Over the past 12 months, I have tried many treatments that I haven’t written about in previous blog entries. This article will briefly touch on these treatments. Following this, I will detail how my health has played out throughout 2015.
2015 was a year that I trialled many ME treatments. These primary treatments were articulated in more detail in blog entries during the year. The following is a list of treatments I trialled at various stages of 2015 that I haven’t written about previously.
The main motive for me taking astaxanthin was its powerful anti-inflammatory effects. I have been experiencing joint pain during 2015 and I thought of astaxanthin as a safer long-term alternative to NSAIDs. One health questionnaire of 247 sufferers of back pain and rheumatoid arthritis or osteoarthritis found over 80% improving after taking astaxanthin. This supplement also has immunomodulatory effects and many other potential benefits.
I started taking 12mg of astaxanthin in November 2015 and plan to reduce the dose to 4mg within the coming weeks. The joint pain in my fingers, wrists and knees has all improved since I started taking the astaxanthin although I’m unsure if this is coincidental or not.
Benfotiamine and Allithiamine
During 2013, I took high dose thiamine (vitamin B1) and didn’t notice any effects. I wrote about this treatment in more detail here. In 2015, I trialled allithiamine and benfotiamine which are essentially different versions of thiamine. These two versions of thiamine may be better absorbed by the body than standard thiamine. Anecdotally, some patients have reported one of these versions to benefit them whilst standard high dose thiamine has not. I felt a bit sicker while taking 100mg of Allithiamine in combination with a mutli B supplement and I hence stopped this treatment after several days. I took 500mg of benfotiamine for about a month with no effects noted.
I have seldom written about diet on my blog for two primary reasons. The first is that food doesn’t seem to affect any of my symptoms. Secondly, I have tried omitting various types of food such as gluten, dairy products etc, at various times throughout my illness but have failed to notice any effects of these food omissions.
Fast forward to mid 2015 and I received an email from a fellow Australian ME patient who had similar symptoms to me and benefited remarkably from trying the elimination diet. I am grateful for their thoughts and must thank them for this. The elimination diet that I tried was devised by the Royal Prince Alfred Hospital with the premise of stopping food intolerances. Salicylates, amines, glutamate, gluten and food additives amongst other substances are avoided in the diet. These omissions ultimately don’t leave much to eat and following the strictest version of the diet was challenging to start with before I gradually adapted. I had a night of refreshing sleep while on the diet which is a once every two year rarity for me but other than that, I didn’t notice any other changes. I am planning to try the diet again in mid 2016 for a longer period of time.
There are various types of elimination diets and Dr. Cheney has written fondly of an elimination diet. He mentions, “Elimination diets, and improving digestion and gut epithelial function can pay huge dividends in this patient population.” Dr Cheney has found over half of his CFS patients studied to have food sensitivities. He believes an elimination diet is the best way to determine a patient’s food intolerances.
The primary motive for me taking IP-6 was its ability to increase Natural Killer (NK) cell activity which is often impaired in ME patients. Dr. Edward Conley reports that he has used IP-6 to improve NK cell function in “dozens of cases” of CFIDS. He elaborates on one case in which NK cell function improved 200% and the patient went from being unable to work to managing a 32-40 hour job.
I took IP-6 for a month during 2016 and didn’t notice any effects. The dose I was taking was 3.2 grams twice a day on an empty stomach. I didn’t have the ability to perform a natural killer cell function test to monitor its NK cell effects on me.
Dr Goldstein wrote prolifically about ME/CFS and his treatments always interest me as they seem divergent from many other ME specialists treatments, yet steeped in theoretical/practical evidence. He compiled a list of treatments he trialled often sequentially when a new ME/CFS patient visited him. This list is well worth reading and can be found here. Also listed are his musing on an assortment of other treatments. Naphazoline HCL 0.1% eye drops were the first treatment he tried on patients whom stepped into his office. If the patient benefited from this treatment, they would feel better immediately. Dr. Goldstein theorised that the trigeminal nerve would change the patient’s brain function as a result of these eye drops. It has been claimed that 20% of patients benefited from this treatment and on those patients whom they worked, the drops worked remarkably well.
It is imperative that the drops used are 0.1% not 0.01% drops. In some countries, the 0.1% drops are available over the counter. I tried the Naphazoline eye drops on two occasions during 2015 but didn’t notice any effects.
Dr. Goldstein originally tried Ranitidine on infectious mononucleosis patients in the 1980s and due to the success he experienced began using it on ME patients. Ranitidine (Zantac) along with Cimetidine (Tagamet) are H2 receptor antagonists. Dr. Goldstein recommends the dosing structure of 150mg twice a day for one or two days. When patients do respond to one of these H2 receptor antagonists, Dr. Goldstein writes that the recovery is remarkable. He continues on to state that these drugs may cause overstimulation in ME/CFS patients.
An anecdotal report of a patient significantly improving after taking Ranitidine can be found here. This patient did however experience severe headaches as a consequence of the treatment which is a possible side effect. Ranitidine is available over the counter in many countries, if not, Cimetidine is normally available over the counter instead. I took 150mg of Ranitidine twice a day for three days but didn’t notice any effects.
My Health in 2015
The major improvement in my health last year was the reduction in nasal mucus discharge or mucus coughed up. This was my first ME symptom to emerge and for many years I was using two boxes of tissues a day. A few years ago, I had an allergy test and was put on dust allergy drops plus the nasal spray Avamys. This improved my tissue usage to around one box a day. In 2015, my sister moved out of the house and I moved into her room with only the bare essentials cluttering the room. This further reduced my dust allergy and I am currently down to using one box of tissues per week- a far cry from the 14 boxes a week I was using for 6 years!
During mid 2015, my big toe joints began to experience pain, make cracking sounds and generally feel uncomfortable. My ankle joints also felt a similar sensation. In October, my finger, wrist, knee and neck joints also became painful. I began taking Astaxanthin, which I wrote about at the top of this blog entry. My newly developed finger, wrist, knee and neck pain improved however my toe and ankle pain persisted. I was referred to a rheumatologist who thought I may have osteoarthritis or rheumatoid arthritis however was unsure. He prescribed me painkillers and thought he would have a more clear idea of what’s going on after my symptoms had more time to progress. I see the rheumatologist again in March. Joint pain is often included on criteria lists for ME/CFS so it may simply be secondary to my illness.
I wrote a blog entry many years ago about the strange, permanent and dark spots that emerged on my joints when my illness initiated. This blog entry, found here, shows photos of the spots on my toes and fingers. I have over the past 12 months noticed a darkening of the big toe spots as well as the development of spots on the joint located at the base of my big toe. I’m unsure if this is related to the joint pain I’ve been experiencing. Also, further spots have appeared on my index and middle finger joints.
2015 was the year that I struggled with sleep the most. Earlier in my illness, I would sleep right through the night and need an alarm clock to stop me sleeping for extended hours. This situation has inverted over the past handful of years and I now struggle to fall asleep. Also, when I wake during the night I am now often unable to get back to sleep. My Restless Legs Syndrome also prohibits my sleep.
The final significant health change that occurred to me in 2015 was my back pain. In late 2014 I suffered a thoracic back sprain by simply standing up from a sitting position. I have since experienced some quite irksome back problems. During 2015, I saw the physio every two weeks for the entirety of the year and took many painkillers for my back. I have been doing some very basic and modified stretches for my back too. I aggravated my back during August, September and October of 2015 by simply standing up from a sitting position and couldn’t really stand or walk properly on each of these occasions for a week. The rheumatologist whom I saw for my joint pain suspects that my back pain is related.
Overall, my ME health remained rather static in 2015. The peripheral symptoms I have written about above were nothing more than a blip on the radar when compared to how the crux of the ME has affected me. I am thankful that the mucus production symptom is being thwarted and I hope this continues into 2016. At present, the joint pain isn’t significant and I plan on continuing the Astaxanthin which may be easing it. My sleep and sleep treatments are something that I wrote about more extensively in my last blog entry and I have a sense of optimism that 2015 was an outlier as far as my insomnia was concerned. Regarding my back pain, I have found through trial and error that sleeping on the right type of mattress significantly improves this symptom. By finding the optimal mattress in 2016, this may not only ease the back pain but perhaps improve my sleep too. Improving my ME is a more difficult matter, although I have some more ideas up my sleeve for 2016!