need internet hug or advice

[Dee]

I finally talked the PA at the clinic I go to into a Lyme test and a mycoplasm test.  He also said the family doctor would give me antibiotics.  I was afraid to take the mino I had gotton from another country and was so happy to hear the doctor would give me the minocycline.  The clinic is busy and it took me a month to get the appointment with the doctor and finally saw him today.  It was a horrible time.  The doctor told me his daughter had RA and if he thought antibiotics would help her he would give them to her.  He told me I was listening to quack people on the internet and should see a rheumatologist again (she didn't do anything for me before)  He said my Lyme test and mycoplasm tests came back normal and hinted my stress and depression were causing all my problems.  I have high positive RF tests (2) and high anti CCP and can't believe all my problems are in my head.  I have nodules on my fingers and my left hand is beginning to turn out.  Stress seems to increase my pain but don't believe I am totally nuts and my psych problems are causing all my pain but I am so discouraged.  The doctor gave me the prescription for minocycline but told me he was going to write in my chart that it was against medical advice.  I feel like a piece of crap.  I am down to 55% of my lung capacity after Advair and Spriva inhailer use when I started at 47%.  I am afraid RA might be hurting my lungs but the doctors don't seem to care.  I don't want to just give up but don't know what to do.  I had the PA order a quantatative mycoplasm test and am wondering if I should have asked for a different kind.  Does anyone know?   

[Maz]

Hi Dee,

I went back to do a search as I'd remembered your earlier posts regarding your concerns about possibly having Lyme and just wanted to make sure you were the same person. 😉 Were you able to have your Lyme tests done through IGeneX or Central Florida Research?

Try not to take this doc's reaction to your request for mino to heart. It's just one medical opinion and minocycline is an approved, for off-label use, American College of Rheumatology DMARD. So, you aren't asking for anything that hasn't been approved by the FDA and shown to work in many studies, including MIRA. You're not alone and lots of people have been scoffed at when they've asked to try mino for their RA or other rheumatoid disease. My own feeling about this is because most doctors really don't understand the mechanism of how AP works. It's a longterm treatment and, in many cases, patients worsen before they improve (the herxheimer reaction) and results can take a while, especially in cases of severe and longstanding disease. Thus, they regard mino as being ineffective when really initial worsening is a very good sign that the treatment is working!

I know we've spoken before, so won't go on at length, except to say, it's great that you've got your mino now! YAY! Now, regardless of the reaction of your doctor, you can begin your road back! And, if you need a list of AP doctors who won't regard you as a crazy woman, then just jot a note to apdoctors@roadback.org where you can ask for doctors local to you or the best, if you're willing to travel.

There's lots of support to be had here, if you find you need it in the early days. Have you got a plan with regard to dosing yet?

Peace, Maz

[Jennhere]

I had some “asthma” issues before I began A.P.   It all cleared up on A.P.  I don't think it was actually asthma… it was just part of my falling apart.

So, you have A.P. meds now?  Just start taking them and do your thing.  No doctor agreed that A.P. would work for me!  As you get better- you'll realize the approval of the doctor is meaningless to your recovery!

Jenn

[Dee]

After sleeping on my problem, I was going to take the prescription back to the doctor and ask him to get me an appointment with a rheumatologist.  The prescription looks like it says minocycline 100mg daily.

  I had the PA send my specimen to Medical Diagnostic Laboratories in NJ because the rheumaticsupport.net had them listed.  He didn't know what to request because there were at least 5 different mycoplasm tests listed on the form the lab sent.  I checked the quantiative mycoplasm PCR box.  I don't know anyone else who would order another test so it doesn't matter now anyway.  I hadn't checked your reply before my appointment for the Lyme test and really can't remember what  box I had him check for the test.

Do you think an AP doctor would see me now after all of this past mess with doctors?  There is a doctor listed on the AP list in Charlotte I was going to contact when the PA at the clinic said the doctor would see me and give me the antibiotics.  I so wish I had tried to get an appointment with him.  His name is Dr N. S.  Have you heard of him?

Thank you all for responding.  I am sitting here crying like a baby but trying to kick myself in the pants to get going. 

Dee just edited out Dr's name from this post, as it is RBF's policy not to use AP doctor's names on the bulletin board…initials are okay, though. 😉

[whaleharbor]

Hi Dee,

I certainly can't tell you what to do but can tell you what I've done and what has happened with me.  I have RA and was once diagnosed with “borderline asthma” whatever that is…which has since resolved itself after going off of birth control pills…weird hugh?

After much trial and tribulation I got my normal rheumy to prescribe antibiotics but he prescribed only 20mg once per day with food….a most ridiculous amount by anyone's account…

In frustration and fear with increasing damage I went to another doc who told me similar horrible things.

More fear, more crying, more freaking out…and I got a good piece of advice from Cheryl Ferguson (thank you Cheryl…I've never thanked you)…She suggested I go to a doc who actually uses AP as they would be more supportive.

I did that and one better.  I went to Harvard …..I couldn't think of a more prestigious place.  I went to a rheumy doc who is among the best AP wise, but he also prescribes (as I understand it) all “normal” drugs too.  That was important to me because I felt that he would be open to everything…so if he told me to take Mtx or Enbrel or whatever I should do so…but if he told me to take minocycline I should do so.  I didn't want anyone or was “prejudiced” either way.  In my estimation for me he was the one. 

At Harvard I experienced very caring people and a completely sweet and gentle doctor.  He is very unassuming…very much wanting me to get better….you'd never know that he was recently in Woman's Day Magazine article because he treated an SD patient with minocin that he treats Kathleen Turner with minocin or that he has been part a multi-million dollar research projects.  He made me feel like I was the only thing important to him in that moment…He had no ego…

He made no promises, of course, but encouraged me to have patience and try his approach. 

So any good compassionate caring rheumatologist will see you and treat you.  No matter how long you've been sick and no matter what you've been through.

Email the list for a list of AP docs in your area and/or if you are willing to travel…find the best one you can find.  Find a doc One that YOU personally believe in (our belief has a lot to do with out outcome, I think).  It's ok to cry for a while but just do what you've go to do…whatever that means for you…because you are worth it. 

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

[Maz]

[user=241]Dee[/user] wrote:

Do you think an AP doctor would see me now after all of this past mess with doctors?  There is a doctor listed on the AP list in Charlotte I was going to contact when the PA at the clinic said the doctor would see me and give me the antibiotics.  I so wish I had tried to get an appointment with him.  His name is Dr N. S.  Have you heard of him?

Thank you all for responding.  I am sitting here crying like a baby but trying to kick myself in the pants to get going. 

Dee, it's okay…we've all sat and had a good cry at some point. These diseases are bad enough, let alone very often having to work so hard to find a doctor willing and open to treat us as we wish to be treated. :crying:

That said, it's absolutely fine to go and see an AP doc now or whenever you decide!!!  Some people get a number of medical opinions before proceeding with a treatment, surgery, etc. This is perfectly fine, because docs are only human, too, and fallible like the rest of us.

Also, worth bearing in mind that every single specialty out there will give you an opinion based on their own sphere of expertise. I had a friend who had post-partum depression and she went to a number of specialists who all gave her vastly differing diagnoses until she finally found one who told her what was really going on!  This isn't always the case, but it can and does happen. 

Many of us here have experienced the loss of power when we come face-to-face with a doctor who ridicules us instead of supporting our treatment choice. After a while, you discover just how pivotal it is to be your own health advocate, to do the research and figure out what treatment fits you best. All doctors can do is give a medical opinion and this will always just be an opinion. And, all any of us here can do is give you suggestions based on personal experiences…the rest is really up to you….and that's the part that is so empowering! 😀  Ultimately, you're the customer and a doctor is just providing a service, so if you're not happy with the service, it's okay to just fire them and move on.

You mentioned already having an AP doc list, so just start calling around and see if you can figure out which doc will be the best fit for you in advance of making an appt. Some of the doctors are on the AP list because they firmly believe in infectious causes for rheumatoid disease and will use a number of antibiotic approaches…others are on the list because a patient recommended them to RBF if they happened to get a script for minocycline as a DMARD (as your doc did for you). Not all “AP” docs, or Lyme Literate docs for that matter, are cut from the same cloth. So, if you specifically want IV Clindy or a combo antibiotic approach, then it may mean you will need to travel.  You can also do your own research…go through the yellow pages and look for doctors of osteopathy (D.O.s), for instance, or holistic doctors, or naturopathic doctors and then call them and see what their approach to treatment would be. ACAM also has a physician listing for doctors who employ alternative modalities.

The good part is that you have your first mino script now…you have the time to figure out your next step. Maybe someone here has been to see Dr NS and will also be able to give you a recommendation or the name of another doc in your area. So, keep the faith…we're all here to support you! If you want to start a new thread asking for people to private message you with the name of their AP doc in your area then that might help, too….getting recommendations can be very helpful.

Peace, Maz

 

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