Hello, I am new here

Submitted by Janja on Sat, 2009-09-12 00:39

Hello, I am glad I found this amazing site (thank you, Ken). I just finished reading Kim's blog, and I am amazed and awed. Although I was on the Vanderbilt protocol for 3 years, I never noticed such amazing improvements--that could be because my disease is a bit milder?

My bladder does not function (I have been self-catheterizing 5 to 7 times a day for years), I have numbness and weakness in my hands and legs, balance problems, and, most of all, extreme problems with fatigue--8-9 hours of sleep every night plus two naps a day is about right for me. 

Wow, now that I have put my symptoms down in black and white, my condition doesn't sound so mild! ;)

I have been pondering "what I should do next." I will continue reading the blogs of people on this site and I know I will learn a lot.

 Jan

Do I have to add this other comment for my signature to be seen? :)
RRMS, dx Dec. 1991. Betaseron since 1996. Vanderbilt antibiotics clinical trial 5/2006: Rifampen twice a day, Azithromycin MWF, Flagyl 1 week out of 4. Discontinued Flagyl 10/2008. Completed Rifampen/Azithromycin May 2009.

Hi, Janja....

Just wanted to say welcome (guess I'm not the only one who can't sleep tonight!)

It appears your signature is showing :).  

JeanneRoz

 

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

Janja,   WELCOME,WELCOME ,WELCOME Ken has given me the skinny on how you both crossed pathes. I assure you,you will be so happy you came here. you will get all the direction and support you need. Your signature looks fine.  prepare to be overwhelmed...Image removed.  Kim

RRMS since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyl Copaxone, Avonex, Novantrone, Provigil, 5gm NAC, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

Hi Janja,

My daughter has a similar experience to yours.   I am urging her to continue with the protocol as there is some evidence that there is another infection and a number of different problems going on for her.   She is constantly battling bladder infections and also is aneamic as well as hypothyroidic.   I think that other conditions need to be sorted out before much improvement can be expected with the protocol.  Do you have other conditions that might be holding you up?

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

Janja,

I have been following along for many many months now. I still am and gain much needed support and understanding from  the truly wonderful, devoted and knowledgeable people on this web.

Welcome-You won't be sorry.

Oh ya,obsessiveness and a form of paranoia is also here. I and my doctor know and constantly tell me that these attributes aren't necessarily bad, however, are GOOD.

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

Janja, welcome.   Hoping to hear more posts from you.   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

Thank you so much for the warm welcome, you guys.

Michele, I can't think off the top of my head what other conditions might be holding me up. It sounds to me a bit as if you're saying: "After three years on the protocol, I would expect you to be more symptom-free, something else must be holding you up!" ?

Hm, this possibility that it "should" have done more for me is pretty darned exciting. I am going to see Dr. Sriram at the end of October, maybe I will talk to him sooner. Meanwhile, I will read all your posts and blog and see what more you say about this.

Wow, this is all very intriguing.

Back to reading! :)

RRMS, dx Dec. 1991. Betaseron since 1996. Vanderbilt antibiotics clinical trial 5/2006: Rifampen twice a day, Azithromycin MWF, Flagyl 1 week out of 4. Discontinued Flagyl 10/2008. Completed Rifampen/Azithromycin May 2009.

Well of course there is a lot of value in not getting worse but not knowing your history the only thing I can comment on is your present condition and the fact that you have stopped taking flagyl about a year ago, which I read to mean that you had stopped because it was not doing what you were expecting it should.

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

Hello Janja and welcome

I'm new here so I'm no expert but have you thought about adding LDN to see if that helps? I take LDN as well as the abx and it has only given mild improvements but I've met some people who have found it very effective indeed.  Just a thought.  I look forward to following your journey.

Agatha

RRMs diagnosed 2008 (symptoms for 20 years). Also sinusitis, recurrent UTIs, IBS  Wheldon protocol began 31/7/09 Doxy 200mg, Azithro 250 3X week.  Supplements B12, D3 Vit C, multivit, Fish oil, probiotics, NAC, vit E, turmeric

Welcome Janja.

There is a subtle point you bring here, Sriram really doesn't have an opinion about supplements.  You'll find that folks here do.

BTW, THANK YOU!  THANK YOU FOR PARTICIPATING IN A TRIAL OF ANTIBIOTICS FOR MS!!!  THANK YOU SO VERY MUCH FOR YOUR CONTRIBUTION TO THIS RESEARCH!!!!

Sriram only recently put Kim on high dose vitamin D.  There is a lot of posts here about that.  He also put Kim on pyruvate; to be combined with the azith.  He really didn't care much for NAC, but you'll find that folks here swear by it.

Welcome to Cpnhelp,

Ken

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

You are right, Michele.

Michele, I read your blog about your daughter (and yourself). I am amazed at the courage and love of both of you. And I can't get over that she went skydiving!! :)

Thanks for the suggestion, Agatha.

And thanks for the appreciation, Ken! That is very nice.

RRMS, dx Dec. 1991. Betaseron since 1996. Vanderbilt antibiotics clinical trial 5/2006: Rifampen twice a day, Azithromycin MWF, Flagyl 1 week out of 4. Discontinued Flagyl 10/2008. Completed Rifampen/Azithromycin May 2009.