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Hi All, I guess I'm just needing to vent a little and maybe get some support …. I walked out of my rheumie's office feeling very alone after she basically told me that she didn't believe in AP and said I could make an appt to see her again when I changed my mind about my course of treatment. She said that she would not need to test me for anything unless I started taking the meds she was recommending. She would not even check my RF again, cause she said it doesn't really matter if it drops.
Obviously, I will be looking for a new rheumie, but I can't believe that I was sitting there telling her (and a new doctor in the office who was being oriented) that I was feeling so much better after being on mino for about 7 months and she just looked at me like I didn't know what I was talking about!! I'm not a doctor, but I do know that everything that I've been reading about an infectious agent makes sense. When I asked her what she thought caused RA, she said that nobody knows, but that mino may be helping me because it does have some anti-inflammatory properties. I told her I didn't think such a low dose would make that much difference, especially over the weekends when I go for almost 3 days without any mino. The other doctor in the room was very young, so I was hopeful that he had more knowledge about AP, but he said there was not enough scientific research to back it up. When I asked if he knew about the MIRA study, he said he thought it was based on patients who did not have severe RA. I finally realized that I couldn't deal with them anymore and just said “Well, why would I want to go on meds that can harm my liver, kidneys, or eyesight if I am feeling great taking a much more benign treatment?” I left that office with a smile on my face and disbelief in my heart! I just do not understand why they wouldn't be happy that I am finally feeling so much better and be open-minded about the possibility that AP might work! :headbang:
Thankfully, I have a supportive GP who although he is not that knowledgeable about AP, he researched it and told me that it was worth a try. I guess my question now is, do I really need to see a rheumie at all? Also, are there any tests that I should be getting on a regular basis to keep track of my progress?
Thanks for listening,
Phyllis
WOW Phyllis! Thanks for posting your experience with the Rhuemy. I just got diagnosed with RA and have not even found a Rhuemy yet. Not so sure that I will after reading your post and others. Thanks for sharing. Gives me alittle insight as to what lays ahead of me. It is very nice to read that you are feeling good from the mino.
mickie pHi Phyllis,
This is an all-too-familiar sounding story !
In my case, my original rheumie was very angry that I didn't take the mtx she prescribed. My ESR and CRP had just started to come down after 5 months, and I was over the moon – but she shot me down in flames !
But she moved on, so I have been seeing a temporary rheumie for the last year. I was already near remission by the time I saw him, and, to his credit, he has never suggested that I should change meds, but just wanted to 'monitor' me every 4 months. He likes to take x-rays of my hands and feet to see whether there is any joint damage, which I suppose is quite useful to know. But apart from that he hasn't really been any 'use' to me.
The people who have been indispensible have been my GPs, and the LLMD who are the people who have actually prescribed the antibiotics, and enabled me to have various tests.
I suppose it is a good idea not to burn all the bridges with the rheumie, but do exactly what she says, go back if you ever decide you'd rather go with 'traditional' meds !
As for blood tests, I had a monthly blood test – mainly for Full Blood Count, ESR (Sed rate) and CRP (C-Reactive Protein) (These last 2 show inflammation). I also get RF every 6 months. If you have had an anti-CCP test (which I never had), it may be worth monitoring that too.
My ESR & CRP have never gone back up (since March 2009), and what's more my RF came down and stayed down too. So now I just get a blood test about every 3 months.
Doesn't mean I am completely symptom free however. I still have problems with wrists, which is why I'm just about to change from mino to a Lyme Disease protocol.
Anyway, it is great to hear you are feeling so good after 7 months !! Hope my experience helps you decide which path to take now.
Best wishes, Katie 😀
Hi Phyllis,
This is exactly why I chose NOT to go to any rheumy any more. I just go to a GP who is although not very knowledgeable is very supportive and positive and helps by prescribing me meds, writing the necessary reports for insurance and doing all the necessary tests. We agree that I will guide him and he will trust me as I know much more about my illness than he does. Yes, I would have preferred to have an experienced AP doctor who would decide for me, but none here in the UAE. So I chose this more difficult but truly rewarding journey – I learn so much along the way and I know my health is in good hands IYKWIM 😉
I do get guidance and support over e-mail every now and then from a very experienced AP physician as well – Dr. S in Ida Grove – with this arrangement I am very confident.
Wish you all the best and maybe you will be lucky to find an AP doctor nearby!
Aynur
Phyllis – unfortunately your experience is all too familiar. In fact, if you read some of the testimonials on our main site at http://www.roadback.org, you will see how others have dealt with this. The reasons that rheumies are not on board with AP are many and complex. This is a subject well covered in Henry Scammell's book The New Arthritis Breakthrough which contains Dr Brown's original book The Road Back. Worth reading if you havent already. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I also walked out on a couple of Rheumatologists for similar reasons. And it was through my GP that I started Minocin several years ago, but now have a Rheumatologist who is willing to go along with it, however he doesn't really believe in Minocin. Although it is working for me, If he starts to pressure me then I will go the AP doctor in Richmond, I live in Charlottesville VA. There is a man in my Church who goes to this doctor in Richmond and cannot say enough good things about him. Keep trying, you can get a list of AP doctors through this website, just ask.
Hi everyone,
my daughter was seeing a AP doctor here in Texas but because her husbands insurance changed she couldn't go to her anymore and she had been looking for a doctor willing to give her antibiotics. About 6 or 7 months ago she found this GP and she told him about the AP and what she is taking. She asked if he would be willing to give her the medication she needed. He said yes but only for three months and then he would think about it. So I ordered the “ The new Arthritis Breakthrough” book from Amazon and told her to give it to her doctor. She told me yesterday that he is willing to keep her on the AP since he has read the book and is interested on seeing how well she will do. Besides having Arthritis she also has Avascular Necrosis. So I am hoping he will keep on helping her and maybe we have another AP doctor here in Texas. He told her that after reading the book he may try another antibiotic on her that Dr. Brown used on his patients.
Maybe if you buy that book and give it to you GP he will learn more, I gave it to my pulmonary doctor and he started to read it right there in the office. I asked him since then and he said it was very informative for him.Eva:D
Eva Holloway
[user=236]Eva Holloway[/user] wrote:
Hi everyone,
my daughter was seeing a AP doctor here in Texas but because her husbands insurance changed she couldn't go to her anymore and she had been looking for a doctor willing to give her antibiotics. About 6 or 7 months ago she found this GP and she told him about the AP and what she is taking. She asked if he would be willing to give her the medication she needed. He said yes but only for three months and then he would think about it. So I ordered the “ The new Arthritis Breakthrough” book from Amazon and told her to give it to her doctor. She told me yesterday that he is willing to keep her on the AP since he has read the book and is interested on seeing how well she will do. Besides having Arthritis she also has Avascular Necrosis. So I am hoping he will keep on helping her and maybe we have another AP doctor here in Texas. He told her that after reading the book he may try another antibiotic on her that Dr. Brown used on his patients.
Maybe if you buy that book and give it to you GP he will learn more, I gave it to my pulmonary doctor and he started to read it right there in the office. I asked him since then and he said it was very informative for him.Eva:D
WOW Eva! That is wonderful news. The thread started about two doctors with closed minds and now we learn that there is at least one more with an open mind.
As everyone above has said, it is pretty common to hear stories such as the original post in this thread. It is very sad, but as I learn more and more about medical education, I believe that our doctors are not taught to explore and question, they are taught to learn what they are told, not question. The emplasis on “scientifically proven” is amazing to me, not “scientifically proven” DOES NOT MEAN “scientifically disproven” but all of these so call scientists seem to miss this point. There are many things that are not and cannot be scientifically proven, but they are not sceintifically disproven either. So why would a scientist not have an open mind??? I will never understand this, it seems so simple to me.
All in all, we all know, that although most of us are not doctors, we have the intellect to explore our options and make good choices for our treatment protocols.
Cheryl
Cheryl,
I know where those people have been, I had a rheumy like this and I just walked away and found another doctor to help me. Sometimes I think we have to make an effort to educate our GPs or other doctors that could help us. I have to travel 125 miles to see my AP doctor. At least I have some help there and I usually take a friend along and make it a nice outing with a lunch.
How is your daughter doing?
Eva:DEva Holloway
Keep your chin up, my first Rheumatologist was very harsh and insisted on medication, I had not found AP yet but knew I had also not accepted the fact that I had this illness yet and was in no way ready to consider meds. Needless to say I threw the prescriptions away and searched for a new one. When I showed up at my current Rheumie I was very protective and made my case and went on and on why I felt how I did. He looked at me and said, ” you never have to justify yourself to me, I am here to support you not tell you what to do or judge you, there are many options and none of us have the answers, in fact he said he came out of medical school knowing it all and it has taken him years and years to learn that he only knows about 50% of what he had hoped, he says he will let me try whatever I want to as it is my body and I will make the decisions, he said he may not always agree and he will let me know but it will still be my decision. And yes I cried but he is still my Rheumy and he knows I see and AP doc also and casts no judgements. You need to make an apt with another doc and if he also sucks then keep looking but you will find the one you are comfortable with and that will support you in how you want to care for this, good luck.
I can only add that I too had this sort of experience with what over a few months became contact with 3 rheumies, although must admit that the 3rd actually knew what disease I had & was willing to tell me over a 1-1/2 hr consult all she knew. It was only when she offered me the traditional drugs things turned for the worse I simply said I wouldn't take those meds & her demeanour noticeably changed, she got uppity & said I would be crawling back to her within 6 mths begging for the drugs. That happened in Nov 2007. It is my view that doctors can only offer a treatment path. Our role in the decision making is to understand all the pro's & con's, what the objective is, how long it may take & then make an informed decision on what treatment path we would prefer to use.
It is a shame that some doctors seem to forget that medicine is not an exact science & sadly it is an all too familiar story when it comes to rheumatologists, some of them just can't see the woods for the trees.
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Wow, you have been through a lot. My rheumy has been ever so kind and although he doesn't believe in AP, he still prescribes me minocycline. He knows it has been proven as a DMARD so it's good enough for him, I guess. You have gotten a lot of good advice here, I would keep looking for a good rheumy and not stop until you find one that suits you. We are the the ones paying and if you don't like their service find someone who will listen and really help. I hope to visit an AP doctor soon. I think an AP doctor is the best choice over a rheumy. Good health to you, take care.
Or a good AP doctor if that is the treatment path you choose – and that may not be a rheumatologist. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I'm with you Lynnie ,,, a good AP Dr is what's important & it doesn't matter to me whether it is a rheumy or not as long as he/she knows what she is doing with AP & me. With this stuff I am thinking it could actually be beneficial if it isn't a rheumy.
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Phyllis – I've just noticed that your diagnosis was initially Palindromic Rheumatism in 2009, followed by RA dx a year later. That seems to be a classic way that Lyme Disease starts. You may also want to consider getting tested for Lyme (Igenex Labs seems to be the preferred lab) and, depending on the results, consulting an LLMD. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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