Fibromyalgia

Chronic pain characterized by tender points, sleep disorder, fatigue

Jim’s Story- Chlamydia Pneumoniae and Chronic Fatigue/Fibromyalgia

Submitted by Jim K on Sat, 2005-09-17 20:56

The Tunnel of Illness

I want to update my story on the front end so readers know even before reading the "agony post" how much benefit I've gotten from the treatment. It is August 26th, 2006. Coming up on two years I've been on the Combined Antibiotic Protocol (CAP) for Chlamydia pneumoniae (Cpn). A recent forum poster asked if anyone with CFS has improved on the CAP. My response:

Damned right I'm getting better!When I started the CAP I was in a 2 year slide after 25 years of CFS, then added FMS. For many years I'd struggled and somehow maintained a semblance of a life. Then over 2 years my pain, brain fog, restricted functioning, etc. slid to a point where I had to stop traveling and could for the first time see the possibility that I would become bedridden eventually.

A Young Woman Comes Back to Life: Zdenicka's Story

Submitted by Jim K on Tue, 2008-04-22 07:07

Zdenicka, as you will see, is a spirited, passionate and stubborn young woman. Her story is very heartening to read, and she holds nothing back in speaking of the trials of dealing with standardized medical treatment with a non-standard condition and protocol. Fortunately, her father Coufal was an early member here and started the Czech version of Cpnhelp, so she had an avenue to find her own help. I've left her very thorough description as she has written it, an amazing job for a non-native English speaker, so that I don't sully the pure charm in her rendition. (Jim K, Editor)

Hold onto your hats: CFS/Cpn Article republished by Immune Support Newsletter

Submitted by Jim K on Wed, 2007-04-25 07:26

Well friends, expect another rush of interest in Cpnhelp.org. I sent the link to my recent article on CFS/FM & Cpn to Immune Support, who publish a regular newsletter on CFS and FM topics. They were very interested in the article and published it, with some introductory commentary, in their Patient Opinion section of the CFS newsletter. You can find the article at:

http://www.immunesupport.com/library/showarticle.cfm?id=7938&T=CFIDS_FM&B1=EM042507C

Outed again!

Jim's Story published in Remedyfind

Submitted by Jim K on Mon, 2006-11-20 08:20

You are likely to see a new influx of Fibromyalgia people seeking help here, as my story was published in www.remedyfind.com Fibromyalgia newsletter. You can find it at http://remedyfind.com/newsletters/Nov_06_FMS.html

It will be also published in a week or so in their Chronic Fatigue newsletter, so look out!

The site owner has tried to put the CAP into their rating system, but it throws everything else off. Right now, the best thing is to join up there and rate seperate antibiotics on your CAP for your disease(s) an include a comment "When used as part of a Combination Antibiotic Protocol (CAP) for Chlamydia pneumoniae as described in www.cpnhelp.org" which should take care of it.

I encourage you all on the CAP to join there and rate your antibiotics so people with your diagnoses can see this approach as a possibility. 

Essential Observations by Dr. Charles Stratton on Chlamydia Pneumoniae Infection and Disease

Submitted by Jim K on Tue, 2006-09-12 16:57

I am very excited to present the following article that summarizes Dr. Stratton's recent observations on Chlamydia pneumoniae infection. Putting it together has contributed greatly to my own understanding of Cpn as well as to my appreciation of Dr. Stratton's generosity with his time, and his great depth of knowledge of this area. Thanks to him for his contribution.

Jim K

Recent observations by Dr

Recent observations by Dr. Charles Stratton on Chlamydia Pneumoniae (Cpn) Infection

Letter from FMS patient Pam to Dr. Powell on results of Cpn treatment

Submitted by Jim K on Thu, 2006-08-10 01:15
Dr Powell & Staff:

I apologize for not letting all of you know much sooner just how wonderful I have been feeling for the last several months. I haven't been in contact since I left in April for my trip to South Africa.

I can say if I had not gone through the treatment for the Fibromyalgia prior to my trip I would have never been able to enjoy myself. The trip was exciting and I saw wonderful sights and loved visiting with my family there. But more importantly I was pain free.

Just how have I been feeling? I can honestly say I feel as good as I did long before I developed the FMS. I do not have the debilitating pain, I sleep much better, I have much more energy than I ever had and my entire emotional and mental outlook has changed so much to the positive that my family now has their old wife/mom back.

Raven's Story- Wobbling through Purgatory

Submitted by Jim K on Wed, 2006-08-02 21:19

This has to be the most thorough story written yet. There's a lot to learn from Raven's detailed journey. Her story will see you through the whole range of symptoms and struggle and success.

Raven’s Story

Wobbling through Purgatory

Three long years of suffering and it is time to look back. I had always treated my body as if it was immortal. It was a foolish attitude but probably born of a harsh childhood and my will to survive. So the sudden embrace of disease and disability was quite a shock to me.
It was late spring 2002 and I had just returned from hiking in the desert canyons. Despite the heat, I enjoyed clambering through the palms and almost dried up streams while taking photos. I returned home to an intense work schedule.
I had been working many hours and not eating properly. I was entering menopause and had problems with night sweats and insomnia. Although I was constantly sleep deprived, I was terrified of taking hormone replacement because of all the bad press. Instead, I turned to soy supplements that seemed to help a little.
I had constant problems with sinus infections and every spring would come down with bronchitis that would take months to resolve.
I was at the end of a long stretch of work that was finally completed. That weekend, I felt a type of fatigue that I had never experienced before. I remember being at an engagement party and having to lean on a kitchen counter. The next day I was sitting in bed watching television when a small brown spider crawled on my arm and bit me. I killed it instantly and didn’t think much about it.
The next morning as I was running water in the bath, the sound of the water hurt my ears. Crumpling a paper bag was excruciatingly painful to hear. The top of my hand felt numb.
Later in the week, I had a series of short, sweaty fevers and the numbness crept up my arm into my head and neck.
A few days later, I developed double vision.
The first doctor I saw thought it was a pinched nerve in my neck but later sent me to a neurologist. I was set adrift on a long journey through a confusing maze of medical practitioners who seemed to know almost nothing about what ailed me. I had entered the realm of an earthly purgatory and suffering became my daily mantra.
My first neurologist was an elderly man who seemed serenely out of touch with the times. Although his office staff used computers, there was not one to be seen in his office. He gave me the routine exam and didn’t have any answers for me. After my first MRI showed a small spot on the pons area all he could say was that it was some kind of inflammation. He had a visual evoked potential test done that came out slightly abnormal. At this time I was still seeing double.
He told me about spinal taps and said I could wait and see if things resolved. I became impatient and went to a university MS center for another opinion. I had a spinal tap done and they could find nothing in the CSF that indicated MS. So I went home and began researching on the Net.
The first thing I changed was my diet. Regular healthy meals became a requirement as well as many supplements I had read about. I ate the things I had cravings for and slept as much as possible. Sleep seemed to be the only escape from the pain and sensory distortions. I began to do Yoga and my attitude to work went through a paradigm shift. I let go of having to do so many things just right and adopted a “So what” attitude. My stress levels dropped.
I would have good weeks and some not so good ones. My subsequent MRI revealed that the spot was healing. In the early spring of 2004, I again felt very fatigued. I disregarded this and did some gardening in the sun—it was a hot day and it felt good to sweat and do some physical labor.
The next day, I thought I had an intestinal flu. After the gastric disturbance I came down with bronchitis. After three days, I felt burning pain in my head with intense buzzing. Then a massive wall of fatigue descended that lasted for months. I went back to the old neurologist for another MRI. This time, it was a spot on the cerebellum—very close to the original area on the pons.
Back I went to the university MS doctor. His shocking pronouncement was that I didn’t have MS because my MRI did not look like someone’s with MS. He took me to an adjoining room and showed me the films of other patients. They had lots of white spots all over the brain. He thought I had a stroke and sent me for a scan of the carotid artery. It was unremarkable with some mild to moderate narrowing.
In my attempt to minimize the whole situation, I wanted to believe him. Wasn’t a stroke better than a serious degenerative disease?
But my mind would not rest. I could not reconcile my symptoms with stroke symptoms. I went over it all time and again. Something else was going on.
I made an appointment at another university MS center. I had to wait many months for an appointment. After looking at my case, the doctor told me she thought it was MS. She suggested I go on Copaxone and gave me a flashy promotional kit for the drug. I went home to consider it.  I spent the rest of the day in a fog of despair.
I never called the toll-free number on the package. Something was nagging me.
I read everything I could about the drug on the Net and it didn’t sound like it did anything. There had to be something I was overlooking. I sat down at my computer and Googled “MS and Infection” and found David Wheldon’s site.
Reading his clear and direct account of his wife Sarah’s illness was like having a big game fish on my line. I had made a big hit on information that sounded so familiar and true. I sent him an email and asked if he knew a doctor in the U.S. who was knowledgeable about the Vanderbilt protocol for chlamydia pneumoniae.
He put me in touch with a Dr. Powell in Sacramento. It was a long trip of hundreds of miles but I could take a plane. For the first time, I had some hope that I could be well and healthy again. But I soon found out that the road out of the inferno is long and hard.
In between the two university MS specialists, I had many tests for endocrine functions and one for Lyme disease. The only finds were an elevated cortisol level and a raised level of Anti Nuclear Antibodies (ANA). I was tested for Lupus but those tests came back negative.
After developing pain in my legs that kept me awake at night, I was given a prescription for Neurontin. I soon became severely hypoglycemic, depressed and suicidal. I did not want to get out of bed. Strangely, the endocrinologist I saw didn’t think I had low blood sugar from looking at my fasting blood sugar test, but I had to eat something every hour and a half to keep from shaking like a leaf.
I saw a rheumatologist who thought I had Fibromyalgia. He spent hours with me talking about how to relax and de-stress and then sold me a relaxation CD. He told me to go home and exercise. I tried to work out on my treadmill and do Yoga. The hill I used to walk near my house was too much for me. After I would exercise, I would collapse with exhaustion for a day. After 5 or 6 months without the Neurontin, my blood sugar returned to normal.
There was something vascular going on as well. Sometimes my heart would race for no reason. I broke out in tiny red spots that were broken blood vessels. My skin looked grey and lackluster. Sleep problems left me with grey circles under my eyes.
I found myself holding my breath and not breathing properly. And my fingernails began to look strange. Where the nail meets the nail bed used to be clear and straight, now it was crooked with valleys and peaks. There was a red tinge to the nail bed nearest the fingertip and the moons had all disappeared except for the thumbs. When my symptoms would flare, the redness became more pronounced.
I later read on a site created by a woman who suffered from pernicious anemia that her moons in the nails would disappear about the time she needed a B12 shot. Now that I am taking B12, the moons are beginning to show in a few of the fingers. Why is this so significant to me? I had always had very nice strong nails. I never bothered to polish them because they looked so good. I found a picture of me showing my hands from '93 and they were perfect then with prominent moons. The nails are an excellent indicator on the health of the body.

Fast Forward to the Present....
Now I am on the Vanderbilt therapy for Cpn. I began taking antibiotics in August '05 but the full treatment cycle really began in September. I have had many of the symptoms we all talk about. The first pulse of Flagyl was not too bad; the second one was so bad I could only stand 2 days. The third was fine until the very end and then I fell off the edge of the world---stumbling around in pain for a couple of days.
I'm always afraid that I am having a relapse when this occurs. It is so hard to calm the mind. What helps is to read and re-read all the information I have printed. This gives me courage to keep going.
I am going to begin seriously studying meditation. I recently read about a group of researchers at Massachusetts General Hospital who did a study on 20 people who did meditation for an average of 9 years. They did MRI studies that showed an increased thickness of the insula, a region responsible for integrating thoughts and emotions. Most of the thickening was in an area of the right prefrontal cortex that is dedicated to attention and memory. Those in the study who did Yoga in addition to meditation had even greater brain thickness.

Wobbling Thorough Purgatory: Meeting With Demons
Not too far down the difficult path comes a meeting with the twin demons Pain and Fear. Pain is the first to attack. It wraps spiny fingers around my body and clamps down. Fear envelopes like a frigid toxic fog making it impossible to see the road ahead. It is easy to stumble and fall and not want to go on. But these are wraiths that can be beaten off with time and the spirit of Hope. When they depart, I am again sure that I have a steady foothold on the right path.
The world we are all so sure of is crumbling around us. Many long held scientific views are now being challenged. We are in for a paradigm shift in the way we treat chronic illnesses. I see the signs all around. I keep a mental notebook of others who are aware of this shift. There are clues everywhere. This is what keeps me on this road. And I am grateful for the support of my fellow travelers on this site.
As for my progress, I finished a 4th Flagyl pulse around Nov 26th and had severe reactions such as muscle pain and twitching, fever,
lack of coordination and brain fog. My feet and legs seem to be more affected than before with soreness in the large muscles. My energy has been good except for those days when I am really suffering. Just finished 5 days of Flagyl--the 5th pulse. I only encountered one day a few days after I was finished that was painful.
What has improved? I can walk on the treadmill for a mile with a slight incline without collapsing the next day and staying in bed. I am sleeping very well and dreaming again.
A spot of eczema on my elbow is gone. My brain seems to be sharper with spelling and typing. I have had longer periods of time with more energy and less pain in December. And everyone around me was sick and I did not catch whatever was being passed around.
To battle the twin demons, I began meditating and journaling. This is a stressful journey that needs to be supported in any way possible. Pain may come out of our bodies but Fear comes out of our minds. And we can change our thoughts.

Wobbling Through Purgatory: A Window of Sunshine
Just when the trip down the road to recovery seems arduous and the mind is resigned to perseverance, there is an opening in the dark clouds and a window of sun beams down on the path. After a cold stormy weekend, the warm weather blew in with the Santa Ana winds.
I began to feel a lightness and wellness that I haven't felt in a very long time. A few days ago, I walked the two hills down to the beach and back---about 2 miles. I haven't been able to do this for a year and a half. The hills are very steep and long. I didn't have to stop to catch my breath. My muscles didn't ache and burn nor were my joints sore. After that, I cleaned up the garden debris from the storm and went out to dinner with friends. I didn't get home until after midnight. The next day I felt tired and noticed ringing in my head. This is a signal that I am about to be visited by a toxin release. Took charcoal and about 6 grams of C over the course of the afternoon. I also tried deep Yoga breathing--this is very cleansing. There are many kinds of Yoga breathing but just deep belly breathing seems to clear out toxins and calm anxiety. This morning I feel good and did my usual meditation and Yoga practice. I felt stronger as I went through the poses.


Been Down This Road Before
Treatment time is like travel time---it seems like you will travel on forever and then you arrive at a new destination that is much like the last place you visited. It's only different in many ways. Just finished my 6th round of Flagyl and did not escape the misery it brings. Charcoal, my Sooty Friend, is the thing to take mid-morning, mid-afternoon and evening. But fitting it in between food and supplements is sometimes hard. I have to keep reminding myself of what it does and how valuable it is. Talked to my tour director Dr. Powell by phone and he told me to get some Niacin as well as B5 and B6. (And the hilariously named Horny Goat Weed as well.) I had a hard time remembering what that does. I wrote it down but brain fog is buzzing in my head lately. I took some time to read the web site that Ines Neihaus put up about her encounter with Salmonella endotoxin. http://www.endotoxin.gmxhome.de/artikel3.html Although I don't understand a lot of the science, her tale of suffering was woefully familiar to me. At this point, I wonder if I will always have residual damage even after the infection is gone. It seems like it is almost impossible to kill it all. And what about re-infection? I guess I should just be grateful that I have had some bright days in the month of January. The good traveler stays in the "now" and appreciates what each day brings and suffers the strain of the journey one day at time. I read Eckhart Tolle's book "The Power of Now" over the holidays and I am just starting his new book "A New Earth". He is a good traveling companion and his wisdom keeps me grounded on the path while lifting my spirit.

Eight Months on the Road
Learning the ways of the road is hard. I realize there were things I neglected in my treatment that could have saved me from the suffering of the last few months. But I was facing a very demanding work schedule and I was in survival mode. In spite of how bad I felt, here I am at eight months of treatment feeling not too bad. My typing is fast with mistakes (as it has always been). I can read and comprehend well. I am sleeping very well. My body temp actually came up to 98.6 last week. Today I began another round of Flagyl. Will have to remember to take my charcoal 3 times a day. Still have pain in head and face muscles, shoulders and back. Nerve pain seems to have died down. Wobbling when walking is gone. I am posting a chart I made from my calendar notations. You will be able to see all the ups and downs. Even had a few stellar good days. Carry on! Better days ahead.

The B12 Experiment
My last pulse of Flagyl produced some bad episodes of secondary porphyria. I was a mess for at least ten days. I had not been keeping up with my B12 shots (only the sublinguals) so this time I made it a point (ouch! no pun intended) to inject 3cc's of B12 every other day during the pulse and for 3 days after. Also took lots of sublingual 5,000 mg Methylcobalamin in between. I came out with a few endotoxin attacks (mostly mild--took lots of C) and nothing much in the way of the porphyria I suffered last month. I had to learn from this. I don't have a good tolerance for injections--I sometimes get big bruises. So I was reluctant to do this but it was worth it.



Rambling Through Purgatory: At The End of April
Stress and recovery are the important themes that run through the last few months.
I was warned to take it easy but alas I have a demanding job that at times extracts all the energy I can give it. I am ready for a break and it's coming soon.
March was full of suffering and cold. I think it was secondary porphyria that really got to me. April seemed to bring some relief. I actually marked more good days on my calendar than bad. I felt good enough to go on some hikes in the desert when the temps were in the high 90's. (In the early morning of course!)
I stopped wobbling when I walked fast. I thought it would last. Silly me. The last Flagyl pulse brought back pain and fogginess. An old headache that only affects one side of my head reappeared briefly as well as some nerve pain.
But I am still sleeping very well. My restless legs are history. My eyes don't hurt. The joint pain is gone. My feet don't hurt on the bottom (that was a symptom for a couple of months that I hated--it slowed me down). My typing speed has improved even if I do feel somewhat foggy at times.
My upper respiratory symptoms are the same--lots of build up of mucus in my nose--I suspect it's the NAC. However, my chronic cough is gone along with the yellow phlegm I used to cough up every morning. I'm thinking of sending some Cpn information to the pulmonary doctor I saw who couldn't figure out why I had a constant cough, wheezing and sleep disturbances. (He also treats sleep disturbances).
So here I am at eight months of the full treatment. I marvel at the amount of energy I have regained. I was accustomed to coming home from work and going to bed right away to rest up for the next day. I just have to be careful now that I don't push myself. I have a long vacation coming soon.

For those who don't recall, I have had several conflicting opinions from various specialists that range from MS, Chronic Fatigue and Fibromyalgia or a combination of these. As far as I am concerned it's all Cpn (and also it's dark cousin Mycoplasma Pneumoniae) I tested positive for both. I began the CAP treatment in August 2005 and ramped up to the full Vanderbilt protocol in September. My worst month was November.
I have been reading the posts about who suffers the most from this treatment and I have to say, it was a rough road for me at times. I don't care anymore what my diagnosis is because none of the doctors I saw were able to do anything to help me until I saw Dr. Powell. And my understanding of the Cpn disease process continues to grow. I just have to remember that I am in a battle for my body's energy and I have to use what I have carefully so that I am not short-circuiting the healing process.

Minute by Minute, Hour by Hour
My body has been like the weather lately. Stick around for an hour and things will change.
I'm at the last day of a Flagyl pulse. I should feel wiped out but I'm not. Ramping up to 500 mgs of Niaspan twice a day brought out some die off symptoms the week before this pulse. But I picked up and began to feel better. I have a spot in the middle of my spine that has been feeling creepy crawly for weeks. Sometimes the muscles near it get sore and stiff. It comes and goes quickly. Still have stiffness in the muscles at the side of my head. Had some warmth sensation in one foot and heaviness in one leg. Sensations seem to shift around during the day from hour to hour. My right hand sometimes gets a little stiff and the arm muscles sore. It seems like I still have many areas of infection to clear. However the fact that these areas come and go is a difference from when they were persistent.
Fatigue is normal---I work hard and get tired.
Have been neglecting my exercise because I get busy--not good.
I need to get moving and do some walking and Yoga.

This is a small update at 8+ months of full treatment.

A Lag in Reactions
It seems lately there is a lag in post-Flagyl reactions for me. Wed. was the last day of a pulse. I had been sailing through it fairly well not feeling the effects but on Saturday, here I am---fatigued, woozy, legs ache and brain is foggy. I might as well just crawl into bed and wait it out. These are the times when it gets tough mentally. Distraction seems to work.
Reading a book or watching a movie takes the mind off it and it doesn't seem so bad. Believe me, I am not anywhere near as miserable as I was in November. And the brain fog was so bad then that one day I spent 20 minutes trying to figure out how to fill in and mail a rebate form--that was scary. But those days are past and I noticed on my calendar that I haven't had to put any marks on any days in April and May that symbolize a very bad day. There are only marks for days with noticeable symptoms and good days. Let the good days keep coming. Hang in there girl.

Back to the Pit Once More
It's been going on about a week now. I have been bounced back into the pit of suffering. It began with more aches in muscles, feelings of movement in the middle of my spine, side of the head hurting and ringing and aches in the legs. My appetite fell off and I feel queasy.
Fatigue returned and a feeling of being out of breath. My pulse sometimes seems like it's pounding but it's not up that much. I have a sense of heat on the side of one foot that comes and goes.  The restless legs at night haven't returned though. My intestines seem irritated. But I'm tired at night and sleep is not a problem.
I take C, B12 and charcoal but nothing seems to help. I'm wondering if the Niaspan is affecting my body chemistry in some way. Maybe my potassium levels?

I'm going to delay the next Flagyl pulse that I was supposed to have started this week.
I see Dr. Powell next week so I will be re evaluating my treatment course with him.

It's hard to remember when I felt so bad--probably in November. But thinking back, Nov. was worse--more pain and terrible brain fog. I don't feel too brain fogged this week. I'm still able to get through a day of complex work even though I feel bad. So strange how it comes and goes. I can feel awful one hour and the next I feel somewhat better. There's some weird mood swings, too.

Last night, I filled up the tub with hot water and 3 cups of Epson salts, soaked and climbed into bed with a heating pad. I felt better in the morning but as the day progressed, began to feel poorly. Stopped at the health food store for some acidophilus and crushed some ginger into water when I got home. I guess I will just have to wait it out and get through this.

On the way home I was driving by the beach and saw the teal blue surf pounding the shore. "How wonderful if I could wade into the sea and have it wash me clean of all that caused me pain", I thought. Tonight I can soak in the bath and think of the water pulling all the toxins from my body. And remember the waves.

Back from a Long Trek
Last week I made the long trek to Sacramento to see Dr. Powell and another doctor he suggested I see. It's a relatively easy trip for a healthy person but stressful for me (who is not.) I was grateful for the visits with both of them. Dr. Warner works with hormone replacement and put together a compounded mix for me that was heavy on the estriol. He knew all about the research at UCLA on MS and estriol.

Dr. Powell was concerned about my platelet count as it was dipping below normal. We discussed treatment and the full antibiotic protocol. He seemed cautious about having me hit it so hard right now with all the antibiotics. He is advising more chlorella, niacinamide, indole3 carbinol, curcumin (lots of it) and perilla seed oil. I'm staying with NAC and the Flagyl pulses.

He seems to think niacinamide in sufficient doses will interfere with Cpn replication. I asked him about low dose Naltraxone and he gave me a prescription for it. I began taking a low (1.5) dose a few days ago. Some waking up early noticed. Will add another 1.5 tonight to make the 3 mg dose. I did sleep hard and woke feeling better the first day after I took it.

My last pulse of Flagyl was number 12 and it was grueling. Lots of large muscle burning fatigue and pain. Head pain and leg pain. Even some pain in my shinbone. Able to rest this weekend and do nothing. Began to eat fresh pineapple again daily. I had been neglecting this.

I've read on some low platelet message boards that it raises platelet levels. My niece the nurse thinks that I may be producing a good amount but they are being beat up in the blood stream by toxins and such. Perhaps she's right. They have been fluctuating up and down through the months. I think pineapple may do the trick. I feel better when I eat it every day. The core is supposed to be full of bromelain--an anti inflammatory. Good to chew on even if it is tough. Bromelain taken with curcumin increases the absorption of curcumin (as does pepper).

My Long Neglected Juice Machine
My long neglected juice machine was put into action last night. I juiced a whole turmeric root, apple, and bunch of carrots, pineapple, broccoli, lemon and watermelon together. I should have added ginger root too. I drank it down with my evening supplements. This morning I felt much better. I will be also adding watercress when I can get down to the farm stand. They have all organic fruits and vegetables. It is important to use organic when you are juicing because you are concentrating a large amount of fruits and vegetables.
If you have a juicer, it seems like the thing to do to fill up on antioxidants. It takes time but it's well worth it!! Write in and tell me how it works for you.

An Interesting Trip Through a Tunnel
I remember Jim talking about a "tunnel of pain" in one of his blogs. It's been like that for me since my last Flagyl pulse about two weeks ago. I may feel OK in the morning but after lunch, the ringing starts in my head, my neck and side of my head become stiff and throbbing. My arm and hand feel swollen and numbness creeps into my fingers. Lately my right leg has become sore and stiff. I make it home, eat something and get into an Epson salt bath as fast as I can. The heat helps the pain. My heating pad gets wrapped around whatever hurts the worst. I'm taking all the remedies for toxins and porphyria. B12, C, Chlorella, Curcumin. Rest seems to be helpful. At times, my mind spins dark scenarios of relapse and I feel a shadow of depression. But I get up the next day and I can still see normally and walk. I wonder just how long all this can go on. I was feeling much better in April and early May. I have two weeks before I have some vacation time and I'm just taking it one day at time. Maybe this won't be a very long tunnel and I will soon come out into the light.

A Little time on a Good Stretch of Road
I had been enjoying a remarkable week of feeling good with high energy until the third day of my 15th Flagyl pulse. It was great to feel like a normal person again. Hot weather didn't bother me, I did whatever activity I planned and slept deeply every night. So now on the 3rd day of the pulse, head ringing, muscle burning and headache have returned. I still have a long way to go. Looking at Jim's Exercise and Affliction Chart, I would say that I have had all the Cpn afflictions except for heart problems--don't seem to have much heart disease (or high blood pressure) in the family.

On a more positive note, I have had many people I haven't seen for a long time comment on how healthy I look. I'm no longer puffy under the skin---my muscles stand out. I've lost fluid and fat. I have a healthy rosy glow to my skin from better circulation and increased body temp. My typing is much better than a few months ago. I have been able to do a fast walk on the treadmill for a mile on an incline and then do Yoga afterward.  I look like I did in pictures taken ten years ago.

At times, I find it so hard to believe what is happening even though I am living it every day. I know it will take longer for me to clear this organism from my body because I have had such a long exposure to it. But I am seeing steady progress.

Many of the things that have made a difference in my recovery were simple to implement. I began meditation in Nov '05 and have been keeping with it daily. It has made a huge difference in my stress levels. My diet is mostly organic vegetables, beans, a little fruit, chicken or white fish and complex carbs such as potato, brown rice, pasta and whole grains such as quinoa. I don't use butter but substitute olive oil. I drink a whey powder shake in the morning made with soy milk and a banana for energy. The whey powder has been burning fat and building muscle. Every now and then I eat plain yogurt or kefir mixed with pomegranate juice. I place a special emphasis on any fruit or vegetable that has antioxidant properties (such as blueberries) and try to eat 1 or 2 servings at every meal.

I have been taking Low Dose Naltraxone now for about a month. I had morning headaches the first week I took it but not now. No weird dreams. I know it is supposed to stimulate the pituitary gland to make more endorphins that then raises Natural Killer cells. I sometimes wonder about my first MRI report that mentioned a very insignificant sized pituitary gland and how that might be related to Cpn and the cycle of the illness.

I have much hope for the future. In August, it will be one year since beginning the CAP therapy. So much has improved. Who knew the road would be so hard? But I survived it. With a little help from my friends online! My thanks to all of you!

Sailing Through a Great Vacation
I just returned from a trip to Hawaii to visit an old friend. It was a wonderful visit and I felt great the entire time except for a few little aches on the last two days. The weather was sometimes hot and humid and I was able to handle it like a normal person. The biting bugs still love me but I didn't have my usual excessive reaction to bites. I did some hiking, touring various sites and went snorkeling in the beautiful turquoise water. Saw monk seals, angelfish, sea turtles and rays underwater.

I didn't experience any head ringing the entire trip. I bounced back from jet lag in a few days--seemed to sleep a bit more than usual.

When I returned to S. Calif. it was if the tropic weather had followed us home. The hurricanes in Baja have made the humidity jump and the temperatures near the beach climbed into the 100s on Saturday. It's slightly cooler today but our house has no air conditioning--only fans. I am tolerating the heat well so far.


I am continually amazed at my recovery process. I am a real skeptic but the evidence is so clear. Today I watched a video of myself from last August when I began the treatment. I looked so old and tired. My skin looked bloated and puffy. What a difference! What a change!

Began another Flagyl pulse today (number 16) and feel a little head ringing coming on. My last pulse was not difficult so I must be dealing with a reduced bacterial load.
Keep the faith and pass the antibiotics!



One Year on the Road
August 1st was my one-year anniversary of beginning the Combined Antibiotic Protocol for Chlamydia Pneumoniae and Mycoplasma Pneumonia. It has been a year of tumultuous ups and downs, many new challenges and surprising physical transformation.

Yesterday, I did a day of house cleaning in the hot humid weather that last year would have left me flattened and in bed the next day. I sweated for hours cleaning and then took a cool bath in Epson salts. Today I woke up with muscle stiffness in my arm and back from moving furniture and pushing the heavy vacuum around the house. But I ate breakfast, took my supplements and went at it again, cleaning the rest of the rooms I didn't get to.

It seems my energy levels keep increasing but my muscles and nerves are still not up to the challenge. I realize this will take time. I am now 4 years older than I was when I first became ill. The best thing is to be active. I have been walking a fast strong mile on the treadmill, doing some Yoga and some exercises for my weak left knee.

I still have some nerve symptoms such as a tightening on my scalp on the right side of the head, a little residual numbness in the right toes and a little stiffness in the right hand. My last two pulses (#15,16) were light on the reactions--some nerve pain, head ringing, a little chill and some fatigue. But my overall health is much improved. Last May (05) I was very sick with pneumonia. This last year, I didn't even have a cold. I have lost fat and fluid under the skin. My hair and eyelashes are growing in thicker. My circulation is better. I sleep very well--no more insomnia. The restless leg syndrome that was bothering me left in the first few months of treatment.

I shudder to think where I would be if I had not discovered this treatment. It may take me years to regain my full measure of health, but through this process I have learned the meaning of patience and I am always grateful for the work of Dr. Stratton and his staff, Dr. Wheldon and Dr. Powell.

I will continue on with the treatment another year and see where it takes me. For those who are just beginning the protocol, be patient and stick with it. It will take time. In the beginning I was so anxious to see some positive changes. I had to go through periods of feeling worse before I could feel better. This was emotionally difficult and this web site helped me get through the worst of the times. My thanks to everyone who responded with encouragement and support. The stories of others such as Rica and Sarah were an inspiration to me. The courage of Guner and Willow gave me strength. And thanks most of all to Jim who did the hard work to put this site on the web.

Love and thanks to all, Raven
 

Nice mention of our site on

Submitted by Jim K on Tue, 2006-07-25 23:23

One of the best sites on Chronic Fatigue is http://www.phoenix-cfs.org run by Cort Johnson. It is this site that Astrodiana's story of recovery from CFS via treatment in 1998 with Dr. Stratton. Our site was given nice mention in this month's newsletter and research report:

http://www.phoenix-cfs.org/PR%20X%20June%2006.htm 

"HOT LINK OF THE MONTH– If you were intrigued by Diana’s rather amazing recovery after suffering from CFS for several decades then check out this beautiful site on Chlamydia pneumoniae http://cpnhelp.org/. There lots of information you can't get anywhere else and there is a link to Diana’s story on it."

Astrodiana's Remission from CFS/FM in treatment with Dr. Stratton

Submitted by Jim K on Wed, 2006-07-05 00:24

Diana was one of the last people tested at Vanderbilt before the Cpn lab closed and was evaluated and treated by Dr. Stratton with the help of her local physicians. Her full story is fascinating as it charts a course many of us with CFS and FM are all too familiar with. She also provides so glimpses into the bigger studies Dr. Stratton participated in suggesting up to 50% of CFS patients may be Cpn related.

Astrodiana has her full story at this link:

http://www.phoenix-cfs.org/Story%20Diana's.htm

Diana will be condensing this story for this site, but in the mean time I thought you'd like seeing the original missive.