Living With Lyme Disease Documentary by David Pembroke

It looks like a Project worthy of backing.  Looking forward to the finished movie.  Still cannot decide if ME/CFS and/or fibromyalgia are caused by Lyme-like illnesses or if they make you vulnerable to Lyme-like illnesses which would ordinarily be handled quite nicely by your immune system. Comments welcome!

Louise Ramage was an online friend who I felt close to. So sad, RIP Louise.

Louise had Myalgic Encephalomyelitis (ME).  She took Percocet for the pain. She lived near Vancouver and seemed to have as much disappointment with the medical system as I do here in Australia.  She was hopeful when a complex diseases clinic opened up nearby but she soon realised that they could not help.

I know exactly how you feel. I'm not young anymore and I find it harder and harder to cope and it seems things are just getting worse. I hate to say this...but you might understand my thoughts ~ at times I think of getting a gun and pulling the trigger. I don't really want to die of course but just have some quality of life. You don't have to worry as I wouldn't do such a thing...plus you can't just go buy guns here in Canada....we're not like the U.S. I tell you the States are all gun happy. I just don't have much faith or hope either but we just have to keep on trying. I called my daughter yesterday in tears. I feel I must be a burden. Sometimes with this illness I'll just break down and call either Leeanne or Dick. I always apologize for complaining...so grateful my daughter and b/f keep siupporting and loving me. Let's just pray something changes. That New Complex Disease Center will be opening in early 2013 but I'm not stupid and I realize there is no cure so I'm not even hopeful with that. I'll go in the hopes that they can learn more about this illness and pray it will help others in the future. Who knows...perhaps they'll have a few suggestions....I'll be grateful for any help at all ~ but I know not to expect miracles. No one should have to suffer like like this Judy...unbelievable how cruel the medical community is to keep sweeping it under the carpet and making those who have M.E. belittled and treated like we are all psych cases. Hoping this new center will educate drs. One can dream. January 2013

It had gotten to the stage that she lived only for the odd good day as she explained:

Judy I know how you feel. I've been in such a long horrid crash. I sometimes just get so I'll I think I should check into the hospital but then I realize they would just think I'm crazy and anyhow what can anyone do? I have to see my Dr. today and hope I don't end up in tears ~ I cry so easily when I'm so sick...my emotions are all over. I think a crash is worse than pain because at least with pain you can usually get some relief...but there is nothing you can take for a crash...it just feels like your dying...so exhausted beyond description...so weak. I get to the point I don't even want to talk to anyone as it's too much energy. Have a "to do" list on my coffee table here and some things involve phoning people...but I'm just not up to it. I have to discuss pain meds with my Dr today and unsure what he'll want to do. He asked me to research pain meds and I found it depressing. Know I'm thinking of you...this illness is so hard...I just live for the odd days I get here and there where I don't feel so sickly. I really pray you get a break soon...it can really pull you down. xxx

We relived some of our good memories together and we celebrated when we were well enough to create some new memories with our families.

....seeing you there with that cracker brought back memories of my family all around the table for Christmas dinner in the past. We always had those crackers and we would wear our silly hats and go round the table and read off the jokes.2011

2011 when we became Facebook friends.  Louise and her daughter.

Judy this illness is so terrible. I'm so glad that both you and I both were able to enjoy Christmas...I tell you it was a fluke I was able to go...if my daughter had the dinner on Christmas day it definitely would have been a "no show" for me.........I am just so frustrated Judy. I can't hack this stupid pain and lack of sleep. I find taking percocet a double edged sword. I so need them but then of course you build up a tolerance and they just don't work as effectively as they once did and trying to keep usage of them down gets harder and harder. Sometimes I feel like getting and a gun and pulling the stupid trigger. I have so many different pain syndromes ~ it just never ends. Today I woke up to severe RLS...absolutely brutal. Feels like maggots crawling from my feet straight up to my lips and cheeks. Then if it isn't RLS I'll have severe fibromyalgia, or bone pain, or nerve pain, or severe joint pain. Sometimes I just don't even know what kind of pain I'm experiencing. I just get so frustrated and scared. Then the "crashes" are horrendous...you know all about that. Seems we just live to exist...that's why being able to get out for Christmas was such a blessing (for you and I)! 27/12/2012

I have to go see my Dr on the 2nd and am already worried about that....I always think to myself "am I going to be in a crash", "am I going to get enough sleep", "am I going to be in pain", "will I be able to do the drive"? This is how we live now...it almost seems weird to look back on my life and remember that I use to have no thoughts about such things. If I had to shop then shopped. If I wanted to plan to meet up with friends well then I did. I only managed to have one bbq here for my daughter and her family since I moved here 7 months ago. I had to keep calling them on what I call my "good days" until finally I managed to get them over when they had no plans. This is why we have lost so many of our friends. We can't plan to meet up with them...we just live an existence day by day, hour by hour never knowing what is coming next.
I'm so frustrated...I have been waking up every day since the 24th before 2 am because of pain. I can't just turn around in bed and try to get back to sleep. That would be too easy. Instead I have to get up and take 2 Percocet and then I'm up for the day. For some reason Percocet stimulates my brain and I'm very seldom able to sleep on them. It makes for such a long day Judy. I really want to live...but I don't like just existing.
BTW those antibiotics will give you brutal bowel attacks. It's not going to be a pleasant treatment so all we can do is keep praying and hold onto faith that this treatment helps you. I'm glad we touched base again. You can always talk to me if your going through a hard time of it ok? Sometimes I don't look at FB everyday...it so depends upon how I feel. I wish I could say something positive to you Judy. Love you...hang in there...and here's to HOPE 30/12/2012

Louise was fond of horses before ME

I think about those things as well...but I think if ever I was to be healthy Dick and I would start a life together. I definitely would spend allot more time with little Jacob. I'm 55 so nically think I would look for some work...it could just be part-time...just anything to keep busy and also so I would be more social. So use to lying on the couch all the time it would definitely be a change haha. Just having a part-time job would help me out financially as well. Anything is better than this! July 2013

2015 at her daughter's wedding

The neuromuscular effects of ME on Louise she called Blepharospasm.  It drove her nuts and it was very painful.  She could barely afford treatment.

I got botox for my bleuphrospasm on Friday morning. It was a Christmas gift from my daughter. I used to get it every 3 months but that was about 8 years ago. In about 8 more days it'll start to kick in and my eyes won't be closing up on me. He charged me for medical purposes hence the cost was about half the amount someone would pay if it was done for cosmetic purposes but even with that it was a fortune. Now I remember why I just decided to have my eyes contract constantly and close up on me![and forget about treating it]

The botox will work...it should start to kick in on Sunday....typically takes 2 weeks to fully work...but I always start to feel results in 10 days...it feels so good. You can feel the muscles in your upper and lower eyelids being forced open. Initially your eye lids won't totally close up...but it's so much relief from the constant strong contractions I get without it. He was so nice and stuck a little amount in the worry lines I have between my eyes and also a few other spots. If you're going to have a medical problem such as bleuphrospasm it actually helps out with eye wrinkles too . Once when I use to see my neurologist for injections I joked to him and asked him to get some of those eye wrinkles out at the same time lol...to which he replied that when using botox for bleuphrospasm it actually is used in areas they use to get rid of eye wrinkles ~ BONUS...if you're going to have a medical condition like that at least it gives a cosmetic look at the same time. wink emoticon But since I haven't had botox for about 10 yrs I have more wrinkles because of the continual contractions...also add in the age factor! I better get some pictures done during those 3 months because there is no way I van get it done every 3 months. I was thinking if I could have it done 2 times a year at least that would be 6 months of relief which is a whole lot better than the 10 yrs I've gone thru without any. When my eyes are really bad I go blind...so I am looking forward to feel the results and being able to see.

People are so weird Judy...so anytime my eyes are closing up tight and strangers will actually come up to me and ask what's wrong with my eyes...if I had more guts I'd ask what was wrong with their face haha. Actually I wouldn't....I'm not so rude!

This was the last public post that she made on June 23rd 2016

Ok I've been training Skye (her cat) to "come" on command, to "sit" on command and also to "high 5" on command. I don't push him as I don't want to bore him. Another video but he's definitely understanding what he's been trained to do.

Ignore his hair floating across my floor ~ the shedding never ceases! With all that said...here is Skye doing his thing:

https://www.facebook.com/louise.ramage1/videos/10154193873555930/

For all who wish to send cards of condolence to Louise's family, here is the address of her daughter.
Leeanne St. Cyr
17325 64A Avenue,
Surrey, B.C.
Canada
V3S 0P5

Louise was a long-time supporter of Invest in ME (IiME).  The button below will allow you to make a donation to their Biomedical Research Fund through PayPal.  Click for more information

Health, Healing & Hummingbirds

Health, Healing & Hummingbirds: Scientific information on improving serious disease through nutrition and treating the causes of disease – summarised from 100 of the world’s most cutting-edge health books

"This photo sort of means a lot to me. I had rested hugely for 2 days beforehand (to do a mothers day thing with my mum), and even put tinist bit of makeup on and a nice dress and some jewellery even (for my mum!), plus had the new not-just-ill-person-no-choice-basics hair which in my case was blue hair - a luxury I have not had for well over TEN YEARS. So it feels very 'real me' sort of. Like I am finally able to start reclaiming small bits of choice in my life, lost for so long. As I sloiwly improve I am seeing more clearly all I have lost..and so happy when I get even a tiny bit back...which is what this pic represents to me. Hugs:)"

 I did have purple hair for ages many years ago, and am going to do a violet thing next, can't wait:) Yes, am sick of jammies and wearing clothes that mostly I wd never chooce myself but have bene given, or someone else has picked out or whatever.

 Being so ill often means putting tons of effort into dissociating form your body...retreating from the pain, and trying to mind over matter it away a bit. So starting to reclaim it again in a small positive way is kind of big....musings! 

Did you know that Jodi got published in the local community paper?  She lived in WA.

"Of course after explaining twice to the local journalist that 'CFS' is not another term for M.E., and please could she not say I have 'CFS' in the article because I don't and this mislabelling/misdiagnosis has pretty much ruined my life, and her saying, oh yes of course I wont do that and thank you for educating me....yep, she did exactly that. Not a huge surprise, but a bit disappointing and I hope nobody I know reads the thing (that doesn't know me online). On the plus side, apart from this one (albeit significant) issue, it is an absolutely kick arse article. And the fact it mentions 'CFS' even if wrongly, will at least get more ill and possibly also misdiagnosed people to go to the site I hope."

"Just as proof I was not a goth really, as we were discussing here....here is a silly pic a friend of mine took of me in my backyard, just before ME hit. I would usually wear one super bright bit of clothing, and have the rest be fairly neutral so it wasn't too much. But for a laugh I decided to get the brightest loudest things out of my wardrobe and put them all on at once, and then pose, stupidly. Used to love that skirt so much! Very scary as a whole ensemble though:) Here is an even sillier pic." Recently posted on Facebook showing what she was doing at 18-19 years old.

"If not now, when?  If not here, where?  If not you, then who?"

GcMAF CREAM Day one

I have Myalgic Encephalomyelitis and Fibromyalgia as well as Borelliosis of unknown species and past antibodies to Glandular Fever and Mycoplasma Pneumoniae. �I am not sure I even make antibodies any more and the Borrelia showed up via PCR testing in my urine. �My blood contained no Borrelia DNA. � A single biopsy revealed Crohn's granulomatosis when I was 33 years old after 9 years primarily of nocturnal, cyclic at first, bowel attacks. �I was treated with topical corticosteroids for 4 years and occasionally oral ones after that intermittently for another year perhaps. �I became cushingoid on the topical treatment for my sigmoid colon. �However, no biopsy since then has revealed the cellular changes required for a Crohn's diagnosis so they began calling it a misdiagnosis and I was switched from an IBD label to one of IBS and had a couple of polyps removed along the way. �Bowel symptoms improved after menopause but they have never abated and I began to suspect they were autonomic when my stomach seemed to go through phases of delayed emptying noticeable in my 50's.I have always had a heart murmur but eventually it has just ended up being called a couple of different types of tachycardia. �I get many heart palpitations when I deteriorate and they completely disappear when I don't feel ill. �I had relief from the flu-type illness after being on a variety of antibiotics for 12 months however all the symptoms are back now including mobility problems due to both breathlessness and a huge heaviness in my legs and bordering on spasticity at times. �I am scared into action once again, trying to find the funds and the energy to travel to a Lyme doctor but in the meantime I thought I would give GCMAF basic cream a go. I have had pain in my legs most of my life but it became body-wide pain because of the persistent flu myalgia feeling, joint involvement body-wide in a transient fashion (and as a reaction/herx to Bicillin muscular injections). �The aching is daily and the joint stuff flares up and down and neurological episodes began in about my 40's maybe? �Burning soles of my feet was the only thing at first. �I now have burning mouth syndrome and stuff that feels like shingles so that the clothes hurt touching my back and there is no way I can wear a bra. �Even fitting waists in clothes will bring on other symptoms, namely bowel cramps. �My legs sometimes feel like I am walking through a garden hose sprinkler system as the drops touch me all over. �I thought all that stuff would have been explained by the recent finding of an arachnoid cyst on my thoracic spine which is quite long but the neurosurgeon did not think so from looking at the MRI and he sent me home with my leg pain/heaviness and strange back pain. �He definitely said that it would not explain my migraines. Lung problems for me have been relatively minor even when I had mycoplasma pneumoniae. �An annoying cough is nothing when you have to put up with so much pain already. �However since I have been 60 I have had noises develop in my lungs after a neighbours infection which I did not even think I got. �They found a nodule in my right lung but can't tell me whether it is a neoplasm or an infection but no-one will treat me for mycoplasma just in case, but I have inadvertently found that using Rhinocort for eye pain (OF ALL THINGS) - eye pain caused by chronically infected sinuses that also don't bother me much - has also helped the wheezes and squeaks in my lungs. �No doctors are helping me. �They just ignore the odd inflammatory marker or elevated liver enzyme or lupus markers that come and go. �The optician put me on to the Rhinocort and even the hearing aid appointments revealed fluid behind the eardrum which my doctors don't even check. When I turned 60 I was diagnosed with diabetes type 2. �I am very overweight for my small size now yet my appetite is quite often miniscule because of nausea etc. I am pretty-much housebound as I begin the MAFACTIVE. I had my first little touch of it behind my knee about 14 hours ago. �I did have a rather large headache at night but I do not know if  it is related. �That is all I can say till I have been doing it for a while. � � �

Current Protocol :tiny smear/dab of cream anywhere below the trunk and definitely avoiding the head area x 2 per week.

I'll add some links here to information about nagalase and hydrogen peroxide accumulation which this stuff neutralises, glycoproteins (which GcMAF is) and instructions from my Australian supplier so check back soon.

Update:  10 days later.  I have been sleeping a lot because I get so dopey that I just have to.  I've been hoping that it is a healing reaction but I cannot say if it has anything to do with MAFACTIVE cream because I have been using up an old script of Clarithromycin and low-dose Tinadizole.  The things we do when we are desperate and no doctor will help.

Using GcMAF cream

Whilst it is not allowed to give feedback for the cream or even offer adviCe on how it is used on a company website, it is important to know how to get the best from the cream to encourage a healthy immune system and avoid some of the healing crisis that can be encountered as the immune system begins to interact with previously unresolved pathogens.

Overview

GcMAF is both an immune stimulant and an immune regulator. Thus it can be used to increase an immune response, such as in cancer treatment and for chronic infections, but it can also be used in autoimmune ailments, due to its ability to turn off macrophages (apoptosis) when no longer needed at the site of any infection.

The cream is a very potent product and for those with chronic, long standing ailments such as Lyme disease, CFS, autism etc, it will take a while for the long standing damage to the immunity to be reversed. It is very important to start at a low dose and the original cream can be used in very small amounts. GcMAF activates macrophages and they will search and destroy pathogens in no particular order.

Lyme disease and some other pathogens release toxins during die-off, these toxins can manifest as headaches, migraines, joint pain etc. A detox protocol should be in place prior to commencing with any GcMAF - this can include but is not restricted to epsom salt baths (with added Himalayan salts and bicarbonate of soda to prevent the toxins being reabsorbed), ionised footbaths, addition of PeaPure, LDN etc. A slow die off of the pathogens helps to manage the toxins that will be released and a reason why high dose GcMAF is inappropriate for these conditions.

In autism, early pathogen reduction by an increased immune system can give early gains in communication and sociability, but also an increase in OCD like behaviours. These are associated with yeast flare (Candida), which happens if the ph of the body alters slightly during die off. Support a yeast reduction protocol with products such as Syntol AMD. Yeast seems to be more of an issue with PANDAs. Yeast does even out after a while, but it is not seen to be much of a threat by the immune system, which seems to concentrate initially on previously unresolved pathogens, enabling yeast to thrive.

Which cream to use?

For most people the original cream offers the immune support necessary and is suitable for most conditions as a daily immune support. It can be used by anyone who wishes to maintain active immunity.

Because it is simply a protein and the supplementation corrects a deficiency, if too much protein is used, the body will simply break it down into its constituent amino acids and reuse these elsewhere. There has not been any reports of any overuse of gcmaf - the only issues are around healing crisis which occur when a depressed immunity starts to interact with previously unresolved issues. So even people who are healthy can use it, to ensure the immune system stays in top shape

For general immune support for those with a general compromised immunity, such as with cancer, psoriasis etc, the stronger Frankincense cream may be more appropriate. Offering 4x the protein as the original formulation, this can be used to massage the lymph junctions on the throat, arpmits or groin to encourage a healthy immune response to pathogens, or directly onto troubled areas.

Lymphatic massage points for strong immune support

The cream can be massaged into the lymphatic junction points in the throat, armpit, breast or groin areas. Lymph flows from the small capillaries to larger ones and onto the lymph nodes. One of the functions of lymphatic vessels is to move proteins into the bloodstream. A lymphatic massage at a lymph node junction with the cream can give a strong immune response. It is best to vary the site of application to encourage immunity throughout the body.

 

Other massage points for a more gentle immune support

An application to the back of the hand or lower leg may be more suited when a more gentle immune response is needed (Lyme disease, autism etc). Acupressure point ST36 (google this for more images) is at the top of the lower leg and away from lymph junctions. This may give a gentle immune support. The soles of the feet may also be a good place to apply at bedtime, but not initially as the feet are very connected to the rest of the body (think grounding, Ionic footbaths, reflexology). Ensure the area of application is clean and free of personal care chemicals before applying.

How much to use

Just a dab on the end of the finger is sufficient on a daily basis to help support the immune system. For new users, who may have depressed immunity and co-infections, such as Lyme disease and CFS, a tiny amount should be tried initially, a smudge similar to the amount used when applying eye makeup. Leave 72 hours to assess whether the immune reaction will be a strong one, or not. When it becomes apparent that there will not be a healing crisis, increase the amount and vary the places where it is applied, to include lymphatic points.



Topical skin cream

The cream can be used topically on many skin conditions to encourage the macrophages and other immune cells within the dermis and epidermis to become active. This can then give a cascade effect as the antigen presenting by the macrophages brings other other immune cells to the response. So even applying topically to the back of the hand can encourage an immune response. An example of this in action was the application of the cream to one limb with lichen planus for comparison purposes. Both limbs cleared up, as the immune system became aware of the ailment to be treated.

A brief explanation of GcMAF

GcMAF simply activates the macrophages that are ever present, but which generally are not active until they get the chemical signal to do so. This signal is given by GcMAF, in the same way as your car will not work unless the key is used. GcMAF is generally made in a healthy body as a result of enzymes interacting with the gcprotein that is made in the liver. These enzymes are released by dying T and B cells, so kind of an SOS / emergency call. The enzymes transform gcprotein, which is abundant in the body, to GcMAF, a much rarer form of the protein. The macrophages recognise this protein as a sign that there is an infection somewhere, and step up to become active. In this activated condition, they can consume 15 times more than in the unactivated condition.

Once a macrophage has engulfed a pathogen, it antigen presents. This entails it putting small parts of the pathogen out for T and B cells to pick up. These cells then recognise the pathogen too. So by activating macrophages, this sets off an immune cascade, which brings the whole immune system to the fight.

Diets and Supplements

GcMAF will work regardless of whether you eat fast food or a raw vegan diet. However, if you are trying to recover, it is best to avoid introducing foods that contain toxins, as this gives the immune cells something else to do other than dealing with pathogens. Organic whole foods make a lot of sense. There are specific diets for specific ailments - ketogenic, Gerson and Budwig for cancer for example, and GAPS, gluten free, casein free (GFCF) for autism and your choice of diet is your own to research and to make.

For GcMAF to work at its best, levels of vitamin D must be in the 'normal' range, and if supplementing in order to use a high dose protocol, a combined D3/K2 would be better as these two work symbiotically. A wide range of good quality, organic fatty acids are also important, which is why the ketogenic diet is said to work well with GcMAF. Vitamin D is a fat based molecule, and the Gcprotein is a carrier for fatty acids. Ketogenic is a low carb, high fat, high protein diet with no added sugars. For vegetarians, the Eco Atkins diet gives some pointers.

Vitamin C, whilst not part of the GcMAF protocol has been indicated to be very helpful to improve the immune system overall

Not Jodi Bassett - not fair. Fly free humming bird.

This post sums up Jodi's passion

Jodi left us on June 11.  She was 39 and I have her Kindle book...probably the first book that I ever bought after I became enlightened about chronic fatigue syndrome (CFS) being a totally different dis-ease than Myalgic Encephalomyelitis (ME).  No syndrome is taken seriously by doctors but at the same time, none of my doctors will even speak of Myalgic Encephalomyelitis because they don't really know what it is so CFS is a word that I still have to use in Australia knowing that what I was saying about myself was actually a misdiagnosis.  However, Jodi refused to use CFS to describe herself because ME has been recognised by the World Health Organisation as a neurological disease since 1969 so someone knows it exists in its own right. Why doctors are not taught about ME especially historically over the decades I cannot possibly understand. ME is what Jodi Bassett lived with and died from without it ever being recognised in Australia by mainstream medicine as anything more than someone with a weak constitution as my mother would say.

She was my friend on Facebook answering a question I had back in 2011.  Other than that we had no other direct contact.  Her sites provided my early references and for that I am truly grateful.

Jodi said on her first Hummingbirds website:

The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

M.E. patients that are newly diagnosed, or still in the acute stages especially must be given their best possible chance for recovery and be enabled to REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management/reduction. Limiting activity levels to only as much as the patient is capable of dealing with may well be the single most important factor in the patient’s M.E. improving over time.

Read More

I think you will find that the ones who are dying years before their time are those like Jodi who were given the wrong advice or not given the right advice early enough.  The most obvious contributor to our early deaths is the friendly advice to "keep going at the same pace" whether your body feels like it or not because it proves your strength and it pleases your partner, child and pet. The medical advice that has caused permanent relapse in so many of our friends is the advice to physically exercise and take the advice of a trainer who wants to raise your heart-rate to the maximum allowable for your age.  Non-compliant is what doctors write on your reports if you refuse to do that exercise.  However every time I have been compliant I have eventually relapsed whether it was the gym, TAI CHI, water walking or whole body vibration etc and each relapse results in some permanent loss of your former self in terms of ability and quality of life.  Jodi wanted to save us from that which she experienced and I would that I too could convince you that you must find a way to stay within your own energy envelope.  We actually have more of an oppotunity to do that these days with the help of heart-rate variability monitoring (HRV) which is one step higher than heart-rate monitoring and we have the equipment and software to do it and record it and analyse it now.  It is called self-help. Read about HRV as compiled by Karyn Crimmin

Jodi has another web site produced call Health, Healing and Hummingbirds.  She explains the purpose of the site:

Lately I have been reading as much as I can about health and healing. Some of the information out there is genuinely amazing. So much more impressive and compelling than I had been led to expect.  But finding the little nuggets of gold amongst all the huge piles of worthless junk takes time. Time that many ill people just don’t have.

Health, Healing & Hummingbirds aims to get a summary of the cutting-edge information on health I’ve learned out to people in the earliest stages of their disease. Where it can do the most good.

Photo provided by her father

Jodi was a well-referenced lady on her web sites and her articles are in essence literature reviews from holistic and integrative perspectives involving orthomolecular and environmental medicine while acknowledging the place of traditional medicine.  She promotes deep healing instead of symptom relief alone and she did all this research for us.  As an example she writes:

Glutathione and vitamin C and other antioxidants are not cure-alls, particularly when it comes to the treatment of long-term diseases. But Dr Levy does explain that even where the disease is too far advanced to be reversed the administration of reduced glutathione and vitamin C can at least provide reliable symptomatic relief..

Read More

The following was posted on the West Australian Newspaper's Memorial Page by her Dad, Peter Bassett of Bedfordale, WA

Peter Bassett,

Bedfordale, Western Australia

Contact M

- See more at: http://www.legacy.com/guestbooks/thewest-au/jodi-bassett-condolences/180305608?&eid=viewgb#sthash.PWS06Adg.dpuf

Our daughter Jodi's influence was far, far greater than we had imagined, and she was a tireless crusader for M.E. activism and helping fellow sufferers, as well as a prolific artist of great skill.  And so ill, putting others ahead of herself. Jodi was actually recovering quite well from the M.E., even drove to the park and went to the playground with Leila. Big improvement from being bed-bound.Then the breast cancer struck, eventually spreading, and this is what she couldn't defeat. But boy, did she give it a red hot go. She still had hope right to the end. A really beautiful person.  Monday 27th June

On Thursday, 23 June 2016 another writes:

Hi. I am the editor of the newsletter of the North London ME Network.
For years now, the 'Mainly For The Bedbound' section of the newsletter, written mainly by Jodi, has featured. Jodi has now died, but her work, in the form of tips for people with severe ME, will go on and, in this newsletter, probably for years to come. On behalf of NLMEN, I thank Jodi.
For more: info@nlmenetwork.org.uk

Monday, 27 June 2016

Parenting Nightmare - First day of school again

It has been a parenting nightmare for number two son.  It seems he regrets giving the mother a second chance so once again my darling Coolman has been forced into changing schools and homes for the second time this year.  The action started after a kitchen fire event which he wasn't there for luckily.

Kawungan means 'scrub magpie'

It looks like he is wasting away.  Mother said he had no appetite because of the tablets.  Step-mum said they have put him back on his tablets.  A week-long bonding session preceded this day so he has missed a bit of school.  He is attending a special needs class that has only 8 students.  Step mum reported that he likes the teacher and that he is pleased with himself for doing well on the first day.  A good start at a school which has this policy.

My legs wouldn't work properly

My legs stopped working properly this week but I could not figure out what the major contributing factor was.  One day of it was scary enough but my tried and true treatment (don't use any part of your body that is complaining unless you have to and go to bed early) had me convinced that it was only temporary within 2 days.

Despite sitting mostly, the rebound suffering after Connor and Co's visit proved too much for the anti-inflammatory effects of the Prednisolone at that little dose anyway.  It has been really bad since then so I could not get to the Lung scan even after resheduling during the week.  I made it to the pain specialist with the help from a friend who drove me.  On 10mg bid now - added 5mg to night dose of main ingredient in Targin.  It does not cover my pain but I did not seem to be able to get that across to him.  He had me out the door in 10 minutes.  He was not interested in discussing the neurosurgeon report either.

 Remind me to phone housing next week.  The kitchen vinyl was not included in the contractor's instruction.  It will mean a hotchpotch of colour/joins if that is not included.

Defending myself about Diabetes politics with magazine evidence

After the disagreement with Johanna about the facts, I found more evidence/warning. This was written in the Diabetes Educator's magazine yesterday:

Do you realise this means I need to order supplies this month and fill in some form before or after my first order of supplies after July 1 to get an extension so I can still buy test strips.  They cost me $1 something now for a whole packet.  Lancets I could get cheaper through the Diabetes Association online than a chemist because they stocked el cheapo brands.  Without subsidy, the packets cost $60? So who is going to be able to afford to prick their finger to keep an eye on things or when introducing a new food anyway?  Stupid, stupid Government. #auspol #diabetes

Thank God for Steroids

If anyone cares to take note of the fact that I have always responded favourably to steroids, then I should be able to get back some quality of life.  I had to beg to get 7 days treatment.  The pain specialist might be interested to hear about it anyway assuming it is preferred over higher doses of opiods. UPDATE: no, he did not use steroids in pain relief although he said they would make me feel fantastic.

It is day 3 of taking 5mg prednisolone and despite hardly getting any sleep last night because of the so-called Telstra 24/7 service (another line problem wrecking my Internet connection), I already feel so much better.  My heart was not palpitating every step I took, my legs do not feel as heavy as lead, I am not breathless when walking around the house/yard and I am walking at a normal pace again.  It feels like a miracle to me even though it does not help my aching legs.  I have not been able to pick up even a cup of tea without pain in my arm, probably from my shoulder but today I noticed it was feeling much better too.

Unfortunately I did have to spend more energy than I intended because Ange and family came to give me a belated birthday present.  It was like being invaded by bedlam.  I much prefer to see my grandson on his own and I wish they would not bring their dog to intimidate Milo.  She shook like a leaf the whole time.  Esha would not leave her alone either.  She just wanted to cuddle her all the time.

Cal came over from next door to give me a paw paw from their tree and I gave her lemons.  She is usually housebound herself.  Telstra finally booked me in for a tech visit on your birthday Mum in the evening. So there was lots of people contact today as well as an iherb delivery.  I got my almond flour and CoQ10 and my favourite supplement NAC Sustain.  Actually D-Ribose (ATP energy fuel) is my favourite but I can never afford it in the powder form that works.

I cannot play my game on the Internet for the third day in a row so maybe it is going to work out OK being busier than usual until it is fixed.  Typing more blogs is another side benefit for you guys.  I can press the publish button when the Internet comes back on again.

Because of this wonderful steroid response, I am now less worried about getting to the pain specialist next Wednesday and when I found out the lung scan will only take 20 mins I booked in for that on your Monday birthday too.  I hope it is a good omen for a shrunken tumour/nodule.

I will probably catch up with Jan and even Brenda over the weekend.  Brenda has to come to deliver the Avon although she has already cancelled once.  Scoot wanted something too - Rose spray for the car.  I like the Pot Pourri better myself.  The toilet room has been waiting to get hold of some for a while and for some reason the smell does not irritate me like all the shop bought ones.

Maybe I will get my old iMAC on the weekend too.  Brett's Kitty is coming down to Brooke's place to work out wedding stuff with her while Brett camps at Inskip Point for a buck's party.  You met Brooke at the PW Tavern when she was thin and maybe pregnant.  She and Nick have a lovely looking toddler and they are getting married soon (or not so soon) so no doubt Brett will come down for that.  Kitty is maid of honour.  I think Brett is looking forward to "no women allowed" on the campsite.

I have another story to tell about professional cleaners and Scott.  I saw Scott last weekend when he picked up the table from Bunnings for me but I am not going to type any more.  I am sorry about Auntie Marie's death this week.  You timed your last visit to her well.

I feel like I have been dismissed again #millionsmissing respect and dignity

Many of us feel that the establishment has often silenced our perception of what is happening in our bodies.  I felt like that today.  I went to the doctor.  My lady doctor.  I felt too ill to go but I hoped my note would keep me on track and I had run out of pain killers so I had to go before I would go into withdrawal

I had no wheezes or sounds in my lungs so I guess she did not believe me about months of that.  But I did tell her the Rhinocort worked.  She did not seem to object to me using it again but it is no longer available on prescription.

I told her I felt feverish, she did not take my temperature.  

I told her I had a sore throat and that they had Crimson Crescents (see previous post for photo).  She said they were normal and that it is lymphatic tissue in that area.  In fact my whole throat is normal  (even though it is sore and I cannot sing any more).

I told her that it hurts a lot to lift anything with my right hand.  She did not comment when I said I wanted to talk mainly about my mobility today.  I guess I told her I was getting breathless and/or dizzy but I can't really remember about that.  It was pretty obvious there was something wrong with my walking but she did not even ask what was wrong.

I asked for the neuro surgeon report but she said it was marked confidential but she could read it to me.  I let her read it, waiting to hear the words he spoke to me - that the arachnoid cyst on my spine is the initial cause of my leg pain and the pain between my shoulder blades.  It was not mentioned.  No wonder GPs get a false impression.  The letter came across sounding like I had gone in looking for spinal surgery and was recommended against it.  It was me who baulked at the idea of spinal surgery and asked for a delay.  All he said in the report was that a review MRI in 12 months was suggested.  I paid for that private consultation and I am concerned about the strange sensations I get around my back and rib cage, from tingles to itches to stings especially back right.

I told her I had palpitations when I walk and that I was taking Deralin again to help which it does.  I asked her if I could put up the dose because they are bothering me still.  She did not answer that but I think she went to consult her computer. She certainly did not take my blood pressure.  She did not give me the OK to put up the dose so if I have a heart attack you take note of this.

I told her I felt very ill, that running out of energy could make me feel nauseous and that I was seriously considering getting the mobility scooter back.  She just accepted that without comment.  I asked for a Parking sticker.  She did not answer but she asked about where the scooter was.

Why do you #putoutyourshoes on May 25th?

I told her I was really ill and am no longer able to recover from an outing and more or less begged her to do something.  She asked what.  I told her I thought I needed antibiotics and she said there was no indication for that.  We talked about negative mycoplasma Pneumonia blood tests being unreliable and I got a bit narky and so did she.  I did not back up anything I said with the findings of Dr. Kazuhiro Matsuda because I could not remember his name to tell her.  Do you know how hard it is to think fast when I am like this?  I am finding it impossible to even stick up for myself.  I am just as likely to go into a trance and stare for a few seconds.  It happens all the time...before I went on pain killers too if you are wondering.  

I asked what I could try and then suggested steroids. She said something about my steroid use in the past and said things are different now and I couldn't have them either but then she asked ME how much and for how long do I want them.  How would I really know I thought to myself?  I was grasping at straws when I said 5mg a day for a week.  If I was being treated for Crohn's as in the past I knew it would be a whole lot more.  But she agreed to it being an appropriate way to treat this relapse.  I don't know why.  I also know she would not have suggested it if I hadn't have broken down and said "what am I going to do to try and get better?".  I am just hoping it gets me well enough to make it to the pain specialist next week.  Why do I have to fight so hard just to try and maintain what quality of life I have left?  The nightmare is getting worse Mum.

I told her I needed a diabetes A1C blood test because I was overdue.  She asked what my blood sugar was like.  All I could tell her was that it was 6.4 when I took it yesterday half an hour or so after half a breaky biscuit.  It seemed like fine figures to me but then we got into another awkward discussion about patient blood glucose monitoring.  The Australian Doctor magazine suggested that those with diabetes 2 who are not on medication should not even monitor the blood sugar level at all let alone daily.  I did not want to tell her I read it on the official doctor mag so I was vague with my reply about the Internet but I told her Dr Craig did not want me to have a machine.  She obviously disagrees with the AMA and does not even know it!!!  I disagree with the AMA in that regard too (and plenty more).  Anyway I have not seen a high reading for months and months so I am expecting a good result from the quarterly average.

Look what got published since.

Dr J had a go at me again for going to too many doctors - meaning the one down town that gave me my results for the lung scan and my LLMD (in Maleny she still says) who I have not seen for years now.  It was mainly because she did not remember what I was talking about when I brought up the lung nodule and she used that as an excuse for not having an answer on the tip of her tongue about what this lung nodule is in need of.  I told her I need a rescan because I was due for it.  She blubbered about not ordering the original CT (hi res) so that is why she felt out of depth about it but I reminded her that she said she would have her records up to date about it twice now. Otherwise I could have got into see Craig sooner.  And for the second time I asked her if she wanted me to go back down town to the original doctor?  She said no.  I then looked at her in the face and said "None of this doctor stuff is my fault". No more said after that.  She looked up the records and wrote out the referral I needed.  I am not planning on making an appointment at Pacific Radiology until I feel better and next week may not be good because I have got two things on already.  One is the pain specialist and the other is a social work visit.
And I have to fit in poor Connor who has a belated birthday present for me and who I had to stop from coming due to his virus and my relapse.

Fukuda vs Canadian vs International symptom variation confounding research efforts.

I had to walk further than I thought today because the local QML was conducting a procedure for the next 45 mins and they suggested going further up the road.  You could have walked.  I took the car.   There were other blood tests and a urine test but not the NK cells or CD57 that I mentioned other people were having.  She did not put them on the form and by the look on her face I would say she thought it was over the top.  What I saw were just blood tests I have seen done on me over and over but then are ignored anyway even if I do have elevated liver enzymes or something.  However she said I had to have that blood test before I started taking the prednisolone I think it is.  I know from past experience that it will be likely to cause insomnia but hopefully only because I have a false sense of energy which I will have to be careful not to spend until I need it to get to Dr Georgius etc.  I plan on doing as little as possible but I hope I have enough real energy to get groceries and other essentials.  I'd like to dye my hair.  I still have not got my birthday hair cut though so I hacked my own fringe (too short).

My temperature was only 36.1 this morning but it was only 8 degrees C when I went out to post your birthday present Mum.  37.4 last night. 36.8 right now.

Update: June 2nd - All blood test results labelled "No Action Required"

I am not very well but there are #millionsmissing not just me

My temperature is 37.4, that's all.  Relapsing and remitting mini-fevers for 20+ years.  My basal temperature is about 36.5.  I'm dizzy.  I'm in pain.  Lead legs, hard to concentrate, light sensitivity, sore eyes, breathlessness, zombie mode, placid, sit and stare, don't want to move, nauseous, don't have an appetite, neck pain, surprisingly not so sore neck glands though, sore throat, burning mouth, aching legs, hurts to lift a cup of coffee with my main hand, headache, reflux, delayed gastric emptying, aching fingers, burning soles, tingles and strange sensations right hand side of my back (but that's probably the arachnoid cyst on my spine), strange wheezes cleared with a productive cough when I breath in, squeaks in my throat when I breath out, shoulders relentless, forget what I am doing, slow to make a decision, stopping and doing nothing but exist for a few seconds while waiting for brain to tell me what to do next,  slow to process information, good for nothing but cuddles.

Crimson Crescents

I've got two of those, one on each side.

Crimson Crescents Facilitate CFS Diagnosis
By Robert B. Marchesani

Infectious Disease News, November 1992

MINEOLA, NY—A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about a clinical way to diagnose the disease.

Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them.

"When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, N.Y.

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients.

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said.

Cunha' s crimson crescents are located on both sides adjacent to the back molars. (See figure.) They are present as a crescentic membrane of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson-purple and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other, Cunha explained.

When someone has a tonsillectomy, the borders of the crescent become less distinct and the margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha.

They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder.

"In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said.

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha.

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine.

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources.

"But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained.

"If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said.

Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News.

This article was reprinted by The CFIDS Association of America, Inc. publisher of The CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 11, November 1992.

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