Nervous to start protocol

[Kat1]

Hello,

I am new to the group and I have just schedules an appointment with a doctor in California to start the AP.  I live in NY so this is a long way to travel but I believe he has alot of experience with this so I hope I have picked the right person.  I must admit I am a bit nervous to start the protocol so any positive feedback would be much appreciated.

This post moved to General Discussion area where it will be able to receive responses. Personal History and Progress section is for author's journal notes and cannot generate replies. RBFV

[Maz]

Hi Kat,

If you don't mind sharing, what is your diagnosis? Any reason why you feel nervous in particular?

Sounds like you're off to see Dr F in Riverside? He's one of the most experienced in the US. If you need someone closer to home to help out, there may be an AP doc nearby to help you over the blips, but you'll have a very good start with Dr F!

It's all a bit nerve-wracking in the beginning. I remember how hard it was to just trust that everything would work out and whether I was making the right decision. The early months can be especially trying, wondering when the herxing will end and things will start to pick up…but in most cases they do!!! 😀

All the best for your trip to sunny CA! Hope you get some time to enjoy the beautiful sunshine and ambiance of it all!

Peace, Maz

[Kat1]

Hi Maz,

Thanks so much for your reply.  I have been diagnosed with Undifferentiated Connective Tissue Disease, another way of saying I have a disease of some sort but they can not figure out which one.  I am a bit nervous to start the AP because I was sick for many years before I had this diagnoses and the few doctors who didn't say it was all in my head said systemic candida, which antibiotics are definately not good for.  I look foward to seeing Dr. F and if there is anyone in the NY area you know of for follow up I would love any suggestions.  I actually read a post you had written saying you had some new tests come back with some positive results, congrats that is so nice to hear.  I hope you continue to improve you seem to be a very encouraging and positive person, and a definate blessing to this site.

[stwig]

Hi Kat,
Coincidence….. yesterday was my first appointment with Dr. F in Riverside. He is a very kind man, and my appointment was very through. He took a great deal of time going over the x-rays and blood test results with me. Of course he cannot offer any guarantees, but he offered me a lot of hope that we will keep trying different approaches until I get to the end of this dark tunnel.
Dr. F and his staff will take as much time as you need to answer questions and provide information.
I am glad that I decided to make the trip up to Riverside.
Best wishes,
Starla

[Kat1]

Hi Starla,

Thank you for your reply I am glad to hear your appointment went well with Dr.F. I am looking foward to going to see him soon, it is nice to hear he is a doctor who really gives you the time as I have found this to be rather rare.  I noticed on your post you have been treated for leaky gut and are on a gluten free diet, has this helped your symptoms?  I have read alot about the leaky gut and was wondering if you think  there is a link between that and the RA?  Good luck with Dr. F and be well.

[MaryP]

In my case, I went from first symptoms (tingling hands, puffy fingers and feet) diagnosed as UCTD to SD in about 6 months. I was told that UCTD could be explained along the lines that my body hadn't made up it's mind what it was going to do. I could develop lupus, SD OR, it could just go away. I put my money on the go away development, but after developing raynauds, I researched like crazy, found AP, and decided that's what I was going to do, after meeting some folks on it. Four months later, my SD developed and I had a doc and treatment plan ready to go, thanks to research.

I don't have any regrets at all, as I am getting better, but just wonder if starting AP 4 months earlier would have made any difference.

[Kat1]

I know it is very hard to avoid thinking about what ifs.  I don't know if things would have been different if you had started the AP four months earlier, but what is most important is that you are seeing some improvement now.  I really hope that you continue to feel better.  Thanks for replying.

[Kim]

Late stage SD people have had phenomenal success on AP so there's always hope, but of course sooner is always better.

Welcome to the board, Kat.  I hope your visit with Dr. F. will bring answers to your many questions and you can get started.

Take care…..kim

[Maz]

[user=1201]Kat1[/user] wrote:

I look foward to seeing Dr. F and if there is anyone in the NY area you know of for follow up I would love any suggestions.  I actually read a post you had written saying you had some new tests come back with some positive results, congrats that is so nice to hear.  

Hi Kat,

Not sure where you are in NY, but will send the full listing for this state. I also have an LLMD list if this would help, as there are some excellent Lyme docs who also employ anti-fungals in their protocols. People who get thrown into the Undifferentiated or MCTD catagory may also have Lyme as a culprit, especially living in New England and the tri-state area. Just let me know if you'd like this list, too.

Will send you a PM with this info. Just go to the top right of this page and click where it says “You have 1 new message waiting.”

Thank you for your very kind message, too! 😀 It has been a 3 step fwd and 2 step back dance all the way, but I'm having great days now and an increasing number where I no longer need to even take my staple 2 Advil gel caps a day. I wake with very little or no morning stiffness and all my RA blood markers are normalising. It's been a long 2.5 year battle, but I'm almost 'there' now. I wish this for you, too…hang in there, it's quite a ride, but AP works wonders! As Kim said, longstanding disease or severe can take a little longer, but it's worth all the effort in the long run.

Peace, Maz

PS Sorry it took so long to reply…I've been away for a couple days and playing catch-up here.

 

[Kat1]

Dear Maz,

Thank you for your reply.  I was very fortunate to have the opportunity to speak with Cheryl today in regards to Dr. F.  She was very helpful and so kind. Cheryl had wonderful things to say about you.  I have to tell you I am amazed at all the kindness I have recieved in the few days I have joined the group it is so comforting, so once again thank you.  I actually have seen Dr. G and unfortunately he was not much help to me although I am sure he has helped many others.  I am in Westchester so I am only about 20 minutes from the city.  Any doctor referrals are much appreciated and I will look into the other doctors you have suggested.  I am glad to hear you are reaching the point that you are feeling relief I can only imagine how difficult the past two and a half years have been.   It is so great to hear that you are feeling better I am sure it will continue.  Once again thank you for your response and be well. 

[Kat1]

Hi Kim,

I have seen many of your posts on the board and I just wanted to say hi and thank you for your words of encouragement.  I will keep posting after my visit with Dr.F, there seems to be alot of lovely people on this board.  I hope all is going well with you.

[daver]

Hello, Maz and kim et al:

I'm not used to using a computer, so I cannot figure out how to post questions on this Bulletin board. I'd like to ask for General discussion about my Dad. I tried last night, but I don't know if it got on.

(82 yr old diagnosed atypical RA. Dr. rec. Methoxy. what do we do?????)

Please tell me how to start.

:?:?:?  Thanks, daver

[Maz]

[user=1211]daver[/user] wrote:

Hello, Maz and kim et al:

I'm not used to using a computer, so I cannot figure out how to post questions on this Bulletin board. I'd like to ask for General discussion about my Dad. I tried last night, but I don't know if it got on.

(82 yr old diagnosed atypical RA. Dr. rec. Methoxy. what do we do?????)

Please tell me how to start.

:?:?:?  Thanks, daver

Hi Dave,

You did a fine job posting here. If you ever want to start a new topic, then you just go to the main discussion board page where it lists all the threads (http://rbfbb.org/view_forum.php?id=1) and you will see at the top, under where it says “Logged in as Daver” a little tab saying, “New Topic.” You just click on that and a new message form will pop up, including the option to add a subject header for the new thread you're creating. You write what you want to say and then click the send button. It should start up a whole new discussion thread for you. If you have trouble finding this button, let me know and I'll try and explain a different way.

Really sorry to hear about your Dad, Dave…poor guy, not easy being hit with these diseases at any age, but especially tough at 82. The best place to start is to read up on all the material on the main Road Back website and to also get a copy of The New Arthritis Breakthrough by Henry Scammell. Once you've read the material and made an informed decision about pursuing antibiotic protocol (AP) for your Dad, we have a list of AP physicians by state that we can send you. If you want this list right away, let me know where you are and I will send you a private message with this list.

Here is the Newcomers link to get started and also the Education link:

http://roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/8.html

http://roadback.org/index.cfm/fuseaction/Education.main.html

The physician packet under the second link above is packed full of good information about the protocols used for AP.

In general, the earlier one can get started on AP, the swifter the turnaround. As your Dad is so early in his disease, he stands a good chance of doing quite well.

Hope this helps to get started in your researches, Dave. Lots of very experienced people here, so it's worth visiting regularly and also reading past posts to get acquainted with the workings of AP. The search box above is also very useful for specific questions, if you type in key words. If you have any trouble finding anything, let us know and we'll do our best to help.

Welcome, Dave! You must be one terrific son to be so proactive on your Dad's behalf and doing what you can to help him!!! 😀

Peace, Maz

 

[Maz]

PS. Dave, you and your Dad may also like to watch this archived footage of Dr Brown describing AP:

http://www.vimeo.com/3154687

Peace, Maz

[Rosey UK]

Aww Your brilliant Maz!!!!

And you did great at the convention!!

love Rosemary XX

[Author]

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