Brutal Illness

Submitted by des12 on Mon, 2009-08-24 13:19

I hope I'm posting this in the right place. I have been telling my story to every type specialist in the books until now. I'm praying my new docs are on the right track.

I've been so sick I was close to going into Hospice 4 yrs. ago. I have been to numerous rheumatologists and no one wanted to put the Vasculitis stamp on my disease. Started in 2001 with septicemia, then went out to have a gram negative germ that Inf. dis. Unit said they had never seen before and were going to send it to CDC. they never did, 2 yrs later adter battling fatigue, vomiting, nausea, fevers, eye and head pain, bleeds behind the eyes, loss of vision, horrific muscle spasms, joint pain, abdominal pain and I could go on, but that's enough for one day. I was put on high doses of prednisones and cytoxan which is a chemo drug. My sed rate jumps to 110 without the prednsone. My BP also rises to dangerous levels, 206/125, Heart rises to over 120-150 and I'm in serious trouble. The only thing that took it down was the prednisone.They have torn me apart with numerous biopsies, temporal artery, liver, mouth, lung. Each showed inflammation, the lung biopsy had the pathologists baffled as they said there was evidence of bronchiolitis and obliterating pneumonia, but they couldn't make that dx as it is usually seen in the lower lobes and mine was seen in the upper. They even sent it for dept. review and every doc has been baffled. I had to change PCP's due to my long time doc leaving and it seems the new doc ran the Vit D levels and found they were down to only 5, so he promptly ordered me 50,000 units a week? Then on to a Neuro Opthamologist who took 40 vials of blood last week.there he found high levels of fibrinogen and I want to say my CPN level was 1024. He said it was way out there. He put me on Azithromycin 250 BID. I have also suffered from serious eye infections since they touched my left eye for cataract surgery in April. I had Iritis and Vitrous separation and am now told neuritis. I am now also diabetic from all the weight and prednisone. I didn't ask the Neuro Op guy too much as I think after so much suffering I was glad someone said there was something seriously wrong with me and is paying attention. I also was afraid of adding anything to what he is saying to not throw him off track. he's still researching and putting all of the strange symptoms and records together to come up with a good diagnosis. I ran myself ragged for thes past 8 yrs. with docs, tests and reading everything I could get my hands on.

I have alot of questions like am I contagious with this CPN? Is it an old STD? Can I pass it to my daughter in law who is expecting? Is there anyone else out there who has had autoimmune similar to mine? They did say early on I most likely have Fibro also and they threw the Lupus and Sarcoid idea around too after looking at CT scans of my lungs, as they show Interstitial lung disease. That is it for today, I don't want to confuse people, I want to share my story as I am praying this will be the answer I have been searching for for yrs. I welcome any input suggestions from anyone who has ideas or anything to add to my Oddessy.


Is the Vit D of 50,000 units D2 or D3? Look at the level - (this is not a "put-down" of your doctor, who is on your side, but simply a statement of fact - doctors have too much to do and are waaay behind on Vit D research).

Thanks to our Red, we have gained incredible knowledge about Vit D. Read some of the papers on D and you will quickly see what I am asking. Maybe someone else can tell you better which to read first. This is so important.


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

Wow. To answer your questions, no you're not contagious (if you indeed have a CPn infection), it's not an old STD, you are unlikely to pass it - more knowladgeable folks will be able to fill in details.

Welcome - hope you find some answers here!

MSi d/x 1/2000, Male, 46, out of work since 5/2004 due to MS. I'm 7 - 7.5 EDSS. Started CAP protocol 5/5/2009. 

Yes,  this is the place to start sharing your story with us.  This is your personal blog space and you can start a new page from time to time as you desire or need.   Many of us also have blogs that you can read when you have time.  If you click on our usernames in a post you will come to a location from which you can find individuals blogs if you want to read more about the users who make comments to your blog or questions.   Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

No, you're not contagious unless you're in the middle of an active lung infection and spewing droplets and sneezes everywhere. If that happens, take the normal precautions of keeping away from people, cleaning up your own tissues and personal space, etc.

Now, send your doctor (politely) to this site.  It will help both of you.

50,000iu of vitamin D3 sounds like a lot right off the bat.  You may experience reactions from the vitamin, much as you would from going full blast into this protocol.  Don't be alarmed, and by all means, don't quit taking the D3.  You may have to start it much more slowly, though, say at one or two thousand iu a day.  If your reactions are strong, tell your doctor and ask to reduce the D3, then work on increasing it slowly, over time. 

You sound like a great candidate for this protocol, but don't get goofy.  I know I did when I first started.  I was so panicked at my MS diagnosis and wanted to 'fix' myself NOW.  I pestered poor Sarah, David, Rica and LifeontheIce mercilessly.  Now I know I got sick over a lengthy period of years and years and waiting a few weeks to learn about the treatment and implement it was a drop in the bucket.

You've got years of treatment ahead of you.  Take your time, learn, read everything you can here, and do it right.  Patience will help immensely. Image removed. There are a lot of us who've been where you are and have turned it around, so you have lots of support and resources available to you now.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

P.S. The fact you commented about this being 'an old STD' says you haven't read the Getting Started pages. Check out the tabs at the top of this page and go to Getting Started, then read and RE-read that information. It will take time to sink in and you're not the first to come here and be overwhelmed by the amount of information available here.

No, it's not an old STD. It's not an STD at all. This disease is called chlamydia pneumoniae and should not be confused with chlamydia trachomatis, the STD. Think 'pneumonia'; this disease is a lung infection that spreads throughout the body if the immune system doesn't properly dispose of it right away.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thank you all for your advice and comments. I looked at the bottle and it says Vit D 1.25 mg softgel, take 1 per week. I think it is 50,000 units per . Yes I am cautiously optimistic as I've been dissapointed so many times and have been dragged through unnecessary ordeals from many doctors before this. ther is barely a doc around who understands Vasculitis and maybe it has been looking like that but is something else.