Connecticut RA/AP doctor

[ajr]

Hello everyone,

I was a patient of Dr. T in Boston for 12 years and went into remission under his care. However since he has retired, I would like to find another RA dr in Connecticut that is also an Ap doctor. Hopefully not a naturopathic doctor but a real RA dr.
I need to find out if everyone stays on Antbiotics even after they are in remission.

I do recall Dr T mentioning to me that he knew of a doctor in Hartford but I failed to get his name.

Thank You
AJR

[Maz]

@ajr wrote:

I was a patient of Dr. T in Boston for 12 years and went into remission under his care. However since he has retired, I would like to find another RA dr in Connecticut that is also an Ap doctor. Hopefully not a naturopathic doctor but a real RA dr.
I need to find out if everyone stays on Antbiotics even after they are in remission.

I do recall Dr T mentioning to me that he knew of a doctor in Hartford but I failed to get his name.

Hi AJR,

Only two AP Physicians are listed for CT – one in Orange and one in Litchfield – both alternative physicians who don’t accept insurance. Alternatively, there are a few really good Lyme Literate MDs (LLMDs), but no rheumy AP docs or LLMDs in CT. There is one rheumy in New Haven who may be open to providing AP, but is not experienced in its use. Rheumies, in general, should be open to rxing minocycline as a DMARD for RA, if that’s all you’re after. Now that Dr. T. has retired, there are very few knowledgeable rheumy AP docs anywhere in the US. If you’re willing to travel, though, there is a very experienced AP rheumy on the west coast.

Any reason why you aren’t too keen on seeing a doc for AP other than a rheumy? Fortunately, it doesn’t take a rheumy to rx abx, as any doc with a medical license can do this. Experience in its use tends to be more important with AP and then a regular rheumy can just be seen for monitoring of disease, as needed. Some people will build teams of docs, if their rheumy isn’t open to treating in this way, but they still want a rheumy for regular check-ups.

Yes, although Dr. Brown’s aim was to get people off their AP once they reached remission for a reasonable length of time, we don’t have him anymore. He used a variety of anti-microbials (individualized to the patient), however, not just tetracyclines and tested for various pathogens, ensuring these titres had normalized, as well as disease markers and symptoms before attempting this. Nowadays, many RAers prefer to remain on a low, pulsed maintenance dose of their AP, even after sustained remission is reached. Some folks do come off their AP and manage to sustain remission for years, but for others their RA comes back after variable stretches of time and usually after a period of stress, shock, illness, surgery, accident, etc. It can, in some instances, be more challenging to re-attain remission after being off AP for a while, so it just depends on what risk a person is willing to take with all this. The alternative is to be on other conventional medications for life, so if remission can be sustained with low, pulsed doses of AP, this is preferable to most people.

If you’d like the names of the docs we have listed for CT, I’d be happy to send you this list, AJR. Just let me know. You’ll need to post 2 more times, though, before you can use the PM (private messaging) system – it’s a spam prevention measure. 😉

A warm welcome to you!

[ajr]

Hello Maz

Thank you for your quick response to my e-mail. The Dr. that took over Dr. T’s patients has put me on
one 50mg of minocycline per day. And I do recall Dr. T saying that I had to stay on 100mg of minocycline twice a day
or the RA would come back as you explained so well. If you would give me the names of the two doctors, I really would
appreciate it.

After reading Dr. Hyman’s book “The Blood Sugar Solution”,
I made my first appointment to be evaluated for allergies at the Ultra Wellness Center. This was very benificial to me
because I discovered a gluten sensitivety and the elimination of dairy really helped.

Since I already found such a wonderful naturopathic Dr in the Wellness Center, I thought I just needed a new RA/AP
doctor. But as you explained so well, there is no reason why I can’t have two naturopathic doctors with one being
experienced as an AP doctor.

Thank You
AJR

[datsheri]

Hi
I would like to have the Dr names if it’s possible
Thank you

I believe my wife already ask for the names but just make sure something went wrong

Thank you in advance

Demetrios and Sheri

[marypart]

There is also an extremely good AP rheumatologist who is also an LLMD in Virginia.

[Maz]

@datsheri wrote:

Hi
I would like to have the Dr names if it’s possible
Thank you

I believe my wife already ask for the names but just make sure something went wrong

Thank you in advance

Demetrios and Sheri

Hi Demetrios and Sheri,

Just so you know, your 4 replicated posts came through, but were sitting in the moderation queue. New folks here have to post 3 times before they can post unmoderated, which is just a spam-preventative measure. Your other 3 attempts are now deleted and just letting you know your post did go through and is appearing above on this forum. 😉

Can you provide a bit more info about your wife’s rheumatic diagnosis and where you are located? This can help to find a suitable doc. Thanks!

[datsheri]

Thanks for your reply

I live in Connecticut and came down with sudden rapid onset of symptoms which included severe joint and muscle pain, weight loss in 2 months of 30 lbs, facial symptoms including skin, nose and face changes of pinched looking nose, horrible skin tightening feeling and burning and also started on my face and lips (now swollen and furrowing at top of lip starting to get small) went to my neck chest shoulders and arms……(my wrinkles are even starting to go away near eyes) it has been about 4 months and now have esophagus swallowing issues and my ana is low positive of 1:80 ana nucleolar pattern (which is low indicative of scleroderma but no other positives except a low C3 level of 86. my doctors are sending me out the door with no diagnosis and dont know what it is and i have no specific diagnosis. I am sure this is early signs of rapid progressive scleroderma but i believe they just want to see a positive blood test but I do not wait til i am on my death bed…….i have seen doctor after doctor and they do not know. I can assure you these are scleroderma symptoms and one doctor prescribed me plaquenil and sent me on my way.

I have been on Scleroderma Facebook support pages and all believe i have it with my symptoms but they say it takes a year sometimes for doctors to diagnosis as they wait til symptoms are bad…..and obvious. I am suffering greatly already and the tightening feeling is torturous.

I would like to start on the AP program as soon as possible before it is too late….How can I find a doctor to treat me as soon as possible.

I live in Stratford, Connecticut.

Thank you so much in advance

Sheri Kline-Tinguirlis

[Maz]

@datsheri wrote:

I would like to start on the AP program as soon as possible before it is too late….How can I find a doctor to treat me as soon as possible.

I live in Stratford, Connecticut.

Thank you so much in advance

Hi Sheri,

We talked on the phone yesterday for about an hour – it’s me, Maz, in the next town over from you. 😉 Did you make an appt with Dr. Z.S. in Bridgeport to see if he would take Cobra and could give you a consult and get you started?

There are other doctors in CT that are both AP docs (the ones in Orange and Litchfield) and a few really good LLMDs (Wilton and Berlin), but as there are personal limitations for you and these docs are all out-of-pocket, the options are limited, I’m afraid, as we talked about on the phone. The really good docs also have quite long wait-lists.

If you still want the full LLMD list for CT, I’d be happy to email it to you. Diana has already emailed you the two AP docs. 🙂

[Maz]

@ajr wrote:

Thank you for your quick response to my e-mail. The Dr. that took over Dr. T’s patients has put me on
one 50mg of minocycline per day. And I do recall Dr. T saying that I had to stay on 100mg of minocycline twice a day
or the RA would come back as you explained so well. If you would give me the names of the two doctors, I really would
appreciate it.

After reading Dr. Hyman’s book “The Blood Sugar Solution”,
I made my first appointment to be evaluated for allergies at the Ultra Wellness Center. This was very benificial to me
because I discovered a gluten sensitivety and the elimination of dairy really helped.

Since I already found such a wonderful naturopathic Dr in the Wellness Center, I thought I just needed a new RA/AP
doctor. But as you explained so well, there is no reason why I can’t have two naturopathic doctors with one being
experienced as an AP doctor.

Hi AJR,

Any idea why Dr. T’s colleague changed your dose? Was it because he was putting you on a lower maintenance dose as you’d got to remission? Still would be nice if he could have rx’d 100mg BID in 50mg caps so you could adjust the dose yourself gradually, if so. 🙄

I’ll send you a PM (private message) with the two docs we have listed for CT. I believe the one in Orange will also do IV clindamycin, if asked, and she’s also listed on the Arthritis Trust website, so probably open to using other anti-microbials if needed. Just go up top to your User Control Panel and click where it will say (1 new message) in order to pick up your PM after I send it to you. You may not be able to respond on that system until you’ve posted 3 times, so don’t worry. Just let me know if you have any probs and you can always email me at maz@roadback.org if you need to.

[gratefulgirl]

Hi Maz & Sheri, Maz, you might forward my “AP” Rheumy doc’s name to Sheri. I believe I forwarded you his info. He practices out of New Haven and has been so very open to listening and learning about AP. His pattern was to try me on one of his DMARDs and if that didn’t work (always horrible side effects each time) after a week or so, he’d switch me to my request which of course was Minocycline.

He loves hearing about all the detox adjunct txs I’ve learned and benefited from by reading and being a part of this amazing and supportive forum and always writes info down so he can follow up with his own research. He’s also got a great bedside manner, very caring and never rushed. I’m still in remission with my labs but he supports my remaining on Minocycline and my pretty much case managing my treatment direction. I let him know that others from Roadback might be looking him up a while back.

I’m available through PM or here on the forum, Sheri, if you have any questions at all. I wish you both health and happiness! GG

[Lynne G.SD]

Hi Sheri;
It sure sounds to me like you have SDTests can show no results if you are sero- negative.There is a lot of info about this disease on the Scleroderma Foundation site.Read their bulletin board scleroderma foundation/inspire and ask questions.This gang usually does not believe in the infectious theory,I have no idea why as there must be at least a hundred people on it that are in the medical field and despite the number they can’t see it.On the other hand,they have great knowledge about the disease.Daisy is a doctor and she could give you lots of answers,just ask her as she is wonderfully smart and helpful.Just make sure you are on AP and not cancer meds.I have been on AP for almost 15 years and am sure if I was on Cellcept or Cytoxin I would not have lasted long.My life is very normal providing I stay on AP.
Lynne

[datsheri]

Hi I apologize if I am not replying in correct Place – maze I called both doctors in litchfield and in orange and left messages several days ago and no call back – Dr. Z. needs a referral in Bridgeport and does not take husky they won’t do self soy either if u have it – do u know the name of new haven rheumie that would do ap that someone else on this thread responded to me thank u did anyone here ever here of anyone that gets drug minocycline online? Thanks everyone – I believe I have early diffuse systemic scleroderma because of rapid onset of horrible symptoms but try getting a dr to find it until it’s late stage is impossible thanks so much everyone this disease is deadly and I need to get on it – anyone here of horrible side effects after taking with any scleroderma patients ?

RBFV Edit to remove LLMD’s full surname as per forum guidelines to protect physician privacy. Thanks for understanding.

[Maz]

@datsheri wrote:

Hi I apologize if I am not replying in correct Place – maze I called both doctors in litchfield and in orange and left messages several days ago and no call back – Zane needs a referral in Bridgeport and does not take husky they won’t do self soy either if u have it – do u know the name of new haven rheumie that would do ap that someone else on this thread responded to me thank u did anyone here ever here of anyone that gets drug minocycline online? Thanks everyone – I believe I have early diffuse systemic scleroderma because of rapid onset of horrible symptoms but try getting a dr to find it until it’s late stage is impossible thanks so much everyone this disease is deadly and I need to get on it – anyone here of horrible side effects after taking with any scleroderma patients ?

Hi Sheri,

Some doctor’s offices are not open on Fridays so you may get a call-back next week from these two. Neither the doc in Orange or Litchfield accept any insurance and I understand that the one in Orange has a hefty wait-list. So, if you do get a call-back, you may want to ask about being put on their ‘canceled appt’ list if you can get to an appt at short notice.

Have you tried asking your GP for a referral to Dr. Z.S.?

As you don’t yet have a confirmed SD diagnosis, it may be a bit difficult for you to approach any rheumy with a request for minocycline, but I will send you GratefulGirl’s rheumy’s contact info in a PM. Just go to your User Control Panel up top and click where it will say (1 new message) to retrieve it. If you do go to this rheumy, be sure to take your recent positive Lyme test with you, because this will help to support your case to be treated with abx (though the standard of care is just to treat Lyme for 2 to 4 weeks).

Wishing you all the best and hope one of these doctor options will work out for you. If not, there is also the LLMD (Lyme Literate MD) list I can send you. Just let me know. As you have a recent positive standard Lyme test, still think this is the optimal route, because ticks can pass more than Lyme disease and these coinfections need separate treatment. Minocycline is a good place to start, but you may need further treatment. Unfortunately as explained by phone, LLMDs, on the whole, do not accept any insurance as they are providing a different standard of care for the treatment of tickborne infections.

[gratefulgirl]

Sheri, if you do decide on a visit to my rheumy, let me know & I can answer any questions you may have. He is conventional in his practice, but open to using Minocycline as a DMARD which as we know is terrific start for you — at least until you can get into an LLMD. He does accept insurance. The dose you would need to start on may be different from mine since I had RA, but he is willing to prescribe per your request & backing documention (I used Roadback info per Dr. Brown).

Best of luck & health! GG

[Rockync7]

Anyone know of a doctor in CT. who believes in the AP for ra?

[Author]

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