_BOB’s Story
(Please note that Book Pictures are linked to www.Amazon.com, click them to go there)
I’ve battled with several ‘syndromes’ and other tough to cure illnesses over the past 15 years. Many of the syndromes were a) hard to diagnose and b) even harder to treat. I’ve gone through years of suffering with Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS), A distended bladder combined with insomnia, headaches, Leaky Gut Syndrome, tonsillitis, depression, etc.
I could write a full book on all the doctors that I’ve visited and all the prescriptions that I’ve taken, but I want to keep this as short as possible. I remember reading the title of a book, ‘Sick and Tired of Feeling Sick and Tired’ that would describe exactly how I felt a few years into what I now know to be CFS, IBS and a distended bladder. I remember reading about people who had suffered with CFS and who were now feeling better and thinking – there is no way that I am going to get over this. I am not going to feel better. I may as well kill myself now. I cried myself to bed many a night wondering ‘why me?’ Thankfully I had the love of a strong family and just that thought alone prevented me from taking thoughts of offing myself any further than just thinking about it.
OK – the short of it is that I got sick a lot growing up. Seemed like I had Strep throat or bronchitis once a month. Unfortunately I also had a doctor who loved antibiotics. You may even need antis for certain ailments like Strep (unless you have a strong background in Natural Healing) but I have faint recollection of going for a check up and walking out with a shot of penicillin! Shots, pills, that great tasting pink antibiotic – I was always on one or the other. It is only now that I can hypothesize that that was a major contributor to my later suffering.
It was November 1987 when I first developed the symptoms that combined to form my CFS. I came down with the ‘flu’ the first week of November – exactly one week before my family and I were heading to Florida for a week of fun in the sun. I was actually happy to be sick because I knew that I’d take some anti-biotic and that I’d be great to go to Florida. Unfortunately that didn’t work out so well. I got the anti-biotic but the ‘flu’ was still there one week later. It was still there 2 months later. It was still there 2 years later. Remnants of it were still around 15 years later.
I won’t mention every doctor that I went to looking for a diagnosis. I also will leave out the tedious details of the trek as much as possible. For what it’s worth – I wound up at an internist a bit past Christmas – no fever, all blood work normal. Put me on Pamelor because it had to be depression – after all I was negative for EBV and Lyme.
I felt like I had the flu every single day for the next 2 years. Weakness permeated everything. It wasn’t tiredness, where one needed to sleep, it was ‘sapped’ weakness, the kind you get with the flu. Missed lots of school and had to get a tutor. I then developed burning urination. Severe burning and an aching in my bladder area. My urine was clear but I wound up on Cipro ‘Just in case’. The first of many that my urologist prescribed. Antis and sulfas. Over and over again – adding to my systems already torn down condition. At age 18 I had had my prostate examined more times that I should have had to endure in a lifetime! And the only thing that brought relief was a numbing med, Pyridium Plus, that dyed your urine red.
I continued seeking all kinds of doctors to try and track down why I felt weak all the time. Internists, allergists (did test positive for several allergies and started on allergy shots and medications), endocrinologists. Everything came back fine. Even saw a counselor and went through Prozac, amitryptiline, etc etc etc. I knew it wasn’t depression causing me to feel like crap. It was feeling like crap making me depressed! But the docs just didn’t get it – all those different anti-depressants not doing squat logically meant that depression wasn’t my issue, but sometimes logic and medical just don’t mix. As a matter of fact the only thing that ever came back ‘out of range’ was my temperature. I was always running low, 97.5 or so, but that never concerned anyone.
I headed to Johns Hopkins to see the best of the best. I waited 2 months for the appointment and then 8 hours in the office. My dad took off from work and drove me down. We met with a doc for about 45 minutes who thought that I may have had meningitis back in November and that I was probably suffering from a post viral syndrome that would correct itself by the prom in May. It didn’t.
So – still trotting along with no diagnosis, feeling like crap, and with no answers whatsoever, my urologist performed a prostate biopsy and it came up clear. I don’t need to emphasize that an 18 year old getting a needle anywhere near the prostate is not all that pleasant. He did find a varicose vein ‘in that area’ that he wanted to remove. I went under the knife and had the varicocele taken out. The burning did not subside. After we came up empty with this expedition I had no clue where to turn next.
A few months went by. Basically spending all day in my home, every minute of which I felt weak. Every minute – not one day passed that I didn’t feel crappy. Weakness and frequent burning urination. What a pair!
It was a few months after the prostate biopsy that someone recommended a urologist a few towns over. We set up an appointment and my father and I headed over. He did a basic urological exam and tested urine. He then said, “It’s not your prostate. You have a distended bladder.” He prescribed the high blood pressure medication Hytrin to relax the bladder. I picked it up that night and started it the next day.
My burning urination started to fade. I couldn’t believe that this doctor was able to find in 2 minutes what my first doctor was unable to find in 2 years and with several thousand dollars worth of tests as well as a surgery ‘under my belt’. My burning was completely gone within 2 weeks. This was my first miracle.
I was now into my second year of weakness. I tried to call on the knowledge that the burning was cured after a long hard road – so possibly could everything else. But it was tough. Depression was also growing. Sick and tired, sick and tired…….
I wound up at an Ear, Nose and Throat specialist. Surprise surprise, I had a deviated septum that was causing sinus infections. Surgery. The most painful surgery I have ever undergone to date (and I’ve had a hernia as well as a second and third sinus surgery). The septum was rebroken and reset. Within three months it had begun to pull back ‘out of place’. The surgery didn’t take. I later found out that this locally famous doctor had been suspended for crack use. What a joke.
Found myself at a second ENT. Guess what? I had chronic tonsillitis and they had to come out. I was hoping that this chronic infection was the cause of all my suffering – the Merck Manual’s list of symptoms absolutely mirrored my own. I had the tonsils out (something I now regret but who knew) and after 3 weeks of pain – no relief. Well, that’s not completely true. I started to get far less sore throats and I did have a day or two in a few months where my weakness subsided. I actually knew what it felt like to feel good again. The only problem was that the day or two that I started to feel better actually served as a horrible ‘tease’ as I would slip back into weakness. I would have a day or two of relief and then weeks of relapse.
My ENT saw me a few times for subsequent sinus infections. He wanted to go in there now and clear out my passages as well as take a shot at the septum. Sure! Why not?
He did the surgery and on my one week follow up he said that scar tissue was forming. He shoved a needle into my nose and numbed it up. He then stitched plastic into both my nostrils to keep the scar tissue from being able to join together. I later found out that most surgeons do this while you are in surgery! 2 days after this rather pleasant experience I cut the stitches out myself and removed the plastic. It was driving me nuts. I never went back to him.
The Hytrin was still doing its thing but as with all meds I did develop side effects. My mouth was constantly dry. I had odd nightmares. (Later research through the Life Extension Foundation (www.LEF.org) revealed that it could affect melatonin and other brain chemicals so I started taking it at night instead of in the A.M. as it is normally directed. This helped with the nightmares.) I also had this enjoyable urge to faint when I got up quickly. Once I even fell through a glass coffee table after getting up from reading the comics…Joy Joy.
I went to see a local internist. I was now approaching 3 years of sickness. . He diagnosed me with CFS. Finally. I felt a little better just hearing that. I had a name for this demon. I also underwent a scope because I had now been experiencing severe stomach pains and bouts of diarrhea over the last year. He diagnosed my IBS. A second prescription med, Bentyl, was added. It also worked well. My stomach pains subsided. However the thought of being 20 years old and taking two prescription meds with their side effects (I was chewing Advil to fight off almost daily headaches) didn’t sit well. And I still was weak 90% of my days. I knew that I had to do something myself. But I also was lucky to have this guy as my doctor. He put names on 2 things that no one else could. Plus he recommended that after I used the Bentyl for a few weeks to get through the current acute stage that I try taking Metamucil at night. People mistakenly think that Metamucil is a laxative. It is not. It is a bulking agent. Fiber. It binds water together with the fiber which means paradoxically it can help with constipation AND diarrhea.
I used Bentyl for two weeks and then switched to Metamucil. It worked. My IBS was lessened tremendously, probably around 80%. Most importantly the pain was really lessened and inadvertently my doctor had turned me on to Natural Healing. If a simple product containing psyllium could almost cure something as well as a drug could – what else was out there?
I won’t go through every single thing that I researched or every single product or technique that I tried. I probably couldn’t remember them anyway – even with the Ginkgo that I take…but I will touch on some of them.
I did a lot of research on CFS. Theories of the cause of this syndrome changed a lot. Blood pressure abnormality (I had a tilt table test and tried the drug Florinef. I increased my water and salt intake too, but it didn’t help), viruses, brain stem issues. Nothing I tried helped very much. I had read Durk Pearson and Sandy Shaw’s book ‘Life Extensions’ a few years back and that drew me to nutrition. I read and reread that book. I wore the cover off and had to track down a second copy at a used bookstore. I tried Hydergine, but it did not help. But because of that book I found myself searching for the Life Extension Foundation on the Internet. I joined their buyers club and started to get their excellent magazine. Here is what I have done directly because of Durk and Sandy:
I used L-Tryptophan while it was still available. This was before its use was completely banned after one (yes one) batch of it was contaminated in a Japanese factory. People died because of the contamination but the FDA blamed the Tryptophan and banned it. Very very odd how this natural amino acid, a natural anti-depressant and sleep aid, was banned exactly one week before Prozac hit the market. The FDA still hasn’t provided a good answer as to why it is still banned today. L-Tryptophan worked pretty well for my insomnia. 2 grams before bed allowed me to get some sleep. And having some quality sleep helped me stretch some of my good periods into 4-5 days. I would feel good for 4-5 days before relapsing into weakness for a month or two at a time. Still this pattern was much better than the 2 years of complete weakness that I had gone through a few years back.
I also started to take the Life Extension mix. It is a very high dose multi-vitamin type supplement. It didn’t seem to add any additional good periods. I was also trying other nutritional products – vitamins, minerals, Ginseng, Co-Enzyme Q10, DHEA, etc, but nothing gave me any further spark. Then the Foundation did an article on Saw Palmetto for urinary health. My father and I started taking a Saw Palmetto/Nettles gel cap. I weaned off of Hytrin after a week or two. The dry mouth and fainting stopped. The burning urination never returned. It’s now been approximately 10 years that I’ve been off of Hytrin and the only time I’ve had a flare up has been if I get lazy taking Life Extension’s Prostate Formula. Score two for simple, natural, and inexpensive remedies.
During the next year I tried acupuncture (liked it but wasn’t a cure – I did find it very relaxing and would give it a shot for pain, etc in the future), hypnosis, self-hypnosis. I also tried all vegetarian diets but they didn’t work out for me – I actually felt worse. Looking back now that was probably more a case of too few calories and perhaps dehydration than lack of protein or nutrients. But that is just a guess.
L-Tryptophan was now off the market and I had insomnia pretty good again. Then Life Extension did a report on Melatonin. I got a bottle of 3mg capsules and was able to sleep. It worked extremely well. I no longer needed Restoril or Halcyon or Valium or any other drug, with their mind numbing hangovers, to fall asleep. I was getting to sleep and staying asleep. I used Melatonin in combination with the old adage, “Early to bed, early to rise…” I went to bed a 9pm and was up no later than 6am. Even on Saturdays if I had stayed up later than 9 the night before – I was up at 6. I later learned that that is a golden rule for insomniacs – get up at exactly the same time every day regardless of how little sleep you got the night before. Eventually the body will force you to sleep the next night. It’s a tough thing to do when you’ve perhaps just fallen asleep 15 minutes before the alarm clock rings – but do it. Get up. That combined with the Melatonin worked like a charm. Unfortunately I started to get some jitteriness after being on the Melatonin for a few weeks. I stopped it but kept my sleeping patterns strong. I used it as needed a few times over that next year to reinforce the pattern – but its now about 8 years without the need for it at all.