Jim's Blog 11/8/05

Submitted by Jim K on Tue, 2005-11-08 21:39

Just into day 6 of a Tinidazole pulse (my 4th full pulse, probably 10th overall). i'm actually feeling so good on it that I may continue a couple more days: more energy, less brain fog, burning ache in some muscles and joints, but quite tolerable given what I've had before. I actually felt so much energy for a time today that i was almost giddy. Wasn't sure whether it was a neuro effect, or just that I'm so unfamiliar with having normal energy that it made me feel high! I had started the amoxicillin a month or so back, and while it made clear how much EB load I had, I felt I was going downhill over the time I was taking it even though I had worked up to a full dose. The brain fog worsened and I could do little creative thinking or writing. I became obsessive tinkering with the www.cpnhelp.org site because even in brain fog I could get something working and feel the reward of something concrete, when other projects languished from my pea-soup brain. Also, I was grateful to see and hear others echoing their own stories and feel encouraged to get through this phase. I continue to be hugely grateful for everyone here who has shared their struggles and helped me to feel less alone. Thanks. So, when I started this tini pulse, I decided to switch to NAC twice a day. I suspect this is some of the burning muscles and joints, but won't know for sure until I stop the tini. But either that switch or the fact that the tini is freeing my mitochondria up from cryptic organisms (or, God knows, some other undetected bug), it's less of a load on my system. These dips in the road are a problem. Hard to assess from being in the cart. On the one hand, I know how much better I am now than 1 year ago when the walls of the tunnel had closed in on me. On the other hand, each time I've added a layer to the treatment protocol, I feel much worse for a while. The question being, asked from being bumped into the bottom of the cart so to speak, for how long? My wife actually questioned whether I was getting better or not, since she saw me flattened again by the amoxi and, from her perspective, I looked as bad as I had a while back. My energy worker keeps telling me how different my body feels and how much more core-energy I have than I had even a couple months ago. But adding the amoxi flared up a lot of pain, and just when I was feeling able to start exercising again, now I'm waiting for the pain levels to come down. I don't have any belief that I'll be "what I once was," since it's been so damned long that I've had CFS/FM/MCS, I really don't know who that would be. But if I have my brain back and some energy and zest for life, and less pain so I can exercise again, I'll be very happy. So far, I'm happy to be on Tinidazole, which is something I'd never expected I would say! I'll check back and let everyone know how long a pulse I end up with.

10 months into treatment

Submitted by chuck on Tue, 2005-11-08 17:11

Ten months into treatment with doxy ,rifampin,and five day pulses of metro.I started taking N- Acetyl L- cysteine about two weeks ago, took too many the first week. I was taking two 500mg twice a day. (too many things to remember) Had all kinds of new aches and pains . I had harsh back and neck pain and two days with pains in my kidneys. Things seem to have calmed down now but feeling a little nervous about starting it again. I also have been having more ringing in my ears and the sensation of hot flashes in my legs. I have also noticed that I have been feeling more anxiety lately.thanks for everyones input , it makes this more bearable knowing your not alone.Chuck

MS is not for wimps

Submitted by katman on Tue, 2005-11-08 10:36

In 1995 on a hot July day the 450 bales of hay had to be unloaded. I had made water bottles for everyine else but, being indestructabe and in a hurry, drank and ate nothing all day. That was Tuesday. By Friday I was dim and fading and my husband took me to the hospital where I was treated for dehydration and kept for 5 days, becoming septic, caused by fire ant bites on my right foot, later to become my "bad leg", blood pressure 70/50. After coming home to recuperate, I developed shingles at the level of six inches above my waist a few days later, was treated for that and lost virtually all feeling from that site down on the right side of my body. Like most of us stubborn people with this I continued to do what needed to be done, driving to the National Goat Shows in 97, 2000, 2001, 2002 I realized I had to face the fact that I was REALLY tired and not as strong as I had always been. And I had not been in the show ring for a couple of years because I tripped a lot. I went to Chapel Hill and they said "You are too old to have MS - (I was 55)- You have had a series of small strokes" and put me on a mind-bender called Aggrenox based on the lesions shown by my MRI. My husband, a pediatrician, took me off this horror after a week.

Macrocytic red blood cells (rbc)

Submitted by Alexandra Gibbs on Tue, 2005-11-01 05:07

Does anyone know of a link between infections and macrocytic red blood cells?  Before my diagnosis a blood test showed that I had much larger than normal red blood cells which is known as macrocytic.  Apparently this is common in people with MS. I was just wondering if this had anything to do with the monocytes being infected with Cpn.

yguner's antibiotics log

Submitted by yguner on Mon, 2005-10-31 03:57

Hi all, July 2004 I started minocycline 100mgx2 and rifadin 300mgx2 a day.The next day i felt my spinal cord was more heated than the rest of my body.On the 15th day i had 38.5 degree fever and flu like sendromes ,i stayed in the bed for 7 days.This was my first herx reaction.I also had popping ear when i open and close my mouth, just like in the airplane landings.For the next three months i havent had anything else besides popping ear and pain in my foot. november 2004 I had my second herx reaction which was 15 days long with pain in my kidneys and my urine was like transparant jello.I had abdominal pain as severe as in my kidneys.Because my urine was like a jello i kept checking my urine visually in a plastic bottle.Every two or three days the bottom of plastic bottle was getting dark which never happened before i used antibiotics. December 2004 I switched to INH 100mg.x1 rifadin 300mgx2 metronidazol 500mgx2 a day without pulses which clears the infected immune cells from the body.For the next three months i kept taking this combination without any side effects,i had mild abdominal pain,tingling in my feet and burning sensation of my spinal cord.The bottom of the plastic bottle was dark red after i switch to this combination. March 2005 I had the hardest herx reaction for 45 days,i lost nearly 20 kg. my brother and mother was worrying about me ,they tought i was going to die.They scared me too then i took cortisone (prednisone) to surpress my immune system which ended my herx reaction the next day.End of march i swithed to the combination of doxy and rifadin with pulses of metronidazol. April 2005 I had severe joint pain in my knees and my hips and severe pain in my feet.I also started having swelling in both my legs and feet. June 2005 Swelling is all gone now but a horrible pain started in my lover spinal cord which sometimes makes me moan.


Submitted by VladFT on Thu, 2005-10-27 17:21

Hello dear all, from the interview with Dr. A  one may conclude that rimfapin is really something special and penetrates deeper in tissue, at least I did.  I'm currently on Minocycline/Roxytromicin/Amoxicillin + Metronidazole combination  and doing very good, without any major reactions to any ( when started amoxicillin and may be metronidazole, it made a difference for a first couple of days or so - was very tired and slept the entire day). I was thinking maybe to add rimfapin to kill the beast. Does that make sense? And if it does will it be meaningful to add it on top of what I'm taking now or instead of something. I've been on ABX since February of 2005, and added Metronidazole in June. I'm on my own with this treatment and don't have a doctor to discuss with. Any your comments are greatly appreciated.

Kitkat2's "AX"-cellent Adventure!

Submitted by kitkat2 on Mon, 2005-10-17 23:25

Baseline Reference:'83:  Severe bout of nystagmus,visual problems[depth perception], severe upper back muscle tension, stiff neck, extreme fatigue, pounding heartrate, dizziness, raw/red throat,nausea.  TX: 2 wks PenVK(Neg strep/Neg EB)'83-'92:  Occasional sore throats, chronic sinusitis, nasal allergies.  Mild/moderate fatigue/dizziness.  Was labeled "Agoraphobic", but felt ill and dizzy even in the "relative" safety of my own home.TX: EES, Amoxicillin, Augmentin, Keflex, numerous times/yr for sinus infections.  Unsuccessful attempts at therapy groups to deal with "anxiety".  '93:  Sudden episode of neck pain/stiffness, combined with mid-back tightness with resulting numbness/tingling in left hip/foot. This occurred with a lumbar disk problem, and lasted for months, making ambulation painful.

doctors do mess up!

Submitted by chuck on Sun, 2005-10-16 21:49

I have been having some health issues since about oct. 10 th / 04 . It started at work one day with waves of dizzy spells, which seemed to be triggered by movement of my neck. They continued non stop for two weeks , then were accompanied with periods of chest pain. At this point I was starting to get worried, thinking I was having heart problems. I also noticed that my vision was becoming worse, almost like the dizziness. It seemed to come in waves of blurriness. A visit to the first aid room found my heart rate to be very erratic. I was sent to the hospital by ambulance, thinking I was having a heart attack. A three day stay in the hospital, hooked up to a heart monitor, showed no problems with my heart. While I was there I had blood work done which came back normal? I also had a c.t scan that revealed a sinus infection, which I had no symptoms of. I was given a two week dose of anti - biotic and was told not to worry , the symptoms were most likely the sinus infection. I returned to work on the Friday, only to have the dizzy spells and the blurred vision return with in an hour. I continued with the anti -biotic and remained working. By mid November the symptoms started to worsen, the dizzy spells seemed to last longer and a feeling of total fatigue after doing the simplest of tasks. This I found to be odd because I had been working out with weights and riding bike, doing a very aggressive work out for over a year. As I look back now I see the symptoms had started earlier than I had noticed. While I was lifting weights I would have these quick flashes of dizziness. As time went on, my workouts became shorter and shorter. By the end of August  2004 my workouts came to a gradual halt. It was as if my motivation was stripped from me.  A trip back to the doctor for more tests still reveals no clues as to what is going on. Struggling to continue to work and finding myself in emergency rooms way to many times, my employer finally ask me to take a medical leave until the doctors could find out what was going on. Being that I work in a sawmill and operate moving equipment, I thought it was probably better for the safety of others and myself to take some time off. My last day worked was Dec. 10th/04 Since then after many visits to different doctors with diagnoses from possible heart problems, to maybe its depression, to a quote from my doctors secretary " have you been tested for M.S. " Until then I had no idea as to what M.S. was. Well since then the story starts to unfold. After hours of research and looking back in to my past, the pieces are fitting together. I believe this all started about twenty- three years ago. During my first marriage. , I began having problems with symptoms of which I thought to be a S.T.D. Problems with urinating, burning sensation. After having several attempts to get a doctor to run some tests, I finally had some tests done. To my surprise the tests came back negative. I continued on with my merry life. Soon I started having more problems, itchy skin, burning eyes and inflammation in my knee. My knee would become so inflamed I could hardly walk. It would fill with a yellowish green fluid. Tests of the fluid would always come back inconclusive. Finally I was sent to a specialist in Vancouver. A five minute visit by a doctor that I just drove five-hundred miles to see, diagnosed me from sitting behind a desk with a disease called " REITERS SYNDROME" He gave me a two week dose of Tetracycline. At the time doctors still were unfamiliar with reiters  and to what the cause was. I just recently found out that reiters is a symptom of chlamydia . This I found out after writing a letter to David Wheldon. If not for the reply from David W  I would still be in the dark as to what was going on.    Chuck, Thanks for your letter. There is quite a lot of evidence that Reiter's Disease is caused by chlamydia; it should be responsive to the same antibiotic combinations. The antibiotic webpages are made to allow simple treatment; you just have to follow them. The combination of doxycycline and rifampicin (with metronidazole later added) seems to be very effective against chlamydiae. best wishes, David   A trip back to my Doctor with some questions about Reiters and how could this be related to chlamydia because I had been tested for chlamydia when this all started over twenty years ago.  We went through my files and sure enough there it was , a chlamydia test but to my surprise showed that I tested positive for chlamydia. I don’t know what happened but some how this report got filed with out me ever being told that I had tested positive.  All these years I was  taking a low dosage of Erythromycin to keep this so called Reiters at bay .My doctor insists he must have told me but I know for a fact he didn’t because I always   mentioned to him that I thought my problems were related to sex. He wasn’t the only Doctor that was in the dark about Reiters , for years I had seen numerous Doctors and when I told them I was taking anti-biotics for Reiters  their reply was always “ what is reiters syndrome ?”   I ended up having two urethral dialations and developed chronic lower back problems. No one ever put the two together as being of the same source. I also developed chronic problems with my wrists and other joints. I always believed the problems were linked to the so called reiters but doctors always had some other reasons  for my problems. They would suggest that I go have surgery for carpal- tunnel but I always refused , knowing in the back of my mind what was causing my problems. Now they call it fiber myalgae   I now have been on Wheldons proto call with doxycycline , rifampin and metronidazole for just over seven months now . Wow ! what a difference. The chronic fatigue had gotten so bad that a trip down the basement stairs would lead to a fifteen- minute nap before I could get back up the stairs.  I was reading all the information about M.S as I thought I was heading down that path. I have since had a M.R.I and was found to have no lesions . I  was surprised because I had started the treatment before the  M.R.I and was having a worsening of all the symptoms.       (spastic legs and arms, blurred vision ,twitching in my left eye , problems swallowing , over heating, it was as if someone was turning a switch on and off , ringing ears, I even went through the same experience as Wheldons wife  with the distant sound of machinery. That was bizarre , I jumped out of bed looking out the window to see what was going on,  only to find there was nothing outside.   Treatment is quite confusing at times , just when you think things have settled down and you are getting back to normal , you hit another round of metronidazole and things seem to start all over again. I have had days where the metro dosent  seem to be to bad and then I have had days where three days feels like a life time. I think I have gone through symptoms of porphyria.( chest pain , muscle cramps ,depression,blisters on my feet, itching, abdominal pain and sensitivity to sun.) I have also noticed a itchy spot behind my right ear is healing up. This bothered me for years. My  right shoulder which has given me troubles for years,  kind of comes and goes with bouts of the metro. I continue to go through spurts of large joint pain . I went through a period of two weeks where I could hardly walk. When I first started the treatment I developed tingling in my forehead which lasted for months, this has just started to subside over the last few months. Over all I know I am getting better with every passing day. I was off work for about three months and have been back to work since February 04 . I am still struggling with doctors to treat the  rest of my family as I believe they are all suffering from this bug . Tests have come back showing high levels of  CPN but doctors seem to be lost as to what to do.