Hi everyone,

So, after about a year of beating around the bush and thinking CFSi would magically disappear if i just willed it to, I started the CAPi this past weekend with 200 mg Doxyi per day. thought it would be a good time to record how I feel. I'm not sure how long it takes people to feel effects from the Doxy, and I know it differs from person to person. Thus far, I just feel basically like a huge stress response has been set off in my body, and it does not feel good.

My worst symptoms in the past few days that are new:

October 9th will be six weeks out from my last 2 day pulse of tinii.  I've been feeling better but have still been experiencing some ups and downs.  I'm making plans to begin my next pulse and so far, this is what I've done:

1.  Increased thyroid meds - this was thought to have been a cause of my 3-4 lb weight gain along with added fatigue.  My sleep/wake cycle has improved although I can't say my weight has budged, yet.  

In the winter of 2000 I came down with appendicitis.  I went into surgery and things got better even though I was quite weak.  Things were supposed to improve after the surgery but did not.  I had a lot of pressure in my abdominal area and pain.  They did an MRI I believe and found that I was bleeding internally.  Apparently a blood vessel was punctured during surgery.  I had cysts on my ovaries drained during surgery and it might have happened then, who knows.  Anyway I went back into surgery that same week and got a drainage tube placed in my abdomen.  My hemoglobin was at 7.5 and at 7 they give you a blood transfusion.  Thank goodness I didn't have to go that route.  I lost about 15 lbs in two weeks.  I couldn't eat because the morphine shots gave me nausea.  Easiest 15 l

Probably one of the hardest things for me have been not being able to go to school and "make something of myself".  Also watching my body go down hill physically hasn't been easy.  I can't wait to lift weights again and get rid of the flab.  I wish I could do something about it but with CFSi physical exercise is difficult if not impossible and my muscles are so weak that it wouldn't do much as far as weight loss or firming up anyway.  I only need to lose about 10-15 lbs anyway but being a young 29 years it is hard to see other girls in shape when I would like to hit the gym but can't.  It is also difficult to say that I am a home health aide because I could be so much more than that and I don't even want to bother to explain myself when people ask about what I do.  If anythi

I took my first Azithro on Fri the 3rd.  Yikes it cost me $90.  Ouch!!  I might look on the internet to get it cheaper.  Thank goodness it's only M, W, F.  Anyway I do have Candida/IBSi whatever you personally want to call it.  So I'm used to stomach pain and discomfort.  However on Sat I had a horrible stomache ache all day.  Also partly on Sunday.  Now sometimes I don't even realize I have a stomach bug until days later when someone else comes down with it in the family because I always blame it on my Candidiasis.  But now I'm wondering if it was the azithro, a bug, or just my candidiasis.  I'm taking another one on Monday night so we'll see if I have a stomach ache on Tues.  If it was the abxi, that will be great because something is reacting to the abxi. 

Just a quick update.  Just got off the phone of Dr AW's clinic.

It appears that in the blood sample that Paula produced a couple of weeks ago, using his dark filter microscope, he found BORRELIA!

Paula was bitten by about half a dozen ticks in the summer of 2004!

When she first became bedridden, she was tested by the NHS for Lyme but nothing was found.  I wonder if the little blighters have been forced out of their slumber like a massive kick up the arse, by the Doxyi and Roxyi! - I bet if we did the NHS Lyme test again, it would be positive - I wonder if it is worth asking?

Prior to any abxi or Samento, Dr AW using his blood test, only found CPni in Paula.

Paula's Daily Schedule.

As promised, here is Paula's supplement and CAPi schedule.

Please have a look at the below and let me know if there is anything anyone thinks we may be doing wrong.

As an aside, she is allergic to Soya and is both gluten and diary intollerant.  She is also Glycemic, which means she currently can't take glucose, but is instead replacing it with d-ribose (which currently doesn't seem to be helping from what I can see).

We have Colestyramine on order and hopefully Paula will be trying it very soon and replacing it with the Charcoal.

I began my CAPi journey on August 10th.  It was such a great feeling to actively be doing something that would not be treating the symptoms but actually get to cause of the illness. 

I've now been on doxyi for about a month and a half and wondering if I should be starting azithromycin.  Due to the replies I've gotten from others, I've decided to begin the next step when I see my dr on Oct 2nd.  So far I haven't had any problems with doxy.  I've been taking Lactinex, a strong probiotic, and it has helped me tremendously. 

Medical school may still be in my future if I can get back to a 100%. I had to give up the dream 8 years ago when my CFSi started.

I hope that I am not asking too many questions today;-)

Anyone experienced Flush ( red skin) and muscle pain in the upper part of the body? Chest, shoulders, collar,neck? I get this from time to time when I feel bad. And it is sometimes accompanied with extrem exhaustion, lack of oxygen, shivering, feeling toxic like under drugs.

Wondering if its more zytokine endotoxini mediated or is this porphiria? It feels awfull and is not nice . It feels vice like (like in a bench vice) or is anxiety a better formulation?

It usually starts with the flush of the skin.

Wondering if anyone experienced the same? 

A couple of weeks ago, she suffered from a couple of crashes, whilst on her daily trip to the bathroom.  Luckily her daughter was in the house both times, to help her back to bed.  At that point we decided to get a commode put in the bedroom.

Over the course of the 2 weeks, she was able to use her usual jars by the bed for the "No.1" and the commode for her daily "No.2".

About a week ago, she started taking a 3rd dose of powdered activated charcoal (2 teaspoons at a time).  I have ordered some Colestyramine to try at a later date, when it is delivered.  We are doing this to try to bring down her porphyrin levels as much as we can.  Her porphyriai symptoms included:-

Terrible fatigue

Presently I have been on Minocycline for over two weeks. The inflammation has been increasing in small increments daily. I was not keeping on top of the load of toxins/porphyria with my usual doses of glucose, Emergen-C and charcoal. So a couple of days ago (9/20) my recent supplement order was delivered which included some Yaeyama Chlorella to try out. Only after two days of use before lunch I am impressed of how effect it seems for me. It is the perfect pre-lunch mopper. Which is a time of day I really need help. It is when it is not convenient to take any of the other moppers I use. But to be clear, I definitely will continue all of them at the usual times I take them as well.

A word of encouragement?? I haven't checked in for quite a while. Been doing ok, but have been undergoing Vitamin C IV treatments for 4 weeks followed by Rifampin 150mg twice a day for 4 days.  My energy is zapped and the Rifampin feels like poision to my body.

Hi,

Paula's porphyriai symptoms (or are increased CFSi symptoms) have got a lot worse these past few weeks, where her fatigue is concerned especially. (Had to get a commode chair yesterday)

Louise pointed me into the direction of Resincolestiramina (brand name of Cholestyramine, manufactured by laboratoriosrubio in Spain).  I have tried many times to contact the manufacturers via email and telephone, with no luck.

Does anyone know if this product contains soya as Paula is severly allergic to soya?

Thanks in advance,

Mark

Well, I don't have to tell you that I am pleased things turned out pretty good for me. The first few days of Minoi were misery but then things began to settle down. The last couple days I haven't had to take extra Emergen-C but I am still stiff and achy. Plus my eyes are so red some folks at the store look at me as if I am crying OR stoned... sympathy or disdain. Of course either way I don't appreciate the vibes so quickly move on. Also I have daily coughing sessions and about gag at times trying to break loose the mucus stuck in my bronchial airways. (sorry) Sometimes it just feels like a hair stuck in my throat. It is worse for me in the mornings.