ADD ON: 01/05/09 - Last night I finally added on the second daily 100 mg. of Mino. Yay! I am at the full doses of antibiotics heading for my first pulse ... maybe by Feb. will try it. I wanted to make note of my initial responses so far. Overall pain levels decreased. I was able to get out of bed more easily. I had hoped the anti-inflame properties of Mino would do this and I hope it will last. Legs and feet are still bad this morning making walking more difficult but they are much more tingly than painful. The down side is it was harder to stay in sleep mode last night possibly due to my heart palpitations are back caused by skipping heart beats. (Thud on restart then race to catch up) My mind is more racey yet fogged in and feeling on edge. My left side sore throat is worse this morning. ouch. My lung congestion increased and I am in a very unlady like state of frequent hocking up large globs of tan crud which until today were yellow. (sorry reader for totally grossing you out. Be forewarned my blog is total reality) So I believe the added Mino to the prescribed dose is the right time for me. The benefits are quickly apparent.
Thank you so very much JimK for the various themes. When I updated my signature today I changed mine to the marineblue. My eyes just love it. So soothing with the gray/blue colors. Thanks so much for all the time you put in to help us out. Dude! You Rock!
EDIT: 01/02/09 - I had forgotten to mention one other abnormal result on my lab tests. That being my protein level is elevated. Upon reading about it as well as the D-dimer the obvious cause I would venture to say both are related to is inflammation/chronic infection. Obviously I am working on the infection with the CAP but I need to stay on top of lessening the inflammation. At times it feels somewhat extreme so I must not be keeping up with it using the moppers, etc. Perhaps adding the additional 100 mg Mino later in the day will help as it does have some anti-inflammatory effects. I will try also increase in anti-oxidant use & moppers, etc.
UPDATE: 01/01/2009 - The past week or so the lung congestion began to lessen finally after a horrid time with it in Nov-Dec. On top of increasing the azithromax dose I caught a respiratory virus. Between my sinuses and lungs I produced enormous amounts of thick mucus that broke any record in my personal history. ewwwww. lol (sorry)
Recently things seemed to shift. Other than the widespread body mylagia, fatigue, brain fog the focus has been on my left foot especially. The ball of my foot along with my big toe became numb. As if swollen so that when I step down on it that area feels thick. However upon examination there is no visible sign of swelling. So it tends to shift my thinking to that it must be nerve related. As the week progressed to the swollen sensation add some tinglings as well as some sharp stabs infrequently. My right foot, same area, is a tadbit tingly now too. When I got up today the soles of my feet seemed a little sore too. I will admit we are a little bit concerned as these are MS symptoms, are they not? Or can anyone with Cpn have the same? Let us know if you know please. Further education needed if possible.
My legs have been much more inflamed as well with a sensation of burning through out the day. The compression hose are helpful but do not eliminate all symptoms of course. Days I stand more often they are mandatory to eliminate pain. When I put on the hose I notice mulitple very tender spots like bruises with no discoloration in my ankles and legs.
I have also had to increase my usage again of the Emergen-C to keep some disturbing heart pressure and arrhythmia in check. I am using Selsun Blue shampoo to try to keep my scalp sores in check. It dries them up nicely. But I notice at other times when I use my variety of good quality salon shampoos & conditioners to keep my hair healthy the areas affected begin to flare up again.
The left side of my throat is constantly sore but especially bad during sleep at night and when I first wake up. Mornings are rough all around with symptoms at there worst. I don't go out often but certainly never in the morning. I often have diarrhea 1-4 times inspite of good probiotic use.
By afternoon I usually feel much better especially after a whirlpool bath or FIR sauna on alternate days. We are wondering if I should now increase the 100 mg. of minomycin to the prescribed dosage of 200 mg. now? Perhaps it would be beneficial rather than more difficult for me.
I have been working my way up slowly and just finished my first month of the azithromax M-W-F dosing. Unfortunately it seems to have given back to me the chronic fatigue tendency so I have not been as active this month. I do push myself at times to get my work done and let other things slide so I can lay down. But having said that, I must be doing OK as I am keeping up. The holidays, the snow last week and perhaps the economy have slowed things down. I definitely am having lack of motivation issues too so the timing could not be better. Any input from any of you here is most welcome always. Thank you in advance.
My latest labs: All good with two exceptions.
1. D-dimer is positive again. Marked high elevated to 5.35 mg/L. (Note: This is mg/L not ng/L)
Tells me the nattokinase/serrapeptase did not do the job. So am back to using Bolouke lumbrokinase again as I have had good experiences with it in the past.
2. Liver enzymes are slightily more elevated than last test so AST/ALT are slowly climbing up.
The good news is my vit D 25 has reached a healthy 55. My fingernails are much stronger now I have noted. Instead of paper thin they now are growing faster and thicker. Yay!
UPDATE: (12/11/08) - Hi all! By Dec I began to realize I would be better off now taking Azith MWF as prescribed. No longer was the Azith so overwhelming but seemed to actually be more beneficial than not. So on 12/1 - I began taking it MWF. What I found that first week I took it I felt better the day I took it than the day I did not. Then I came to my first weekend and by Mon (12/8)I was a mess. I was relieved to take another Azith dose as my symptoms and pain levels were terrible. (among other things it feels like tendonitis of almost the entire body) Of course, another reason I was a mess Mon is I caught some wicked viral cold/flu crud after the T-day holiday which has laid me low every since. I am limited on my energy these days so have not been able to maintain my online ventures. I have not done one iota toward the Christmas holiday coming either. And I do not have what it takes to do more than fret for short periods until I am too tired to care again. I am not depressed but I have little motivation when I feel this crummy. But am thankful I felt well enough Tues morn to do an early run to the lab for a blood draw. By afternoon was wiped out and miserable again. My physician RX'd me some compression hose for venous insufficiency so picked those up too. Very nice for my legs/ankles are feeling better with them on. This cold/flu virus is keeping me down & out for now but hope to be up and running soon. DH is a couple days ahead of me and seems to be gaining back his energy now. In the meanwhile am working hard resting & thankful for any spurts of energy. Thank you for reading my blog update. Slainte! MM
Monday (11/11/08) I took my second Azith tablet. Same thing as before occurred but a degree or two worse. Thinking that has to do with the overlap from the first dose since I didn't wait two weeks for it to totally decay. This time the inflammation around my heart area became more than a niggling soreness but thankfully still not anything beyond tolerable. A bit of the heart arrhythmia kicked up as well but nothing scary. This round I also ended up with what I call a CFS sore throat... glands sore & a bit knotty. Fingers and wrists are almost useless with pain when I first arise in the AM but after taking supplements, moppers and ibuprofen they begin to loosen up and audibly snap with use. At least the pain level is bearable by then. Lungs wheeze a tiny bit when I breath in and I am still having productive coughing in the AM.
I am waiting to see if the same pattern unfolds. Hoping by the weekend I will feel ready to go. We need to visit my ailing folks as I have been too sick to travel since the first of Sept. Feeling somewhat better today so am thinking their is a strong possibility I can. Sorry I haven't posted much but being wiped out is hard work. Then when the extreme of feeling good hits I keep busy catching up. Crazy life! But am so grateful I am on this treatment. I can feel good things happening between the battles. Hang in there and keep plugging away. Slainte! MM
Monday (11/03/08) I took my first Azith tablet. Soon I began sneezing and next I began to feel a heaviness like chronic fatigue symptom doctor called adrenal insufficiency from my past diagnosis. Also I had an increase in lung congestion, swollen feet and ankles, overall joint/tendon/muscle pains and stiffness, increase in hot flashes and a mild headache. But by the end of the week and weekend I was feeling "GOOD". "ENERGETIC". So much to my relief I spent a lot of the weekend working in the sunshine in our gardens catching up on chores that have been waiting for me to get done before winter embarks upon us.