Which Dr. to use for IV AP and moving forward?

[magsmc]

I am scheduled to see Dr. S. in Iowa later this summer for IV antibiotics.  I have RA for the last 15 years, with some permanent damage.  Upon reading the Scammell book, I also ran across the names Dr. M. in Illinois (who know has a quite popluar web following and focuses a lot on diet and stress as well), and Dr. T at Harvard.  I am wondering if I should consider one of those drs. instead of Dr. S., and would like to hear of other's experiences.  I guess it somewhat bothers me how nonchalant Dr. S.'s office was in scheduling my visit and I wonder if they will be “involved” enough for me.  I don't just want this one visit to go well, I want a dr. who will stay involved with me moving forward.  I like the information about eating according to metabolic type, and stress techniques, because I know I can use help there, so wonder about Dr. M. but also am wary because the web site looks a little like heavy marketing.  As for Dr. T. I just keep having his name come up.  I'm not even sure if he still takes patients, but I do want to go to the best, and Boston is a nice place to visit if I have to go somewhere.  I have 3 young kids, failing health, and desperately need to be with someone who will get me through this.   Any advice out there? 

[GJH]

I saw Dr. T for over one year and I must say that i was dissappointed in him. Just about every patient he puts on 200 mg Minocin every day regardless of his/her condition. He doesn't do Clindamycin IV. On a few occasions during flareups he tried to have me take MTX or Arava. I heard only good things about Dr.S, so I would stik with him if i were you.

Best, GJH

[whaleharbor]

I just went to see Dr. T in Boston and was actually quite pleased.  He's a different sort of person…odd in a way.  Very, very humble.  Very nice and pleasant.  Very unassuming.  He was reassuring.  He actually took quite a bit of time with me and made sure to schedule my return visit during a nice time of the year (I live in Florida).

He is very willing to work with another rheumy, ap doc, internist or whatever would be best for me.  He told me he didn't believe in diet regimens per se for RA patients, but that I could stick to my gluten free if I thought it was working for me…so if you looking for a diet person…he may not be it.

I chose him because he is affiliated with Harvard and because he also prescribes MTX, Arava and other drugs.  I wanted a more “mainstream” opinion from a doc who also prescribes AP…I just felt that was the best choice for me at this point right now.

As of right now, I am pleased with him.  He was everything I was looking for…again…based on my current needs and sensibilities.  Frankly, he was someone that I could believe in…and right now, I need that.

I know that he has a great track record.  I know Richie for one has seen him and has been “cured” if you will by him (Richie has SD).  I know that he treats Kathleen Turner.  I know that he had a recent article written about him and one of his patients in Woman's Day.  I know that he has been quoted over and over in the Arthritis Breakthrough.

I told him I was unwilling to take MTX or Arava or anything else beyond at this time and he told me that “he works for the patient” and that he'll do whatever needs to be done to try to make me better on my own terms, if possible.  I like that.  He covered all of my questions with me and was thorough in his examination of me.  But he's definitely more “mainstream” not “new age” at all…if that is what you are looking for…I don't think he would fit that profile, IMHO.

For that…I see an acupuncturist…who is helping me tremendously also.  Basically, I've got a whole team assembled at this point.

I do think that you need to always be your own health advocate.  I do think you need to find someone that YOU believe in.  Trust and belief is a very powerful healing force.  I also used to be a shrinking violet…not anymore…so I go in prepared with questions and an agenda to get through (with any doc) so that I am sure that I am getting their attention and the best possible care.  PLUS I have my own primary care physician…kinda overseeing it all.  Good luck making your choice.

— whaleharbor 

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Cheryl F]

If your question is, as the title of your post suggests:

“Which Dr. to use for IV AP and moving forward?”

Then, Dr. T in Boston and Dr. M in Illinios need to be crossed off your list.  Neither of these doctors will do the IV therapy.  I know of several SD patients who were seeing Dr. T and wanted the IVs and he referred them to Dr. S in Iowa.  Dr. M in Il is not even doing AP therapy anymore.  From reading his website you can see that he is still very much a beleiver in the infectious cause of Rheumatic illness, but he now favors natural and dietary change treatments to clear up the infection.  There are other doctors in the US that will do IV therapy.  Dr. F in Riverside CA is one choice but that may be even further for you than Dr. S in Iowa. 

Hope this information helps some. 

Cheryl Ferguson

[superperroRA]

My experience with Dr.T was also disappointing. I saw him 4 times. If you want someone to prescribe minocin immediately, on the first visit, he will do so. This is very useful. However, after the first visit, his many shortcomings start becoming obvious. He does very few tests. I never had a visit with him that lasted more that 15 minutes. I confirm everything GJH said.

[magsmc]

Thank you everyone.  It sounds like I need Dr. S. to get the IV clindy.  Since my disease is so long standing (15 yrs.), I think I need it to jump start things.  I am interested in the metabolic diet issues…therefore would be interested in hearing from any of Dr. M.'s patients, since that might be something I could look into…of course the cost might be an obstacle!  I am also trying to be open minded to everything, my “traditional” dr. is saying I HAVE to use Embrel or methotrexate or both, because of the damage I have and the current inflammation in my next, which she says could lead to a big issue.  I am now worried about whether the AP will kick in soon enough to avoid these meds…my appt. with Dr. S. isn't until July.  Thanks again for all the support here.  I don't have it elsewhere so it is wonderful.

[JBJBJB]

[user=411]magsmc[/user] wrote:

It sounds like I need Dr. S. to get the IV clindy. 

I went to Iowa to see Dr. S last month. The nurses were really kind and friendly. There is one nurse, who does a lot of insurance filing, also answers the phone, perhaps is the one you referred to. She is just an as-a-matter-fact person. She is pretty friendly once you talk to her in person. I would not let her to interfer your decision to seek a good doctor for your health.

Dr. S. normally spends an hour to listen to you and to talk to you. He is a very kind and humble man. If you want to have a specific diet plan, you may want to write down your questions.  Also, I would suggest you sign up with Life Extension Foundation. They have professionally trained advisors who can help you with diet and supplements.

Good luck to you,

JB

 

[magsmc]

Thank you, I have been reading your posts and you offer me some reassurance.  I am a little worried and nervous because I have to go to Iowa by myself, so it's nice to read about what to expect.  For now I am still planning to go in July. I guess a part of me is afraid to hope, if that makes sense.  I do get hope from this board, though, and that's a wonderful thing!  Best to you, keep us updated on your progress…

[JBJBJB]

You will need hope and faith on AP treatment. Do not be afraid. Life itself is an adventure and big gambling. You are smart to weigh the advantages and disadvantages between doctors and make a decision to move on.

We never left my kids (12, 14 1/2) since the day one they were born. This Iowa trip was the first one. We put our two kids in two different friends' homes. I had a lot of anxieties. When I got back, kids told me they wished I could have stayed in Iowa for another week. :crying:  It is the first time I realized “I NEED TO TAKE CARE OF MYSELF!!!!!!!!!!!”  Without my good health, I won't be able to give my children a happy life they deserve.

While you are there in Ida Grove, if you decide to stay at the Super 8, go to Motel Deluxe to see if you could find any AP patients. These people would love to team up with you to go out to eat and do things together.

Stay away from all kind of seafood and drink a lot of water, take your probiotics…. this will avoid possible complications caused by IV.

For emotional support? Take your lap top with you (with wireless ready), chat with us…. this wonder board is your back bone support!!!

You will do very well, I am sure.

In Health We Cheers!

JB 

[Fran]

Magsmc-  I, too, was in your position last summer.  I could hardly function and properly parent my four young children.  I made the decision to go to Dr. S and with the help of my in-laws (who watched my young children) and my own parents (who took me to Dr. S) I was able to make the trip.  My husband had to work so could not join me.  It was the best decision I've made for my particular situation. 

Dr. S spent a tremendous amount of time with me.  I responded to the IV therapy very quickly.  Dr. S is available by phone after the treatment, and I have called him numerous times to consult and just get his advice.  I have never felt rushed off the phone or have never felt he was anything but interested and wanting to help me.  I continue to use his services by phone and I continue to improve.  The difference in me this summer compared to last summer is HUGE!  I did start AP early–within a couple of months of onset and I did do the IV therapy early too.  Perhaps that is what helped me greatly.  

I didn't think I could leave my children to do that therapy and had never been gone from them.  But with the help of many, I was able to.  And now, a year later, I can honestly say it was the best decision I made as it has given my kids their Mom back!

[Serenity]

I can only speak of Dr. T as he is the only AP Rheumy I have had.  As others said, Dr. T does not do anything special beyond prescribing mino 200mg.  He is strictly using the MIRA trials and will not consider things like pulsing.  He also doesn't necessarily believe in the mycoplasma theory but feels that minocycline acts more like a DMARD (I directly asked him this).  If you do not stabilize or have controlled symptoms, he will prescribe the heavy hitters.

My 1st appt. with Dr. T was wonderful but after that, I'm lucky to get 5 minutes with him.  I basically see him to get refills on my mino prescription and that's it.  If you are looking for a Rheumy who will discuss issues like diet, overall health, etc., he is not your man.

If my condition worsens, I will definitely make my way to see Dr. S or another doctor who will help me try other alternatives (IVs, diet change) before presribing a DMARD.  For now though, I am doing well and since I live near Boston, am ok seeing him a few times a year for my prescription.

Good luck!

[amyid]

Hi my name is Amy.  I am 34, happily married mother of two.  I was diagnosed with RA in March.  I am currently on plaquenil, methotrexate and pred.  At my last visit, my rheumy (who I really like) wanted me to start ARAVA, too.  I researched the drug and in doing so found this website and learned more about the AP therapy.  It made a lot of sense to me as I had chronic strep throat as a child & teen and chronic sinus infections as an adult.  I asked my rheumy and she said I could try the minocin in place of the Arava, but that it wasn't particularly successful.  I was happy she prescribed it, but discouraged that she didn't seem to believe in the AP theory.  So I started digging further…

I have seen on this board stories people had posted about DR. S.  I also read about him in a book on this therapy and decided to call his office.  I now have an appointment in AUG!  I am excited, but was a bit nervous at how casually they set it up.  I guess partly I feel I am “stepping outside the box” and I traditionally follow mainstream medical practices.  This just seems right, though.  I am a bit nervous my disease will progress further if this doesn't work.  My ccp levels are high and though I am in early stages of disease, my doctor calls mine “aggressive”.  I think it is worth trying… At least, it can't hurt like some of the alternatives… I really find inspiration through your stories. 

Sorry this is so long.  I just wanted introduce my self and learn more.  I wish you all peace in body and mind!

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

My ccp levels are high and though I am in early stages of disease, my doctor calls mine “aggressive”. I think it is worth trying… At least, it can't hurt like some of the alternatives… I really find inspiration through your stories.

Amy, so sorry to hear about your RA dx. You've come to the right place for lots of hope, support and encouragement as you begin AP.

I also began with a very high anti-CCP, RF and cardio-CRP, but began on antibiotics last year and, though my anti-CCP is still somewhere above 60, my RF has come down from the mid-500s to 31 and my cardio-CRP has come down from 44 to 9. So, if this gives you any hope, at all, AP has worked for my very swift onset, aggressive RA without the use of prednisone or any other drug (though I did use plaquenil for a few months in the beginning as a Lyme cyst-buster, it didn't give much RA relief). I have come from bedridden agony to having 95% better days…still have those rough days interspersed between, too, but many more better days!!! This therapy takes time and patience and is a bit like a three step forward, two step back dance all the way, but it is very worth the wait. I think this may be why a lot of rheumies don't give AP much credence…it doesn't give immediate relief, like some of the more powerful immunosuppressives that are used, because it is viewed as a 'light' DMARD rather than for the reasons Dr Brown advocated…to get at the root cause.

You've started AP nice and early, so you stand a very good chance of having this work well for you, especially before any joint damage has had a chance to settle in. You may even find that like others here you will be able to reduce your other meds, as you progress.

Welcome to the RBF BB gang!

Peace, Maz

[amyid]

Thank you for your kind words, Maz.  I am so glad for you that you have so many better days now.  May I ask a personal question?  I noticed in your signature you take Azithromyicin every 10 days, is that for strep based infection?  I am wondering, cause I have read that people with a predisposition to strep infections may need an additional ABX with the Minocin in the AP protocol to fight the strep-based mycoplasma.

Thanks!

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=439]amyid[/user] wrote:

May I ask a personal question?  I noticed in your signature you take Azithromyicin every 10 days, is that for strep based infection?  I am wondering, cause I have read that people with a predisposition to strep infections may need an additional ABX with the Minocin in the AP protocol to fight the strep-based mycoplasma.

Hi Amy,

No worries…it's not a personal question, because we're all here to discuss the various AP protocols…so feel free to ask away! 😉

Yes, some AP doctors do use a combo antibiotic approach to treating rheumatoid disease, mainly the ones who believe in infectious causes and azithromycin (aka zith for short) is often used to combat strep L-Forms amongst other possible coinfections that may impede progress on mino. You might find it a bit challenging to persuade your rheumy to prescribe other antibiotics, as most believe that mino is simply another DMARD. This is why many here seek out AP doctors. If you would like to find one for yourself, just drop a line to apdoctors@roadback.org indicating whether you'd like to find a doctor in your city/state or one of the more well-known AP docs, if you're willing to travel. Some people like to kickstart their AP with IV Clindamycin, as Dr Brown used, so they will travel to see Dr S in Iowa or Dr F in CA, for instance, although there are other doctors scattered about who also use IVs.

In my own case, although I have a history of strep, my RA was actually triggered by Lyme that had got to the chronic stage. The usual approach of Lyme Literate physicians is to treat with a combo of different classes of antibiotics (bacteriocidal and bacteriostatic) and to change these up on a regular basis. So, I've been on a number of different high dose combinations for Lyme this past year and just moved on to low dose pulsing in early December. Here's my personal progress thread that explains in a bit more detail:

http://www.rbfbb.org/view_topic.php?id=301&forum_id=3

If you want to start your own personal progress thread, please feel free to do so. It's really just to journal our own progress and to share our stories to date with anyone who might be interested….especially newbies who might like to know how others are doing who have been on AP a bit longer.

Peace, Maz

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