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[user=2034]whitefoot[/user] wrote:
We interviewed all the suggested docs in our area (NYC) from the Road Back list and found most of them wanting, some for their considerable consultation fees-$500 and up (they don't take insurance and want green/cash) or knowledge level . The family doc is very unsophisticated but will write a script for Minocin but doesn't have a clue about AP.
Chris, did you check in with Dr W, a rheumy in Berkeley Heights, NJ? A regular rheumy, I believe he takes insurance and is very conversant in AP, also using IV clindamycin where indicated. He is also a one-stop kind of guy, so if a patient needed more conventional meds, then he can help with that, too. He also has offices in NYC, but I understand it's preferable to see him in his NJ offices, where he is not working so much within the confines of conventional medicine looking over his shoulder.
You really have done your research and I'm thoroughly impressed! WOW! You must love your wife very much to advocate so strongly for her like this. 🙂 And, I sense, a discerning person, who sees past the smokescreens put up by conventional medicine discouraging the use of AP.
If you can get a script for minocyclne, then you're half way there really. It can be more difficult navigating AP, as a newbie, without an experienced doc to help, but it can be done and you seem like the kind of people who will ensure you do your homework to give your wife the best possible start on AP possible.
My hubby is a cancer survivor, too…ten years now….and you're right that there is always a concern of it possibly returning. It's not much different for RA, either, or any other rheumatic disease. While AP is a very effective treatment for most, it does not proclaim to be a cure…though, Brown's goal was to get patients to remission and eventually get them off their antibiotics. Not all patients can and some will remain on low maintenance doses for life, but this is, by far, preferable to relapse or taking stronger medications.
All the best, Chris, and glad you found us, too. If you want me to send you Dr W's contact info, I'd be happy to do that. You could then put in a call and see if he takes your insurance.
Peace, Maz
Chris – welcome! I'd just like to add that I, too, am glad you found us and am beyond mightily impressed by the depth of your research, your wisdom and by what you and your wife have achieved through this. I have a strong feeling that, whilst it may take a little time, you will find a good 'fit' for this next part of the journey. You will certainly find good support on this site and alot of people willing to share whatever wisdom and experience they have gained on their own particular journies. 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
You are too generous with your comments. We only try our best for loved ones and those in need of help. We are newcomers (newbies) since Sept 2009, so we really appreciate experienced folks like yourself. We have benefited by the help of others and are glad to return the favor.
Yes, we would appreciate the contact information for Dr. W both in Berkeley Heights, NJ and Manhattan or any other part of NYC. We are about to start and believe, like you, that a doc who has a “hand” in both allopathic and alternative medicine would be the best for us. Again, thanks so much. One part of Wilhelmina's (my wife) protocol that was left out was her recent use of a product called Rheumashield by Douglas Labs. Like most natural products, it doesn't have a big study behind it just a small double blind crossover one for RA. Douglas Labs is a credible company but when one takes a lot of products, the down side is if they work, it is hard to determine which one is effective or is it a combination ie the kitchen sink approach-not that scientific.
Best
Chris
I started taking LDN two days. No sleep at all on the first day of 4.5 mg. Last night, I took Klonopin along with LDN(Pharmacist at both Gideon and Irmat ok'd taking them together). I slept like a baby only waking up at 3 am(to pee)!!! Went back to deep sleep again. Too early to tell if it is working since it usually takes months to get into your system. Last few days, I have used Celebrex and that has always given me great relief and energy. Will have to check later for IgeneX testing as Maz suggested.
[user=2034]whitefoot[/user] wrote:
Yes, we would appreciate the contact information for Dr. W both in Berkeley Heights, NJ and Manhattan or any other part of NYC.
Chris, have sent you a PM with Dr W's contact info in NJ for Wilhelmina. When you call, they should be able to give you his NYC contact info, but I understand it's actually better to see him in his clinic in NJ where he can offer more extensive treatment, like IV therapy, if indicated.
Please stay in touch and let us know how you get on!
Peace, Maz
Hey Gang,
I am now on my second week of LDN and the Mino. 100mg MWF. So far so good! I am having a little trouble sleeping but since I don't work, I can always sleep in the daytime!hehe I do think the 1.5 LDN makes me feel better. I seem to have more energy. My muscles have been feeling pretty good but I am still on 30 mg. Prednisone. I'm hoping to start down on it this next week. Thanks again for all your help! If I am having any hexing, it doesn't seem to be too bad. Nothing I can”t handle!!
Hi,
It is so good to hear how LDN is working for others. I am on wk 6. 4 wks of 1.5 mg and now 2 wks of 3 mg. I had alittle insomnia when I went up to the 3 mg dose, but that was only a few nights of waking alittle more. This weekend my sleep was back to normal. I was having flares every 6 or 7 days, and now I went 10 days and the flare was not near as bad and only lasted 1/2 day instead of a whole day. I was taking prednasone 5 mg AM and 5 mg PM and have just cut my AM dose to 2.5 and I still feel good.
I feel good, alive again. I must have been depressed before. My body is healing very slowly, but healing.:roll-laugh: Energy wise, I am tired, but that is because I am doing to much work on the farm. And I have this sence of peace.
I go up to the 4.5 dose in 2 wks.
lor
Hey Gang,
I have a couple of questions for all of you on AP and LDN. I have been on 1.5 of the LDN for 2 weeks. When my one month is up, should I increase the dose and if so, to what dose do you all recommend? Also, I have been on the Mino 100mg. MWF for 2 weeks now. After one month of it, should I increase the dose or wait longer? I did get my biopsy results from the surgeon today. The abdominal “lumps” were lipomas with fat necrosis and dystrophic calcifications. I still have hundreds of these in my abdomen that need to be removed but at least now I know they aren't malignant. Thanks for any info you can give me on the LDN and Mino doses. Becky
[user=1800]bhodson[/user] wrote:
Hey Gang,
I have a couple of questions for all of you on AP and LDN. I have been on 1.5 of the LDN for 2 weeks. When my one month is up, should I increase the dose and if so, to what dose do you all recommend? Also, I have been on the Mino 100mg. MWF for 2 weeks now. After one month of it, should I increase the dose or wait longer? I did get my biopsy results from the surgeon today. The abdominal “lumps” were lipomas with fat necrosis and dystrophic calcifications. I still have hundreds of these in my abdomen that need to be removed but at least now I know they aren't malignant. Thanks for any info you can give me on the LDN and Mino doses. Becky
Becky, so pleased to hear your biopsy results are not of any serious concern! YAY! 😀
With the LDN, I've been taking it really slow…working up in .5mg increments every month. Some folk are able to tolerate 4.5 mg right away, but as I tend to react and herx all over the place, I decided to err on the side of caution for myself.
An LDN old-timer gave me some good insight for which I'm very grateful, though…she said to ask my doc to prescribe LDN capsules in 1mg and .5mg doses, so the dosage could be adjusted up and down very easily if I found the dose to be too much. I started on 2mg and had some sleepless nights the first couple of weeks and some herxing of old neuroborreliosis symptoms, so that gave me the heads up to go slow. I'm just heading into my third month and starting on 3mg at the weekend. I'm expecting a return of some minor insomnia, as I experienced that again when I upped to 2.5mg last month.
I think, if your prescribing doc is open to this, you may just have to judge things yourself by how you're reacting, as we're all probably going to be quite unique in response.
Peace, Maz
Well I did 1.5 for 5 days, 3.o for 5 days and now 4.5. I did not have any issues with sleep but did have some stomach issues every time I up'ped a dose. They have since gone and now I'm waiting to see a difference. I'm also waiting a week to start backing off my Plaquenil slowly. I would love to get off of that.
Andrea, so you are taking Plaquenil (an immunosuppressant) and LDN both at the same time. I thought immunosuppressants are no-no with LDN since they both will supposedly cancel each other's effect out. I like the idea of using it though to control the inflammation. My inflammation and pain levels are really going overboard ever since I started using LDN and I am using 2.5 mgs now. I stopped it for two days and the pain disappeared. Using LDN has been a real painful experience so far. It does give a lot of energy and relief from fatigue but the pain is terrible and so is the insomnia.
[user=1212]APbeliever[/user] wrote:
Andrea, so you are taking Plaquenil (an immunosuppressant) and LDN both at the same time. I thought immunosuppressants are no-no with LDN since they both will supposedly cancel each other's effect out.
Hi APB,
The question of plaquenil being an immunosuppressant came up a while back on another thread and I just searched it out, as I came across some info on Plaquenil that may interest you in this light – will cut and paste this below:
The strange thing about plaquenil or hydroxychloroquinine is that it was originally designed to treat a serious protozoan, febrile-causing infection, malaria. What is very strange to me is that a drug such as this would be used to treat such an overwhelming, devastating infection but is also said to be “suppressing” the immune system? It just doesn't make sense. 😕
I found an interesting piece on the Arthritis Insight website about this:
http://www.arthritisinsight.com/medical/meds/plaqmtx.html
“Plaquenil may not fall into the DMARD category by definition. Although it does relieve pain and inflammation at least one study has shown that it does not slow the disease process. In fact, in this study joint erosions after two years of plaquenil therapy were no different than if the person had not taken DMARDs at all. But we must keep in mind that this was one study.”
So is Plaquenil strictly a DMARD (disease-modifying anti-rheumatic drug) or does it merely have anti-inflammatory properties? Do 'they' really know?
Wiki's write up in interesting:
http://en.wikipedia.org/wiki/Hydroxychloroquine
“Classification and use
Hydroxychloroquine is classified as an anti-malarial medication and is one of a number of drugs that have been used for many years in the treatment of malaria. It is also useful in treating systemic lupus erythematosus as well as rheumatoid arthritis and Sj
Hi APbeliever,
I don't think Plaquenil is an immunosuppressant. Rather, it is a type of anti-inflammatory.
As for LDN and immunosuppressants not being compatible, that's a claim one can find in many places on the web, but so far I haven't seen anyone point to any references to back it up. At this point, I believe that it is most likely an unfounded assumption based on how LDN is believed to work. Since I have come across cases of people successfully using LDN along with various immunosuppressants (i.e., azathioprine, methotrexate, and prednisone), I suspect that this assumption is most likely false.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinThank you Maz and Phil. Phil, I also found many people on the web using immunosuppressants like MTX, Enbrel, etc with LDN. I was suprised, though since I read on the LDN website that one is not supposed to take any immunosuppressants while on LDN. But hey, whatever works to kill this disease. I am also thinking about trying Plaquenil again along with LDN. Let's see if the combo kills the pain.
Hey APB,
I have been on plaquenil for almost a year and I think it is an anti-inflammatory. I have had joint damage since I started using it, but maybe not as bad as it might have been. My LLMD has recently scripted LDN for me along with the AP protocol and plaquenil so we'll see how it goes. Please keep us posted on how things are going for you.
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