Progress update (1.5.09)

Submitted by Miying Meng on Wed, 2008-11-12 15:33

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) Wink 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? Undecided 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. Smile 

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! Cool

 

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.

Miying        

I'm glad to hear that you felt better by the weekend.  However, something you said didn't sound right to me.  Are you only taking 1 tablet of Azith each week?  If so, why?

The normal dosage on the CAP is to take Azith 3 times each week on Monday, Wednesday, and Friday.  Over the weekend, you don't take it but the levels in your bloodstream remain high enough to combat Cpn over the weekend, especially if you continue taking other drugs that work in conjunction with it.

The symptoms you described sound to me like endotoxin reactions and possibly some porphyria.  Increasing your moppers should help with that but realize that it is normal and in time will decline in severity.

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

Hi MM,

Me thinks... you may need to take more, not less, Z, along with more moppers.  The Zith is not as immunomodulatory as the daily dosing of mino/doxy but it is to some degree taking it MWF is my understanding.  

The "decaying away" as we were taught on that "other" protocol is more likely to be as John says, porphyria symptoms.  So I would agree to up the moppers and down some more Z, unless of course someone else gives you some better ideas.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

John- I think this is MM's "go real gradual" approach a la Dr. Stratton in adding the azith. Note she said she didn't want to wait two weeks (Dr. Stratton has said do azith and wait two weeks in one of his interviews). Let's see what she says!

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

I understand your points John & Reenie. They are well taken & I very much appreciate you posting. However, it is as Jim K suggested ... I am very much deliberately taking a cautious approach because I have such strong reactions to antibiotics and supplements. If I approach this treatment this way I find I am able to avoid getting too sick with either porphyrins or endotoxins. Dr. Stratton has recommended that folks like me can start with Azith once every two weeks and as it becomes tolerable increase the dose to the Mon, Wed & Fri schedule you both very accurately suggested is the protocol.

Ya know, I was doing so great last weekend I thought I would do better this time with the Mon. Azith so I took it one week earlier than I had originally planned. It is OK as I am dealing with it, but in hindsight I should have stuck to my plan. Not reacted with my emotions. Oh well. Image removed.

I do regularly use moppers such as glucose, Emergen-C, B-12 sublingeal tablets, and charcoal. Tonight I stepped into my FIR sauna for the first time since the end of Aug. When I started the Mino I had daily fevers until the end of Oct so naturally avoided it. Anyway, the FIR sauna really loosened up my stiff joints, tendons and muscles tonight which feels very nice. I just hope they aren't worse when I wake up. Always a gamble. But I will just hop back in there or my whirlpool tub and loosen up again I guess. I am blessed to have these available to me as they both do help.

It is amazing to me the variety of symptoms that come and go from my taking antibiotics. Really stirs up the hornet's nest it seems. Just trying to kill all them suckers before they sting me seems to be tricky. That is why I don't want to shake the nest too hard all at once. Trying to keep it a controlled situation while systematically decreasing their population. Image removed.

I have in the back of my mind some comments I read awhile back here. That at around the three month mark or so folks seem to have a big die off. Just mentioning it as I will hit 3 mo. first week of Dec. Not sure what it will mean for me ... maybe nothing ... but I don't want to be slammed down in Dec. I will continue to do this treatment slowly & with caution. I will also increase my moppers as you suggested John & Reenie. Good advice. More is better when it come to moppers!

Whatcha save'n 'em for anyhoo? Image removed.   MM

 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hi MM,

I know you need to take it slowly, like Speedy...  Image removed.

MM, as I was journaling today I realized I've neglected the IR Sauna treatments myself since the summer and I need to get back to it.  I wonder if it would help my achy joints and sore knee.  Thanks for mentioning it. 

I figured you were being cautious, but, just keep in mind that sometimes less is more and more is less.  In other words, well, you know what I mean, I think!  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Speedy is my example for sure Reenie. Thanks for bringing him along. I will take it slow and steady and get there when I do. <wink>

Hope the sauna helps you with your achy joints and sore knee. So far I sure feel better. But AM is the true test.

Exactly ... I knew in "my knower" I needed to start the Azith even if I couldn't do the full dosing yet. You can feel things going the wrong direction I guess you could say. But sometimes it is hard to know for sure until you do something. Trial and error.

I am my own best experiment. Image removed.  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

When Ella started the protocol, we added the doxy gradually to its full dosage before adding the Azi, one tablet a week for four weeks.   Eventually we switched to Roxythromycin because Azi was causing her to be severely depressed.   It took about three months for her to get to her full doses of the bacteriostatics and another 3 months before she was able to start taking flagyl in small doses too.   It was nearly a year before she was able to do the full pulses.

So it appears that the more your body is in crisis the longer it is going to take to get to the full protocol.   

MM I suppose that Roxy might be more controlable in your situation, because like doxy/mino you take it twice a day every day so you could add the doses more slowly than with Azi, but under the care of Dr Stratton you are in the best hands...

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

MM,  I too went with the longer approach when I started azith. My doctor followed the one tablet for one week and titrated slowly to give my body time to react. It took me a month to get to the full dose because of severe side effects. We all need to function in some small capacity and in my case slow and steady seems to be working.

I was looking forward to having an appointment with Dr.Stratton, but he no longer sees patients, but I was able to talk with him and he explained, to not skip any of the antibiotics in each step of the protocol .I couldn't handle the NAC went to the Doxy. and Azith. He informed me to get on the Nac even if I  had to stop the other meds.

Long story ....take it at a pace that you can tollerate but don't give up until you get to the full dose, then move to the next phase. 

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Thanks very much for sharing your very interesting stories Michele and Horses12. It is always good to hear that others have struggled in like manner so you don't feel like such an alien so to speak. Gives me more confidence. I will keep everything you said in mind. Thank you.

Ooop. You misunderstood that I have Dr. Stratton for my own personal physician me thinks. I am not so lucky! I merely was referring to one of his written documents quoting his view on the subject which is anyway quite good enough for me anyday. <wink>

My lung congestion seems to be decreasing substantially now which is quite pleasant for me as you can imagine after two months of it. The swelling in my feet and ankles is very slight now too. Just mostly feels like burning around my ankles. The nerve and/or vein pains have increased dramatically though overall and I still suffer very stiff, painful, and achy joints, tendons, muscles, tissues, vessels, etc. The FIR sauna gives me a good measure of relief so I am using it as needed. I did not get the same increased energy level for the weekend this time. I was hoping it would be my pattern. However on Thurs. I managed a much overdo day trip to see my family so it may have altered things. I have been able to keep up with my daily chores for the most part but need more rest stops than before. Also my gallbladder started to act up just a little bit so I am once again taking the gallbladder/liver cleanser that seems to help me. I may also add in tumeric again as I think it also helped. I do not like having a slightly queasy tummy continually which for awhile I was totally free from so was able to eat more normally. My scalp sores really flared up this week & became quite painful for a time even though I have been using grapeseed extract to try to keep them subdued.

With all that said ... I can feel the antibiotics via my immune system working in new areas. For example today my thighs are my most recent new target. I am much encouraged that the battle is raging on because I believe I am making progress. When I look back a year ago or even six months ago I know I was spiraling down into a scary place just getting sicker and sicker. Of course I have a lot of uncomfortable symptoms going on now. But please don't anybody make the mistake of thinking I am sicker now than I was before. I like to think I am in a healing crisis now as my immune system is working hard to rid me of all these bad bugs parasitising my cells. No more free lunch for you suckers!

Rock'n my way to freedom ... I ain't gonna take it no more! The Mino and Azith work powerfully for me. I will keep these in my arsenal for now. I am doing OK with it ... am just slowly turning up the heat. Slainte! MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hey MM,

I just couldn't resist the rockin' comment!  

Image removed.

BTW, do you remember the song, "Wipe Out"?  The title of this thread reminded me of it.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

LMHO ... Funny you should bring that up .... the song "Wipe Out" was going on in my head during that time frame.

I just love that rock'n little kitty ... thanks for the cheer Reenie. Made me giggle & smile real big! Image removed.  So cute!  Rock on gf.  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM,

I just HAD to do a little research during morning coffee (go figure) and this is what I discovered...  

Did you know that "Surfer Joe" was Side 1 of the Safaris' single recorded back in 1963 and that "Wipe Out" was the flip side of that single that the DJs liked better and gave it more air time, making it a hit?

And here's another link.  I think this is the actual band (or part of it) years later! 

Ok, so much for Wipe Out and dancing "the shimmy" (do you remember that one?) but this really brought a smile to my face and I'm feeling much better now a few days after my latest tini pulse.  Thank you, gf!  You do rock!  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

That was a blast from the past! Thanks ... now I have that song back in my head again. LOL  Oh well, could be worse. <wink>  Yeh, looked like some of the original band members plus kids and grandkids. Looks like it's a family affair now & they are having good fun together.

Thanks for sharing the fun stuff. I do remember all of it vaguely. Although I enjoyed surfer music to a small degree. In hindsight I guess I did not become seriously obsessed with rock music until bands like Cream, The Doors and Led Zep appeared on the scene. Still among my favorite bands.

So glad to hear the latest tini pulse is going well for you. It will be a long time before I get there at this rate. But as long as I am preventing the bugs from reinfecting or multiplying and/or killing them off I don't mind so much. Just take'n one day at a time. Rock on! Image removed.  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hi MM,

WOW... a great blog update!  This is really nice to read like this and great to refer back to.  

If you decide to increase your mino to 200 mg, I would suggest you take it in two doses which might help give a little more anti-inflammatory effect and to prevent too much reaction from once/day dosing as has been reported. 

I usually take my 1st dose in the morning before breakfast and vitamins along with thyroid and then take the 2nd dose with my evening meal.  The 2nd dose is when I take Zith on MWF.  

As for your nerve pain, I get lots of nerve pain too in my extremities.  I'm not sure how much is from my illness alone as I feel like you in the mornings; stiff, achy, etc, but usually feel better by the afternoon. 

I feel alot weaker than I have been in the past years and like you, wonder if some of my symptoms are related to early MS.  The good news is we will nip it in the bud, regardless of the cause.  

I'm going to try to do more although it's hard not knowing if pushing is helpful or harmful at times.  Image removed.

My scalp has sores on it too, which are psoriatic lesions.  They were completely gone for awhile before the severe relapse I had before CAP while on the MP.  They are much smaller now as are the lesions which returned all over my body, but they are there and hurt at times.  

I've been using a little topical steroid solution on the scalp and some Dovonex on the skin lesions which is an rx for synthetic D3.  My Vit D is hovering in the mid 50's like yours too.  I think that's helpful and obviously it's not suppressing our immune systems (like we were told elsewhere) as we are both having plenty of reaction from CAP.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

hi there,

my head gets sores on it too & I have found it is linked to candida.  I am having a battle with it right now & my acne is in flare as well.  I have also been getting more sweats & flashes - infection! candidia, yup me thinks. 

I asked on here for something topically & Daisy directed me to grapefruit seed extract.  It helps dry them up.

we do walk a fine line here with the abx & acidophillus balance!

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

GSE is good stuff Ruthless!  It's antifungal, antiviral and antibacterial too so who knows? 

For me the sores or psoriatic lesions are tied to inflammation and reaction as I have more die off.  They simply die down on their own or improve much when I apply topical D3.  Red would prob like to hear that!     Image removed.

Dr Teitelbaum says scalp sores are a sign that you have some sort of infection that would probably improve with either antibiotics or antivirals.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hey my faithful friend Reenie. Image removed. Thanks! Great to hear from you. Can I admit to you I feel invisible in here. Image removed. Must be my reaction to the drugs. Image removed.

I love your idea using the mino in two seperate doses. The one in the evening may help with the inflammation build up. But since Z seems to cause a lot of my inflammation would it not be better to stay with the AM dosing? Image removed.  I may need to experiment a bit with that one, huh?

LOL ... I crack up now everytime I read about suppressing our immune systems with vit D. Laughing at myself mind you. How did I ever belief that one? DUH! Can I attribute it to "brain fog" or was it pure insanity? Image removed.Image removed.  On the other hand it makes me angry that other sick and trusting folks are being led astray. MS, cancer, etc. could be a life changing result.

Geez... With the MS type symptoms appearing lately it really shakes you to the core. When I walked out to the garage this morning my left foot tingling and feeling swollen, feeling weak as a kitten and overall feeling ill... I thought to myself ... "what the h*ll is going on with me?" Image removed.  Must be having a bad day, huh. So I will spend the rest of it in whirlpool bath and bed unless I have a shift. That is the thing isn't? Some don't takes us serious cause we can be moaning in the morning and somewhat normal by evening. Crazy life! Image removed.

Well, enough venting for now. Everybody here is in the same boat. Like singing to the choir isn't it? Image removed. 

Hmmmm. I may be fighting some depression so again it is past time to crank up the moppers & some Metallica. I love their new CD ... the song, Broken, Beat & Scarred has been my theme song lately.

You rise... you fall... your down & ya rise again... what don't kill you make ya more strong. Image removed. Show your scars!

Sending out love to all my fellow suffers. Image removed.

Peace.  Slainte!  MM

 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hey MM, 

On the D note, did you read the new paper Red posted a link to? HERE's a link to the topic just in case you missed it.  Cannell and Hollis say 55 - 70 ng/mL will help prevent or possibly treat fatal cancers.  (page 10, last paragraph of the paper)

It is mind boggling now and very sad, IMO, as I read that paper to compare how many ex MPers I know that now have rare forms of cancers and other abnormalities. 

Very sad that we actually fell for that nonsense!  It's like Cannell says on the Vit D Council site, (paraphrasing) 'like drowning in the desert from drinking water' when you weigh the positives against the possible negatives of taking Vit D supplementation.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Hi Ruthless1. I did try the GSE idea as you mentioned it before to me. It did help somewhat drying them up. But it burnt like h*ll in the raw areas for awhile. I should have had my nurse practioner take a scraping when I was in last time. They can figure out what type of infection from it sometimes. oh well. Like Reenie said ... Dr. T has said and somewhere else I read it too ... if you have a bacterial infection you may have scalp sores. So I suppose that has a lot to do with it since I never have had them until the past couple years.

Hmmmm. I don't think I have a yeast problem. I take 3 different probiotics every day and eat yogurt. But I will do the spit test in the morning and see how that goes. Don't want to overlook anything. Hope you get things back under control. I know what it means to walk the tight rope.

I been having the hot flashes too. Plus I could smell myself for a couple days inspite of bathing ... not an unpleasant odor ... but something like fried rice. Ha ha. Can't quite describe it. Whenever I have a die off this happens to me. I ran out of my vit D and had bought some that are 200 IU stronger than what I am use to taking. I think it set off some more kill.

Thanks Reenie for the link to the vit. D article. Good to know that I have my 25 D in a good range now. I have not had a chance to read the entire article yet but will try to get it done when I can concentrate for a longer period of time. Say ... Is vit D topical an over the counter product? I may want to try that out on my scalp as well.

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM,

The topical D cream I use is an rx called Dovonex.  I don't use it on my scalp because I think it would be too greasy for my hair so I use a topical scalp liquid containing cortisone which is also an rx called CLOBETASOL PROPIONATE Solution .05% (generic)

Wow, I didn't realize "More than 100 million people worldwide have psoriasis."

And I also didn't realize that Dovonex also comes in a scalp solution.  I may need to try that!   Thanks, MM.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

MM- Your description of the burning, aching leg pain is very familiar to me from the early days. Dr. Stratton said to me that Cpn EB's obey the law of gravity like everything else, and tend to accumulate in tissue of extremities particularly legs and feet. I hit a critical mass somewhere in the first months of treatment where I got a lot of generalized leg pain along with specific joint pain (hips, knees, feet) when pulsing. Sure tells you where the bugs are.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim,

I recall reading the gravity comments before and so I wonder if this is why for the first time in my life I have psoriatic outbreak all over my butt.  Ok, now I said it!  Image removed.

It seems that the lesions are a sign of inflammation under that area of skin affected, maybe due to cytokine release in the joints and tissues the skin covers.  I've always tried to figure out why I get outbreaks in certain areas and at certain times.  

So, is my brain infected and I'm having reaction to CAP, hence the scalp sores? Image removed. 

Most people with psoriasis get it on their knees and elbows.  Nail involvement (which I get from time to time) is an indicator of psoriatic arthritis, not sure why, but that's what I've been told. 

I've also started getting it over my sacrum (lower back) and have had hip and lower back pain during die off which makes me think that's what's happening with me and CAP and my butt now. Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

This morning the 'spit test' showed me I do have some yeast trouble but not very bad at this time. I need to keep on top of it for sure! You'd think with three different probiotics daily & yogurt I would be fine.

Thanks Jim K for sharing your experience and knowledge about the leg & feet pain, etc. due to Cpn following gravity. For years I have rotated sleeping positions due to pain levels increasing where the blood pooled. So it makes a great deal of sense to me. Trouble is at this point I can't find a position that something isn't affected. So whatever hurts the least at the time I sleep on and it is sure to become the most painful area eventually. Anyway, it is reassuring for me to hear you went through some similar experiences. I keep hoping I will be done with painful symptoms soon. "Follow your dreams"  Image removed.

Hee hee ... glad I could help Reenie! Image removed.  Seriously, thanks for the links. I will go read them next. So sorry to hear you are suffering so many areas of psoriasis outbreaks. You know with our eyes, sinuses, scalps affected by Cpn it would not surprise me that some of the vessels in our brains are infected too. Somedays it gets to feeling puffy in there or other times tingly or even jabs of pain. The last time I had a MRI of my brain was in 2002. I did not have lesions showing then so I hope not now. I don't care to repeat the process as I am even more claustophobic now. Image removed.

I have one bottle of Minomycin left that I am working on now. Last week I ordered Doxy to save money Image removed. in these slow economic times. When it arrives I will try it out before I use up all of my Mino. Just in case I can't tolerate it and I need to go back on Mino. I purchased the capsules of hyclate Vibramycin (generic) My Mino is good until 2010 so I will use it up later if I tolerate the Doxy. It will be an interesting experiment to see what the difference will be for me. If any differences?

Has anyone taken both at the same time? I mean like 100 mg. Doxy in the AM and 100 mg. Mino in the PM or visa versa?

 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hey MM,

Dare I ask... what is the "spit test"?  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

The spit test was discussed here before... :)

http://www.cpnhelp.org/help_with_yeast

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

The spit test = 1 clear clean glass of water on your nightstand. When you wake up you spit in the water. Then you watch it for several minutes. If you have multiple long tendrils slowly streaming to the bottom of the glass you have a lot of yeast. If less & shorter ones then your yeast not so bad. If spit just floats on top with no tendrils forming action then no yeast. Image removed.  Cool huh? 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Wow!  I never heard of that!  I'll have to try it... maybe.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

that spit test is tre cool!

Reenie, I hope you butt feels better soon!Image removed.

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Ruth,

Thanks.  The butt lesions sort of come and go although don't go completely.  I use Dovonex (topical rx D3) on them and that seems to help but I think until I clear the infection and underlying inflammation I'll continue to have lesions on my body.  Image removed.

I remember talking with Dr Stratton before starting CAP and he said psoriasis heals from CAP so I'm hopeful.  I will say I had some really large areas of skin involvement on my lower legs (must be the gravity thing) which are now just small spots so something is definitely changing/improving.  (Dovonex might be helping too)

I think the reason for the "butt involvement" may be that I sit alot now so that would be a low gravity point and it might be a new area of tissue finally being exposed to healing beneath the skin.  

FWIW, I tried to recall exactly when the butt began to break out and I think it was when I had that first highly responsive tini pulse back in October.  I've had periodic outbreaks of psoriasis during times of increased inflammation during abx treatment so I think that all fits.  Image removed. 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Embarrassing to admit but I suffered from boils on my torso and behind for the last 15 years (about the time I started suffering other symptoms that can now be attributed to CPN). Doctors were always puzzled gave me a single antibiotic it would seem to help for a few weeks and then they would come back.

Since starting CAP they have completely healed and I've had no new skin issues - so I have my fingers-crossed this lasts. 

In regards to the spit test - I'm game for any non-painful test!

CPN, EBV, HHV-6, CMV - Biaxin 500mg/Doxy 100mg twice a day, NAC 600 mg, Acyclovir, all supplements, natural hormones and BP meds.

Dear Jeanneroz - fellow spit test fan ... thanks for sharing your link.  ;)

You rock! Image removed.

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

ecarey - gives hope for all of us with skin issues. I have mentioned the scalp sores but also every once in awhile I get what are like bites on my butt or torso. Since we don't have any bugs in our house and DH never gets bitten I am beginning to believe they are coming from within me. They most often occur when I am having an immune system response so it does strengthen my belief. Also I find it quite remarkable that the use of antibiotics pushes foreign matter out from within my skin. I have had old scars from injuries flare up with a sore bump followed by foreign tiny bits of plastic like matter emit from this area then heals for good. I have had single size of grain of sand deposits of hard material surface and come out of my skin on my neck, face and lips. It is all so weird for sure but I think it means I am healing.

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Reenie ... I really think your analysis of your psoriasis is spot on.

(Do you know that the way I remember how to spell psoriasis is by thinking P-SORI-ASIS.  he he ... gf now I will think of your poor sore butt) Image removed.

Hoping you will find relief from it soon.

You know my legs get worse if I sit around too much... my office chair especially so PCing always increases symptoms in my legs ... my wrists too. I need to get some ergonomic stuff! 

or .... more frequent walks around the house.

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic.