Wednesday, November 30, 2011

Pt. 8. Dr. Holtorf (Fibro and Fatigue Centers)


I can't believe I haven't written anything since August!!!! So sorry to have left any followers high and dry. I'm back though. If you haven't read any of my blogs, please start from the bottom of the page from part one. 

So, I think I have kind of mixed up my time line, but it's not that important. Sometime about 4-5 years ago I found The Fibro and Fatigue Centers which had doctors offices in many states around the U.S. The president back then was Dr. Kent Holtorf and his office was in Southern California. His specialty was the endocrine system and because he developed fibromyalgia and he layed his focus there.

 I found him through an internet search and did a bit of research on him. Made an appt., which took a number of months. He unfortunately  doesn't take insurance  but does give you a super bill to give to your insurance. I never bothered, plain too lazy and back then we could afford it. I knew the insurance company would just give me the run around and then not pay for any of it. Each visit cost us anywhere between $1500- $2500 for visit, lab, and meds (natural supplements and prescription)

He ran a truck load of blood tests on me. Many of them were tests that regular doctors don't do and when you show it to them they toss it in your face and say, it's all bullshit from a hustler who just wants your money.I disagree! There may be charlatans out there, but there are also practitioners and doctors who are not run by the drug mafia. Who are trying to make  a difference but are constantly being bulldozed by big pharma and their doctor goons.
"Don't listen to the quacks out their that just want your money," they say. "Just spend your money on insurance and all the pills we are pushing down your throat. It will make you forget all your woes....."

Anyway, after the test results came in, Dr. Holtorf sat me and my husband down and went over them with us. HE WAS THE VERY FIRST AND ONLY DOCTOR THAT EXPLAINED MY CONDITION SCIENTIFICALLY THAT MADE SENSE!!!! He even drew me diagrams on how my ATP system wasn't working and how when the body cannot produce energy, it tries harder to work and gets more run down. (Well he described it much better than that but this was the basic idea) He told me that I didn't have the right amount of Killer Tcells, that my thyroid seemed fine on regular tests but wasn't REALLY working well enough. He tested the thyroid for t3 and t4, tests that doctors just don't bother to do because they say the total thyroid is the most accurate and all that matters.  He said that even a low normal is abnormal since the 'normal' thyroid range is so wide. He told us about about mytochondrial disfunction,  also that my adrenals were over stressed and that they kind of over reacted. This made complete sense! I am so jumpy. Whenever I am startled or shocked in anyway, my fight or flight kicks in but does not immediately calm down. Even though I get mentally calm, my body goes into panic mode as if  I'm having a small heart attack.  When I have tried to explain this to any 'regular' doctor after this, they again dismiss it or ridicule it saying that there is no test that shows that kind of adrenal function.  That there is no such thing as adrenal fatigue or hyper adrenals. When I ask them how they explain my symptoms they have no answer

I taped our second appointment because it was so much explanation. I should find that tape and listen to it again. He explained very well and for the first time a doctor told me that I had an actual medical condition that could be explained. I mean that he could tell me some of what was malfunctioning in my body to make me this miserable.

He gave me loads of supplements to take as well as shots of human growth hormone to inject into myself. I think that visit cost us something over $2500.
Anyway, to make a long story short, I think he just over did it with all the supplements. I tried them for a few months but it all got to overwhelming for me to remember all the stuff I had to take from  morning to night.

The next visit which was a few months later I didn't feel any different so he added more supplements. I think it was our 3rd visit that he moved to an new updated fancier office and the name changed to Holtorf Medical group. I was chatting in the waiting room with one of his patients who really liked him but had yet to see any results. She had been seeing him for 3 years and jokingly said that she helped pay for his "fancy car and new office."
This kind of disillusioned me. Was I going to be someone coming in for another few years with no results?

The whole trip down to L.A. and staying at a hotel everytime was very costly. Dr. Holtorf told us of his new clinic opening in Northern California.  So my husband and I decided to wait for his new clinic that was an hour away from  our house to open and then continue with a doctor there.  I even made an appt to be one of the first patients there.  My appt was to be in  May of 2008. They called and said that there was a delay in their opening and had to cancel my appt. They said that they would call when they were ready but never did.
Meanwhile, it was 2008 when the economy started to crash. My husbands business went belly flop and by the time Holtorf Medical Clinic opened, I could not afford to go there anymore. So that never happened.

Anyway, over the next few years I visited an immunologist, endocrinologist (who didn't even want to see me, just told me that he couldn't help me over a phone appt...Kaiser....) and a couple of rheumatologist. All of who ridiculed everything I told them about Dr. Holtorf's findings, one even to the point of calling his type a charlatan and looking at me with pity. Saying that there were no such things as proper tests for atp or Killer T cells. That I should watch my money and how we are the poor victims being taken advantage . That if anyone had a cure for fibromyalgia the would not be keeping it to themselves.
I stopped arguing with him. You can't do so with such closed minded people.
I wanted to tell him that he was the one that was brainwashed by the FDA and the drug companies running everything.  But I didn't have the energy and you can't change a persons mind with mere words that he just ridicules.

I think if I could have afforded to continue w/ Dr. Holtorf or one of his associates, it probably would have helped me. It would have helped a heck of a lot more than Kaiser anyway!  Kaiser, the pill pushers.  I would recommend anyone who can afford him to give him a try.

My biggest issue with their practice is that I called and try to get my records from them to show to other doctors what he'd said about me but they said that they would not give those out.Very strange and upsetting.

The biggest problem for us fibro sufferers or  anyone suffering from any chronic problem in this country is that you need a lot of money to find the right doctor. It's trial and error. You will run into a lot of people that have good intentions but can't help you, some who are just scams and many one dimensional doctors who have been trained to disbelieve anything their professors didn't teach, especially anything natural, having to do with nutrition or  anything different from what the drug companies (funding the med schools) want us all to think. Not having insurance in this country can cost you everything you own. Having it only helps with the handful of diseases they can treat with drugs or surgery or if there is an emergency.

I'll be back soon. Thanks for reading. I appreciate any input you may have. Be well. Gentle hugs, Sheri

Tuesday, August 30, 2011

Pt. 7 The Environmental Health Center in Dallas w/ Dr. William Rea

Hi everyone, I know, large gaps between my posts. Honestly, I haven't really felt like rehashing history these days. So I think the next post  be my last post to talk mainly about the past. I will refer to past things, I'm sure but mostly stay in the now.

A lot of well meaning friends made suggestions to me but when they suggested The Environmental Health Center in Dallas, (I'll be calling it TEHCD for the remainder of this post)
they were really adamant about how wonderful and helpful it was. How people flocked from all around the world to see Dr. Rea. Well this was  several years ago (This should have come before the baby posts because it happened before I had my second daughter so I am guessing it was about 9 yrs ago? don't remember anymore without digging up my papers... oh the damned fibro fog)

Anyway what they do at this place is really interesting, although EXTREMELY expensive. It's unbelievable when you see just how many people have environmental allergies. We flew from Northern California to Dallas  to have our appt with Dr. Rea. I was to stay there several days to a week to have tests done and other things.
 It was wild to see how many different people with different illnesses were there. I specifically remember this one guy with his head wrapped in foil and stuff to keep e.m.f. out of his head. It seemed so sci fi. But Dr. Rea who does travel around the world and give lectures and writes books and things is truly admired by many. He ordered tons of tests. Such as a stool test to see if anything strange was in my intestines.
 Now this was back when I was still really really ill and the fibro diagnosis was fairly new. He had me see a nutritionist and also do a thermography of my breasts. Which, by the way is not just WAY safer than a mamogram  but also detects breast cancer way earlier than a mamogram. Why, then aren't mamograms put aside and thermography used instead? Simple , they cost more. So the industry would rather have women die of breast cancer than spend more on thermography and educating techs to use thermography.
My aunt has breast cancer and she says it is the same with certain body scans which show whether the cancer is likely to spread. This could save millions of lives but insurance doesn't cover it so people don't really know about it or do it. She did it out of pocket. You only have one life, right?

Anyway, sorry to stray off the topic. The nutritionist insisted I keep a journal and do a rotational diet to find out what foods trigger my symptoms. Something that sounds easy but is really hard for someone who is constantly nibbling like I am.
They also had this really cool all glass sauna. We had to take different supplements before (like niacin and organic oils) before the sauna and several ones after. We were given these huge jugs of purified water that was specially brought in in 10 gallon glass and put on coolers. Everything was specialized as to not have any type of allergic reaction for anyone.
After the sauna, we showered and had a detoxing massage.

The main thing of the EHCD was the allergy testing. It was unlike any type of allergy testing they do anywhere else. You had to sit in a room everyday for hours with other patients and the tester. Every 15 minutes he would inject you right under the skin with the allergen. They had everything from mold spores, foods, plants, chemicals , you know it. I think it would have taken months and months to be tested on everything they had. It was injected right under the skin and circled. Then in the 15 minutes they watched you to see what reaction you would have to it. Then they recorder your reaction or lack of it and move to the next agent. It was fascinating to see the reaction of some of the other patients. There was this one woman who a minute after being injected with something, began to cry hysterically. As soon as the tech injected her with anti histimine she just calmed down. Wow, what a reaction! The poor woman was stunned herself. If I remember correctly you couldn't have more than  a certain amount of  allergens injected to you per day because it would over do your system.
After several days and no significant reactions to anything I was injected with, the doctor called me in saying that some of my test results were back. The only really significant thing I remember was that they had found some kind of pesticide in my body that was supposedly not being used here in the U.S. anymore since I was a baby. The only thing we could think of is that it was from the Basmati rice that we Persians eat all the time. The rice is brought in from India and Pakistan and they use different pesticides than we do here. Also, he found something weird in my intestines that he said he would order a vaccine for but that would take several months. So we decided to leave and make an appt for when he said the vaccine would be in (in a few months)
Unfortunately (which seems to be my middle name) when we came back, they told us the vaccine had not arrived yet. But to do further skin testing since I had spent so much money on plane tickets and hotel already. On the 2nd day of skin testing, I got really really sick. The tech really over did the skin testing . An  hour later I was sweating, hot, dizzy and about ready to pass out. I had an appt w/ the doctor, but he didn't show up. I began to throw up and found I had a really high fever. I attributed it to the over testing. It was worse than any flu that I had ever had. It was Friday afternoon so they couldn't see me the next day. My husband decided that we should just drive down to Houston to where he has aunts and uncles. My fever and sickness got so bad that my husband's uncle was insisting I go to the ER. I had such bad experiences there that I refused.
Anyway, the sickness lasted for a week and we had no choice but to go back home. They actually billed us for all the things we didn't get to do cause I got sick and didn't even acknowledge that I may have gotten sick because of too many allergens being put in my body. I called for that vaccine, they told me that I would have to go back because they couldn't find what I was talking about over the phone. So that meant we had to spend a ton of money to fly back from California to Texas to tell the doctor to reorder the vaccine then go home and wait to be told the vaccine was there and then fly to them again???? We weren't made of money. We never went back.  Though I really would have liked to try that vaccine. If nothing else, it may have cured my IBS and I wouldn't have to go through all that.

I had a really good gastroenterologist from UCSF by the name of Dr. Aron, before I switched to stupid old Kaiser. He believed opposite of most fibro specialists, that fibromyalgia results from IBS or other small intestine problems. A lot of people may not know that the small intestine is our main immune system.
I agree with Dr. Aron. I have had digestive problems since I was 15 years old. It  has made my life miserable before the fibro ever did.

Friday, July 29, 2011

Pt. 6 The delivery...This should be the title of the next horror movie.



  (so sorry it took so long for me to continue. I have cervical disc herniation and every once in a while, I over do things and aggravate it. The pain goes down my arms, making it hard to type)

So here is the continuation of the pregnancy & delivery: 


My Ob/gyn made an appointment for the day I would go to the hospital to deliver. Three nights earlier I went into false labor. The three of us, my husband, my 8 year old daughter and myself were awake for hours waiting to see if my water would break as I had contractions. It didn't so we didn't end up going to the hospital that day. 

November 17th 2003 I got up early in the morning, did my hair and make up, dropped off my daughter at her aunts house and drove to the hospital with my husband. I had no signs of dilation.  They started me on an i.v., an anesthesiologist who literally acted like he was the most important man on earth swaggered into my room with a God like attitude, sprawled himself on a chair and told me how lucky I was to have him take care of me. You wouldn't believe the ego on the guy.  Well lets just say he was very wrong. First of all, he couldn't put the epidural needle in. After the first attempt, he complained that  my muscles were too loose and that he couldn't find where the needle was supposed to go. After an agonizing period of time with me and my huge belly bent forward and a few pokes with the giant needle, the epidural was finally in and they began the pitocin in the i.v. to induce labor.
After several hours, still no dilation. They increased the pitocin and waited.

My Ob who had promised to be there for me came in and checked a couple of times during the day. Nothing was happening. They had broken my water and were inducing me but no dilation. I don't remember how many hours passed but the epidural stopped working. I was moving my legs, feeling the pain the pitocin was causing. The doctor said I shouldn't be able to feel my legs but I was. The anesthesiologist said that he'd given me the same amount of medicine they give a woman about to have a c-section. Dr. Bearg said to increase it and left.  Again, I am not sure of the timeline but suddenly and intense headache crept up on me like nothing I had ever felt in my life (now to go back just a second, I had an epidual headache after delivering my first daughter as well. It was so bad I was shaking from it after she was born and they gave me strong meds and the intense headaches continued for a month afterward)  But this was something indescribable!  The closest description I could give is it felt like someone took an ax to my head. I had always thought childbirth was the worst pain (yes they turned off the epidural before my first daughter was born because they thought I had had too much and I felt it all)
No I guess childbirth is not the worst pain in the world. I had curled up into a ball and was holding my head. I told my sister to take my mom  out of the room.  She took her out with a struggle and since it was late, drove my daughter and nieces and nephews home. 
So my husband and sister in law were left in the room. I kept asking for Dr. Bearg. He was nowhere to be found. The headache got so bad that I forgot all about labor pains (as the epidural was not doing anything but splitting my head open) I began to cry. ... you all don't know me but I am normally a very quiet person. It's hard to tell I am in pain. This pain was out of this world. I began to cry asking to be put out of my misery. I was begging for someone to kill me. It would get so intense that I would scream.
So much for Dr. Beargs promise of a smooth painless delivery. A nurse came in and tried to give me morphine. I screamed no at her and that I wanted Dr. Bearg!  I was way beyond the walls of my demure polite self. The nurse was pissed off. Instead of trying to sooth me she retorted, "The pain must not be that bad if you are refusing drugs!" I just wanted my doctor to see what was happening. Drugs had done this to me . What was going to happen to my baby with more drugs? My husband (wimps that many men are) couldn't take the sight of my agony any longer and fled the room. I was left with my brave soul of a sister in law to soothe me. The screams of sheer agony kept coming. Somewhere in the back of my tortured mind I thought 'was I disrupting the whole hospital?' 

Finally Dr. Bearg appeared. I think it was around 11 or 11:30 pm  by then. I never raise my voice to anyone besides close family members. But as soon as I looked at him I cried, "Where were you? You promised not to leave me! They are killing me!" Or something of that nature.  He told me I needed to push now. I couldn't comply. The pain in my head was ripping my skull apart! Finally he sat down in front of me and yanked at my legs saying"This baby is coming NOW! " He uncurled me from my fetal position and finally came the baby, all I could feel was my head.  I think my mom came back in the room because I remember her slapping her hands to her face when she saw the baby.

The baby wasn't breathing. There was a team of doctors standing by with their incubator bed thingy. They took her and worked on her. I was immediately given a strong narcotic to shut me up.  They got her breathing and cleaned up. I watched half consciously as she was given to either my sister in law or husband. Even through that state I had to hold her and feebly held out my arms. She was perfect. My perfect little miracle that had survived this ordeal.

I tried to nurse her but every time I did, I would have these horrible after pains that felt exactly like contractions (I didn't experience this with my first daughter)
Also, I had very severe headaches on and off for over a month after the birth.

My sister in law later told me that she went home that night and told her girls that they better not want her in the delivery room when they have kids. That she didn't think she could ever go through another delivery after what she had had to experience that night.

The next week I had a visit w/ my OB, Dr. Bearg and took Sasha with me for him to see. I told him what my primary care dr. had told me  when I was 4 months pregnant...to abort. He said to me, "Well now that it's over I'll tell you I never said it but thought the same things many times during the course of your pregnancy. I've been delivering babies for over 25 years and I have never had an experience like this. This IS your last baby, ok?"
I assured him that we would not be crazy enough to try for another one again (in fact my husband got a vasectomy the very next month)
A month later I visited Dr. Bearg. He was haggard and as soon as he saw me he said something like " Would you complain about me or do you blame me for what happened at the hospital?" They had taken him and the anesthesiologist in front of the board council and the anesthesiologist had been banned from performing epidurals on pregnant woman again. I was shocked since I had not voiced any complaint. My baby and I were safe and alive that is all that mattered to me. I told him. But a voice inside me told me that it was his fault that the anesthesiologist had upped the dose so much and it was his fault that he was gone for so many hours and didn't monitor what happened to me. 

I had heard of another woman who went through something similar with the epidural going wrong as I did. She had a stroke and went into a coma.
                                                               ...........................................................................

Tuesday, July 12, 2011

Pt. 5 My 2nd pregnancy, horror story with a happy ending.

As I left off in the last post, at age 34 I realized that if I was going to have another child, I'd better do it. I had kept waiting for this 'thing' that had taken over my body to go away but it didn't, so it was time to stop letting it dictate my life.  Maybe it would have been a good idea to go through the guaifenesin protocol before getting pregnant but it didn't happen that way.  Also, I had no idea that I would go through this hell that I did with this pregnancy and that the doctors would pump me so full of drugs. Drugs that they said were relatively safe on the physical formation of the fetus but after giving birth I found out from my ob/gyn that they knew almost NOTHING on how any of these drugs could mentally affect the brain or  do any damage to the baby!!!!

So in March of 2003 I got pregnant again. The first 2 weeks were ok. Then I had some fish at a family gathering and I woke up the next morning feeling like death. This lead to constant visits to the ER... I was nauseous and my stomach was in excruciating pain. I wish soooo soooo much that I had just insisted that they give me some antibiotics then so I didn't go through months of agony, and more importantly wasn't given so many drugs that may have affected my child.  Every time I went to the ER, they injected me with morphine, zofran and many other drugs. I insisted on an endoscopy, thinking like my last pregnancy, I may have h. pylori. Unfortunately, I was hooked up with a very unsympathetic doctor who was I guess too busy to even have a consultation with me prior to the procedure. I was scheduled for the endoscopy and the h. pylori test was negative. The doctor wasn't willing to even sit down with me to discuss anything after the procedure either.  I know, I think many people just become doctors for either the prestige or the money and nothing else.

I  was pretty much in the ER every other day. I had extreme pain and morning sickness 24/7 by the end of my 2nd month, I could not eat or drink much. My doctor got so concerned with my weight loss (I had lost about 15lb and I was under 100lbs now), he suggested a picc line be put in my arm- a long catheter inserted into a vein in my arm that went all the way to the top of my heart and provided nutrition.  (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter)

The insertion did not go well (of course.) The tech who was trying to insert the picc line spent over an hour putting me through hell while I was already in excruciating pain and nauseous too. The vein kept 'running away' from the needle  and in the end he was exhausted and had made a major hole in my arm without putting the catheter in. They had to make an appointment for it to be done in the OR. Now for some reason they gave me fentanyl  (again, no idea of any neg effects on the baby) All that did was make me loopy and talk way too much during the procedure. Other than that, I felt the pain and was very aware that they put this thick painful tube in my arm and pushed it all the way to my heart.
So the picc line was in and every few  days a nurse would come home and deliver new bags of liquid nutrition (that smelled nasty) and clean and check the line and added anti nausea meds to it (Zofran). Yes I had to walk around with the bag of liquid ... but since I was sooo ill, I just went from one room to another or to the ER and nowhere else anyway.

I still went to the ER, yes. The picc line was delivering nutrients but the extreme stomach pain and nausea were still there 24/7. Now the thing at the ER is, if anyone who's ever been there noticed, that the nurses do not put gloves on to keep you safe and sanitary. They do it only for themselves. The ER is THE place to go if you want to get some weird illness. The nurse would put gloves on his or her hands then touch everything around the room (including places you knew didn't get cleaned very often, if ever) then they would touch me!!!!!!!! I know I should protest, my life and health is on the line, but I could never muster up the courage to tell them; "Please put on new gloves before you touch me."
So of course 3 weeks into the picc line, I got really sick (or should I say sicker?) I felt feverish and at first didn't want to go back to the ER. But then I gave in. Good thing I did, if I had waited any longer, I probably would be dead.

So at the ER, they saw that I had some kind of infection going on. They assumed it was a bladder infection, even though I told them I had no symptoms of that. Since I was pregnant, they told me that they weren't equipped to deal with having to admit me if needed so we had to drive 15 miles to another hospital that was (in the condition I was in that seemed like hours.)

Once there, they were  horrible in the ER. They told me that they had to extract urine through a catheter to see if I really had a bladder infection. I was in pain, with a high fever.  They held my arms and legs and yelled at me to be quiet as they forced in the catheter. After that torture, I pretty much passed out and a while later found that my blood had become infected due to the picc line.....(remember the nurses who touched everything then me?) And that if my condition had gone untreated for any longer the infection would reach my heart and kill me.

So, I was admitted into the maternity ward and an antibiotic i.v. was started. Things didn't get any easier. For some reason, my veins would not tolerate the i.v. and would burst . So the i.v would infiltrate and  my skin would swell up full of the i.v. fluid. They kept having to change to a different vein.

 After I had been there 4 days, they came to me and said that I wasn't even supposed to be in the maternity ward  because you were only allowed to stay there if you were in your 3rd trimester. I was in my 2nd. So they said they would move me to the surgery ward.  That isn't what happened though. I thought I was moved to the surgery   department. Later in the day that I was moved, I heard crying and moaning. They encouraged me to walk when I could during the day. The sight that hit me that day when I took a walk in the new department I was in made me shake and start crying.  Each room I passed had a very ill looking patient in it, many with their heads covered, many moaning in pain. I was in the cancer ward.
Now I was in pain, my arms were all swollen from the i.v. infiltration, I was depressed and worried. They had moved an ill, over emotional pregnant woman with her hormones all over the place to the most sad and depressing ward of the hospital. I went to my room and began to cry in earnest for myself and for all those people waiting to die in their rooms.

Now if this wasn't enough, my primary care doctor (not my ob) called my husband at that very  time that I was crying and told him that I should consider aborting the baby because it seemed like it was getting too dangerous for me. My husband didn't even stop to think about the emotional state I was in.... he hung up the phone and told me what the doctor had said. Wow, you should have seen me then. I just totally fell apart. This was my 4th day in the hospital and by now not only my arms were swollen but they had moved to the veins in my legs which the i.v. had also infiltrated. My arms and legs literally looked like that of a pigs, all swollen with liquid.  I started yelling at my husband "Why did you even repeat what that idiot said? My Ob didn't make such an assessment! I have gone through 4 months of sheer tortuous hell to now go abort this baby ???? No way!"

I wanted to go home so bad. The fever had broken and the stomach pain had miraculously  all but disappeared with the use of the antibiotics!!!!! I was depressed and a complete emotional mess. On the 5th day the nurse  came in  in the morning and saw that the last vein they could use on my legs was also infiltrated and had swollen up like a balloon. She said they had no choice but to use a vein in my neck next! Up 'till now I had not complained about anything but I said no to sticking needles in my neck. I couldn't take anymore of this. I asked if I could take the remaining antibiotics by mouth at home. She said no, I asked to speak to the doctor. So finally when the doctor came to see me, I broke down and told him what my primary had said about aborting, told him I couldn't believe they brought me to the cancer ward instead of surgery and told him I couldn't tolerate another needle especially in my neck. He agreed to send me home with oral antibiotics for the next 5 days. I was so outta there!

After the antibiotics, my nausea, and intense stomach pain were gone! I began to feel relatively human again. I had really bad back pain and the extreme loose joints from the relaxin hormone released during pregnancy, but that was nothing compared to what I'd been suffering before. I didn't know this back then but when you have fibromyalgia, pregnancy makes you even more loose and wobbly than a normal pregnant woman.  When I went into my 3rd trimester, the sciatica began (I had it with my first pregnancy at age 26 as well, even though I didn't really have fibro back then)

So, my Ob worked within a team of doctors. If I went into labor a night my doctor was not on call, another doctor would deliver my baby. I wanted Dr. Bearg. So he promised me since I had such a nightmare of a pregnancy, he would induce me on a night he was there and get me an epidural and make sure the delivery at least was a smooth one. No such luck for Sheri.

---I'm going to stop here for now. I think I've written a lot in this post and with much more detail than my last ones and bored some of you. Please come back in a few days to read the rest. Again, I would love any comments or input.

Tuesday, June 28, 2011

Pt 4. The earlier years cont'd.

Yes, I know... I've been lazy and not written for 2 weeks. Kids are out of school which makes life hectic.
Anyway back to my story.  About 2 years into the start of my getting sick, (about 9 years ago) I read the book 'What Your Doctor May Not Tell You  About Fibromyalgia' by Dr. St. Amand. We just moved to Marin County in Northern California after a year in Laguna Hills, Orange County for that horrible dreaded year.Keep in mind that back then, the majority of people had never heard of fibro and I went through the stupid questions and comments from people like "You're still sick?" or "Just get up and go out, you will feel better." and dozens of similar comments that just make you want to smash your (or their) head against the wall.
I felt so so alone and misunderstood. When I read this book, I was in tears as I flipped pages. I felt as if it was written about me, perfectly describing things that seemed impossible to describe. Describing my symptoms and telling me I'm not alone. It made me feel as if I wasn't losing my mind with these crazy out of control symptoms.
Back then I was practically in my sick bed 75% of the time.   We bought a brand new condo, temporarily until we figured out what house we wanted. Again, back then I didn't know what havoc new carpet and paint did to my system.
So anyway, I really recommend anyone read Dr. St Amand's book. It's really theraputic and well written. Basically he is the one that started the Guaifenisin Protocol. He believes Guaifenesin clears out the body and helps with fibro pain. I haven't read it in years so my fibro fog prevents me from giving details.
 I was so inspired when I read his book that I made an appointment to go see him about 7 or 8 months later.  He has an office in the L.A. area. He is such a sweet and gentle doctor (opposite of his quite curt assistant.)  He felt the muscles on my legs and arms and told me I was full of little bumps in my muscles (it is better described here in this article http://www.fibrotalk.com/forum/viewtopic.php?f=23&t=1479.)  And prescribed guaifenesin for me.
Now at this same time, I had decided to try for another baby. My first daughter was 8 years old  and this damned illness had kept me from even thinking about having another baby. At this time we bought a house in Novato.Believe it or not, some crazy person had put carpet in the kitchen  besides the rest of the house. So this time we didn't replace the carpets with new ones. We tore them out and replaced them with hardwood floors and stone floors. We repainted the house with low or non V.O.C. paints.   The constant bombardment of horrible symptoms seemed to slow down a pace. So I thought to myself, this disease, whatever it is has controlled me for the last 3 years. If I want a baby, I have to make it happen. Take control and do it.
Dr. St. Amand when hearing this, told me to hold off. Do the guaifenesin protocol and then when I am better, get pregnant. He was too late though. When I got home, I found I was already pregnant and couldn't take the guai.
Now my pregnancy deserves an entire chapter in itself and takes a lot of energy to write. So I will leave you all here for now.
Please leave any thoughts or comments.

Friday, June 10, 2011

pt3. The weird symptoms, a little more explanation on how it started.

Other than the usual fibro symptoms I had symptoms that are now sometimes associated with fibromyalgia but not so much back then. When my symptoms get really bad everything smells more intense. I cannot stand the smell of perfumes and cleaning products. Sounds, especially repeated sounds or mixed sounds (ie several people talking, music and speaking or tv altoghether) really bother me.  All sounds seem louder. My skin becomes itchy and sometimes breaks out into a strange rash. I get an intense burning sensation in my muscles. I get so cold that nothing but standing under a really hot shower will warm me up, although I usually feel totally wiped out when I get out of the shower instead of feeling refreshed. I get these weird twitches under my skin on my ribs like some tiny parasite is crawling under my skin! I sometimes get short of breath, as if an elephant is sitting on my chest. My temper is of course shorter (whose wouldn't be when you are going through so much crap with all these syptoms?) In the first 5 years I would get this overload of symptoms more often. Now I usually don't get them all together that often.
Over the last few weeks I've had a lot of different feedback from all of you reading this blog (thank you, I really really like hearing from you, especially if you have some similar story or  even  if you just want to tell me part of your own experience) So I had a few questions and points come up so I'm going to go back to page one and elaborate on some things.
My digestive problems that started when I was 15 came on with upper g.i. pain. My doctor did an endoscopy and said I had a healing duodenal ulcer. Yup, only 15.  I constantly had  stomach pain, bloating and all the typical IBS symptoms. I could never figure out what foods made it better or worse. I envy people who say that they are intolerant to this or that foods. At least they know what they are allergic or sensitive to and to avoid that. Not knowing sucks! I eat certain foods one day and I'm fine. I'll eat the same things another time and I feel miserable.
The only things I've been able to find is that I am very sensitive to foods that aren't totally fresh. You know how some people leave food instead of refrigerating it fast.  I get food poisoning really quickly. It makes going to restaurants and traveling really risky.
I'm stubborn though. I love restaurants. I know, bad girl. But my pleasures in life are so few and in between with this illness.
Going overseas to Iran always gives me terrible food poisoning. EVERY time. None of my family go through that. I don't understand it. So even though I would love to go there to visit family more often, I do not go more than once or twice a decade.
I'm going to stop here tonight.
(next: Dr. St. Amand,  2nd baby, Dr. Holtorf etc...)

Wednesday, May 18, 2011

History of my illness pt 2, the diagnosis

So after I changed that horrible doctor and got off all their drugs, things got a bit less intense. I wasn't in and out of the ER all the time. But I was still very very ill with bizarre symptoms that no one could understand including intense all over pain. My arms constantly felt like they were coming off.  I was dizzy, severe headaches, felt short of breath, zero energy, nausea etc, etc....
I went to one specialist, holistic practitioner  or another and none of them could figure out the problem. I just had too many symptoms for them to make heads or tails of it.  A friend of ours was a sales person of the company Usana which is a high end vitamin/ supplement company. They were affiliated with a place in  Baja California called Sanoviv (http://sanoviv.com/about-sanoviv/index.html).     It is a cutting edge medical institute that back then had just opened up. They concentrate on nutrition, detoxification and an integrative testing, diagnostics and treatments in a paradise like setting. It was extremely expensive and luxurious. For 2 weeks we were given  raw vegetables to eat, did breathing exercises, stretching, massage, blood tests as well as tests that aren't available in the U.S. with cutting edge equipment from Europe (mostly Germany.)  They also took out the amalgams in my teeth and replaced them with composite fillings. But after 2 weeks they found nothing other than my blood being too sticky. (they were actually on the wrong track because my new doctor had thought I had porphyria  and that was the angle they were  looking at. Another dead end) Even though I went home with no answers, some of the detoxification treatments as well as the diet did help somewhat. A couple weeks after I went home I did start feeling a whole lot better but still no answers, still very sick even if not that sick. Also the things I learned in their nutrition classes were so advanced and dead on. I constantly read new articles on nutrition, supplements, and other natural remedies that I had already heard of in Sanoviv.

We decided that Southern California wasn't for us and packed up and moved the family back up to Northern Cali (Marin County.) I don't think I mentioned that my daughter was 3 when I got really sick. It was so hard on the poor thing not having her mother 'present' in those developing years. It was miserable not being able to be part of her day to day life. So she was 4 1/2 when we moved to Marin. The doctors here are soooo different than Orange County. They listen, show interest (well, they used to.) Anyway I found  a new primary care physician who was a very dear and caring man . He was my doctor for 6 years before he retired. He really tried to figure out what was wrong with me. My tests were always perfect. I went to a rheumatologist a year after we moved here and after 10 minutes he diagnosed me with fibromyalgia.  My primary doctor didn't buy it though. He said he had a lot of fibro patients and none of them had the extreme and extensive symptoms I had. Hmm....
Even so, I felt like a weight had been lifted off my shoulders after the diagnosis. I wasn't crazy, I wasn't dying of some mysterious disease, I had something to say to people who just thought I was lazy and there was nothing wrong with me. I had something to tell people who asked what was wrong. A  lot has changed since I was diagnosed 10 years ago. Back then practically nobody knew what fibromyalgia or chronic fatigue was. I had to spend so much time explaining to each person what it was. The rheumatologist , Dr. Davidson, who had diagnosed me  suggested nothing but pain medications and more  ssri's (NO THANK YOU!)

I did a lot of research and found this doctor in Dallas.  http://www.ehcd.com/   Dr Rea of the Environmental Health Center in Dallas. This guy is so famous that people travel from all over the world to see him.  His specialty is in environmental sensitivities of all kinds. Anyway we went there twice. He couldn't find any food or environmental allergies. He did find some weird digestive stuff and also an overload of a pesticide. I was supposed to go back for a 3rd time but it had gotten soooo expensive, I regret to say I didn't go back.  This pattern, unfortunately is one I kept repeating. Going to a doctor a few times and then giving up on them. You never get anywhere by not continuing, not following through. I don't know why I did that. I guess I was looking for someone who looked me in the eyes and said "This is what is wrong with you, and this is how we can fix it." I was in lala land I guess, looking for that 'cure'.....oh well, (in a whisper) I still am looking for that miracle. Someone somewhere will have an answer. It won't be easy as 1-2-3 but I have to stick with some protocol and it will work! 



Tuesday, May 17, 2011

History of my illness pt 1, before fibromyalgia diagnosis. Sorry if it's too long!

I'm not quite sure when it really began, why but it all seemed to come together gradually then hit me like a brick wall!
To go way back, I developed digestive system problems at age 15 due to stress . I was later diagnosed with IBS (another disorder that is just a name for a bunch of symptoms they cannot  or don't want to understand causes for) I suffered on and off through the years with the symptoms of this condition. If you ask me, my digestive system is the main culprit for all my later disorders.
Then  17 years ago, right before I got married I got this odd flu like thing that came with a fever and lasted a while. I went to the doctor and she said it was something that seemed like strep but wasn't strep. I started feeling tired. I was 25. The fatigue came and went.
That same year after the wedding, I got accidentally pregnant.  We had only been married 2 months and I was still in school. We weren't ready for kids yet. So I got an abortion. After that I started having pelvic pain.  The ob/gyn  'tried' to do a laparoscopy but said she couldn't get in through the navel because of adhesions! Never figured out the cause of any of that.
Age 26 I got pregnant (this time on purpose) The pregnancy was terrible. I developed a bacterial infection in my stomach that went undiagnosed for 4 months until I changed my gastroenterologist.  I went through 4 months of misery and rushes to the er and lost 10 lbs until a new gastro did  a sedated endoscopy and biopsy and found H.Pylori. A round of antibiotics and I felt better and was able to eat again. Unfortunately 2 months later I developed severe sciatica down both legs! I didn't know back then that something wasn't right in my body. I felt more wobbly than most pregnant women. During my last trimester, I felt like my legs were coming unhinged from my body.  Much later I found out that fibromyalgia sufferers get overly loose when pregnant.
During delivery, I was given an epidural early. Hours later, I wasn't dilating even with Pitocin.
Anyway, just as the doc came to say it was too late and I had to have a c-section, I had dilated but she said I had too much of the epidural meds and when it came to pushing, it was turned off!!! As soon as my daughter was born (healthy as soon as they got her breathing) I began to shake with an unbelievable post epidural headache. These headaches came and went for the next month. The lower back pain never went away.
At age 29 we decided (bad decision) to move from Menlo Park, where I grew up to Southern California (Orange County) to get more bang for our buck. The move was extremely stressful for many reasons that I won't get into. Once we bought a home down there (my husband didn't move his business down for another month or two) I set on  hiring painters to repaint the whole house and recarpet the entire upstairs (I had no idea what a health hazard new carpets were.)
As soon as my husband moved down, we dropped everything and went overseas to visit my husband's family (meeting most of them for the first time) another stressful event. Every time I went to that country, I would get the worse food poisoning. No one else had this problem.  So a doctor I went to overseas gave me amitriptyline (Elavil) for intestinal spasms. I didn't take it there but took it a few days after I got back home because I wasn't feeling too well.
  I don't know if it was just the amitriptyline, but I think it was  a combination of that, the fresh paint and carpet, the stress from moving and then spending 2.5 stressful months with the in-laws plus whatever was going on inside my body already that triggered it all. Unfortunately, I didn't know any of this back then (11.5 years ago.) Back then, I knew nothing about health I know now except for some stomach remedies. I trusted doctors and did not rebel against their God complexes. Anyway, I took the Elavil and woke up early next morning feeling like I was having a heart attack. My heart was racing, I felt I couldn't breathe, I was nauseous etc... My husband took me to this new primary care doctor I had signed up for (I had never met her 'til that day)
This woman took one look at me and without any tests or anything, she told me I had Panic Disorder!!!!! She told me she had it when she was in med school and this was exactly how she felt (projecting is what she was doing, something doctors are strictly not supposed to do.) I had no idea what that was back then but I tried to tell her that  I didn't feel like I was panicked  or anything like that. But she waved aside what I had to say brought me an armload of Zoloft samples, told me to start taking them and that I would feel better in several weeks!!!!!!
Naive as my husband and I were back then, I went home and started the Zoloft. I was in the ER the next day feeling as if I was dying! This is when the vicious cycle began. With one very very bad doctor who truly deserves to have her licence taken away (to this day, I regret not confronting her.) My trip through hell began. I kept going back to this horrible doctor and making her give me all sorts of blood tests (which were and still are always normal.) Luckily I had a PPO back then so I didn't need her referral to go to any specialists. So I went to every one I could find. Unfortunately, they all took one look at the stupid primary dr.'s notes and once they saw the idiotic diagnosis "panic disorder" they would look at me like I was some dumb hypochondriac and not take me seriously.  They  didn't want to listen to a thing I had to say even though I told them that I didn't have any of the psychological feelings that a panic disorder patient did. The only thing that was depressing me was the constant illness and not knowing what was wrong with me.  I only met 2 intelligent doctors. One was a neurologist that did every test on me including a spinal tap (which gave me horrible headaches for 2 months), Nerve Conduction Studies , and the worst most painful one, needle EMG  where a thin long needle is pushed into different muscles and electrical shocks are given. My husband had to leave the room when I was going through this because he couldn't handle watching it!  All the tests were normal. She told me she didn't think I had panic disorder either but something else.  I told the idiot pcp , she  unprofessionally called the neurologist a Nazi! The other only intelligent specialist  I went to was an immunologist, who I wish so much now I had paid more attention to and gone back to. He did some blood tests and told me that I did NOT have panic disorder but high titers in cytomegalovirus epstein barr virus . This immunologist told me nearly 12 years ago that I had Chronic Fatigue Syndrome.!!
The idiot pcp said that he was a foolish old man who didn't know what he was talking about and that I had to stop looking for different answers and accept I had panic disorder and take the drugs!!! I was put on one SSRI anti depressant after another. There was one by the name of Remeron that was the worst. It made me hallucinate, it made sounds and lights distorted. It's hard to explain how horrible it was.  I was in and out of the ER about 2 times a week. Unlike Marin County, where I live now, the doctors in Laguna Hills were not that great and the ER even worse. Every time my poor husband drove me there and they wheel chaired me to the bed (I couldn't walk, I was soooo sooo sick) I heard them loudly making fun of me that "she's back.... give her her shot of valium and send her home...snicker snicker." I went down to 96 lbs, I couldn't eat, I couldn't sleep, I had constant diarrhea, heart palpitations, feeling that my skin was coming off, muscle pains, headaches, and so so much more.  I had no idea that the antidepressants were doing this to me. Slowly poisoning me to death. It got to a point where my husband told the staff in the ER that they had to admit me and do some  other testing.  My body was failing yet my blood tests (at least the basic ones they did) all were normal.  Someone came to visit me in the hospital and asked me all sorts of mental health questions. One question was, 'How are you feeling?' my answer was immediate 'I feel like I am dying.'   I later got a copy of that report. They had left out one crucial word in that sentence, changing the meaning from me feeling so sick that I felt I was going to die to me being suicidal! The report said 'Patient feels like dying'  I said "feel like I AM dying"  not 'feel like dying!!!"  Big difference. I was now seeing a psychiatrist recommended by the idiot doctor, he was basically a drug pimp who thought I was suicidal!!!.  My idiot pcp told me she wanted to admit me into the mental hospital where she worked with many mental patients. By then she had semi brainwashed and worn me down into thinking maybe she was right and I was losing my mind and had to accept it.  Thank God for 2 things or else I probably would not be alive right now. One, the mental hospital didn't take my insurance and two, my father insisted I did not have a mental health problem and that I HAD to change my doctor! I listened to him, bless his heart.
After 6 months of this torture, I finally found a new doctor. One that was a pcp but was also open to complimentary medicine. He didn't figure out what was wrong with me but told me that had I stayed with that doctor and kept taking all the meds she and her cohorts were dishing out to me, I would  have died soon. I tried so many other things too. I tried everything anyone recommended. I had this woman come to our house that cleansed energy. She was a joke. She made me actually feel worse because she kept waving her hands around me and then spraying her hand with alcohol so her hand wouldn't absorb the bad energy :-P... I was desperate so I tried all suggestions. I went to a hypnotherapist. I was so ill that he couldn't get me calm enough to try to hypnotize me. He gave up after a half an hour. I went to a naturopathic doctor. He said he had never seen anyone like me and didn't know what to make of me. You have to understand that back then, my symptoms were so severe, they were off the charts. I could barely sit still in a chair, I was so sick.
Then there was Sanoviv. But I will stop here and continue this long story in my next post.
It's 4:40 am and I should get some sleep.

(next: Sanoviv, our move to Marin County, and my diagnosis)