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Hello Forum, I am new here and thank you for reading my topic.
I have been trying now for a year with both conventional and alternative treatments to get my RA under control which started to give its first signs in June 2012. I have been lucky not to have taken any NSAID’s so far. A short run of prednisone didn’t do anything and a relative short period of sulfasalazine as add-on to the MTX did not improve things either. Alternative treatments have been fasting, vegetarian, paleo, glutenfree, acupuncture, supplements, parasite control and yeast control, all with no noticeable success. So, now I am on the max amount of MTX injected per week and my rheumatologist, who is not happy with the improvement (and I agree with her), wants me to go on Biologicals. I have read quite some about AP, but for sure not everything, and found my self another rheumatologist who has experience with AP.
My AP Rheumatologist states now that she is worried about the development and recommends me, similar to my original Rheumatologist, to start the biological treatment as soon as I can before starting AP. My questions to you are:
1) Having read that the success rate of AP is smaller the longer the disease develops or other treatments are being used, what are your experiences. Should I start Biologicals first and when they (hopefully) kick-in should I add the AP? Or am I loosing my window of opportunity for AP, by starting with Biologicals.
2) Can AP, MTX and Biologicals be combined anyway? Any experiences? ( I remember having read something on this side about this but cant find it back)
3) I have to basically decide for a Biological treatment this week. Are there any brands which are “preferred” to be used with AP? (If there is such a thing?)
4) Also my AP Rheumatologist mentioned that the IV treatment which is normally required at start of the AP, is not available anymore, and that the oral pills that are given nowadays are less effective/more sides effects. What is your experience?
Sorry for the somewhat long post with many questions. I hope someone has experience with these questions and can answer.
Merry Christmas and Thanks!
Karel
Hi The majority of people do start with ivs —I am aware of people taking biologicals along with the antibiotic –but I am not aware of people taking MTX with the biologicals —
richie@richie wrote:
Hi CORRECTION—The majority of people do NOT start with ivs–sorry –
richieRichie, thanks for your replies. My AP doctor reiterated this morning that IV clindamycin is not available anymore. Is that true indeed? Could that be the reason people don’t start with ivs? Is there an alternative, which helps the antibiotics? I am here in the US. Thanks!
My rheumatologist wanted me to go on methotrexate – in addition to being on Enbrel (biologic) and minocycline therapy. I turned the methotrexate down. But, at least in my case it must have been ok to take all three. I decided to go slow, and have found I don’t need it – so am just doing Enbrel and the mino.
Lori
Hi I am sure not a doctor but get by on my good ??? sense –Methotrexate and enbrel are two strong immuno suppresants and some folks tend to think minocin has immunosuppresant properties –I think you made a wise choice not taking mtx –just too many immunosuppresants imo —
richie@Karel wrote:
My AP doctor reiterated this morning that IV clindamycin is not available anymore. Is that true indeed? Could that be the reason people don’t start with ivs? Is there an alternative, which helps the antibiotics? I am here in the US. Thanks!
[/quote]
I have not heard that IV Clindy is no longer available. I suggest you send a request to the email: apdoctors@roadback.org and ask for the contact info for Dr. S in Iowa, call him and he would certainly know the status of IV Clindy availability.
I agree with Richie that the majority of people do not use the IV Clindy, it does seem to provide a good jump start to the protocol if you are able and willing to go to the lengths necessary to obtain this not so easily obtained treatment. My daughter started the treatment with three days of IV Clindy (it was supposed to be 5 but she had an allergic reaction) even the three days gave her a very nice boost (I think).
Regards~
Cheryl
Hi Karel,
I had little success with anything until I began suppository edta heavy metal chelation. We acquire metals from fillings, vaccines, city water, and the environment generally and our bodies cannot get rid of them easily, and in my case, I have genetic mutations making it especially difficult as do many autoimmune patients. Many autoimmune patients are additionally greatly helped by chelation. Metals feed and interact with organisms and contribute to biofilm formation.
Here is where I get my edta and you should begin with a child’s dose and build up in order to gauge reaction and prevent kidney damage that is possible if the body is especially toxic and preempted to chelate too much at once via the kidneys/urine: http://www.chelationhealthproducts.com/cart/home.php?cat=4
Just a suggestion as it seems you have tried so many treatments.
Feel better,
LauraHi Karel,
I tried a few biologics, such as Orencia, Remicade and Humira. I noticed Remicade worked ok a couple times, then I had a critical allergic reaction to it, my blood pressure skyrocketed while getting an infusion. The orencia did not get rid of all my pain and the humira did not work well, but what they all had in common was they made me anemic, severely anemic. I should not be surprised because it reads blood disorders on the patient insert. When I would stop the biologic and take a break for a few months my anemia would go away, so it was never a good fit. When I was anemic and on the biologics I had to get iron infusions , and I felt sick and tired too.
The best thing for me was fasting with freshly juiced fruit and vegetables juices for a week. I could not believe how much better I felt. if you have time watch ” The Gerson Miracle”, its free online at such places as http://www.youtube.com.
My ESR/sed rate dropped 20 points into normal range by eating a 90% plant based diet.I hope you feel better.
Take care!@Cheryl F wrote:
@Karel wrote:
My AP doctor reiterated this morning that IV clindamycin is not available anymore. Is that true indeed? Could that be the reason people don’t start with ivs? Is there an alternative, which helps the antibiotics? I am here in the US. Thanks!
I have not heard that IV Clindy is no longer available. I suggest you send a request to the email: apdoctors@roadback.org and ask for the contact info for Dr. S in Iowa, call him and he would certainly know the status of IV Clindy availability.
I agree with Richie that the majority of people do not use the IV Clindy, it does seem to provide a good jump start to the protocol if you are able and willing to go to the lengths necessary to obtain this not so easily obtained treatment. My daughter started the treatment with three days of IV Clindy (it was supposed to be 5 but she had an allergic reaction) even the three days gave her a very nice boost (I think).
Regards~
Cheryl[/quote]
Karel,
My own experience was first seeing Dr. S in Iowa, the physician above suggested by Cheryl, and began my treatments that same day… after the lab at the hospital drew blood to send to the lab that Dr. Brown himself founded near Washington, DC. This test was to identify what organisms may have been involved and possibly playing a part in my illness. (This being done turned out to be financially helpful… will explain further down in this post.) I had just come to the hospital from my first visit with Dr. S, who was such a kind man/person, and knew he was a fine physician from everything read and heard. Five days of two a day IVs (early am and early evening at the hospital) were begun immediately. At the end of those five days, we left to return home. When back home, I was to begin Minocin, twice daily on Mon-Wed-Fri. I could soon tell that I had begun having a lot of die-off — the IVs and the Minocin seemed to certainly be doing their work. By the 4th months, I knew this program of treatment was working for me.
A nice surprise a month or two after returning home was learning that the charge for the IVs at the hospital I had been billed were to be reversed and refunded, because…. the mycoplasma tests drawn in the hospital had come back from Dr. Brown’s old lab as positive for two strains, and… the medication used in the IVs was the appropriate treatment to address the mycoplasma. My insurance reimbursed the hospital, and the hospital refunded the money I had paid them, just in time for Christmas. (If patients can afford the IVs, and if they are still available, they can be very helpful. But, many over the years have posted that they’ve done well beginning only the minocycline. There are many other things we can do to assist our bodies with their recovery — and I believe getting the sugar out of our diets, addressing yeast-fungal overgrowth, and learning about how we can somewhat track our pH/acidosis level of the body. Unfriendly organisms thrive in an acidic body.
Good luck with your decisions,
AF@laurawm wrote:
Hi Karel,
I had little success with anything until I began suppository edta heavy metal chelation. We acquire metals from fillings, vaccines, city water, and the environment generally and our bodies cannot get rid of them easily, and in my case, I have genetic mutations making it especially difficult as do many autoimmune patients. Many autoimmune patients are additionally greatly helped by chelation. Metals feed and interact with organisms and contribute to biofilm formation.
Here is where I get my edta and you should begin with a child’s dose and build up in order to gauge reaction and prevent kidney damage that is possible if the body is especially toxic and preempted to chelate too much at once via the kidneys/urine: http://www.chelationhealthproducts.com/cart/home.php?cat=4
Just a suggestion as it seems you have tried so many treatments.
Feel better,
LauraLaura,
What an interesting post. I’ve not been available to read and post very much recently, and when I added my own reply to Karel’s post, I had not finished reading all of the replies. Am saving your information, Laura, because am thinking some of us with longtime ongoing dental related problems may be helped by the information you’ve shared.
AFThanks Laura, I have done a hair analysis (DD) a year ago. It came back with too high uranium and barium, if I remember correctly from behind my office desk. The report stated that it was difficult to get rid of these because of the way they settle in the body. All the others were also slightly elevated but not in the red zone. If a test like this turns positive I tend to repeat it, just to see if I can trust the results, before taking measures. For this test I havent yet. I will look at your recommended webside. My RA came up over night and hasnt left me since. For some reason this is easier to associate with the effect of a mycoplasma than slow built up of metal toxins. You can see, I am not fully aware yet of how metals and mycoplasmas are intertwined. Thank you!
Just a note to assure all that iv clindy is not scarce. A note regarding Dr S…he is willing to send the clindy to the patient with all the necessary apparatus, including butterflies,if you use them, for a very low price. This is of course after you have had your first visit with him. He is very amenable.
Sunny
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