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I have had pulm & lymph sarc for 2 years now.
I am wondering if anyone has used low dose naltrexone for their sarc?
I have had pulm & lymph sarc for 2 years now.
I am wondering if anyone has used low dose naltrexone for their sarc?
i want to but i cant get my docs to write it for me...i am on remicade and paying BIG time...and still not feeling good...my last PET scan was good but i am still forgetting everything and having extreem fatigue...migraines ...ringing in the my ear...my vision is changing...and my memory...major hip and back pain..i also have sleep apnea and i am not compatable with the CPap machine...so i have to figure out how to deal with that on also...
LDN has no side effects...and I want to try it...!!!
I have found a doctor that write the scripts. I just need a first visit for him to "see" if it will be appropriate for me. If you google LDN, there is a discussion board on Yahoo Groups. There, people that DO get scripts can direct you. Also I have been told that you can get a script by calling certain pharmacies, so no MD script would be needed. For me, I have some other health issues, like Hasimotos Thyroiditis as well, so I rather see a MD and get an evaluation first. Good luck! Let me know how you do. I hope you feel better. I forget stuff too. I keep telling myself that is why sticky notes were invented. = )
Oh yeah, I did not find anyone on the Yahoo site with sarc that took it, that is why I came here. Most those on that Yahoo site are MS, cancer and all else.
i was told by the docs that i work with that this med would be fine to take with any autoimmune disease...i have lupus, behcets,,hashimotos thyroiditis,, and sarcoidosis...ldn can be taken ...so they tell me... it is just not well know or used often enough...
Hi, I have had pulmonary sarc for 4yrs I also have endometriosis for which my fertility dr is treating me with LDNaltrexone. I am tapering off 15mg prednisone and will start a 6mth treatment in 6wks. My sarc dr wants me to start methotrexate but I've heard good things about ldn and it's v hard to get it prescribed here so I've told him to give me a window and I'm going for it!
flerg,
PLEASE let us know how you do. I am glad that your MD was open to it. The pulmo's and my GP is NOT interested in it.
Hope to hear GREAT things for you!
Well my doctor will prescribe it. He called the pharmacy when I was in his office this evening, but the pharmacy was closed. This doctor is not my primary or lung doc, but a small independent doc's office. He practices natural medicine. So, if your allopathic MD's poo-poo's LDN, try calling a natural health or vitamin store, most of those natural doc's frequent there and the stores manager or employees may be able to direct you to an "open mind".
I am keeping in touch with this subject with interest. I am sorry that I seem to be using you all as guinea pigs, but I am suspicious of any drug. I had my fertility & eyes ruined by different doctors' mistakes. I have every faith in my specialist now, but they are only human.
Please let me know how you feel on the LDN...and how your PET scans look on this medication...I would love to find a cheaper alternative to REMICADE...not only am i spending lost of money...all my vacation is spent on time off to be infused and recouperate.
My perspective on LDN is it is a cheaper drug (under $50 monthly)...and these doctors tend to push LABLE drugs... that have many side effects...LDN does not have side effects...LDN is FDA approved...but not for sarcoidosis or autoimmune diseases...but how many drugs are out there that have mutiple uses??
Krissy, Do not be concerned about anyone being a guinea pig. We all are guinea pigs...doctors are practicing medicine, it is NOT a clear cut and dry science. So much is unknown as we know with sarcoid. We all have free will to choose what we will or will not try/take. I am not interested in prednisone or any other "junk" the MD's push. Will I take the other stuff? Yes... as a last resort, but not until I try other methods first. ; ) At this point and time, I feel pretty energetic most days, but my breathing is not as deep at it seems it used to be. I am hoping LDN will improve that with the lessening of the inflammation. = )
nclynnk, I will let you know and the others know. I am supposed to receive the meds in the next couple days. (with shipping $78.00 for 90 pills at 1.5mg pills, avocile filler) My pulmo has NO idea that I am doing this. = 0 I gave him the info my first visit, asked him on my second visit and he never looked at it. My primary and natural open minded MD does. I also informed my hematologist about it because he deals with cancer patients and he seemed interested and asked me questions about it. He said he would google it too! = ) Good for him, HELPING his patients. I do not have many PET scans. I have had CT scans (once in 2006 and 2 this year) and PFT's. My last PFT (yesterday) compared with this past June, some numbers have gone south, so I am hoping for a miracle with LDN. By the way, prednisone IS off label for sarcoidosis, so I do not buy into the excuses some MD's make that a drug is not labeled for such and such use...bunch of malarchy! I am doing the LDN for now because I am a student and cannot handle another "protocol" and herxing at this time. I need to attend class as missing one day, I would miss too much information. I am studying graphic design and learning the Adobe programs, so each class is essential. (plus miss 3 classes and my grade gets lowered a letter...I have a 3.95 GPA, so I do not want to ruin it.) Will I try the other protocol once school is done? You BET! 2 of that protocols meds ARE listed as orphan drugs for sarcoid. There are NO other options other that the "sit and wait" until symptoms come up, take prednisone or some other med, supress the immune system further and let the sarcoid party in my body while my immune system is defenseless?..Only my own opinion. People have to do for themselves what they feel is best. I am NOT knocking anyones actions or decision of what treatments they choose. I feel my choices are the best for me and my situation and those may or may not be the best choices for others. So YOU are in control of your own decisions and I do not knock anyone for doing what is BEST for THEM. But it is amazing that if I was a balding male with ED and/or PE, I would be CURED with a HUGE smile on my face. But I am a female with sarcoid...I got the booby prize! = ( I will CHANGE this from a booby prize to hopefully something that helps me so in turn I can help others with information and support. At times, in something that seems bad, much good CAN come of it. I hope that this nightmare will be turned into a blessing. = )
Good health to all!
schnauzermom,
I cant wait to here what kind of results you have over the next six weeks after starting the LDN...if you get the results i expect...i will begin pushing my docs for LDN to replace the remicade...good luck!! :)
Hi all,
Came off the ")%**$"ing steroids a wk ago, (it took almost 4wks and all the old sarcy symptoms have come rollin' around again, dyspnea wheeze and tiredness, but), I immediately started the ldn, 2mg per night and will up the dose tonight to 3.5mg. No vivid dreams or sleep disturbance, in fact I slept through the alarm and was late for work! Got vit d blood test back today and it was lower than a snakes belly......am taking a vit d suppliment, my calcium is a little high so hopefully they can balance themselves out without making me feel like I was punched by a truck! will update next wk.
flerg,
Thanks for the info. I actually googled LDN and they have a site and a Yahoo Group too. Most are MS people as it has done wonders for MS patients. I have not had any lucky finding someone with sarc on it though. I guess I may be the first at their site, who knows? I am SOOO happy for you! that is wonderful news that you are off the steroids. I am wondering about your vitamin D. My vitamin D is 15, but my vitamin D1,25 hydroxy is 61, which is out of range (normal is 15 - 60). I have been avoiding ALL vitamin D containing things becuase back in June my vitamin D1,25 was 82 and I was having a TON of symtoms like anxiety, no appetite at all, nausea, fatigue, difficulty sleeping to name some so I started to avoid vitamin D foods like fish, milk, cheese, egg yolks and I felt better. Now with that new number of 61, I know why. I also stopped all fish oil supplements. I feel better than I did back in June. I do hope your wheezing, tiredness and dyspnea resolve soon. Please let us know how you are doing, ok? Well wishes!
nclynnk,
I will let you know what happens with the LDN. I actually could not wait so I drove to the pharmacy (16 miles one way) to pick it up. Sending it priority, I may have got it tomorrow or Monday, but I just wanted to start tonight. If I was going to have sleep issues, better to have them on the weekend than when I have to get to classes. Most allopathic doctors are not open to off label scripts, at least that has been my experience. The ones I have seen to be concerned with litigation if the med causes issues. The natural MDs seem to be open to new medical "breakthroughs" or discoveries. I am not knocking allopathic MDs at all, but I have never had any lucky getting something off label except prednisone for the sarc. People at natural health, natural foods or vitamin shops are a plethora of information on diseases, doctors, medications as they talk to MANY people that go to these types of doctors that recommend out of the box treatments. My MD even suggested Vitamin C IVs! I know people that have done that (for CFS or Lyme) and they feel better. I myself have not tried it. One thing at a time for me. I do not want to overload my system and not be able to figure out if one thing is helping or hurting. But like flerg, I also will update you on my progress. Be well!
Of yeah, I am starting at 1.5mg tonight.
Just a quick link for further reference
http://ldn.proboard s3.com/index. cgi?
flerg,
I could not use that link, it would not connect. Sorry. Could you try to repost?
Thanks!
Well I did the 1.5mg last night. I had a light sleep night. Do not know if it was the LDN or my dogs, I put the flea/tick stuff on them and they both were restless they kept shaking which made their ID/rabies tags clank all night long. But I got up with both nostrils open and no post nasal drip stuff. So that is good. I feel like I can take a deeper breath too. Placebo effect? I do not know but I feel pretty darn good. Will keep you all posted.
flerg,
Ah yes! I have been there, the eye thing and that LDN site. I cold not find any other sarcies though. Am I "THE" token sarcie??? Most there are MS'ers. But yes, much information there to utilize and they are helpful just as this site is.
Well took 2nd 1.5mg LDN last night. Tossed and turned, but slept some. I am not dead tired and actually have great energy. I have had that since my MD told me to take these digestive enzymes (DE) last month. With taking the DE's I also lost some weight, a HUGE plus! Anyhow the LDN has not brought scary dreams, but vivid nice ones. No other side effects though. = ) Last nights dream was about friends form high school, my good friends and us hanging out like we used to. We were like family. Nice dreams, great memories! My breathing is better than I expected. I carried the vacuum cleaner on the steps and was able to vacuum them without getting winded as I have been for the past several months. Nasal passages are still open, some slight post nasal drip in the am, but that has clear up as the day went on. The chest tightness is gone and feels like I can take a deeper breath. I regret not taking this stuff a year ago, but then again I asked and no regular MD I saw would prescribe. The MD that prescribes is a natural type. If you go this route, stay away from well known natural MD's. Their office will have you do $2K+ worth of crazy tests that they did not even use for me. I did that, saw the MD 4 times and they just kept stringing me along for more supplements, more chiro appts, more putting rocks, batteries, wood, etc on my abdomen, making my hand rock and shake, more this, more that and my insurance did not cover much of the cost. Waste of time and such a waste of money.I felt NO better after 2 months of visits with not only the MD 4 times, but the nutrition person, the EFT person, the chiro, the kineasiology (sp?) person. Plus the stuff the well known health MD had me taking made me sicker and when I tried to get a hold of him, it was a Friday and I was told there were no MDs are in the office on Friday, nor do they get pages or phone calls. I told them I felt sick and was going chernobyl and needed to know what I needed to do or take or if I just needed to go to the ER. That wonderful well known MD called he the following Tuesday. My regular MD got me in that Friday and told me not to take pregnenelone and DHEA drops anymore then asked me why when I was taking 60 Armour thyroid was I taking 90 now and where was the test to justify the increase to 90? (now this was my first experience with thyroid meds increase and that well known MD did this on symptoms alone) That well known MD's office NEVER ran a test to know if I needed 90 armour thyroid. My regular MD ran a thyroid panel and it showed I was taking TOO much armour thyroid and the pregnenelone and DHEA just made the issue WORSE. I was shaking, sweating, had horrible anxiety, heart palps, felt nauseated, could not sleep, was irritable and terrified. I NEVER went back to the quack well known MD. Just watch WHO you go to. I have noticed the smaller, one MD office you get more personalized attention and they seem to be willing to work with YOU as an individual and not use a one size fits all approach. My natural MD takes the time to not only talk but LISTEN to me, about 45 minutes to one hour PER VISIT, EACH VISIT! I am lucky to get my sarc MD for 5 minutes!
Hi all,
I have had sarc for two years now, been down thelong road on Prednisone which nearly killed me, they took me off it as it was not working and just making me so ill. I have been on an alternate therapy called Bioresonance, it seems to be working to some degree. I have better days than bad ones, but the main thing is that I am not on any meds whatsoever. I only have to go back in 3 months time to my specialist for bloods and lung function tests. Last test showed that 2 of my results had improved one was still low but stable. Could it be the therapy that I am having? I have no idea but it is worth it. It is completley pain free and no medication. So what the hack I will continue with this.
How does Bioresonance work, well the human body gives off electomagnetic waves(oscillations). Cells, tissue and organs all have a specific oscillating pattern and these correlate and influence each other. The waves of a healthy person differ in structure from those of an unhealthy person.
Negative influences like metal toxidity, bacteria,parasites,viruses,allergens, radiation and chemicals, as well as lifestyle factors, including stress, lack of exercise and lack of sleep, all affect the body's health and often lead to disease.
The bioresonance device detects, measures and analyses unhealthy signals via electrodes placed on the patients body and after thorough testing treats accordingly.
Bioresonance Therapy is an effective, non-invasive treatment for the whole body. Through this therapy they test and treat the possible underlying causes of an illness, not only the immediate symptoms. The device they use is the Bicom, which is developed and manufactured in Germany.
I will keep you all posted on my progress, just recently I had 3 weeks of no pain and felt like my normal self again. This last week that has gone by had found me with a lot of joint pain, stomach pain and severe chest pain that I was unsure if I was having a heart attack or not. I could not take in even a normal breath as it was so sore. Saw my therapist on Friday, the machine detected bacteria in my digestive tract, which she programed and treated. It is Monday the 22 and the pain in my chest had gone by Sat, my stomach is a little tender but so much better. My joint pain is still there but seems to ease off as the day goes by. Will let you know how I go from here on.
Take care everyone
Bubs
Schnauzermom,
I don't envy you being messed around by the health system there, here in Ireland I've got access to the "top dog" of respiratory consultants once a month and it's free and a brilliant general practitioner 2 min up the rd available at any time, all more or less free! I don't know much about the Hashimoto thyroid thingy you have, but from what I understand a low vit d hydroxy 1, (mines 37), and the range is 75-200, leads to low calcium absorption and both these factors cause the parathyroids to work overtime, symptoms =shaking, sweating, anxiety, heart palps, nausea, insommnia,restless leg, irritability.I get cysts where my salivary glands get blocked when I start taking vit d due to hypercalcaemia and restless leg so I take magnesium. It's hard to get a balance, I think we're genetically flawed what with this and the hla-b27 bloods and hence the auto immune diseases.
Wish I was getting the funky dreams, just insommnia and itchy! Crackle gone though.
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