- This topic has 47 replies, 14 voices, and was last updated 13 years, 7 months ago by
.
-
Posts
-
Hi Carrie and everyone else :),
Sorry, I was gone this weekend and didn't take my laptop. Anyway, I just remember reading that pulsing was more effective, but I don't remember where, probably the book? Thank goodness for Kim, Maz, Lynnie, and all the other helpful people on this board! I am so thankful for all the information and support here!
I just checked the book (The New Arthritis Breakthrough -pgs 298-299), and basically it says that pulsing allows your body to rest from taking the drug and to prevent a hypersensitivity reaction. I think that what is meant, is that pulsing limits the amount of dead bacteria released into the system at any one time. In essence, I guess it prevents some major reaction to an overwhelming “bacterial allergy” that Dr. Brown subscribed to. I always thought that this bacterial allergy theory made a lot of sense as I have tons of allergies and seem to be very hypersensitive. So, I guess having the antigen (the dead bacteria) released slowly into the body would prevent an overwhelming allergic response. Also, the book says that tetracycline stays in the body for 48 hours.
I know that minocycline is recognized as an anti-inflammatory drug, and it seems to work that way in my body, at least, if I take it everyday. The book also says that Dr. Brown basically tailored his antibiotic therapy to a schedule that seemed to work best for the patient. I think that I have read that doses were given everyday, once or twice a day, as well as just one or two days a week, and everything in between. I think that you should just experiment with what works best for you. Hopefully you have a good doctor to help you? I think that I am going to have to figure out the dosing myself, but I am hoping that the new family doctor that I found will do blood work for me. I may go back to my rheumatologist, but only because I think that this is working. Maybe she can keep an open mind? I think that maybe we had a problem communicating before, but I don't know. I was so stressed out with my divorce, that maybe I misunderstood her…..
For Zoofie, I think that tetracyclines are supposed to be different from other drugs in that bacteria don't/can't build up a resistance to them. I think that it has to do with the actual physiological way that they act on bacteria. Also, I got a terrible yeast infection when I first started taking mino. Probiotics everyday have prevented that from happening again. I think that you are very smart to lower your prednisone slowly. I took months and months to wean myself off of my Enbrel. Finding the correct dosage of tetracycline or minocycline seems to be a little tricky. I know that more is not better! Hopefully, you have a doctor to help you with this? I am really glad that you are feeling better too!
Jeni
Thanks Jeni!:) I still eat just one pill pm and 1 am, my doctor is on vacation so I can not ask him if I should raise or not? do not believe that he knows, he put me at the first 2 pills am and 4 pm = per day every day …
However, I have [highlight= #fff” title=”” Xc=”tingling” Wc=”stickningar” closure_uid_db32a=”252]tingling?[/highlight] all over my body as soon as I took a pill, it does not seem to want to quit.
Thank you for the information:D:) Ill get probiotics! not sure wish one exactly but im going to look it up!:)Hi Zoofie,
Sorry, I don't know about the tingling. I really think that other people on this board have talked about having that symptom though? Hopefully somebody else can share their experience with you.
I just wanted to tell you that when I suddenly raised my mino dose to 200mg everyday, I felt so horrible you can't imagine! So, definitely raising your dosage slowly is the way to go. Also, I waited a couple of months before I raised my dosages, and I increased only one day of the week at a time. When I went from 200 mg M, W, F, to 200 mg everyday, all at once, I reacted terribly! I felt very strange and sick! So, just be cautious.
Take care, and I hope you keep improving!
jeni
Hi! Its been about 3 weeks since I switched from 200mg MWF to 100mg M-Sat. …same dosage of 600mg a week.
Well, as the 4th week approaches I notice I am now more rigid and achy through out the day where as before it was only the mornings….so I think this maybe too much for me so I think I am going to go back to
MWF……please let me know your thoughts on this. I also called and left my dr a message about perscribing me LDN let me know your thoughts and experiences with that too! Hope all is well!!!!HELLO HELLO!
Boy I learn stuff every time I visit the site. Thank you.
I started AP 2 weeks ago. Doxy 100mg 1 X a day 3 days a week for two weeks and today I start 2 X's a day for 3 days a week. Soooooo I'll see how I do with the new dosage.I'll have to get together that post ya'll have of your diagnosis and meds at the bottom of your posts.
I have been with this disease since November '07 with no remission, but improving by alternative methods as I went. I will post that info.My blood tests came back this month (first ones I have done) with no Lymes, yea!, and straight inflamed RA, expected, but BOO!
About vitamin D deficiency: D3 is so important concerning this disease. It has been seen as the biggest contributing factor and correlates the disease to the latitude in which you live (not getting enough sun). I worked myself up to 15,000 units a day, occasionally 20,000 (no fear here of toxicity). My tests came back very Hi in D so I can cut back. Bariatric Co. puts out a quality product you can buy on-line. The Chiro who has been treating me since the beginning, who is also RA and works a lot with immune disorders, has researched the quality of various supplements he recommends.
Blessings to you day!
Joy,
Cheryl:roll-laugh:PS What the mind can imagine the mind can create
Hi again! You know what I just thought of……as a child with acne I took mino….then I started the aches and pains and as soon as I discontinued felt 100%. So I think maybe the daily dosage is too much and might be creating DILE. So I will go back to MWF where I saw great improvements. ….,maybe I should even consider just doing 100mg on MWF instead of 200mg.
RE LDN: I have done LDN for over a year now. I started with 3.5mg and went to 4mg. There are always so many variables, but I'm not sure it has ever had an effect. I might stop at some point to see if I can tell the difference, but now that I am on AP I've added another variable.
I have been very bad since flying earlier this year. I'd say I went back a year. The guy who treats me had taken a geiger counter on a flight to test for the radiation. He says at 30,000 ft, it is death level, so he concluded that the radiation got the bacteria really going. It moved to parts that were not affected before also. I was worse at the other end of my flight and then even worse on the return, and since for about 5 months. There is a build up of histamine, a natural depressant, so maybe the LDN has too much to counteract. 😕Joy,
Cheryl[user=2422]Healer[/user] wrote:
I'll have to get together that post ya'll have of your diagnosis and meds at the bottom of your posts.
Cheryl – you can do that by clicking on My Account above right, then go to Profile (middle tab that will come up). If you put your diagnosis and meds into the signature box at the bottom, then save, it will come up at the bottom of every post.
About vitamin D deficiency: D3 is so important concerning this disease. It has been seen as the biggest contributing factor and correlates the disease to the latitude in which you live (not getting enough sun).
Cheryl – there is a great deal of difference in opinion on Vitamin D – you can look at past discussion by using the search function above. My doc is one that believes D3 IS important. However, I dont believe deficiency correlates to latitude. We also have a very big problem with D deficiency in Australia – and we have the most intense sun in the world here. 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)Hy Lynnie,
Boy, I love your country. I spent a year backpacking there. So beautiful…so unique.
Yea I just have to get it done (the signature part). Thanks!
There have been studies of correlation to latitude. There is even one on MS in Australia demonstrating the manufacture of D by the skin in Queensland VS Tasmania and the incidence of MS -even less evident in Europeans immigrating there. All is always controversial I know.
Sunscreen and other factors can block the manufacture of D in the skin. Our ability to manufacture D has to do with the wave lengths and the angle of the sun and the ultraviolet B range.
I'll check the discussion when I can. Great to have you respond.
Say Hi to Kooka for me.Joy,
CherylHi Carrie,
Sorry the 100 mg everyday didn't work for you. I had such a dramatic improvement when I switched. I have been on some other new supplements, but I can't imagine that they have helped THAT much! I have been taking type II collagen and also vitamin D, since apparently I was deficient. I live in Washington state and have been staying out of the sun since my bout with skin cancer, and can believe that I'm low. I did read a study about the type II collagen in which four people out of 60 or so, went into full remission. The functional medical doc that I saw wanted me to try it. It's fairly cheap and has no side effects so I thought I might as well try it. I hope that you can find a dosage that works for you. I know that I have read somewhere that people do take 200 mg everyday, but when I tried that, it was way too much too fast. My joints definitely felt better, but I felt really weird and sick. Maybe you could SLOWLY work up to everyday? I would ask your doctor what he/she thinks.
Hi Cheryl,
I just recently read about the LDN therapy. I wonder if anyone else here has had any luck with it? Seems like an interesting idea. I'm only taking 5000 mg of Vitamin D a day to correct my deficiency. We'll see in 3 months or so if it helps the deficiency.Take care all,
jeni
[user=2422]Healer[/user] wrote:
There have been studies of correlation to latitude.
Hi Cheryl,
Nice to see you again!
The latitude thing and correlation to MS is pretty interesting. I'm sort of fascinated by these correlations, as my brother has chronic progress MS. Discussing this with my LLMD, he believes that Lyme is probably the reason for the northern hemisphere having the greatest number of MS cases. This study pretty much bears this theory out…the maps of the incidence of Lyme and MS deaths in the US are almost indistinguishable.
http://www.canlyme.com/megan_geostatistical_analysis2.html
All the best for your new road back with AP!
Peace, Maz
What is LDN?
I have been eating my tetra for about, 1 month and a half? i think
It helps! =) nooot 100% but it helps.
In the mornings I have ( not all mornings) stiffness and swoolen hands and im rigid and achy..but it goes away during the day. I take 250 mg twice/day, do you think i should raise the dose? im a litttle bit scareed of my stomache, if i raise.
Im trying to cut down pred, is there something else i can take ? something to hold the inflammation down.?
LDN is Low Dose Naltrexone. You can read about it at http://www.lowdosenaltrexone.org. If it were me, I would be cutting down my pred VERY slowly. You can read alot of past discussion about this by typing “weaning pred” into the search box above.
As 250mg tetracycline = 100mg minocycline, I dont believe anyone would recommend a higher dose than this. Generally, the success of this approach to treatment is not about taking more antibiotic. It seems that you are already getting some benefit so that is good news. Patience is also required, as this is usually a slow road to wellness. 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)Hi Maz!
Good to see your smiling face again.
The guy who has been treating me since the get-go has had a great deal of success with MS. He views autoimmune as autoimmune and not so important which it is. He told me of statistics about a high percentage of MSers having a sick cat shortly before their getting the symptoms. His sister was one of these. His Mom had RA so it is definitely in his family. Now the cat thing is interesting… He would also say D has a lot to do with autoimmune period. He has RA and he feels he's at his best at 20,000 D. He can even eat nightshades then and prior even some mashed potatoes or 3 French Fries would turn his wrists into glass so that he could not do his chiro work.This whole thing is so interesting, if it weren't so painful.
I can't tell if I am Herxing or impacted by the humidity. Yesterday pretty good and today a very slow start.Herbal body wrap for me today to lower lymph build-up.
Blessings to your day.
Joy,
Cheryl
The topic ‘ Finally feeling better!’ is closed to new replies.