Alpha Nutrition Diet - Day 7

OK - I'm really starting to get sick of this diet.  I want real food!  But, being that I've made it through seven days, I suppose I should hold out for three more.  I know I'd be really mad at myself if I quit now.  Anyway, I want to be able to cross "food allergies" off my "Why Am I Sick?" list.

I think I over-did it, exercising though, as I was afraid of.  I've felt so run-down today.  I'm so tired I can hardly keep my eyes open.  I think, tomorrow, I'll take a break from exercise or I'll do a short very low-impact walk.  This is so frustrating!  I want to get back in shape so I can be healthy but when I try to exercise it sets me back even more.  It goes against common instinct and logic.

Alpha Nutrition Diet - Day 6

I have actually made it through six days of the Alpha Nutrition Program.  I may be feeling better but I'm not really sure.  Six days of ingesting only Alpha ENF, white rice, rice crackers, water and apple juice.  It's definitely getting harder to resist other foods.  Especially when I have to prepare meals for my daughter.  I went for a walk this morning and I felt a little stronger than usual.  I pushed myself to walk a little faster than normal and although I had to keep pushing the entire time, I was able to maintain a fairly decent (for me) pace.  I just hope I didn't push myself too hard and become useless for the next three days.  It has happened before.  In fact, the very first time I got really sick was the day after I had totally over-exerted myself.

Before I got sick, I used to walk about two miles a day up (and down) slopes with an average grade of 9.5%, which I think is pretty steep.  I would say I was in better shape than the average person but not an athlete by any means.  While I was pregnant with my daughter I wasn't able to exercise at all due to extreme fatigue - like, couldn't stand up long enough to take a shower, fatigue.  Because I wasn't exercising and I was eating the same or more than average, I gained weight.  I gained fifty pounds during my pregnancy!  Miraculously, when I left the hospital, thirty of those pounds had disappeared (ten of which was my beautiful daughter) but I still had twenty to go and I was determined to loose them. 

About two months after my daughter was born, I started to get my energy back.  It was very short-lived though.  I started exercising again, struggling up those same hills I used to walk with ease.  One day, determined to get out for a walk, I took my daughter in her stroller, since my husband was at work and walked up an even steeper hill than I usually do.  My muscles and lungs burned the whole time but I kept pushing that stroller higher and higher with thoughts of me in my pre-pregnancy jeans as a motivation.  I had clearly over-done it.  When I got to the top my face was bright red, I was covered with sweat and could hardly catch my breath.

The very next morning I woke up feeling like I had the flu.  My whole body ached, I felt like I had a fever (but didn't) and I could hardly get out of bed from weakness.  That was two years ago and those symptoms are still here and more have joined the repertoire along the way.  Although the severity of my illness has increased and decreased over the last two years, it has never gone away.  I have always thought, maybe that uphill climb while pushing the stroller had set something off, but I'll never really know. 

Alpha Nutrition Diet - Take Two

Now that I'm finally feeling a little more stable, mentally, it's time to get back to my "I'll try anything..." mode.  Researching this stuff and trying new things is the only thing that keeps me from slipping down "the black hole" of hopelessness.  Maybe I haven't fully accepted that I'm chronically ill.  I still have a feeling deep down that if I keep trying different things, I'll eventually find what's causing this and continue leading my life where I left off two years ago.  Maybe this is naive but I'm not to the stage yet where I can accept that this is how I will possibly feel for the rest of my life. 

So......I'm trying the "Alpha Nutrition Diet for Aching and Fatigue" again.  I posted about it some months ago and made it to day two, I think.  The timeline is ten days and I'm on day three this time.  I've ingested nothing but Alpha ENF, white rice, water and juice.  Surprisingly, I feel pretty good (relatively speaking of course).  My energy level seems better than normal, which, I didn't expect so early on.  It's hard to resist the few holiday treats still lingering around but it is nice not having to think about what to eat. 

The Delayed Pattern Food Allergy hypothesis did make a lot of sense to me when I read about it.  One of the things researchers think might be causing these unusual food allergies, are all the chemicals, like pesticides, that are in the food we eat.  Our immune systems go into overdrive trying to attack them then get stuck in this hypersensitive mode and begin attacking things that aren't harmful to your body.  Some theories add that this hypersensitivity is what eventually causes autoimmune disease, when your immune system starts attacking your organs.  Personally, I'm sure I've ingested enough chemicals to easily make my immune system crazy.  I don't do much cooking (to put it mildly) and I've been know to eat every meal of my day out of a box.

Well, I hope I make it to day ten this time.  Who knows, maybe it'll actually make me feel better.  I have to have the hope that it will.  For more information about the Alpha Nutrition Program here's the link:  http://www.nutramed.com/alpha/index.htm

ER Visit Follow-Up

The day after my very disappointing experience in the psych screening department at the hospital, I received an interesting phone call.  The woman who called, introduced herself as a psychiatrist from the hospital's Mental Health Department.  She began by apologizing for the fact that I had not been admitted to the hospital the previous day.  She said she was very disappointed and that admitting me would have absolutely been the right thing to do.  She was concerned about me and tried to get me to come back in, saying that I wouldn't have to go through screening again, I would be admitted straight to the hospital.  I told her I was leaving for California the day after tomorrow and was just trying to wait out the sickening depression that had most likely been induced by the Prednisone.  I told her my family was here, aware of the situation and watching me very closely.  She told me she was still concerned and asked again if I wouldn't feel better just coming to the hospital.  When I refused, she gave me her cell phone number and said I could call at any time, even in the middle of the night.  I thanked her for the call and hung up.

I guess it makes me feel a little better that someone at the hospital took my condition seriously.  I don't know, I had felt really abandoned that day in the ER and that had only exacerbated my depression.  It's shocking that someone can go to an ER saying they're so depressed they'd rather be dead and not be admitted.  It's just another example of my asking for help with this thing and not getting it, although, in fairness, many have honestly tried. 

I'm back home in CA and feeling the same or worse than I did when I left seven weeks ago.  Dr. Podell wasn't able to help me mostly due to the fact that he was only in NJ for a short time.  He is an excellent doctor though who does know a lot about ME/CFS and Fibromyalgia and seems to be really up-to-date with the current research.  If you live in NJ, NY or PA and are looking for a good doctor check out his website:  http://www.drpodell.org/.  He considers himself a practitioner of "Integrative Medicine" which merges traditional western medicine with alternative approaches.  I'm not a big believer in most "alternative" practices so I was glad to find that he was sceptical as well and only used alternative approaches that had been thoroughly studied.  His website is a bit mis-leading in the section where he writes about treating Fibromyalgia with anti-virals (Valcyte).  Since that was written, he's apparently had a change of heart about that option.  I asked him about it and I got the impression that he hadn't gotten as good results from the anti-viral treatments as he'd hoped and wasn't prescribing them anymore.  

On to the next thing.....

My Very Unproductive Visit to the ER

Yesterday I spent five hours in the ER, where I never saw a doctor or got treatment of any kind for my severe depression but was instead discharged and told on the way out that if I didn't send in the Charity Care applications forms asap I would be receiving a whopping bill in the mail. How can this be you ask?  Read on....

If you read my last post you know that I've been having problems with Prednisone this past week.  Needless to say, I did not get the same miracle-like results from it that I had gotten a year and a half ago.  I spoke to my doctor and he agreed I needed to get off it, but you can't just quit Prednisone cold turkey, you have to taper the doses.  He gave me a three day taper of 30mg - 20mg - 10mg.  The day before I felt pretty bad but yesterday I was so deeply down I really wanted to be dead.  I was so depressed I thought I would throw up.  My limbs were tingling from the psychological pain and my hands were shaking.  My chest hurt and felt heavy - I was truly scared and could do nothing but curl up in a ball.  I couldn't even talk to anyone.  When I called my doctor again, he told me to go to the ER. 

My dad knows someone who works for county mental health services.  He called and explained my situation and she told him to have me go to the ER and that there would be someone there waiting for me.  When I got there, there wasn't really anyone waiting for me, but I didn't have to wait too long before being taken into psych. screening.  

If you've never been in a psych hospital department before, it can be a little scary.  You can't wear your own clothes or have ANY of your own items with you including cell phone, purse, etc.  It all gets locked up by guards who patrol the hallway.  Food is served on Styrofoam trays with Styrofoam plates and plastic spoons - no knives or forks.  The bathroom door doesn't lock but the door to your room locks from the outside if you close it all the way.  The room contains only a bed (complete with tie-down straps), one pillow and two shabby blankets.  The TV is up near the ceiling encased in metal grates and thick plastic. There's one remote to go around and after a certain time the volume is turned so low you can hardly hear it anyway.

I spent the better part of the day there curled up in my gown on the bed.  People came in to talk to me, to make sure I wasn't going to hurt myself and I had blood drawn and gave a urine sample.  I layed there for hours.  No doctor came to talk to me and I wasn't given any medication to ease my suffering.  At about 8pm a woman came in to tell me that they hadn't been able to reach my therapist so they weren't sure what to do and I could go home if I wanted to.  I asked if I would be able to speak to a doctor.  She said there wasn't a psychiatrist on the premises right now but that she could get one on a video conference.  I reluctantly agreed.  About ten minutes later I was lead to a room with a TV screen.  I spoke to the Dr. for about three minutes and she basically told me there was nothing she could do and that I would just have to wait out the symptoms until the Prednisone was out of my system.  I thanked her and they discharged me.  I was out the door twenty minutes later and still depressed as hell.

Another Horrible Week

My next post was supposed to be a continuation of the long list of drugs and experiences I'd had with those drugs during this ordeal.  I must, however, take a short detour with this post as it may have some relevant information to add.

My week started out this past Wednesday.  My doctor had prescribed Welbutrin, 150mg per day to address my severely, worsening depression and Prednisone as a third experimental trial to see if the previous results I'd had (see last post) would repeat themselves  The Prednisone dosage was to be as follows:  Day 1 - 60mg, Day 2 - 50mg, Day 3 - 40mg, Day 4 - 30mg, Day 5 - 40mg - Day 6 - 0mg, Day 7 - 40mg, Day 8 - 0mg, Day 9 - 40mg, etc.and to follow that dosing till I spoke to him.

The next afternoon, after having taken both medications my symptoms began to worsen.  Many of my old ME/CFS/Fibromyalgia symptoms that had been under control for about the last two months, came back with a vengeance.  I felt the all-over body pain creeping in and as the hours ticked by, they got worse.  I started to feel as though I had a fever (but of course I didn't actually) and coordination and energy dropped.  I was so depressed.

At first I thought that it may have been that I had missed a dose of Zoloft the night before.  When I had started taking the Zoloft (again) two months ago, my pain had mysteriously gotten much better.  My condition in general was better and all from a low 100mg dose of Zoloft it seemed.

I got back on track with the Zoloft and hoped to see a change after a couple days, but none came.  The pain and feverish feeling (on top of the already present weakness & fatigue) were getting worse if anything.

Then yesterday, I don't know what the hell happened.  I wondered if I had mistakenly gotten caffeinated coffee (a big no-no for me) that morning during my daily .5 mile walk to Dunkin Donuts because about an hour after I got home, the you-know-what hit the fan.  My mental state degraded, gradually escalated into a full-blown anxiety attack, complete with shaking limbs, heart practically beating out of my chest, that feeling that I was completely out of control and may just die any moment.  I couldn't talk to anyone or keep my mind on a single thought.  This lasted for hours (the severity waxing and waning) until I excused myself with an Ipod & headphones and locked myself into a room, lyed down on the bed, listened to Brahms and tried breathing exercises.  Oh yeah, I also took .5 mg of Ativan which is what I think finally brought me out of it for the most part.  As a result of my anxiety and just plain being out of my mind, I had missed a Prednisone dose (30mg).

The day wasn't over though.  My husband had flown in from LA that day after not having seeing me and our daughter for about six weeks.  We ordered pizza and sat down to eat.  I still wasn't feeling well and was not (to put it mildly) the life of the party but it seemed that the worst of my anxiety was over.  At one point I leaned my head over toward my husband's shoulder for some comfort.  The moment my head was down, my world began to spin out of control.  I'm talking full vertigo here - didn't know which way was up.  I also felt as though I would get sick at any moment.  I told everyone I needed to lay down and somehow stumbled to the couch as the worst of it was subsiding.  As I layed down, I still felt really dizzy and nauseated, but the spinning had stopped.  I remembered the missed dose of Prednisone and asked my mom to get it for me thinking I may be having withdrawal.  My dad took my blood pressure and it was 113/72 which is on the low side, but my pressure tends to be lower.  In about thirty minutes the dizziness got a little better and I was able to get up (with assistance) and be led slowly up the stairs to bed. 

The dizziness and subsequent nausea plagued me all night long.  When I got up to use the bathroom in the middle of the night I lost my balance and almost fell twice.  This morning, I don't feel too dizzy but weak and unsteady on my feet. 

I'll be calling my doctor as soon as his office opens.

Many Many Drugs - Prednisone

Before my last doctor's visit a week ago, I sat down with all my medical records (a very thick file) and compiled a spreadsheet of all the medications I've been prescribed since this nightmarish ordeal began two years ago.  It took a while to organize all this information since dosages on some of the drugs had been changed several times.  When I was finished, there were still some holes in my timeline because I remembered that at times, my doctor had changed dosing over the phone and I hadn't written it down.  Anyone who has ME/CFS or Fibromyalgia knows that if something doesn't get written down, it's forever lost in the fog that took over where your brain used to be.

Two years ago, when I first visited a doctor about my strange set of life-altering symptoms, he ordered, what I didn't realize at the time, would be the first of many rounds of blood tests.  He guessed that I was having a response to some sort of inflammation.  He suggested I try aspirin to bring down the inflammation until the blood tests came back with some answers.  Everything came back normal including the Rheumatoid Factor except for the ANA titer which came back positive with a speckled pattern - 1:36 . 

When I went back a couple weeks later, my symptoms had gotten worse and more blood was drawn.  The doctor I saw this time (from the group) prescribed Prednisone at 60mg per day for five days then 10mg per day for fifteen days, then 5mg per day for ten days.  A few days after I started the Prednisone, I actually felt a lot better and was able to return to many of my previous activities including, walking up two miles of steeply inclined roads per day.  But, about a week into the lowered doses, my symptoms returned and I was experiencing a lot of pain and severe fatigue again.

My doctor prescribed another high-dose round of Prednisone which was effective but short-lived as before.  She explained that Prednisone was not a long-term option at this point due to the toxicity of the drug, so I went back to feeling sick and returned to the doctor once more.

Tune in next time for...drug number two! 

Lower Than Low

I went to see doctor number 4 for a second appointment today.  The prognosis was so depressing that I spent most of the day after, crying.  I was finally able to sleep for an hour or so which helped my mental state a bit and allowed me to talk to my parents about the doctor visit, which I hadn't been able to do earlier in the day.

None of the medications this doctor has prescribed have helped me.  Admittedly, the doses were low but I haven't seen any real change in my condition.  Actually, that's not entirely true.  I've been taking Zyflamend, which is an otc supplement for joints, for about two weeks.  I've been walking one mile per day and up until about two weeks ago the walks consumed incredible amounts of energy and effort.  It was as though I were a baby just learning to walk.  My muscles were weak, burned and didn't seem to involuntarily "know what to do".  I had to mentally direct my legs to lift and move forward which resulted in very slow, clumsy walking.  Since I've been taking Zyflamend, my walking is getting smoother and easier.  I think I'm walking a little faster and my muscles don't have nearly the weak, burning feeling they had.  It may just be a phase, but I'll keep taking the Zyflamend for the time being if I can afford the exorbitant cost ($40 for 60 capsules taken twice a day).

The doctor had also prescribed low dose Prednisone, Nuvigil, Sinemet and Lyrica which I tried one at a time.  Since they didn't seem to help me, we're moving on to the next "experiment".  I had taken high-dose Predisone over a year ago and to date, it's the only thing that has given me any of my life back and it actually made me feel almost completely well at one point.  This only lasted a week or two though, since my doctor didn't want me taking that high a dose (50mg per day) for too long.  I was so dissappointed when it wore off, though, and I was back to being as sick as I had been before taking it.  According to this doctor, this is an anomalous reaction considering my rhumatoid factors, etc. were normal.  He's guessing that I must have some inflamation somewhere in my body that's just not showing up in the blood work so, he's prescribed high-dose Prednisone again.  He wants to see if I have the same reaction and if I do, I can have a "break" for a couple months while we figure something else out.  When I asked him what he thought my diagnosis might be he mentioned Fibromyalgia, CHF and Mixed Connective Tissue Disease but added that these were all just names and probably related to some un-named auto-immune disease.  There were some other "speculative" possibilities we discussed but I just don't have the energy to go into detail about them now.  I hope to in my next post.

Since I'll be going back to California in two weeks, I probably won't see him again except for maybe an appointment via phone.  He's given the name of a doctor in the Bay area that he thinks I should see.  Since I live in Southern California I'm not sure how that would work logistically but I'm not worrying about that now.  My only goal today and tomorrow is to feel better mentally.  My depression has been so severe during the last couple weeks that I haven't been able to conjure a purpose for my existance on this planet.  The doctor prescribed Welbutrin to augment my Zoloft but I'm sure it'll be at least a couple weeks before I see any effect from it.  I'm just hanging here by a thread in the meantime.

Lots to Catch Up On

Things had become so frustrating in my search for relief from this ailment that I even lost my enthusiasm for writing.  I just realized that it had been so long since I had posted.

I am currently staying with my parents in New Jersey and I've been here since early December.  I'm sorry to report that things aren't really much better.  I had planned on visiting my family for the holidays (as I do every year).  But when I found a specialist (Dr. Podell in Summit, NJ) on the Internet who's office is not 30 minutes from my parents house, my trip took on a second purpose. 

I've been here for about four weeks and have tried two different prescription medications (Nuvigil & Prednisone) and about three herbal supplements (potassium, DHEA & Zyflamend).  The prescriptions did little for my condition so the doctor told me to stop taking them.  I'm not sure about the supplements, but he said to give those about four weeks.  I've seen the doctor once for a two hour appointment and had numerous phone conversations.  He has a lot of experience with these "autoimmune mysteries" and has said that the only real way to find relief is through extensive trial and error.  Of course this concept is not new to me and has been how I've been living for the past two years.  He did find those elusive trigger points that my other doctors couldn't find so at least I now have a definitive diagnosis of Fibromyalgia, however, he thinks there may be other things going on as well such as Mixed Connective Tissue Disease.

I've been compiling and organizing all of my medical records for the last two years including blood work and medication history.  My next few posts will list this information as it may be helpful for anyone else out there who's going through a similar experience. 

I'm feeling very frustrated, discouraged and depressed.  I'm so scared that I'll never get better.