Tough days...

Been some hard days to get through.. Stomach really slowed down.. I had a slow stomach from before antibioticsi, but I actually thought antibiotics would get the speed up a bit.. But, no..

My stomach don't like speed.. If the speed gets high, I get small tears inside, due to gas-release I guess.

I still, today, after almost 35 years of life get proof of me being a bit different than most other people in more than one way..

At a norwegian forum, discussing FMSi and CFSi, I get little or no support for this protocol choise I made.. They don't belive in it..

I'm not 100% myself, but I still won't give up without trying. I have proof of having CPNi-traces in my blood..

Being sick for almost 5 years, with FMS and CFS, I have tried most of the things I have read about, and had some belief in..  But also, after 5 years and not getting better, only more fatigued.. I must admit being down with some depression as  well.. Comes and goes, but doesn't seem to leave completely..

My "friends" at the forum all tell/ask me to get my a** off to see a shrink.  But there are looong waiting-lists for these things here in Norway, and I really don't want to go there.. As I have no belief in what they could do for me..

Also, doesn't help being this fatigued, and having this much headache..

 

Comments

Hi, didn't take it the wrong

Hi, didn't take it the wrong way..

Just feel so beat-up now, that I can't do much at all..  Luckily I don't have anything that must be done this week.. It's Tour de France all week.. Allthough I compress the programme a bit.. Running it in 2-6 or 12 times the normal speed.. And just check out the potential highlights.. Can't sit in front of tv for 6 hours straight..

Can barely wait until bloodwork and some nice discussion with the doctor on the 5th of august. Hope he gives the ok, to proceed...

Also, I hope that I sometime soon can get some sort of help with my overweight too.. BMI of 42 is a tough job to carry, despite my strength..

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

Eirik, You are correct with

Eirik, You are correct with the doctors not wanting to take the time to find the cause of our illness. I was very ambitious and worked two different jobs. This illness causes our lives to turn upside down.This is not an easy road to travel.

I  understand how you are feeling and hope you didn't  take my last comment the wrong way. We all need hope and encouragement.

 I wish you the best.

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

There's a story going round,

There's a story going round, that some "housemom's" get a "tag" in their medical folder. A tag that says "F-B" or similar abbr. (Translated : Fussy Bit*h) 

Ususally because the doctor dismissed their fuss, after their first visit as "mental/ psycological/burned out".. And really don't like spending more time or effort on them..

On the other hand, there are a great deal of people that get a FMSi-diagnose, of the same reason.. The doc don't understand what's wrong, and don't want to spend more time on them..  I've heard of people getting a diagnose like " FMS on/in their metabolism"...

Yes FMS will in most cases implicate bowl-dissorder.. Bot apart from that, they're not directly related.. (afaik)

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

Doing a good deed is good

Doing a good deed is good medicine for the soul. It can keep or focus off ourself and give us a good sence of purpose.

Great job on your good deed.....a happy heart is good medicine.

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Hi.Yesterday I made myself

Hi.

Yesterday I made myself do a good deed.. A friend has just moved.. And, he had three small trees outside his new house. They were in the way for his car. He has a real problem with his back, so I thought it would be a nice gesture to help him, since I have a power-chainsaw..

I drove up to see if he was there, and yes.. BUT.. The chainsaw hasn't been used in over a year.. So I had a real struggle to start it.. 15 minutes of pulling the cord made my shoulder really hurt.. But, then it started.. So I didn't want to stop either.

I cut down the three small trees, and parted them up.. Roughly !

By this time I was sweating A LOT !!! (total 35minutes of work)

My body still felt ok.. Except from my shoulder...

I sat down for 10 minutes, until stopped sweating.. Did a quick wash and packed up the chain-saw that now was cooled down..

I barely could keep my right hand on the steering-wheel.. But I went home.. Took a warm bath, ate a little and saw a movie..

Today, I can barely move at all.. It hurts all over !

What a nice life !

What a treat to do a good deed !

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

Hi, thanks for the kind

Hi, thanks for the kind words..

Yes, I relate myself directly to what I accomplish.. No accomplishments = zero value.

Once I told the doctor of my back-pain, "wandering pains" and fatigue.. She said "You're prpably a little burned-out. I'll put you on 50% sickleave.. Take it easy for a few weeks"..

Yeah, right.. What happens, is that I now just have 50% time to do 100% work.. OR in best case, I easy my load down to 80-90% that I feel NEEDS to be done, and do it at the 50% time.. Then go home and sleep..

For my case I can say that I've never done any drugs, coffeine, coffee, alcohol or any other "un-natural" things.. The longest I pushed myself, was on chocolate..

But I ate A LOT of chocolate.. On my really slow days, I could eat up to 1kg (2lbs) a day..  Without gaining weight..

When I was out on 100% sick-leave (for the standard 12months in Norway), my employer had to get 9 substitutes to do the job I managed alone. There was a little extra work to be done, with a 25% increase in orders. And the people had little training in our system. But as a total, 9 people had to be called in to stay afloat. They offered me a reckliner/Lazyboy to sit in.. If I just would come, sit and give orders to the people..

But at this time I was DONE !  And knew that I couldn't be responsible for those incompetent guys, I have had temps there, and I knew that I had to doublecheck every bit they packed.. If not, our customers wouldn't get all the parts needed. And we had to do extra work, packing/logisticks...

It was hard beeing an over-achiever... And now, as you mantioned, I'm totally worthless in my own eyes..

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

The majority of people I

The majority of people I know with stealth infectionsi are very driven, ambitious go getters...it's not easy for us to slow down or take it easy and so we generally tend to go until we drop. Since i was very young,my own self worth has always been directly related to how much I can accomplish in a day...so when something like this hits you, you feel like a total failure and long for the productive days to be back. Nobody has to tell us we are not producing like we should..we know it. And most of us tend to do it all ourselves because we want to control the outcome and have things done correctly.

When I worked, my work and producitvity never suffered..instead, I suffered, dragged myself to work, took amphetamines to keep going, wrote lots of notes to myself so I wouldn't forget anything, and dragged myself home and up the stairs to bed and exhaustion. Slept and did it all again the next day and the next.  By the time the titers get high, this is truly no life...which makes me feel like what do we have to lose by getting on a protocol and dealing with the sympotms until our good days get longer and our bad days become fewer and further between.

People who are lazy, irresponsible  or depressed don't care...we DO care...people who are like us just don't go from ambitious and productive to lazy and hypochondriac, there is a physical reason that most doctors miss with this thing.

 so hang in there Eirik...we understand where you are coming from

Astrodiana

Well said Astrodiana, I just

Well said Astrodiana, I just wish that my previous doctor could read this,

"People who are lazy, irresponsible  or depressed don't care...we DO care...people who are like us just don't go from ambitious and productive to lazy and hypochondriac, there is a physical reason that most doctors miss with this thing."

Latterly I began to believe that I was a time waster ...wonder what she thought when the MRI results came her way? Still 300 miles and four years away it's water under the bridge now and the daily task is to keep on taking the pills to get back to where I should be.

If it was easy, it wouldn't be an achievement would it?

speedbird

Speedbird ~ when I

Speedbird ~ when I complained about my exhaustion to my family doctor who knew me well and for many years, he said to me "We're ALL tired, Dee...this is just the way the world is nowadays". I still see him for certain things, but have never even approached the whole Cpni issue with him...he would laugh and tell me I am wrong. He just thinks I regained my energy after my sons grew up and I went thru menopause : )

I was either dismissed or given anti-depressants by every doctor I saw for many years. One said I had "bored housewife syndrome"...I told them I was NOT depressed because I would wake up every AM full of hope and ready to conquer the world or at least my laundry, and by 10:00 AM I was writhing in pain and completely spent. I KNEW my distress was directly related to my energy and I was upset because I couldn't seem to push thru it. I figured it HAD to be a physcial problem.  But some doctors will NEVER get it. Some understand the problem all too well because their lives have been touched by a friend or family member who has experienced the same problems and they have been there to witness the decline.

Astrodiana

Yes, I started the

Yes, I started the programme..

Started with NACi, then Doxyi 100mg, then 250mg Azith, and now doubled up the doxy to 200mg daily.. Hope to start on flagyli in august..

I had a CPNi-infection about 10 years ago.. Confirmed ! Got single-antibiotic treatment at the time.. Was really fatigued for months. But was told it was perfectly normal.. After a few months I felt fine..

In 2004 my job got harder, more stress, more work, also my mother died in spring 2004 (52 years old) Then a new boss at work, a real j*rk...

These things might not be connected, and might just be the "trigger" that sent me over the cliff.. I have a strong mind, and lifting weights and bicycling was my kind of thing when I was healthy.. Easy to lift 200lbs onto my sholder and walk on with it.. Have done 300lbs at one time.. But that hurt a bit in my lower back.. Legpress in chair, have done 700 lbs.. So I WAS strong .... earlier !

Could get on the bike and drive for 3-6 hours at any time I wanted.. Before illness occured.. Biking up a long hill, gives a nice mental boost if you can manage it !

I could do most things, as I've allways have been a handy-man. I worked on cars, bought a house, fixed them up (after dismantlign every little bit)..

Never had more than 6days of holliday (in a stretch) due to work.. Meaning, I wouldn't let other people mess up my system while I was on holiday.. I could have more, but didn't..

I've allways felt "do your best, or don't do anything at all".. I've been HARD on this rule for my own sake.. Because I hate to do things twice.. Sometimes it could mean that I kept on doing something, for hours or days, until I felt it was as good as I could do it.. I hate all kinds of mess too..

I never ask for help.. Not unless people tell me to back-off and let them help me.

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

I've watched the Tour...and

I've watched the Tour...and actually thought it was a glimpse into hell Wink   Those guys are amazing and I wonder HOW on earth can anyone derive fun or satifaction out of riding uphill for such a distance, exhausted, thristy, pushing on..except that when they stop, they feel better. 

Gas or slow digestion can both mean not enough stomach acid..so the Betaine should help. also maybe try the probitoics only every two days and see if that makes a difference for you..too much probiotics can also cause problems. 

The extreme aching, stiffness and all the other symptoms you mention are probably the same things most of us here have experienced.  Our holistic cardiologist is also a long sdistance runner...he says D-Ribose, a simple sugar, is something he uses and recommends to heart pateints..it either provides or converts to ATP - which is cellular energy..what our cells use for energy.  Although, not sure how much diseased cells can benefit from it.  One of my sons who lifts weights and runs to stay in shape has found it beneficial.  I get the powdered D-Ribose and put it into any drink, coffee, juice, water. it is natural and safe, but expensive.  Something maybe to try if you are exerting your muscles ...I need to look Eirik - are you on Abxi?  Have you tested pos for Cpni, myco, etc?  I will look at your blog when I get a chance.

Now that I am about to start the protocol again after 6+ years of great energy and health, I think I need to blog as well..just trying to figure out how to begin.

Astrodiana

Have done bicycle-rides 3

Have done bicycle-rides 3 times since sunday.. 10km, 18km an 15km yesterday.. Get a little inspiration from Tour de France..

I can do it, but OMG hav lousy my body feels later.. Totally drained, aching, stiffness, and fatigue of course..

My dad gives NO support, since he thinks it just negative thinking.. That I expect the pain, expect the fatigue, expect problems in general..

I tell him, that I HOPE to feel fine, I'm glad if I feel fine. But I don't walk around faking it. Saying I feel fine if I really barely can walk, or if I can't sleep at night.

 If I take to much fiber I get really "gasy" And that's BAD GAS.. I sometimes take "Lactulose" a fluid fiber that helps digestion.. If I eat strawberries, wich are full of fruitfiber, I also get gasy.. So, I have read that people with IBSi, often get those problems if they eat fiber..

But, my body is so strange in so many ways.. Who knows what causes what..

Thanks for your support and advice..

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

They say it will help to get

They say it will help to get rid of the depression I have..

But, I say "The depression comes from my health-situation. Bad health, weight-problem, stomach, FMSi, CFSi, not being able to work for 5 years, all my earlier (physical-not online) friends have disapeared, and only contact me if they really need some advice..

Can't find clothes that fit any more. Only have two adidas-"slacks" that I change between. Since my thigh has a circumference of 30 inches, clothes are impossible to find. I've done some powerlifting earlier, and have very little stomach compared to my total size.. My current weight is 325 lbs. (147kg) Height 1.84m Shoulderwidth 60cm+ 130cm round the chest, and 140 at the belly...

This has brought me down with a depression.. Weight and all the other things mentioned.

A therapist won't be able to help me..

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

My stomach is also slow, but

My stomach is also slow, but it has improved some. It may be slow from hydrogen sulfide from bad bacteria in the gut. I wear a nitroglycerine patch and take molybdenum to help my body process the H2S. I just read that yucca may also help, but that may not be available where you live. I plan to try some. I hope all the things you are doing will help. What kind of "friends" would tell you to go to a shrink for a physical ailment?!

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

I take Probiotics and

I take Probiotics and Acidophilus (or what the name was), plus Juice+ both green and red. B-vitaminsi, D-vitamins and C-vitamins too.. Plus Omega 3/6 and Q10.

So guess I should cover the basics.. Thus, not needing similac (wich seems to be a baby-supplement ? )

Will look into Betaine HCL..

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

Yes..the Betaine HCL will

Yes..the Betaine HCL will give you hydrochloric acid into your stomach if you are not producing enough and that makes the food digest more easily and quickly. Make sure you eat right before or after taking it. You don't want to have too much stomach acid and nothing for it to work on.  Follwo directions.

I'm sorry you feel so alone with what you are going thru. Generally, people just do not understand or try to understand anything that has to do with chronic fatigue and all of the symptoms that go along with our illness...many of us look healthy. All too many doctors throughout my life have tried to give me antidepressants or told me to get more exercise. People think you're crazy, lazy or both. Often even people in our families just don't understand what we are going thru and that it is very real. Do you get enough fiber in your diet? There are fiber in capsules or things like Benefiber if you feel you are not getting enough.

 Things will get better.  stick with it, Eirik

Best wishes,

Astrodiana

Hi, Eirik, I  am glad to

Hi, Eirik,

 I  am glad to see you are still going strong on the antibioticsi. With your stomach issue, have you tried using digesive enzymes?

The ones that have been helpful to me are, Similace and Betaine HCL. Using these enzymes aide in better break down of food for easier digestion. 

You can order them online.

 

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Hi, thanks for your

Hi, thanks for your comments..

I guess some of the symptoms my come due to die-off.. As I usually feel better in muscles, body and head when/if I move around a little.. Thus making it easier for the body to transport the endotoxinsi out.. ?!

But that a backside of that, is that the fatigue gets worse every time I move around a little.. So I must balance it very carefully..

I got worse after drinking a couple of glasses of CocaCola too. So that won't be repeated...

I have been checked for celiac disease, and found ok.. Also had 4 tests for Lyme/Borrelia.. Since I was bitten by a tick once..  (But I know that many labs can't get that test done correctly or good enough.. So I'm not sure.. )

Other viruses I don't know about.. Since I can't afford a 600USD bacteriological/microbiological test..

 

Eirik

2x100mg Doxyi every day, 250mg Azith 3 days/week, 2000mg NACi daily, Vitaminsi B, C, D, and Multivitamins/minerals, Q10, Omega 6/9 and probiotic supplementsi.

EirikYou are probably

Eirik

You are probably entering the hard time.  Mine lasted several years during which I got very, very bad.  It is now in my past.  Stay with us - take your supplementsi, your abxi, eat very well, and know that someday, probably soon, what we are doing here will be common.  We all have "friends" like that, who will not learn. 

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Eirik~I'm sorry for your

Eirik~

I'm sorry for your illness and your bit of despair that goes along with it.  I can relate, as I'm sure many here can.  It is possible that more than one pathogen or problem is causing your illness.   Since you mention stomach issues, have you checked for enterovirus?  www.enterovirusfoundation.org     Gluten intolerance and/or celiac disease?

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<