- This topic has 30 replies, 13 voices, and was last updated 15 years, 5 months ago by
.
-
Posts
-
Hi Everyone,
After having my 1st very positive phone consultation with AP Dr K out of state, I forwarded his notes and suggested regime to my local Dr and Rheumy, hoping that he would save me the expense of flying to Melbourne, to have tests and have a course of IV's (4 weeks total).
I received a letter from my Rheumy today, much to my disappointment, he more or less said that there wouldn't be any benefit from taking the antibiotics in the regime which Dr K suggested. His last paragragh read as follows,
” My feeling is that Dr K has got a bee in his bonnet but unfortunately the scientific community doesn't see the same insect as he and it is not for want of trying, it has many things in its favour, but no proof”.
I do think it is a shame that some doctors are not even prepared to entertain any idea of stepping outside established medical practice, and try alternative medical treatment even when that treatment has been proven to help relieve and even put the condition into remission.
Question for everyone……… My Rheumy took me off Fosamax, I don't know why, does anyone take this as well as their abx, and if so was there any problems?.
Thanks in advance for any advice……………….Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Annie,
I am sorry to hear it. I know how you feel. My local rheumy did not want to do it either after Dr. S' office did all the paperwork. I ended up found a place in the hospital to do it.
You may want to call your local hospital outpatient service or a clinic and see if they will take Dr. K's order and do it for you. Also, make sure your insurance will cover the service.
Hang in there,
JB
This is off course a bit here but i like to vent!
Most of these stupid rheumies just aren't getting it and it maddens me so much. I remember when i took my son to a well known world wide hospital in Canada for lupus. They hated that i knew so much about “infectious pathogens”. I asked them about these diseases being caused or partly caused by chronic infections and they said ( 3 pediatric rheumies were present) ” They all have chronic infections!!!!” in disgust. So i asked them if they treated the chronic infections. They said “NO” and wouldnt discuss it farther. I told them if they treated the chronic infections, they may never have the disease. I walked out with my son so angry and the one rheumy stopped me and said ” We have over 400 lupus children and neonatal lupus babies, they all have chronic infections and we dont treat them, GET IT!” We never went back .
You know what, proof or not , these rheumies in particular, knew about mycoplasma, bartonella etc. They lied about it though. The attending emerg doc told me they tested for all types of mycoplasma when i asked (he was not a rheumy). The 3 rheumies told me they DONT test for mycoplasma at all at that hospital even though myco pneumonaie is listed on their hospital website as one of the pathogens they test for.
Makes me so mad but i have to say this “vent” felt good .
They only thing for these particular docs to become “unstandard” is to get a disease themselves or have a loved one diagnosed with it. A shame!
Casey
Hi Annie,
I recently visited my rheumatologist as well (whom I'm continuing to see despite having found a fabulous integrative doctor). She was very very reluctant to prescribe me minocycline, but eventually she agreed, but all the while she rolled her eyes at me and told me that I would be so much better on methotrexate, that that is the “first line” drug and that if she thought that minocycline would work, she would have prescribed that first.
The thing is that I really like this doctor and I really do think that she is trying to do what is in my best interest. She just thinks that AP is going to be this crazy alternative thing that will allow my joints to erode further and eventually cripple me. So I try to keep that in mind when dealing with her – and then I go to my integrative medical doctor and she helps me manage my diet and my lifestyle and all the other things that might be causing this that traditional medicine is overlooking.
Some days I'm really angry and some days I'm OK with things. Today happens to be an OK day. I hope you find a similar peace, Annie! And I hope that you get a better doctor to help you carry out Dr. K's protocol!
Jen
Hi Annie,
Did Dr K give you the actual script for the IV series? If so, you might be able to find a local home infusion service that will come to your house to do the IVs. Just a thought and don't know if it will work in Auz, but as JB says, where this is a will there may indeed be a way! :roll-laugh:
Did you see the recent 2006 British study using Dr Brown's IV and oral protocol that I posted on Katie's thread? It's a single blind study, but the results are encouraging. You may want to print a copy of that study and send it to your rheumy to let him know that this recent research has been going on at Charing Cross Hospital in the UK. If you can't find the thread, I'll resend it to you.
Just some additional thoughts to potentially try, but Annie you really deserve a huge pat on the back for having the courage to bring this up with your doc! In spite of his rejection of your treatment of choice, well done!
Peace, Maz
Hi Annie;
In the last year or so research has found that bone density meds can be very bad as they can cause bone death usually in the face and shoulders..If you go to http://www.mercola.com and use the search you will find a lot of info.I am not a great fan of his but he explain this one very well.Doctors here are not using these meds unless there is absolutely no alternative. LynneHi Maz,
I just read this study as I missed Katie's original post where you linked to it. I wish I could read the full study in the journal. The abstract left me with a couple questions and I was wondering if you knew anything more about it? For example,
I wonder what they consider “second-line treatment”? It didn't say, and it also didn't say if this second-line treatment was continued during the antibiotic treatment.
I also thought it was interesting that they pulsed with tetracycline instead of minocycline, and did it with 500 mg/day, continuing the IV clindy therapy throughout the study at various intervals.
Anyway, thanks for posting the study. I agree current studies are very useful and it's great there are still researchers interested in AP.
Joe
[user=20]Joe M[/user] wrote:
I wonder what they consider “second-line treatment”? It didn't say, and it also didn't say if this second-line treatment was continued during the antibiotic treatment.
I also thought it was interesting that they pulsed with tetracycline instead of minocycline, and did it with 500 mg/day, continuing the IV clindy therapy throughout the study at various intervals.
Hi Joe,
These are exactly the kinds of questions we'd like to ask of the study authors, which is why we're hoping Dr H might know more or have a copy of the full study for us.
Just as side note, the oral tetracycline doses in this recent UK trial were half of the above, as follows:
“Antibiotic therapy was given for 12 months and comprised oral tetracycline 250 mg twice daily, 3 times per week, and intravenous clindamycin infused on 5 consecutive days (300, 300. 600, 600, and 900 mg) followed by weekly infusions of 900 mg for 3 weeks and then fortnightly infusions for the remainder of the 12 months.”
Although the doses for doxy and mino are quite similar in AP, normally higher doses are used with tetracycline. I'd also like to know why tetracycline was used, because I used it in my first year on antibiotic therapy and did very well on it in combination with biaxin, although much higher daily doses (750mg bid) to hit the Lyme, too. The herxing was monstrous, but in the lower doses Brown originally used (as above), I'd think much more tolerable.
I'd also like to know what is meant by “second line treatments.” It possibly means pain medication or prednisone in small doses, as Dr Brown used, but that is just my interpretation.
Hopefully, Katie can get a response from Dr H and he will be able to make the full study available to us. We don't know at this point if it is this study he was referring to with Katie or if he was involved in other trials. Would be great to unravel this mystery a bit….would also be great if these teaching hospital docs who authored the study would be candidates for adding to the AP doc list in the UK.
We're thinking along similar lines here, Joe. If I hear anything more than is posted on the BB, will let you know.
Peace, Maz
Annie – I would imagine he put you on Fosamax to counteract long-term prednisone use because research has shown that it decreases bone formation over time. I assume you are now weaning yourself off pred? In which case you would no longer need the Fosamax. 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)Annie,
Just to add to what a couple of others have said regarding Fosomax. I have osteoporosis and blindly took it for a while on the advice of two of my doctors. During the time I was taking it, I wound up talking to an executive of the drug manufacturer at a party, and somehow he asked if I took that drug. When I said, yes, he matter of factly said, to quit. I was so shocked I immediately started researching (this was my former self) and was blown away with what a dangerous drug it is. You don't have to search far to read the scary stuff.
I am such a skeptic now that I've learned to do my own homework.
p.s. Your rheumy is a jerk.:X
Hi Everyone, I can't believe I just answered all of you individually and went to send it and must have pressed the wrong button, I lost it all :angry:, I will start again, maybe not so in depth this time. :blush:.
Firstly thanks to everyone for your replies, I was so angry last night, this morning I am thinking a bit more clearly.
JB, Casey , Maz, Jen, & Jan, as my hubby always said to me, if doctors were made to suffer these diseases, there would be some astounding advances in medical science, very quickly!
My GP was also very sympathetic and was willing to help me along with my AP doc, but just found out last week she had breast cancer and would be out of action for 9 months, and her partner in practice is completley hopeless, he was more interested in my high heel shoes than my progress with AP. :headbang:.
Dr K gave me Pathology forms for my tests and just found out I can get them done without my Rheumy, so thats a start, Dr K didn't give me a script for the IV's so I will ring him and find out if he will. Maz, thanks for the links I have copied them and will take them with me to my Rheumies appointment in 2 weeks in hope that I can convince him to administer the IV's.
Lynne , I didn't realise what damage fosamax can do, I didn't even give it a thought, I will have to do a bit more research , thankyou for the link.
Lynnie, I have been on Fosamax for many years, long before I was DX with RA . I was told I was going through early menopause and was tested and had loss of bone density due to lots of exercise and very low body fat (I was fanatical), and the fact that I was dairy free didn't help. I was also taking Calcium tablets with D, but I had some trouble with my blood levels when starting with Mtx and Pred, I'm not sure what, as I didn't ask question back then, but I think it was something to do with my high calcium levels. My Rheumy took me off the calcium tabs and both him and my GP didn't know why my calcium levels were still high. I am a bit worried about not taking fosamax, as I don't eat calcium enrich foods, but I will ask Dr K when I phone him about it. I am feeling my way at the mo, (a bit nervous) and am not yet weaning off Pred, I thought I might wait until I am completely off Mtx before I start with the pred, maybe after Chrissy.
I don't know what I would do without you guys for advice, as you certainly give better much needed advice than any doctors I have seen over the last few years………..Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Hi Kim,
It is hard work trying to reply when you have a 2 year old (grandson) running around wanting my attention.
I agree my Rhemy is a jerk! I was so disappointed with his letter.
That is really scarey stuff, can I ask what you take for your Osteo?
Thank………Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Hi Annie;
Your calcium,weight etc problems sound just like mine were.I was on MTX and was near liver failure.I was on Fosomax because the doc told me to because the MTX does a number on your bones.Year later I found my fantastic doctor in Ottawa who got me sorted out and nearly drove me nuts in the process.My blood calcium was super high as it was being leached out of my bones to protect the heart.I was a total mineral mess,sos much so that it scared the doctor.I went from slightly anemic to near hemachromatosis level in less than a year.Barium,lead,calcium,copper,iron,manganese,potassium,silicon,sodium and strontium were all sky high.Boron,chromium,molybdenum,phosphorus,selenium,and zinc were almost non existant.Vitam D 25to 1,25 had a ratio of 2.8 when it should have been somewhere around 1.1.All this was caused by malabsorbtion of food nutrients due to my unknown celiac that ended up causing leaky gutand total systemic yeast infection
Try to find a good holistic doctor who can get you tested for all these problems that are the likely cause of your disease. Lynne
The topic ‘ My Doctors arrrrrg!’ is closed to new replies.