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MS & Fibro: Medications

Updated on February 13, 2016
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Medications I use (Rx, LDN, and "other") for my health problems

Prescription Medication(S) for people with MS:

Bear in mind that I am a patient, not a doctor. Also remember that MS is very different from person to person. I know I may sound like a “broken record” but so many people lump us all in the same category and that is NOT a good thing. I am going to go on to talk about some of the medications currently available for people with Multiple Sclerosis and will go into a little more detail about the medications I’ve taken myself. I am also leaving out all of the supplements I take (like fish oil tablets, magnesium, vitamins B and D, etc.) since they are all over the counter (OTC). I am not leaving these OTC meds out because they are not strong by the way; that is a fairly common misconception. Please do not ever make the assumption that, just because you can get something without a doctor’s prescription, a medication (or food or drink) can’t be harmful. I know people who have given themselves liver problems to the point of going into renal failure by taking OTC products, either due to taking too much of something and/or due to a bad drug interaction between the OTC medication and something else.


Bear in mind that this section (and others) may switch from current to past tense. That is because I am trying to update this to keep up with what is happening in my life but MS makes life very complicated, to say the least.


Finding out about having MS was a roller coaster ride. I found out I had it and I was very upset. Then I found out there was a medication available and the sadness started to dissipate. Then I found out the only thing available at the time of my diagnosis was an injectable medication (known to cause “flu like symptoms” and depression) that could later lead to serious liver damage.


It’s bad enough not knowing how you are going to feel in a day but finding out there were no oral “disease modifying drugs” (DMD) and that the only medications that were available were injectables with all sorts of known side effects certainly did not help. NOTE: Gilenya, Tecfidera, and Aubagio are the (as of now) newest oral disease modifying drugs (DMDs) to be approved for relapsing remitting MS. I will be switching to Tecfidera (AKA BG12) in a few weeks myself.


My first medication was one of the “CRAB” drugs (Copaxone, Rebif, Avonex and Betaseron). I was only able to take this for a little under six months. It didn’t help me, and the side effects made me feel a LOT worse. The first time I took it I woke up with horrible chills (this was on a day that was over one hundred degrees and humid in my area. It was like having an internal air conditioner that I couldn’t turn down or off). The first one I tried was a subcutaneous injection; meaning under the skin as opposed to muscular or IV. I believe it was either an every-other-day or three times a week injection.


I had a bad attack while on this medication and I went off of it because not only did it make me feel horrible but it did not seem to be very effective (for me). Bear in mind that I know of many others who do benefit from this medication though – we all react differently so you cannot go by my own experiences with meds (and I know it is incredibly frustrating that we are all so different in this respect. It makes finding what will work much harder than it should be).


The next medication I went on to was Avonex, another CRAB drug. Avonex is a once a week intra-muscular injection. I was very intimidated the first time I saw how big the needle was (twenty-three gage, one and a quarter inch length (Biogen 2013)). I called my Neurologist to tell him how shocked I was by the needle size. He told me that he couldn’t understand why I would be so upset by this considering I had (at the time) numerous piercings. In my opinion this was not a good or helpful reply. At least with piercings you have no “side effects” plus they are not something you have to do every week. I think many doctors also suffer from “foot in mouth syndrome” from time to time. It would definitely be nice if people would just think (and try to put themselves in our shoes) before they speak. A weekly intra-muscular injection is not the same thing as a tattoo or a piercing. Perhaps he thought his response was humorous but he was wrong if he did.


Like the first medication, Avonex also gave me horrible side effects that would make me sick for three to four days but it also appeared to be helpful for me in other ways. My reason for thinking it helped is that I haven’t had an attack since 2000 (and I’m knocking-on-wood in the hope that I’m not jinxing myself by writing this) and because a few of the lesions that appeared on my MRIs diminished a bit since having been on it.


About three years ago I was told about a way to make the side effects far less potent (again – this works for me and several others but I can’t promise that it will work for you). I spoke to a nurse in (approximately) early March of 2010 and, when I complained of how lousy the Avonex made me feel, she recommended I try eating fresh (i.e., unprocessed, uncanned, unheated) pineapple about an hour to thirty minutes before injecting because it has an enzyme in it (Bromelain) that helps lessen the side effects significantly. FYI: Bromelain is a natural anti-inflammatory. She reminded me that the pineapple had to be fresh in order for the enzyme to be present (but I did have one MS friend tell me she used canned and felt it still helped. Then again, another one of my “MSer” friends told me the exact opposite and swore that she would only use fresh pineapple from that point on). I found that the more pineapple I ate, the more it helped. Unfortunately I am not wild about pineapple aside from how well it worked with making the side effects tolerable. I loved it for that but not for the taste.


My Neurologist also told me she had been telling her patients about this and that she was getting good feedback from them (for all of the Interferons, not just for Avonex). She also emphasized drinking lots of water the day of and after the shot. This was not a shocker to me since the “sickness” I felt after the shot felt a bit like a really bad hangover. An online friend of mine who has MS and who uses Rebif said the pineapple helped her tremendously.


I began making smoothies instead of eating the pineapple all by itself. The smoothies worked really well; I'm glad too. I got very tired of Pineapple (I have never been a fan but having to have it every week made me hate them after a few years). The only bad thing about this was that my body appeared to adapt to them. I recently tried to just eat pineapple and it didn’t help at all so I now had to make myself a smoothie every time I did my shot. No matter how good the smoothie(s) may sound, for me they really were not after a while. When I have to eat or drink something every week it winds up tasting like medicine to me.


Since I have been asked for a smoothie recipe so many times in the past I will include what I used to use in mine (and I want to note that, for some reason unbeknownst to me, banana makes the smoothie far less effective. I don’t know why though).

Quick(ish) Pineapple smoothie recipe:


Ingredients

•one whole (or half) pineapple)

•one yogurt (blueberry / vanilla work well)

•coconut water (or apple juice) – about 12oz (to taste)

•Optional: Blueberries or Strawberries

•Optional: approximately 4oz milk/cream/coffee-mate (coconut cream is pretty good in this too) -I put in cream or coffee-mate to help tackle the heartburn the citric acid in the pineapple gives me.


Instructions


Put contents into blender (with ice cubes if wanted) and blend for about a minute. Drink approximately 30 minutes prior to injecting (gradually finish as much as possible).



Quick(ish) Pineapple smoothie recipe:


Ingredients

•one whole (or half) pineapple)

•one yogurt (blueberry / vanilla work well)

•coconut water (or apple juice) – about 12oz (to taste)

•Optional: Blueberries or Strawberries

•Optional: approximately 4oz milk/cream/coffee-mate (coconut cream is pretty good in this too) -I put in cream or coffee-mate to help tackle the heartburn the citric acid in the pineapple gives me.


Instructions


Put contents into blender (with ice cubes if wanted) and blend for about a minute. Drink approximately 30 minutes prior to injecting (gradually finish as much as possible).



~~~~~~~~~~~~~~


Now all of that said, I wanted to mention a few other medications. I did take a two-month “break” from Avonex back in 2000 to try out another medication called Rebif which is also a subcutaneous injection. The Rebif seems to work extremely well for many people but it didn’t work well for me and after two months I went back to Avonex.


My Neurologist asked me if I had any interest in switching to a new oral medication called Gilenya but after reading about the side effects (i.e., reduced blood pressure, making the user more prone to infection, etc.) I decided to stay with Avonex. As with the other meds, I know of many patients who have truly benefited from Gilenya but I was too scared to try it. At this time, there was another medication being studied called BG12 (from Biogen, the same company that makes Avonex) that sounded very promising. This is another pill and, while it would be a brand new medication for MS patients, it has been around for years in the UK (and has been used for years to treat psoriasis).


There are other oral medications in the works, but BG12 (AKA Tecfidera) is the one I’m most interested in. I know there is another one with a similar projected release date but, when I read that it had a 10% likelihood to cause hair loss, I decided against it (one side effect from the Avonex that I forgot to mention is how thin my hair has become. I believe that at least some of the hair thinning is from the Avonex. I don’t know for sure, but I hope and pray to someday get my “normal” hair back even though I realize it may be too late for that to happen).


I should also mention that most of the medications I have just written about are for people with relapsing remitting Multiple Sclerosis. I don’t know what is available for other forms of the disease (Benign, Primary Progressive, Secondary-Progressive, Malignant and/or Chronic Progressive (NMSS. 2013)) but I hope and pray medications are in the works for MS patients in these categories as well. I believe things like liberation therapy for people who have Chronic Cerebrospinal Venous Insufficiency (CCSVI) and/or stem cell treatment may be helpful for more progressive forms of the condition. Please consult with your medical provider if you wish to learn more about this.


One thing that I take is not considered to be “real medicine” in many parts of this country. It is called Low Dose Naltrexone (also known as LDN). It really boggles my mind that it hasn’t been approved as something that can be prescribed by doctors here - my hospital does not recognize it, unfortunately. There are some States where you can get a script written for it and there are Neurologists who you can get in touch with (online or by phone) to get the prescription. I have been on it since October of 2010 and it has helped me tremendously. It also appears to have a cumulative affect, meaning that over time it has made me feel better and better (and that different types of improvements keep happening to this day). I have had so many pain problems that at one point I had a running script of Oxycodone with Acetaminophen (sorry for not giving the drug name away. I don’t want to be sued). I believe the pain became far worse when I developed Fibromyalgia, which I had diagnosed by a rheumatologist in 2010. Since I have been taking LDN I haven’t had to take a single narcotic pain medication (thank goodness). I have found that, if the pain ever gets really bad, a Tramadol (2) seems to work for me (even though I wake up feeling like I've been hit by a truck the next day - so overwhelmingly tired. I can’t tell if the main culprit for that is the pain or the meds or a combination of everything).


I am going to tell you my perception of what LDN is from what I’ve heard and what I’ve felt ever since I started taking it in October of 2010. Naltrexone is a substance that is (was?) used in the UK to help people end addictions to narcotics and alcohol. A low dose version of the drug has been affective for many people with a number of immunological disorders. The LDN turns down the brain’s opioid receptors and, as a result, turns up endorphin production.


It is thought by many that LDN can help with cognitive function and fatigue. I haven’t found the latter to be true (yet) but I agree that my cognitive functioning has improved. In addition, I haven’t had to take any pain medications since I started using LDN. The pains are still with me, but they are nowhere near as bad as they were before taking the LDN. Bear in mind that I didn’t start on LDN until after I was diagnosed with Fibromyalgia and after I spoke with my Neurologist to confirm it was safe to use while being on an MS Disease Modifying Drug (DMD). There have been other "perks" from the LDN that I don't want to get into here. Suffice it to say that the sexual "dysfunction" caused by anti-depressant drugs was a major problem for me until I had been on LDN for about six months; I go into more detail about this in the section “On a More Personal Note”. There are videos in YouTube by people who have been, as they themselves have said, "saved" by LDN use.


LDN was recommended to my mother, who has Fibromyalgia, by another Fibro patient who takes it twice a day. Unfortunately, my mom tried it and she told me it didn’t help her (again: different things work differently for different people). I found this to be understandable; my mother lives in constant pain and she prefers to go with what works best for her. I do not blame her for that at all. Being in that type of discomfort on an ongoing basis is not something she deserves and I think she has the right to go with whatever makes her most comfortable. As you continue living you will likely find yourself in the same “boat” as the rest of us. You will find things that work for you that don’t for others and vise versa. We are our own best doctors at times, in my opinion.


Update (Friday, August 9, 2013): I am now in my fourth week of being un-medicated and waiting for this medication (Tecfidera/BG12) to arrive. The delay is because of my insurance company refusing to cover the medication.


Update 2 (Tuesday, November 25, 2013): The current list of Disease Modifying Drugs that are currently FDA approved and are available for people with relapsing remitting (and secondary progressive with continual relapses) forms of MS in the United States are as follows:

Aubagio (teriflunomide)

Avonex (interferon beta-1a)

Betaseron (interferon beta-1b)

Copaxone (glatiramer acetate)

Extavia (interferon beta-1b)

Gilenya (fingolimod)

Novantrone (mitoxantrone)

Rebif (interferon beta-1a)

Tecfidera (dimethyl fumarate)

Tysabri (natalizumab)

(NMSS 2013)


NOTE: The above medication list can be viewed on the National Multiple Sclerosis Society’s web page at:

http://tinyurl.com/kughzno


Update 3 (Monday, November 25, 2013): I have been on Tecfidera for a little over three months now and I LOVE it. What I love about Tecfidera most is that it is a pill (not an injection) and the side effects are tolerable for me so I have my weekends back. I also love the way it is helping me feel better (i.e., the “muddle headed” feeling I used to have all the time is gone, I can feel my hands again, my headaches don’t last as long, etc.). I will definitely write about this in much more detail in my next book. I just felt the need to mention it because I don’t want to leave anybody “hanging” about how I have been doing on this new medicine.



On a More Personal Note


In this next section, I am going to go over a few topics that some may feel wade into “uncomfortable territory”. There is some adult material following so if you are prone to taking offense, now is your chance to stop reading and move on to another section. I promise you, if “taboo” topic(s) bother you then something here will probably offend you (if not for what it says then for the fact that I had the audacity to bring it up). I will not get graphic, but I am going to go over a few issues that people sometimes have strong reactions to. Once again; if you are offended and/or bothered by discussions about sex, religion and/or politics now is your chance to pass on reading this section. If you continue to read this part of the book despite my warning please know that my intention is not to make people angry (and bear in mind that you have been warned).


The first thing I want to cover is sex. Since I was put on Anti-depressants during the first few years after I was diagnosed with MS, my sex drive was completely wiped out. I blame an SSRI Antidepressant Drug for that (as well as blaming one of the SSRIs for making me very jumpy, anxious and easy to startle. I have never gotten over that). I will refrain from naming the medication, but the bottle of pills for it listed “sexual side effects” as a commonly reported side effect. The antidepressant I was prescribed made me feel like a zombie. It completely dried me up and made me not care about anything or anyone, including myself. I was only on this medication for about a year, and it took almost 15 years for me to start getting any libido back. Of course, having had (very close to emergency) surgery to remove Fibroids did not help my libido much either.


In addition to the problem I was having from being on an anti-depressant, I am sure that having at least one UTI a month contributed to the lack of sexual desire. At the same time, however, I think the medication was much more influential. As for the “replenishment” of my libido I THINK it returned (at least in part) due to me using Low Dose Naltrexone (LDN).


I am very fortunate to have a husband who was completely patient and tolerant of my (just about) completely dead sex drive for so long. I know it did not make him happy (it certainly did not help me. I wanted to want sex but I had no interest in it at all). Thankfully my husband never forced me to do anything I did not want to do. He respects (and respected) me far too much to do that.


There are things that I can truly enjoy and appreciate now that I never enjoyed (because they caused me physical discomfort). One example of this is oral sex; even before the MS “reared its ugly head” this was something I never got any pleasure from.


I remember years ago, before I lived in Massachusetts (the first time I attempted to be a college student), when I had a boyfriend tell me there must have been something “biologically” wrong with me after I told him I was not interested in it. I remember being a bit taken aback and a little offended by this but now it appears he may have actually been right (even though to this day I think it was extremely rude of him to put me down for not liking something that he wanted to do to me). The ex-boyfriend I complain about in other sections was not the best boyfriend I have ever had, but he was much better than the “man” I was involved with in school who said this to me.


Once again, I think the LDN is what helped out with this as well as with giving me my libido back. I am nowhere near as active as I was before the MS manifested itself, but it is nice to at least be able to get some enjoyment out of sex and not to have to “fake it”. Many people may read this and wonder why I am so convinced that the LDN is the reason for getting at least a part of my sex drive back. My reason for believing this is partly a process of elimination. I really have tried many, many different things that I had hoped would help (exercise, lotions, toys, books, films, etc.) and absolutely nothing else helped at all. I gave up hope after a while to be honest. The other reason I think it is the LDN is because I had read that LDN can lead to an increase in the production of endorphins.


When I first started looking into whether or not LDN might help me or not, I was sent a video made by someone who has MS and which can be viewed on YouTube at:


http://tinyurl.com/k4hl7pm

While looking at this video (and the two that follow it) I also discovered that LDN was thought to be helpful for people who had MS and/or Fibromyalgia (and other autoimmune conditions, including but not limited to Crohn’s, Shingles, etc.). Like everything else, however, LDN works really well for some people and does absolutely nothing for others. My mother tried it out and it did nothing except make her uncomfortable.


I started the LDN very gradually. I use(d) distilled water to dissolve the pills in. When I started the treatment in October of 2010, I started with one Milliliter (Ml) per night. I read that it was ideal to do in the evening so I set a daily calendar event to remind me to take it every night at ten in the evening. I also had heard that the taste was awful (and it was/is - incredibly bitter) so I got some “fruit20” to mix with it for the first night. I did not care for the mix at all (and I avoid sugar substitutes as much as I can – fake sugar makes my head hurt very badly) so I kept experimenting until I found what worked best for me. I use a plastic dropper and I just take the LDN with the distilled water in a “straight shot” from the dropper. I then immediately drink a little bit of coffee (I find that kills the taste for me). I gradually worked my way up to and stopped at three ml per evening.


As far as the benefits of using LDN are concerned, I found them to be quite gradual and cumulative (as in the affects were and continue to be more diverse and better with time). It has been about three years since I first went on LDN and I have not felt the need to take an oxycodone since I started (a good thing, since the LDN might render a medication like that to be ineffective).


I wanted to very briefly go into the subject of spirituality and how I have used it to help me cope with getting this diagnosis, along with helping me with life in general. I am not going to try to preach or to convert anyone; I respect other peoples’ opinions and beliefs as long as they respect mine. I am not a believer of any organized religion. I do not believe any of us has any way of knowing what is going to happen to us when we die, but I also believe there has to be some higher being or purpose somewhere. I do not appreciate it when someone preaches to me in the hopes of converting me and I have no intention of doing that to you.


I did go to Catholic school when I was a child (after my parents split up). I am a very rebellious person and, since my mother’s side of the family is Jewish, my maternal grandmother once told me I was Jewish whether I “liked it or not.” Not a very good thing to say to someone like me. I think I became Catholic just to spite what she said (and the notion that I was something that I did not believe in really bothered me. At the time I thought the word “Jewish” meant religious beliefs and didn’t think of it as a culture). I wish this had not happened, looking back. Then again, while I wouldn’t go back into my childhood for all the money in the world, I have to admit that the Catholic schools I attended were much more challenging (intellectually) to me than the public school I attended for my Senior year of high school. I am not saying that the teachers were better but I am sure all of the money they (the private school) got from the students and their families (with things like private tuition, mandatory “cookie sales” that all the students did twice a year, etc.) helped the Parochial school outshine the underfunded pubic school I graduated from. I do not think that is fair at all. I do not believe you should come from money to get a decent education, but I digress.


For years during and after I went to my first college in upstate New York, I honestly did not know what to say I was or what I truly believed in from a religious and/or spiritual perspective. For a long time, I told people I was Agnostic and that I did not believe in organized religion. I had and still have a problem with anything that teaches that people who don’t follow it are “hell-bound”. I had one teacher (a nun in my Parochial high school) who got very tired of me and asked me to stay out of her class. She felt my constant questions such as “why does the bible teach us that our pets will not go to Heaven?” were a disruption to her students. She and I had an argument in the hallway one day and, when she saw she did not intimidate me, she got flustered and asked me to stay out of her class in exchange for giving me a B grade. I was more than happy to oblige.


Years after all of this and after finding out I had MS, I had a work colleague recommend a book to me (Thich Nhat Hạnh’s Peace is Every Step: The Path of Mindfulness in Everyday Life). His reason for telling me about the book was not to “convert” me into any particular religion. He was telling me about how he used what he learned from this book to avoid having the anxiety attacks he was prone to. I got the book and it really changed my life. I had always been interested in learning about Buddhism and this book (and author, who I have read more by since), taught me a lot. Bear in mind that I had looked into other things that sparked my interest. One thing I had developed an interest in was Paganism and Wicca. I tried reading a few books on this but I did not find anything that really moved me.


I wound up developing my own spiritual code, so to speak. I still have my own way of doing things (I guess I could be considered a “solitary practitioner”) and I see no reason to change. I am definitely not an Atheist. I believe there is something out there and I consider it to be a higher power. Other than that, I do not think it is within my capability to know what is “beyond” us in this life.


I bring up my spiritual beliefs and Thich Nhat Hanh because another thing I have found to be very helpful aside from eating well and exercising is meditation. When I first started getting into meditation, I had no idea what I was doing. I also had no idea this was something I could incorporate into my own daily practice(s). Many of the books I read about this in the past left me thinking it was much more structured than I believe it needed to be. This is something that I have chosen to do in a way that works for me. I realize that this is not something everyone will feel comfortable doing and, at the same time, may not hold the same benefits for people as it does for me. As I have stated over and over again throughout this writing, I am just mentioning what I like in the event that someone might try it and find it works for them as well.


The last item I am going to (VERY briefly) go over is politics. Do not worry – I won’t stay on this subject for too long. I am not going to try to sway anyone’s’ viewpoints here either. I know what a “hot spot” this topic is and I am also not going to tell you my political beliefs or who I voted for. I guess all I want to say here is that, when and if you get involved in doing anything political, you need to develop a very thick skin since this is a topic that makes people angrier than I ever could have imagined in the past.


In the same way that reading some things online may really scare someone about a health condition, reading peoples’ political views online can be nerve wracking (and/or anger inducing). I made the mistake of looking up something a politician said today. I didn’t agree with what he had to say, and then I made the mistake of reading the message board underneath his statements. I really regret doing this; I got so upset and so angry that I gave myself a horrible headache. It is definitely possible to accidentally make yourself feel worse if you let yourself get too upset/angry/stressed out over something you read. Additionally, if you leave angry responses to things that bother you be prepared to get worse in return. Some people love getting others all worked up – they thrive on it. It is not worth risking your health over.


Now I am going to move on to some more sections for the book. I know I only “delved” into this particular topic. If you want to read more about this, please let me know via email (ydcbook@gmail.com). I plan to write another book (or two) based at least partially on feedback I get from this one. I am eager to see what types of things we have in common because, as I discovered with Stan’s MS Angels (www.stansangels.com) and other online support groups, a lot of us have very similar back stories.


NOTE: I am attaching a video (part 1) to the bottom of this about LDN that was done by Joseph Wouk about how he used LDN for his Progressive Relapsing MS).

LDN ! Part One by Joseph Wouk

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    • Yvonne Decelis profile image
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      Yvonne Decelis 2 years ago from Boston, Massachusetts

      FlourishAnyway - I couldn't agree with you more about the money side of the MS business being very, very sad. I am a Tecfidera user (was on Avonex from 1998 to 2013 with a brief "rebif 'break'" in between) now but I definitely get where you are coming from about not wanting to be on an MS med. I feel like we are totally being used by the pharmaceutical industry. We are not to blame for having MS and yet we are treated like criminals by the people who SHOULD be in the medical profession because they want to help us. The concept of "do no harm" doesn't seem to be as important as it used to be, imo.

    • Yvonne Decelis profile image
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      Yvonne Decelis 2 years ago from Boston, Massachusetts

      bajabeffy - sorry I am just responding now (I didn't see your comment until now): I HAVE been checked for Lyme. I didn't have myself "officially" tested for CCSVI. The Liberation Therapy procedure is not for me (and I don't consider it a cure - I think it works amazingly well for some and not for others. Dr. Zamboni, the inventor of the procedure, has himself said it is not a cure. His wife has MS and has had the operation several times but remains on an Interferon. Zamboni is the ONLY one I would even consider letting do the procedure to me but my insurance wouldn't touch it and it is not affordable). So: sorry (again) for the delay in replying to you and thank you for taking the time to read my article. I am sorry if this response sounds "testy" in any way, shape or form btw. This is an issue that I have run into issues with in the past.

    • FlourishAnyway profile image

      FlourishAnyway 2 years ago from USA

      I was on Rebif for several years and it made me so sick and miserable. I will never take any interferon drugs again following some very bad reactions. I had also taken Copaxone for several years and was tolerating it well even though it was every day injections, but I did not like being "medically managed" like a child by money-hungry pharmaceutical companies with relationships with Caremark. The money side of the MS business is very very sad.

    • Yvonne Decelis profile image
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      Yvonne Decelis 2 years ago from Boston, Massachusetts

      Pollyannalana - I am allergic to bees. I am not ignoring what others have said. I have an allergy and don't want to risk what a sting could do to me.

    • Yvonne Decelis profile image
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      Yvonne Decelis 3 years ago from Boston, Massachusetts

      You are welcome - I wish you the best of luck. If you are on FB, friend me & I can hook you up with some good LDN support groups.

    • JayeWisdom profile image

      Jaye Denman 3 years ago from Deep South, USA

      I am intrigued by the use of naltrexone for pain relief. I didn't realize it could be prescribed off-label for that use. I avoid pain medication as much as possible, but if something were available that could take the edge off chronic pain without the danger of bad side effects, it would be like a miracle. Thanks for the details. I'll check into it with my doctor.

      Voted Up_-

      Jaye

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you so much Julia! I do want to read your book too actually!

    • profile image

      Julia Schopick 4 years ago

      Yvonne: I posted a link to this chapter on both of my Facebook pages (my personal page and my book's page, "Julia Schopick Presents Honest Medicine")/ Please tell me when your book comes out. I'll promote again. And btw, my first book, HONEST MEDICINE, contained several contributions by people whose MS was helped by LDN. My upcoming book will have contributions by people with several other conditions, including RA, Crohn's, ulcerative colitis, lupus, myasthenia gravis, Parkinson's and -- of course -- fibromyalgia. Can't wait to read your book!

    • Yvonne Decelis profile image
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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      Thank you Steve. (I have done research into CCSVI and treatment for it. It isn't for me - sorry. You do what works for you and I do what works for me. I can be checked for blockages but I am not travelling to have my veins widened.)

      Best of luck to you! Thanks much for your comments...

    • profile image

      Steve Thompson 4 years ago

      CCSVI is the underlying problem for us all with MS.

      The treatments you are talking about above may be dealing with the symptoms but the underlying cause is blocked veins.

      Every one should be tested for blockages if only to satisfy your self that there is no problem?

      I wish you good luck and continued success with your MS.

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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      I was told I did not have Lyme disease years ago (I think it was back in 1997). I did not do the test for CCSVI because what I am doing works for me.)

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      bajabeffy 4 years ago

      Have you been accurately tested for Lyme and it's co-infections? Or CCSVI?

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      Yvonne Decelis 4 years ago from Boston, Massachusetts

      I believe in it too. Problem is - I am allergic to bees (I was told about this (bee sting) therapy in 1997, I believe.)

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      Pollyannalana 4 years ago from US

      It is horrible about medications having such bad side effects and whether it is true or not I have heard they many do this on purpose to sell a medicine to combat that side effect. It sounds like you are managing to deal with your pain and use natural things to help. I know many people just won't listen but I wish you would at least look up some studies on the bee sting therapy. From what I have read it is like a warm glow feeling in affected joints and muscles. I have read people have become completely healed and gone back to work who were almost if not invalids. I had an accidental experience that makes me believe this absolutely.