blogs

Our Journey Begins

I want to begin this blog by thanking everyone who has helped my family to gather the information that we felt was necessary to begin this process. You are truly some amazing people, trailblazing and courageous!

A bit of background. It is my husband who has MSi and he was diagnosed in May 2004 at the age of 40. Prior to his diagnosis and only with hindsight, we agreed that he had minor symtoms for about 10 years prior. They were the usual ones-occassional color changes in one eye, floating black spots when we jogged and minor numbness in one side of one hand. Again, all were transient and events that did not grab our attention at the time.

After a sinus infection that would not quit and a course of abxi and oral steroids, my husband was referred to an ENT. By this time he had developed a strange feeling in his face which was accompanied by a euphoric feeling that came and went rather regularly. This prompted the ENT to comment that this sounded neurological and referred Jim for an MRI. The rest is history, the MRI showed multiple lesions consistent with MS, a spinal tap was performed (we still don't know what it revealed because the neuro said it was "negative" which meant Jim must have MS) and we were given a choice of CRABS.

Taking a break for a bit

After several months on the David Wheldoni protocolsi for CPni, I can tell that it's working. I keep improving, yes, but I ache all over. As I can't take most pain pills due to my messed-up esophagus, I've tried to just tough it out.

As Ann Raynd suggested, even Atlas shrugged. I need a break. I'm *temporarily* stopping doxycycline, roxithromycin, Flagyli and NACi. I'll re-start them in a few weeks, after I've had a chance to sleep a full night without writhing in agony. I'll still take the Zocor, as this helps me rebuild and it's done a stellar job on my cholesteroli, and the antibioticsi for a UTIi, and of course the estradiol and Prevacid, but that'll be all till later this month. I'm also dropping the DHEAi, becase I'm seeing re-growth of body hair and a renewed interest in sex, neither of which appeal to me.

New Years resolution to post progress.

Hi all, I have been  a member of this site since it first began but I haven't  posted to the blog. I am on Stratton protocol and am a patient of Dr. Powell.

I am still sick but have seen some remarkable progress on the antibiotic protocol. I wish I had kept a journal but I was often just too sick when I was having significant herx reactions. It is my New Years resolution to began a blog here I want to keep track of progress on the antibiotic therapy and I am going to try to go back and present some of my history. It is a long history as I have been ill for about 20 years. I hope I can help others with my story.

Marie AKA Gail 

KK2's Protocol Update

Happy New Year everyone!  Great news!!

Just a quick update:  My Azithromycin arrived, so am back on the Doxyi/Azith regime.  Azith. days are always more energetic for me.  Also started with an anti-oxidant preparation called "emergen-c" last week, once daily.  It has C, B1, B2, B3, B6, Folic acid">i, B12,etc..and 6 minerals, plus Alpha-Lipoic acid.  Also began taking Vit. D3, and Kyolic garlic.  Wow!  I feel great!

Improvement in diet and following the abxi protocol has become easier than ever to stick with. 

Good things:  Spasticity has improved dramatically!  Last night I did not need my 25mg Trazadone for sleep!  I am playing the piano more often-fingers more flexible/pliable.  The unreal feeling has decreased.  Have successfully tapered Zoloft down to 100 mg/day--for over 2 months now!  I have more stamina now to stand/cook in the kitchen.  As the spasticity decreases, my gait gradually improves.  Never quite got to the cane stage, but I lurch a bit, especially after sitting for too long.

Best of Health in 2006

May each of you have some sense of improvement in your well being may it be even ever so slight..One's health is truly one's life and breath .. struggling may not be good yet to get to where you want to be in life does have it's difficult moments of time for each and every human being..Take care all and thank you for all that you have given of yourselfs here to help others..

FEELING TERRIBLE!!!!!

I have been on INHi for three weeks now the beginning I felt TERRIBLE with a capital T.  Then I started the third week and started to get a lot of neurological stuff going on.  SO NOT FUN!!!  Anxiety, foggy brain, coordination problems, concentration problems, not sleeping well, etc... So I called Dr. Powell and he said that I needed to back off the INH and "clean up" the endotoxini load.  Well the last three days I have laid off the INH and I thought I was going to die yesterday.  Okay maybe that is a little dramatic, but no really I felt like I was going to die.  I feel better on the antibiotcs than off, but feel terrible on the antibioticsi as well.  I have done everything under the sun and to be honest I don't think there is anything I can do, but suffer it out.  Does anyone know if getting on anxiety medication will help me with the anxiety????  I think for the most part I could tough this out, but the neuro stuff is WAY TOO MUCH!!!  It's funny I am also finding that old wound sites that I have had beforehand are starting to hurt.   Years and years ago I worked for Albertson's and I used to work in the "milk box" a lot and I got a mild case of carpal tunnel in my left hand it hasn't hurt in years and all of a sudden it's been hurting like crazy.  I also have been getting really sick to my stomache everytime I eat it's like I feel worse.  Does this ever lessen or get better because I don't know if I can do this much anymore if it's this severe (neuro stuff)?  I keep trying to look forward and remember that eventually I am going to get better, but I feel like I am drowning.  You know you try to prepare yourself for the worst case scenario and I definitely was not prepared for feeling this bad.  Anyone have any encouragement it would be GLADLY accepted and appreciated!!  God bless...

Pulsing Flagyl

After almost two months on Flagyli, I'm finally going to take a break for two weeks, per the protocol. Hopefully, this will let me feel a bit better for a while. It's been mostly aches and sniffles here, but that's getting old :(

Meanwhile, I'm still improving daily, a little at a time. My typing ability is much better than even a week ago. Also, I'm now taking NACi twice daily, for those keeping track.

Now it begins . . . perhaps!

My CFSi Dr. is starting me with a serologyi test for CPni -- IgGi and IgM -- and will be getting backup from Dr. Stratton as needed. I really appreciate the two Drs. stepping up like this -- what I've read here and experienced over the past 18 mos tells me they're unusual.

 Dr. S suggested starting with serologyi. I suppose if it comes back elevated, then it's an easy sell to start the protocol. So, if it does come back elevated, it (treatment) begins. I kind of hope that CPn serology comes back positive. Hopefully the beginning of the end for this bug and its sequelae.

 If not, well, I'll just take the next step, which will be deciding on a next step, I suppose. My story with CFS (at least that's what I think it is) has only been a year and a half -- nothing to most of you, but plenty for me!

Rehab

Rehab is something I've wanted to start a thread on for some time. I hope others will add researchlinks they;ve found to this so we have a good collection of material to ponder...

As nurse I was taught that people who have strokes mst be aggressively rehabed inside of three months because no more ground can be gained after that window. Also we were taught that brains were plastic (changeable) only in early childhood and that later injury was unrecoverable where in a child it might be. These things are now known to be 100% WRONG.

Here is a link to an interesting review ( a paper which includes no new research but a lot of literature collected on one subject with commentary about what it means)http://stroke.ahajournals.org/cgi/content/full/31/1/223
that brings us up to speed on current findings and understanding in the arena of rehab. Of note, we all have stem cells in our brains which are competant, we all can crete new nervous tissue, and we need stimulation to create these new connections (ever watch a baby learn to walk or sit or eat?)and repetition.

EDSS 6.7 to 2.5

MSi lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibioticsi, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSSi scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMSi.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

Dealing with the aftermath

Having beating ReA Reactive Arthritis (Reiters Syndrome) with the aid of Cipro, Biaxin, Zirto, Pristeinmycine, etc. I think I must have used most abxi. Cipro and Biaxin were fundemental for me however. Anyway Having beating the aggressive arthritis, and the mamouth of other symptoms, (whole body was infected and organs were taking a pounding), I have been struggling on almost halfpar. I have continued to suffer with colon problems, eye trouble, low immunity, CFSi, anixity, etc
 
Recently I started a course of Antifungals. Fungizone (oral) first, and a month after adding 250mg Lamisil a day. Now 2 months in I can attest that all my symptoms are improving. I am gaining ground daily and I sware that its a profound effect.
 
I would strongly encourage others that have been using abxi to consider antifungals too. 
 
I have never made much progress with Difulcan, and cannot say it worked for me (in the small doses I tried), the problem I see with Difulcan is the price.

Recently diagnosed

My husband was recently diagnosed with Cpni after udergoing a battery of tests for the symptoms he was having, i.e. fever, chills, uncontrollable coughing, mediastinal inflammationi, feeling as if he had an unbelievable cold & flu.  He is currently only taking Doxcycline, 100mg x 2 a day, which he has tolerated from the beginning.  However, in reading the info on this website, it seems he might benefit from a multi-antibiotic therapy (I think his count (?) is really high).  If he hadn't just gotten out of the hospital after a week, I would consider readmitting him because he feels so sick, and this from a guy who was totally in shape, jogging & weight training just weeks ago.  His symptoms generally get worse at night (wheezing, shortness of breath, coughing, etc).  Additionally, I was wondering if anyone has ever heard of Cpn causing mediastinitis?

Small med changes, and a thought?

OK, I dropped the tryptophan, and added NACi, 500mg, and DHEAi, 25mg, both taken at night. I also take one "non-aspirin" pain pill if needed when my shoulder gets too sore. Got a silly thought here: Has anybody else had gingivitis? I noticed that, every time I got IV steroids, my gums quit bleeding. That was part of why I was taking so many anti-inflammatories - I could judge when the dose was high enough each time I brushed my teeth, and that told me when I'd hit the level of the steroids. Chalk that up as an experiment with inconclusive results :-/ However, all the antibioticsi I'm now on have completely stopped my gingivitis, and my MS is improving. Could there be a connection between gum disease and MS?

It's good to feel bad.

After reviewing this site, I've changed from 400mg Flagyli twice a day, to 400mg Flagyl three times a day. Now, my unusable shoulder aches all day, instead of only in the morning and night. My nose is also alternating between stuffy and runny.

These are good things. They're a way to know that te ABx are working. Another good sign is that I'm constantly improving, a little each day. I can flex my toes, slightly. I can type (still left-handed only) almost all day with few pauses. I can get my evening pills together in nearly the same time as my caregiver takes. Slowly but surely, I'm improving.

Also, stuff to add to my medecine list: glucosamine< 750mg and tryptophan< 50mg. I'll be adding DHEAi 25mg soon, and NACi as well - have to have Vikki get those bottles out again. I'm also taking 1mg 17beta estradiol daily, and 20mg Prevacid, which has helped my swallowing problems considerably.

Finished at 7 Days of Tinidazole

Finished this Tinii pulse after 7 days of it. Thought I was going to do at least a couple more days but seemed to reach a personal limit of feeling "enough!"

Interestingly, I had significantly less joint ache this round, no sacroilliac pain, no hip joint pain, only mild aching in knees and ankles. Mostly I just felt tired, a little sick, little appetite and kind of generally crummy. This is a far cry from the misery and pain I've had on earlier pulses, but did convince me that pulsing is the right thing for me-- a body needs to recover from this stuff!

 It also convinced me that not only do we need to bring the cryptic load down to tolerate this better, and slowly  over time, but that there seems to be some optimal tissue concentration level reached after about 3-5 days which, at least by subjective symptoms, seems to reach deeper layers of tissue like joints, deep muscle layers and so on. I suspect this is true for nervous tissue as well (recall reading an abstract on metronidazolei needing 3-4 days to reach adequate killing concentrations in either brain or cerebrospinal fluid).

Syndicate content