand years ago.

As the mother of a two-and-a-half year old, this whole notion scares the heck out of me.  I buy as many organic foods as I can reasonably afford and my daughter has yet to taste beef, chicken, pork or any other land animal, though she has had fish on occasion.  I feel desperate to protect her from pesticides, synthetic bovine growth hormone and chemical preservatives but these substances are so prevalent in our food supply that I wonder if this is even remotely possible.

CFS/FM Study at Beth Isreal, New York, NY

I wanted to pass on this information to anyone in the New York metro area who is suffering from Chronic Fatigue or Fibromyalgia symptoms.  The following story aired on CBS Newsradio 880am in New York on June 19th, 2012.
 
Interview with Dr. Benjamin Natelson, Director of the Pain and Fatigue Study Center at Beth Israel in Manhattan

Dr. Benjamin Natelson is also the author of "Your Symptoms are Real" published in 2008 and a professor of neurology at Einstein. This is the website he refers to for more information about the study he's conducting:  www.painandfatigue.com

The study has been funded partly by the National Institutes of Health and sounds very promising.  I haven't read Dr. Natelson's book but plan to do so right away.  In the radio interview, he admits that over the twenty years he has been researching CFS & Fibromyalgia, one of the most important breakthroughs he and his co-researchers have made is simply the general acknowledgement of the existence of these diseases.  Although it's still hard sometimes to get a doctor to take you seriously, you can usually find one eventually that will.  I cannot imagine what it must have been like twenty years ago to have suffered so severely and had doctors tell you it was all in your head.  I don't know how I would have endured it.  I was at least lucky enough to have come down with ME/CFS & Fibromyalgia after people like Dr. Natelson had finally convinced their colleagues in the medical community that this was something to be taken seriously.

If I were still symptomatic, I would be on a plane to NYC ASAP!  I'm from Central New Jersey and my family still lives there (which is actually how I found out about this radio interview) so it would have been a no-brainer for me. However, I'm happy to remain here in (not too) sunny Southern California and be feeling as great as I have been for the last three months.  I'm still doing really well on 125mg amitriptyline and 2mg lorazepam per day.  I've been walking about eight miles per week, up and down 9.5% grade hills and on good days, have been able to maintain a 2.8mph pace up the steepest slopes.  I will never again, for one moment, take my health for granted.  As I've said countless times before...I only hope it lasts.   

(By the way, in case anyone is keeping track, this is my 99th post which means my next post will contain a coupon code for 20% off your entire order in my Etsy Shop, Catalina Inspired in celebration of my 100th post! - I can hardly believe it!)              

Fibro Brain Fog, Thick as Ever

I've been on a strictly vegan diet since March 1st, almost three months.  I've also been taking 150mg, now 125mg of amitriptyline each day.  As I've written before, I'm been feeling better than I have in two years.  I'm able to exercise and do things that I couldn't even think about doing before. 

Yesterday I painted the wooden table out on the patio of the hotel I manage.  I was able to go down the stairs to our maintenance closet, walk back up the stairs holding a quart of paint and paintbrush and still have enough energy to paint the table.  After that was completed, I was even able to water the plants and do some pruning.  A few months ago, I wouldn't have been able to descend the stairs and climb back up without experiencing a lot of pain and shortness of breath.

I'm not sure what's responsible for this huge change in my condition and I sometimes fear it's simply a remission that will run it's course and eventually end.  After all, my diagnoses of Fibromyalgia and ME/CFS (Chronic Fatigue Syndrome) were never proven.  I always wondered if it were something else I was afflicted with but I could never afford the blood work to check for NK cell function, viral titers, VO2, RNase L and cytokines count.  I've recently read that these bio markers go along way towards scientifically "proving" these diseases.

My physical condition has improved tremendously but my cognitive impairment stubbornly continues to fog my brain.  I'm able to do so much more, but my memory and recall are horrible.  Unlike most people, I was always good at remembering names and faces.  In fact, I've embarrassed myself on several occasions by walking up to greet someone by name, who had no idea who I was.  At least that won't be happening any time in the near future. 

Now when I'm having a conversation with someone, I find myself not having the words to convey my thoughts.  It's almost as though I have a stutter.  I'll get stuck on a word like a broken record and have to stop speaking completely to "re-boot" my brain, then start the sentence again.  I'm sure people don't notice it as much as I do, but I feel really self conscious when it's happening.  I also find myself not being able to remember simple words.

Don't get me wrong, I'm not complaining!  I feel so lucky that I have this time to do some of the things I haven't been able to do in the last two years, especially spending quality time with my two year-old daughter.  I'll never again take my good health for granted, knowing that I could loose it at any time.

Growth Hormone Treatment for Severe Fibromyalgia

I just got an email update from MDLinx about the following article.  This is only a summary of the article.  In order to read the whole thing you have to pay $32 I think.  The source link is included at the end of the article summary if you're interested in purchasing it:

Pain, 04/04/2012

Cuatrecasas G et al. – In this largest and longest placebo–controlled trial performed in FM (NCT00933686), addition of growth hormone (GH) to the standard treatment is effective in reducing pain, showing sustained action over time.
Methods

• A total of 120 patients were enrolled in a multicenter, placebo–controlled study for 18months.
• They were randomly assigned to receive either 0.006mg/kg/day of GH subcutaneously (group A, n=60) or placebo (group B, n=60) for 6months (blind phase).
• The placebo arm was switched to GH treatment from month 6 to month 12 (open phase), and a follow–up period after GH discontinuation was performed until month 18.
• Standard treatment for fibromyalgia (selective serotonin re–uptake inhibitors, opioids, and amitriptyline) was maintained throughout the study.
• Number and intensity of tender points, Fibromyalgia Impact Questionnaire (FIQ) with its subscales, and EuroQol 5 dimensions test (EQ5D) with visual analogue scale (VAS) were assessed at different time points.

Results

• At the end of the study, 53% of group A patients obtained fewer than 11 positive tender points, vs 33% of group B patients (P<.05). 39.1% vs 22.4% reached more than 50% improvement in VAS (P<.05).
• Group A patients showed significantly improved FIQ scores (P=.01) compared with group B.
• Although GH discontinuation worsened all scores in both groups during follow–up, impairment in pain perception was less pronounced in the GH–treated group (P=.05).

Read more: http://www.mdlinx.com/pain-management/news-article.cfm/4003919/fibromyalgia#ixzz1vWoGSN3f

Uninsured With ME/CFS and/or Fibromyalgia - Part 3 - Prescription Medications

This post is the third in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income. Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, you've seen the doctor, had some blood work done and depending on the results, may have gotten a prescription to address your pain, fatigue or other symptoms.  Many prescriptions for ME/CFS and Fibromyalgia are new and really expensive.  This also means that there aren't generic alternatives.  One doctor I saw prescribed Cymbalta which has a three-hundred-fifty dollar per month price tag!  Incidentally, this particular doctor (a Rheumatologist) had almost no experience dealing with low income and/or uninsured patients as well as countless other faults.   I filled only half of the prescription and charged it on my credit card.

The clinic my GP (who I really like) practices at, has a person on staff who helps uninsured, low-income patients obtain prescription medications at discounted rates or for free, depending on the situation.  When I first started seeing this patient advocate few years ago, it all seemed like magic.  My doctor wrote the prescription and had it forwarded to the advocate.  I made an appointment to see her, she explained which financial papers I needed to provide, she'd fill out some forms and I'd sign them.  In about two weeks, I'd go back, she'd hand me a bag of name-brand prescription bottles, I'd thank her and walk out the door without paying a dime.  Later I started catching on to what she was doing.  The best part is, anyone can do it!

The advocate was simply contacting the pharmaceutical companies and applying for financial assistance on my behalf.  I thought, I'm pretty smart, I can do this myself.  It ended up being easier than I ever imagined.

When I first learned about the high cost of Cymbalta, I started to panic, thinking I'd never be able to afford it.  Then I looked back in my records at the forms my advocate had filled out.  I tried to mimic what she had done. 

The pharmaceutical company that manufactures Cymbalta is Lilly, the same company that makes Prozac. I went to the Lilly website, searched around a bit and finally found a financial assistance form to download.  I can't remember exactly which financial documents they required, but I believe I sent a copy of my previous years tax return and a month's worth of my husband's pay stubs.  I put the application and accompanying documentation in the mail and prepared myself for the usual routine, complete with countless follow-up calls and re-submissions of my application.  To my overwhelming shock, the situation I'd come to expect, never materialized.

About two weeks after I submitted my application, I took out the copies of what I'd sent, took a deep breath and dialed the customer service number, poised for battle.  A friendly man answered the phone  and asked what he could do for me.  I explained that I was calling to check on the status of a financial aid form I had submitted.  After obtaining my name, he quickly pulled up my file.  I had expected the usual "I'm sorry, our computers are really slow today" line, but no excuse was needed.  He cheerfully reported that my application had been approved and the medication was already on its way to my doctor's office.  I thanked him profusely, and hung up the phone in utter disbelief.  His claims were not fiction as I picked up the four bottles of Cymbalta during my next doctor's visit.  My doctor, apparently not used to dealing with uninsured patients, did not handle the whole situation well at all and I never saw her again after that.  But that's beside the point.

What I'm about to write is also beside the point but has to be said. I found it interesting, to put it mildly, that the pharmaceutical company was so willing to mail me drugs with a value of approximately $350. It says volumes about how over-priced these drugs must be in the first place and how huge the profits are. You wouldn't, for example, walk into a grocery store, show them a copy of your tax return and get $350 worth of groceries. But, I suppose I shouldn't look a gift horse in the mouth (if you'll excuse the cliche) so I won't continue with this particular tirade

The point is, that it is possible to get prescription drugs at a discount. Most drug companies will give just about anyone (with a prescription from your doctor of course) a free one month trial. You can usually print the coupon out on your computer and give it to your pharmacist with your prescription.

In the next post, I'll tell you about third party drug distributors that offer huge discounts. Yes, it's legal and based in the USA.

Unisured With ME/CFS and/or Fibrmyalgia - Part 2 - Bloodwork

This post is the second in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.  Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, now you've seen the doctor and if you've found one who takes you seriously, he or she will probably have ordered a lot of expensive blood work in order to check for autoimmune diseases such as Lupus, Multiple Sclerosis, Sjogrens Syndrome and Rheumatoid Arthritis.  I'm still paying for blood work I had done over a year ago.  If you don't have insurance, you could find yourself receiving a bill from the lab for $2,000 or more.  I got some much needed advice regarding these invoices from a very unlikely source. 

After receiving the invoice for this very expensive blood work, I called Quest Diagnostics to set up a payment plan since there was no way I'd be paying the entire amount up front.  The customer service rep. I spoke with was truly a caring person and spent a lot of time with me.  If you've had any experience with similar situations, you know how incredibly rare this is.  She set up a payment plan for me then asked what my household income was.  I thought this was an unusual question but I answered it anyway.  She proceeded to tell me about Quest's financial aid program.  She said she would mail me the application form and I thanked her profusely for her help.  Sure enough, I received the application form in the mail a few days later, filled it out, attached the requested financial documents and mailed it out. 

The next invoice I received from Quest Diagnostics had a credit applied that equaled about half of the original amount due.  I was shocked and wished I'd remembered the name of the woman who was so helpful the first time I called.  This whole experience taught me an invaluable lesson that I would like to pass on to everyone else who's in a similar situation. 

The lesson is, to always ask if there's financial aid available no matter how unlikely it may seem at the time.  The worst they can say is "no".

The next post will cover prescription medications and ways to get them at a discounted rate or for free!

(Btw - this is post #95 - five more to go till 100 and 20% off everything at Catalina Inspired on Etsy.  Look for the coupon code in post # 100)

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

This post is the first in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.

I was talking to a friend yesterday about the hardships of being chronically ill, uninsured and living on a very low income.  I was giving her some advice about getting her medications at a reduced rate and thought it would make a great subject for a blog series.  I've learned so much in the last two years, being uninsured, suffering with ME/CFS and Fibromyalgia and having to take a long, unpaid leave from my job. 

I haven't had health insurance for a long time - about ten years I think, which was the last time I had an employer who offered it.  When I was laid-off from my job, doing books for a software development company in NYC, I wasn't able to afford Cobra since I only received one month of severance pay and health insurance.  After that that I had lower paying temp jobs that didn't offer health insurance at all.  I didn't earn enough to pay $200 per month for insurance and believe me, I looked everywhere for something I could afford.  I simply didn't make enough to pay rent ($900), utilities ($100), car payment ($300), food, gas, etc and health insurance on top of all that.  You may be wondering why I'm going into all this personal detail about my finances.  I know there are many people out there under the delusion that health insurance is available to anyone who works.  I hope my story will open some eyes to the hardships many US citizens endure simply because they become ill.

When I lost my job in NYC, I was twenty-five years old and healthy.  The occasional visit to the doctor and some anti-biotics to treat a sinus infection, for example, was expensive but doable.  I recently turned thirty-nine and I spent about six thousand dollars in 2011 on Dr. visits, blood work and prescription medications and a large sum the year before as well.  This is far from doable for me. 

There are exactly four people (including myself) who work at the very small hotel I manage.  The owners do not offer health insurance because it would take a huge bite out of their profits, making the business not worth having.  Large companies can get group discounts on health insurance for their employees, but this is simply not realistic for small businesses.  Two other small business owners I've worked for apologetically reported the same findings.

As my mysterious illness progressed during the last two years, I was forced to take a medical leave from my job which made paying for my mounting medical expenses increasingly difficult.  I'd set up payment plans for most of my bills, but it was becoming difficult to even pay those amounts each month.  I did learn some really valuable lessons along the way though, about reducing many of my medical expenses.

If your income is low enough, you can usually qualify for many different programs.  Unfortunately, if you're a person who has a mid-to-low-range income (a single person who makes less than around $25,000 per year, more if your married and have children), you can get caught in "no man's land" where you don't qualify for assistance but your income isn't high enough to pay cash for your medical expenses or for private health insurance each month.  I would guess that a very large percentage of people in the USA fall into this category.  But I won't get on my political soap box because that isn't what this post is all about.

Your battle plan should start even before you walk through the door of your doctor's office.  When you make an appointment, ask the person on the phone if their practice offers a sliding scale or other financial aid for uninsured, low income patients.  Even if you're not sure whether or not you fall into the "low-income" category, fill out the forms anyway.  You may qualify for something.  I've found that doctor's office staff seldom offer this information so you have to ask!  My doctor, for example, offers a twenty-percent discount if you pay your bill on the day of your visit.  This brings the total, for me, to less than $100 per visit.  Even if I don't have the full amount that day, I put it on a credit card and pay when my bill is due.  Try to avoid paying in cash as it's harder to prove how much you've paid towards medical bills.  You may need hard proof of these expenses in the form of bank or credit card statements in the future.

I should warn that some practices do not treat people without health insurance.  This came as a huge shock to me the first time I encountered it.  I was desperate to see a doctor I'd read really good things about and offered to pay the full amount in cash before even seeing the doctor, but I was turned down.  I'm still a bit confused as to the motivation for this policy. 

My doctors office also offers "Charity Care", a program based on income level that provides discounted or free services.  I'll emphasise that you have to talk to an administrative person about this, not the doctor.  Doctors, I've found, are frequently unaware that these programs even exist.

In my next post, I'll write about how to get discounted or free prescription medications and more.

Also - This is my 93rd post - 7 more till my 100th, where I'll post the coupon code for 20% off your entire order at Catalina Inspired on Etsy.       

I Can Walk Three Miles Per Hour!

The Top of Hermit Gulch Trail on Catalina Island

For the last two nights I've been sure to ingest my pills, not just remove them from the bottles and leave them on the counter.  I still had some anxiety yesterday but today I'm back to feeling pretty good - which is great!

I went for a walk today that included a short incline which I haven't been able to climb for most of the last two years.  It felt amazing!  I was so encouraged that I almost started walking up one of the hills I used to walk every day.  Fortunately I stopped myself, knowing that overdoing it could set me way back.  I kept to the flat surfaces for the rest of the mile and came back feeling tired, but not exhausted, fatigued, short of breath or in pain.  In the picture above, the highlighted area is the end of a trail I used to climb on a regular basis before I became ill.  I've missed the beautiful view from the top that includes seeing the Pacific Ocean from both the windward and leewards sides of the island.  The picture below was taken on the trail near the top.  On the day this photo was taken, clouds overflowed from the windward side. 

Almost to the Top of Hermit Gulch Trail

I have an app on my iPhone, Motion-X GPS, that records my average speed (among other things) which today was 3.0mph!  I can look back at other walks I've taken in the past and the average speeds were more like 2.5 or even 2.1.  A few months ago, not long after I got the app, I tried to up my walking speed and ended up in bed for about two days afterwards, feeling horrible.

I so hope this lasts.  I'm so afraid it won't.

Amitriptyline/ Ativan Reaction

Amitriptyline 50mg Tablets



I've been taking Amitriptyline for the last month and so far, it's helped me more than any other medication I've tried.  I did have an unsettling experience yesterday, however.  When I woke up, I immediately recalled a few bizarre, disturbing dreams I'd had that night.  I'd stopped having sleep disturbances, for the most part, some time ago so I found the dreams puzzling.  I've been taking Ativan/Lorazepam for the last two years to help me sleep.  Doctors have discouraged this and even scolded me for taking it since it's a "controlled substance" and "not to be used as a sleep aid" but that's a story for another post. 

Since I've been taking Ativan and Amitriptyline I've actually been sleeping quite well.  So when I woke yesterday morning I was confused but that feeling vanished the instant I walked into the kitchen and saw the pills sitting on the counter.  Apparently, I'd removed them from the bottles but never actually taken them.  This explained the dreams, as well as proving (to myself mostly) that I wasn't experiencing a placebo effect from either of the drugs. 

My day wasn't going very well, so conflicts with my husband, two year old and the hotel I manage, caused a completemental collapse.  At about ten am, I had a full blown anxiety attack complete with cold sweats, shakes and shortness of breath.  It had been quite a few years since I'd had one, though they were once a very  common occurrence (along with severe panic attacks).  I took a hot shower and calmed down quite a bit.  A couple hours later, however, another attack hit and I found myself laying on my bed, hardly able to catch my breath, shaking uncontrollably and soaked in cold sweats.  My husband, who was formerly an EMT/ fire fighter instinctively took my pulse and got a cool damp cloth for my head.

I've taken Lorazepam on and off for years and never had this kind of withdrawal reaction.  Maybe it was the combination of the two drugs together.  I don't know, but after I took 1mg of Lorazepam during the second attack, I felt much better. 

I recently read a theory that suggests FMS and/or ME/CFS sufferers may acquire a "chemical sensitivity".  In the past, I wasn't typically sensitive to medication side-effects as I am now, so it's a possible explanation.  I only know that I'll never forget to take my pills before bed again!

Feeling Better and Better

Three Generations (that's me in the middle, feeling not-so-bad!)

Today I actually vacuumed my entire apartment (which is pretty tiny) and did some dusting!  When I finished, I was tired but not abnormally so.  I can't remember the last time I was able to do this.  

I had planned to begin taking Savella last week but I've put it off since I'm feeling so much better on just the Amitriptyline.  I wish I'd tried this a long time ago.  To anyone out there suffering with ME/CFS and/ or Fibromyalgia, give Amitriptyline a try!  It's one of the older tricyclic antidepressants (pre-Prozac) but I've read elsewhere that it was effective, so I guess I'm not the only one.

My parents have been visiting from NJ for the last month.  My mom kept happily commenting on how much better I seemed from when they first arrived (they flew back yesterday).  "You could hardly keep your eyes open" she commented on the phone today regarding the horrible state I was in. 

Could this really be it?  Have I found my holy grail?  I'm still very cautiously optimistic.  After all, I know it could be just a phase.  But in the meantime, I've been very slowly beginning to exercise again which is something I have missed greatly.  Before Fibromyalgia and ME/CFS took most of my life away, I exercised daily and was in pretty good physical condition.  I cannot say the same now I'm afraid.

On a less positive and completely different note, today I attended our small town's annual "Health Fair".  I don't have health insurance and they offer a wide variety of medical tests for very low rates.  For example, I had a bone density test, echo cardiogram and a thyroid/ kidney ultrasound for a grand total of $110!  Those tests would have cost way over a thousand at my doctor's office.  Everything came back within normal ranges except the bone density test.  The result was -2 which I discovered today is indicative of osteopenia.  Being that I just turned 39, this was a bit alarming, although it does run in my family.  My mother (who is 69 - sorry mom) has normal bone density but I once overheard a doctor describe my grandmother's bones as "chalk-like".  From what the technician told me today, bone density can be repaired by consuming more calcium but of course I'll be heading to the world wide web to check it out thoroughly.  I am so thankful though that my heart is in good condition!  I sometimes worry because when I'm not feeling well, one of the symptoms I experience is shortness of breath and the feeling that my heart has "skipped a beat" and it can be scary.

Amitriptylene is Rocking My World!

OK, I know I didn't have much positive to say about Amitriptyline in my last couple posts but I've changed my tune completely.  Between the vegan diet and Amitriptylene, I'm feeling better than I have in a long time.  Although, I'm not sure which is actually responsible for this change, if it's a combination of the two or something else entirely. 

I took this picture on my walk to Lover's Cove today, the first time I've taken a walk purely for exercise in weeks.  I put my earphones on and just WALKED!  It felt great!  I've also been taking fewer and shorter naps.  My muscles and joints feel stronger and are in less pain.  I'm trying not to get my hopes up and set myself up for disappointment later but I can't help it.  If it just ends up being a "good week" I'll deal with the disappointment later. 

My original plan was to taper off Zoloft, start Amitriptylene then, when the Zoloft was completely out of my system, start Savella.  I'm completely off Zoloft and up to a therapeutic dose of Amatriptylene but I'm holding off on the Savella since I seem to be feeling pretty well.  After all, I don't want to take anymore drugs than I have to. 

I'm feeling really well about the vegan diet too.  The stomach discomfort I had at the beginning is completely gone.  Oh how I pray this lasts!

Life as a Paper Doll

Two days ago, I spent the early afternoon with my mom and two year old daughter.  It was a beautiful, warm, sunny day for  Avalon's annual Spring Festival.  Being the quintessential small town street fair, it was complete with food and craft vendors and a tiny petting zoo. 

I wasn't surprised to see quite a few people I knew there, people who could have been friends if things were different, but today I avoided their glances and maneuvered throughout the crowd so as not to be noticed.  During my drinking days I had became an expert at avoiding people by cutting through alleys and hotel lobbies rather than to walk down main streets.  This time though, the motivation was very different.  Rather than hiding from those who may have seen my drunken antics the night before at the local bar, I simply didn't have the energy to smile or speak and didn't want anyone to misconstrue my attitude as personal indifference.

My heart felt heavy as I watched parents of other children in my daughter's toddler pre-school standing together chatting and laughing as their children played with one another.  I would loved to have been part of the group, but laughing expends too much of the very limited energy I have.  My daughter held my hand as we  slipped past the group and her little head craned to see her classmates.  After we passed them, my daughter waved her hand and quietly said "bye bye".  My heart sunk and I felt like the worst mother on the planet. 

When I thought I couldn't possibly get any more depressed, I looked out into the harbor and saw Perdida, in my mind, her two, tall masts, her teak trimmed cockpit combings all upon her beautiful turquoise hull, floating so gracefully in the harbor as I had seen her so many times before.  Now the tears began to well.  Images of my life while living aboard her scrolled through my mind.  I tried to stop them but the images kept coming.  It felt as though I were remembering a movie I'd seen.  The person in that movie looked a lot like me but - it wasn't.  It couldn't be.  That person was strong and healthy.  That person was able to pull herself up from our small boat up onto the deck of Perdida.  She was able to crawl around the engine room and reach through the bilges to make repairs.  That woman could grind a winch handle to raise the sails all the way to the top of the mast and even cook a meal while winds howled and the hull pitched.  I couldn't do any of those things.  I suddenly realized that I wasn't a complete person anymore.  I was like a paper doll with only two simple dimensions trapped in a two dimensional world but with a view upon the full world led by so many lucky people. 

My mother had gone to pick up fish tacos at one of the stands and my daughter and I sat near the very small petting zoo (which included two chickens, one rabbit, one tortoise and a couple of lizards) while my daughter reached her little hand through the fence, trying to pet the bunny who never did come close enough.

We finally made it home and my entire body was throbbing with pain.  I snapped a few short words at my mother and lay down on my very familiar couch, which, within the last two years has become a virtual appendage and turned my heating pad on high.  Tears were streaming down my face and self-pity set in for the rest of the night.  I so desperately hope this new medications takes some of this pain away.

Amitriptyline is Kicking My Butt!



I've been taking 100mg Amitriptyline for three days now and I and I feel like I've been living in a dense fog - denser than usual I should say.  I'm so tired and zoned out, I can hardly do anything.  The prescription is for 150mg per day so as soon as I feel more normal, I'll have to bump it up even more, which I can't say I'm looking forward to.  I've been off Zoloft for three days, so tonight I'm going to take the first dose of Savella from the titration pack.  I have a feeling this week is going to be difficult until I've adjusted to the new medications.  I've been having problems sleeping again complete with nightmares and disturbing dreams.  The body pain and muscle weakness haven't gotten any better either.  I really am tired of this medication cha-cha, withdrawal symptoms while going off, side effects of the new meds.

Wow - I'm just full of positive words today!

Zoloft for Fibromyalgia Pain?

Fibromyalgia Trigger Points

As I posted Tuesday, I've been titrating off Zoloft and replacing it with Amitriptylene so I'm able to take the Fibromyalgia drug Savella.  According to drug interaction information, Savella should not be taken with an SSRI so this change, as inconvenient as it is, was necessary.

Late last year, while conducting yet another of my countless experiments with regards to curing this dismal disease, I also weaned myself off Zoloft (as well as all other medications) in order to follow the Alpha Nutrition Diet for Aching and fatigue (original post).  I noticed when I was completely off Zoloft, that some of my symptoms, which had been absent for some time, returned.  I started again to feel as though I had the flu.  I felt feverish, sweaty and my entire body ached as one does when afflicted with a high fever.  I attributed it, simply, as another phase of the ever changing disease, however, I did make a mental note that the symptoms had appeared almost exactly to the day that I stopped taking Zoloft.

I hadn't read anywhere that Zoloft was being used as a treatment for Fibromyalgia or ME/CFS so I didn't put much stock in the idea that the timing was significant.  The flu-like symptoms did go away, though I can't remember the relationship with when I began taking Zoloft again.

Last night my two year old daughter had one of her infamous sleepless nights which, of course, meant I got very little sleep as well.  Anyone who has Fibromyalgia or ME/CFS knows that lack of sleep is a killer.  Last night, as I lay next to my daughter in her small bed, afraid to move a muscle or even breathe too deeply for fear she would awake, I felt my leg muscles begin to throb and ache, then, the pain slowly spread throughout my entire body all the way to my finger tips.  In what seemed like minutes from when my body started aching, I felt sweat begin to form on my upper lip and the fever-like chills began.  I thought,  "Oh shit!  It's back!".  I'd been fortunate to be rid of these flu-like symptoms for some time and it hardly seemed coincidental that I had taken my last Zoloft two nights before.

I've discovered through reading others' experiences, that treatments for both ME/CFS and Fibromyalgia vary greatly from patient to patient.  One of the strangest and most baffling things about these diseases is the drastically different ways they effect each sufferer and therefore, the methods of treatment that are used.  Zoloft!  Who knew?  If my experiment with Savella doesn't pan out, I'll be going back on Zoloft for sure!  If I can't be completely cured, at least I know some of my symptoms can be relieved.

Amitriptyline & Savella for ME CFS & Fibromyalgia

I'm still going strong with the vegan diet (day 26) and I really think it's helping me.  I posted the question on a couple different forums to see if anyone else had experienced cessation of symptoms after switching to a plant-based diet and I got mixed responses.  Some reported improvements while another wrote she had quit a vegetarian diet after becoming sick and found that meat protein had helped her.  It seems that like so many other aspects of ME/CFS and Fibromyalgia, diet also effects sufferers very differently.

I had a visit with my doctor last week and we decided I would try the last mainstream medication for ME/CFS and Fibromyalgia I haven't taken yet, which is Savella.  Since Savella can't be taken at the same time as an SSRI, I'm tapering off Zoloft and starting on Amitriptyline, a tricyclic antidepressant.  After I'm completely off  Zoloft (in two weeks or so), I'll start taking the Savella and see what happens.  I'm not getting my hopes up since no other prescription medication I've tried has helped, but I feel I have to try everything that's "out there" before resorting to more extreme measures such as B Cell Depletion Therapy which involves toxic chemo-therapy drugs.  If this latest experiment fails, I'll be making an appointment for a consultation with Dr. Andreas Kogelnik at Stanford who is leading much of the research being done on B Cell Depletion Therapy for ME/CFS in the USA.  I have some links and other information about this subject on my website: ME/CFS & Fibromyalgia Awareness - B Cell Depletion Therapy.

Vegan Diet for CFS & FMS - Day 16

I have to admit, of all the different diets I've tried, this is the easiest to stick with.  Since I've been mostly vegetarian for years, cutting out dairy wasn't as hard as I would have thought.  There is actually a very wide variety of vegan food choices including pasta and marinara sauce, peanut butter & jelly sandwiches, humus and spinach wraps, brown rice with cooked vegetables and olive oil and many more meals don't contain any meat or dairy.  I try to use organic ingredients when possible because I still believe that there's something to the theory about chemical sensitivity in food and it's connection to autoimmune disease.  I can't just dismiss the presence of chemicals in our food supply as having no deleterious effect on the health of the general public.  The increase in diagnoses of strange unexplained diseases (such as Fibromyalgia & Chronic Fatigue) is unequivocally on the rise.  The statistics are indisputable, but I digress.

I still believe my experiment with diet change is having good results.  They aren't drastic by any means but I do feel as though I have more energy and I even lost five pounds.  I hope that as I continue eating a plant based diet, the results will become more noticable.

To change the subject a bit, I'm also experimenting with an over-the-counter supplement called Zyflamend by New Chapter which was recommended to me by Dr. Richard Podell in New Jersey.  The capsules are quite expensive so I want to know they really work before investing any more money in them.  Zyflamend is a supplement that was created to address joint and muscle pain (among other ailments).  I started taking two capsules a day back in January and I felt as though my muscles didn't feel as weak as they had but I couldn't be sure the Zyflamend was responsible.  I'd cut down to one capsule a day for the last couple weeks to extend my supply.  I've been noticing increased muscle weakness and knee pain.  Yesterday I took my last capsule.  If the muscle weakness and joint pain continues or gets worse, I'll try taking the Zyflamend again and see if it was in fact what had alleviated the weakness and pain initially. 

Here's the link to the Zyflamend site if you want to check it out.
http://www.newchapter.com/zyflamend

Vegan Diet for ME/CFS & Fibromyalgia - UPDATE

So, I've been on a strictly vegan diet for a couple weeks now.  I still don't have any definitive answers regarding the effectiveness of this diet on my condition but I do think I generally have more energy, as I wrote in my last post.

The only negative thing about this diet I have discovered so far, are the...well...digestive issues.  Without going into much disgusting detail, I'll just say that the dramatic increase of fiber in my diet had some pretty gross side effects.  I went online to see if others were having the same problem and they most certainly were.  Apparently this is a common issue for many people during the first couple weeks on an exclusively plant based diet.  I made a few adjustments, such as, reducing my daily intake of legumes and fruit and it seemed to eliminate the "problems" almost immediately.  In fact, the very first day I adjusted my diet, I experienced almost no stomach discomfort.

So, if you're struggling with some of the same issues, hang in there.  Just try adjusting things a little at a time and I'm sure you too will find a balance that makes your digestive system happy.

To follow up on an earlier post (Being a Mom With ME/CFS & Fibromyalgia), my time has officially run out with regards to the St. Patrick's Day fundraiser at my daughter's pre-school.  In last months newsletter, the teachers had asked if parents would plan to help with the corn-beef and cabbage dinner (talk about digestive issues) they were having to raise money for the school.  When I attended a parents meeting, the director brought this subject up and I sunk down in my chair, hoping no one would notice that I hadn't volunteered for anything.  Since then, I've been wondering what I would say when someone finally asked me point-blank if they could count on me.  Fortunately, the request came in the form of an email which didn't put me on the spot as much as I had imagined.  I explained that while I would be happy to bake cookies or cupcakes for the event, I wouldn't be able to work at the dinner due to my "Fibromyalgia (among other things)".  I continued by writing that I had many physical limitations and that I had been forced to quit my job as a result.

I don't know what the director's reaction will be when she reads the email tomorrow morning, but I'll find out when I drop my daughter off.  I will also have to admit that neither my husband or I were able to sell even one of the eight tickets to the event each parent had been given.

I know, intellectually, it's not my fault that I won't be participating in the St. Patrick's Day dinner, but emotionally, the whole situation just makes me feel like a terrible mother and I fear that's how others will view me.

Vegan Diet for CFS/FMS - Day 6

Well, I don't want to get my hopes up prematurely, but I think I may actually be feeling a bit better.  I think I have a little more energy than usual.  Since my last post, I've spoken to more people who have seen the documentary film "Forks Over Knives" and were also inspired to "go Vegan".  They also reported feeling better than they ever had.  Of course, none of them were suffering from chronic illnesses that I'm aware of but just the fact that a change in diet could have such a profound effect on one's general well-being is so exciting.

My conscience is so much clearer now too.  I gave up eating meat quite a few years ago but still ate fish and dairy.  I always felt guilty, since I knew of the tortured lives chickens and dairy cows endure, never seeing the light of day or breathing fresh air.  I love the taste of fish, so I always rationalized eating it by thinking that since fish lived in their natural habitat and basically led a normal life up till the time they were killed, they weren't nearly as inhumanely treated as other farm animals.

I never had a rationale for eating dairy, I guess I was just lazy and simply avoided thinking about it.  Anyway, I didn't mean to get on my animal rights soap box since it's not really relevant to the topic.

I'm displaying the link for the film "Forks Over Knives" here again because I highly recommend watching it.  I think it can be very helpful if not life-changing.

Plant Based Diet for ME/CFS & Fibromyalgia?

I recently viewed the documentary film Forks Over Knives.  I'd been seriously considering a vegan diet for some time but hadn't been motivated enough to actually start.  I haven't eaten meat for many years but I always ate fish and dairy products.  This film was so inspiring that I haven't eaten a morsel of animal based food since watching it.  I'm already on day three of a completely vegan diet.

Anyone who's read previous posts in this blog knows that I've tried at least three different diets as well as countless medications, supplements, etc, in an attempt to get some relief from, or even a cure for my debilitating ME/Chronic Fatigue Syndrome and Fibromyalgia.  So far I've had little to no results in the more than two years I've been suffering with these diseases.  So now, I'm hoping, once again, that this will be my "holy grail".

Forks Over Knives is an excellent film that I think could really change your life.  It's amazing how profoundly healing a plant based diet was for some of the subjects in the film.  Drs. Campbell and Esselstyn go into scientific detail on why animal based foods are detrimental to your body and how plant based foods can actually stop and even reverse damage to your heart and other organs.  In my opinion, they prove that eating animals is not good for you as well as being (unknowingly) unethical and inhumane.  I loved the film and recommend everyone watch it.

Yesterday, while walking home from the market, I met a friend who knows I haven't been well and she asked how I was feeling.  I told her that I was hanging in there but was still feeling pretty bad.  I then briefly summarised my experiences since I had last seen her.  She said she could completely identify with not feeling well, then went on to tell me how she'd been having bad headaches and that she and her husband had finally decided to start a vegan diet, hoping to feel better.  I couldn't believe the irony of meeting her and having this discussion only two days after my having seen the film.  She went on to say that she and her husband had never felt better, that her headaches had gone away and that both of them had lost weight.  It must be a sign...maybe I'm actually on the right track this time. 

I'll continue updating as my latest battle with ME/CFS and Fibromyalgia continues.

How DARE They!!??

Two days ago I received a letter in the mail that really pissed me off.   It was a solicitation from the hospital I recently visited, for a donation to their "foundation".   I couldn't believe it.   I posted recently about this particular ER visit last month.
My Very Unproductive Visit to the ER
ER Visit Follow Up
To sum the incident up, while I was in NJ for the holidays, I ended up in the ER with a severe bout of depression that I think was a side effect of some medication I was taking.  After stagnating in a psych ward screening cell for about eight hours, I was discharged without being treated or even being seen by a doctor.  The next day, still not able to leave my bed, I received a call from a psychologist from the hospital who apologized profusely and twice, tried to get me to come back to be admitted.

I don't have insurance and am currently unemployed due to my illness.  I spent thousands of dollars last year on doctors visits, blood work, medication and hospital visits.  I'm still paying for blood work I had done in 2010 and my credit cards are nearing their limits.

The fact that the hospital, after sending me huge bills that I'll be paying for years, would have the audacity to ask me for a donation is mind-boggling!  Something is really wrong in a country where health care costs are so high that the patients cannot afford to become ill and apparently even those sky-high fees aren't enough to keep the hospital running, even as hospital administrators are paid obscene salaries.

My hometown hospital does the same thing.  Every few weeks I receive a plea for money in my mailbox.  Every time I open the envelope it gets my ire up and I enthusiastically throw it in the recycling bin.

Does anyone else feel offended by these solicitations?  Ok, I'm stepping off my soap box now...