I'm sick, I miss Plaquenil

If this has got anything to do with being off Plaquenil for a week then the only thing to do is go back on the Plaquenil which I have, at half the dose.  The only problem is the itches and burning mouth.  They have not stopped.  I have not had any fresh lumps and no more sore ones that feel like boils for a day or so.  I have little bumps all over me but I cannot make out whether they are new bumps or old bumps - but so far no more red bumps but the old ones still itch.  Even where there are no bumps I am still itching all over and do enjoy a scratch every few minutes.  I am getting pricks and stings as well.  But this mouth burning has been going on ever since January.  It started with just the tip of my tongue.  I had a sore throat back then too.

My glands came up very sore again yesterday and it is the third day after the lifting I did on Sunday.  A third day peak in symptoms after exertion is typical for me.  Slightly worse the next day and so on till the third day.  So what happened on the third day which was yesterday?  I got visitors.  I was sound asleep and eventually the yelling at the door got through to me.  It was 4.30pm and I have no idea how long I have slept for.  Not even sure what day it is.  It was Rob but he had brought a long time friend of ours who was temporarily in town.  they came inside while I got dressed but I could not wake up/think/feel like I was making any sense or take in what was being said so I asked them if they could possibly find something to do for a while and come back.  No problems - they had to do a grocery shop for Judy.  It turned out to be a grocery shop for tea as well.  Rob bought prawns and salad stuff for bread rolls and dressings and discount meat that he just gave to me because "I know you like lamb".  I had no money to pay him back so I didn't.  I didn't ask for it.  Happens a lot.  Lamb roast in the oven tonight.  But I have no energy to do much more than slice off some meat and I feel fluey and awful and have been sleeping most of the day.  Relapse and not just a post-exertional response which I can catch up on if I sleep.  Sleep is not rescuing me this time.  Maybe getting the Plaquenil back into my system will.  It takes 3 months to peak and I stopped after only 1 because of the suspected allergy or reaction or liver involvement.

The itches are my prime concern because I do not know what is causing them and they are constant but now not as insanely irritating as when those cluster of tops had formed after the blisters.  I am now wondering if it is Shingles.  Apparently you can get it in your mouth and people are complaining about long term effects in terms of itching and mouth burning even after the lumps.  Some sort of post-shingles neuralgia.  I'm going back to the doctor tomorrow to see what Fleur thinks.  If it was Shingles, it could be my chance to get on antivirals which is the only treatment for M.E likely to actually lower my viral load according to what I read (as opposed to just treating symptoms).  Unfortunately they have problems of their own.  I know too much.

Infections Venulitis, ME/CFS by Ryll

INFECTIOUS  VENULITIS

CHRONIC FATIGUE  SYNDROME

MYALGIC  ENCEPHALOMYELITIS

Erich D. Ryll, M.D.

Assistant Clinical Professor of Medicine

Division of Infectious & Immunologic Diseases

University of California, Davis

   

HISTORY

In the spring and summer of 1975 there occurred a major, severe epidemic of a communicable, apparent viral disease at the Mercy San Juan Hospital in Carmichael, a suburb of Sacramento, California. The first two cases became ill in February; the bulk of the cases fell ill between July and November of 1975. Several cases tailed out to 1978. The epidemic spread to all departments of the Hospital. It was equally severe in all departments.

I was appointed chairman of a committee to investigate the outbreak. Fearing that some people might die, I asked that the CDC (Communicable Disease Center of Atlanta, Georgia) to become involved. An epidemic intelligence officer of the CDC spent one week in residence, and an epidemiologist from the California State Department of Health, Berkeley, came for a day.
Cultures were obtained for all known viruses, bacteria, mycoplasma, and rickettsiae, and all were found to be negative. The disease was apparently due to an unknown agent, presumably a virus.

At the time we did a literature search and found three reports of outbreaks that were called EPIDEMIC PHLEBODYNIA (EP), meaning painful veins. While the disease at the Mercy San Juan Hospital (MSJ) was somewhat similar, it included many more features than were described in EP and so at the time I did not believe it was the same disease. Additional literature search showed that the disease was very similar to EPIDEMIC NEUROMYASTHENIA/MYALGIC ENCEPHALOMYELITIS (ENM/ME). But troublingly, very few vascular features were mentioned.
I have followed these patients on a daily basis since 1975. This is the longest continual study of this type of disease that has ever been made. Because of this, I have learned all the nuances, all the signs and symptoms of the disease. Because the complaints of patients are so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble.

One must remember what a famous French physician, Jean Martin Charcot, said many years ago; "DISEASE IS VERY OLD AND NOTHING ABOUT IT HAS CHANGED. IT IS WE WHO CHANGE AS WE LEARN TO RECOGNIZE WHAT FORMERLY HAS BEEN IMPERCEPTIBLE."

INFECTIOUS VENULITIS

Infectious venulitis (IVN) is a disease caused by an as yet unidentified virus or perhaps a combination of more than one virus. It begins with an influenza-like onset, often so severe in nature that I call it a flu-storm, with headaches, sore throat, fever, dizziness, runny nose, nausea and vomiting, muscle aching, extremity pain, and other features. Unlike ordinary flu, the flu-storm can last from weeks to over a year. Sufferers are very drowsy at times, especially during relapse that almost resembles a light coma. The extremity discomfort is often described as a burning, searing sensation. Joint pain can be severe. Numbness and tingling of the extremities is common. The cases that occur in an epidemic have spontaneous bruises that occur without any injury, and painfully swollen veins. Those who become ill from the epidemic cases might not show this - these cases are often milder, or the bruises and painful veins might have only been at the beginning and went unnoticed.

After the initial flu state leaves, the patients are still not well. They have a constant plateau of illness punctuated by unpredictable relapses. In women who menstruate, the disease is worse at this time and relapse is apt to occur. Some patients have a relatively mild flu onset, only years later to suffer a relapse that is worse than the initial illness.
The disease is frightening to patients because of its severity and its many, unusual features. Physicians are not trained to diagnose an illness that encompasses so many signs and symptoms. Two common statements patients make during the initial flu state are: "I hurt all over" and "I am going to die".

Patients who suffer from IVN have the following features:

1. Severe exhaustion and weakness
The exhaustion that occurs in this disease is profound and unusual. Patients often are not even able to hold up their heads. They have a compelling need to sleep. During relapse, patients have been known to sleep around the clock for days on end. The usual sleep pattern requires many more hours than usual. Yet patients do not sleep restfully and do not awaken refreshed. In the day time they state: "I live in a fog." Strength is greatest for most early in the morning. After a short time, endurance fades and patients must obtain bed rest. Energy is at a low ebb all of the time. Patients find that they can do small tasks in spurts, resting between times. During relapse, many can be totally helpless and unable to care for themselves. Walking at all can become impossible and patients have been forced to crawl on their hands and knees.
Most women love to shop, but for a woman with IVN, it may be next to impossible to do so. I often suggest a wheelchair for activities such as extended shopping and other social events. Many find that they can think more clearly lying down and are able to do a limited amount of work this way - it apparently improves their brain circulation. One patient who was desperately trying to hang onto her job would dash down to her car on her breaks in order to rest lying down, to continue working.

Patients have been known to fall asleep inappropriately, at times in mid-conversation. One severely ill patient reported that at times her head would drop onto her chest while she was standing up and she would be fast asleep.

2. Disturbance of cognition/mentation
Short term memory can be severely impaired. Patients cannot remember where they place items, or store them in inappropriate sites, such as putting a book in the refrigerator, etc. Calculating is difficult; checkbooks cannot be balanced. They often cannot take care of their own financial affairs. Directions are difficult to follow; road signs cannot be read. Filling out forms may be impossible. Mental work of any sort becomes difficult or impossible. Patients cannot find the right words to say - it is though the brain is no longer connected to the tongue. At times patients have told me that their brain does not send proper signals to their arms or legs and they cannot function. Women have difficulty in following cookbook recipes. Reading becomes difficult or impossible. Patients must read again and again in order to comprehend.

Overt confusion is common. Many have great difficulty in driving and get lost, even in familiar neighborhoods. Some have gotten lost on their way to my office and had to call family to come and get them. Others often report that when they are driving they suddenly realize that they don't know where they are or where they are going and can't find their way home. There are frequent mental lapses.

Panic is common and can be severe. Rarely, patients become psychotic and have hallucinations. But this is usually not a true psychosis - they know it is not real. It is unlike Alzheimer's syndrome in which patients do not seem to have an awareness of their true state.
Because of a frightening new disease that physicians cannot recognize, diagnose, or understand, and because it never seems to go away, patients become depressed. Upon visiting physicians, this depression is recognized and blamed for the entire illness. This of course is not true - the depression is a result of the disease and does not cause the disease.

Nervous system abnormalities

Dizziness often occurs and for some patients, it is constant. They are uncoordinated and lurch about. They do not know where they are in space, often hitting door jambs and at times have falling episodes. They state that their legs just give way causing them to fall. At times falls result in severe injury. Some have fainting episodes. Small strokes are not uncommon and can be very alarming. Seizures can occur. Many are only able to drive to a limited extent; at times, not at all. Others can never drive. Patients at times have fainted while driving and awakened to find themselves in ditches, etc. Some have had definite nerve damage such as not being able to lift a leg, etc. Some have had to use canes, walkers and wheelchairs. At the worst, patients are bed-confined.

Patients drop items unexpectedly from their hands. Women often burn themselves in the kitchen. There is difficulty in performing fine movements such as writing. Blurred vision and double vision are common. Eye muscles do not work properly. Ears ring and at times there is an extremely annoying fluttering or roaring. Numbness and tingling of extremities is common. This interferes with feeling and handling objects.

The autonomic nervous system that results in flushing, blushing etc., that controls blood vessels is deranged in this disease. Sweating, flushing, icy and blue hands and feet, hot sweaty hands, red and blotchy hands are common. When patients are in relapse it is easy to tell that they are ill; pallor of the face and dark areas under the eyes, etc. But when they are not in relapse, but still sick, they are mistakenly thought to be well. One cannot place reliance upon looks.

Pain

Pain can be the most severe aspect of this disease. It affects all areas of the body; headache is usually the more severe pain and is difficult to control, even with the most potent opioids at times. With the more severe headaches, there is nausea and vomiting that at times can lead to dehydration and hospital admission. Joint pain can be severe, but the disease does not cause a destructive form of arthritis. Mild swelling of joints is common; rarely, is it severe. The joint pain is migratory - travels around. Ulcer symptoms and ulcer disease is common. Patients relate that their food doesn't digest - it just sits in the stomach. There is partial paralysis of the stomach and gastrointestinal tract - this can result in nausea.

Pain and all aspects of this disease are made worse by exercise or attempting to behave normally. A patient during a better period might attempt to act normally and then find herself or himself in bed for days. A common statement is: "I pay for everything that I do."

The discomfort of these patients is made worse by the hostility that they encounter from family, friends, associates, and physicians. Disbelieving and unsupportive spouses lead to marital stress or dissolution. Children become burned out and friends do not always want to hear that a patient does not feel well. Because patients have so often been told that nothing is physically wrong with them, they begin to believe they are "crazy".

Vascular features

At the onset of their disease, many patients have unexplained bruises (without any trauma). These often sting and burn. More severe cases exhibit swollen veins, painful in nature. At times, clots have formed in veins, but usually not in the deep circulation. Small veins can suddenly rupture, with a stinging sensation, and leaving a bruise. Deep veins can remain inflamed and are not visible on the surface.

A relapsing course

Except for the mildest cases - or those who have symptoms only during a relapse - patients have a constant plateau of illness during which they are still not well, but do not appear that ill. Appearances can be deceiving. Bear in mind that many patients with cancer, heart disease, diabetes, and other severe illnesses often appear to look normal to the casual observers they are encountered at the grocery store, church, and other sites. During relapse, however, patients look unmistakable ill. Relapses can be caused by physical, emotional, or environmental stress. Again, in the menstruating woman, relapse can occur at this time and the disease is worse in general at the time of menses. Relapses can last for indefinite periods from weeks to months to years.

Laboratory studies

To this date there is/are no conclusive test or tests of abnormal findings that are in keeping with this disease, most of them involving the immune system.

An electromyogram is frequently abnormal, showing damage to nerves. The magnetic resonance brain image (MRI) often reveals evidence of demyelination - damage to the myelin sheath covering the brain. The MRI can show the same findings in other diseases as well, including multiple sclerosis. A specialized SPECT scan invariably shows impairment of brain blood circulation. A PET scan can be abnormal, indicating that the physiology, or function of the brain is impaired.

Cytokines, produced by lymphocytes, are substances we all need but in this disease, there is often an excess that causes damage or the production of some that are damaging by nature. Some cytokines are protective, and perhaps they are deficient in this disease.
Some tests commonly found are in keeping with, and support the idea of an active viral infection. Muscle biopsies are often abnormal as well as other tests for muscle disease. Muscles, however, may be damaged but do not visibly shrink or waste away.

Treatment

There is currently no treatment that can cure this disease. Treatments are geared to treating symptoms and making life more bearable and functional, as well as to modulate, or change the immune system so that it can better combat the disease, Immune modulating therapies, however, are usually expensive and insurance carriers are loathe to pay for them.
Beyond this, however, there are many things that can be done to improve comfort and well-being. One must always have a positive outlook - have a mind set that the disease will get better. This aids the immune system - and indeed, it is possible. You must re-structure your life. Accept that you have this disease and live within its limitations. It takes some experimenting to find out how much you can get by with. Be as normal as you can, but do less of everything. Rest is essential and restorative. Gentle aerobic exercises are advised to maintain muscle tone.

OUTLOOK

The general tendency is to slowly improve and the majority of you will recover much of your function, but all things are possible. Very mild cases often recover entirely. Many of you will have residual symptoms for a long time. Beyond the mild cases, most of you will continue to have some symptoms at least intermittently.

THERE ARE A NUMBER OF CONFUSING ENTITIES (CONDITIONS) THAT NEED TO BE DISCUSSED:

FIBROMYLAGIA

Fibromylagia is an inflammation of joints and musculoligamentous connections. The diagnosis rests upon finding so-call trigger points over various joints. Early on investigators stated that if one has fibromyalgia, one should exercise - it makes you feel better. Now they do not say this. It is a term that is used by Rheumatologists chiefly although now other physicians are beginning to use the term. Generally, if you are seen by a rheumatologist or internist, he or she may say that you have fibromyalgia. And indeed you have fibromyalgia. But it is one facet, one part of your illness, the chronic fatigue syndrome. I have examined 5000 of you at this time and all but about 8 have had the chronic fatigue syndrome (infectious venulitis). The eight I mentioned had fibromyalgia that I could not categorize. It was caused by something else. The remainder of the 5000 all had your disease.

In other words, fibromyalgia is just one part of your disease. Some of you have it mildly, some of you, severely, Generally I believe that those who label this disease fibromyalgia are akin to the seven blind men with the elephant; they only see the trunk or the tail - and miss all the rest that is going on with you. Many of you fulfill all of the criteria for fibromyalgia  in addition to the chronic fatigue syndrome and/or infectious venulitis.

Fibromyalgia can also occur with many other illnesses including cancer, Lyme disease, rheumatoid arthritis, lupus erythematosus, to mention just a few. Other viral diseases can cause fibromyalgia, but unlike your disease, it does not last very long, nor does it keep coming back.

SICK BUILDING SYNDROME

I have examined many of those labeled as having this. I find the disease identical to the chronic fatigue syndrome. There is no difference - it is the same disease. Also, these people without exception show the same laboratory features. I will comment later on causes.

GULF WAR SYNDROME

At this writing, I have examined two patients with this label and also, find them to have the chronic fatigue syndrome. From the histories that they gave, it also is a communicable disease, as is the chronic fatigue syndrome. They are already carrying, or had been simultaneously exposed to a viral agent that caused disease when they were exposed to an environmental toxin or pollutant.

EPSTEIN-BARR VIRUS DISEASE (EBV)
This is an outmoded term, but one that physicians who are not up to-date (and they are many) still cling to. No expert, including me, believes that chronic fatigue syndrome (CFS) is caused by EBV. Whether it plays a lesser role, along with other viruses, cannot now be determined. But it is not the cause of your disease. It is reactivated by CFS, along with other common viruses.

SUMMARY

The chronic fatigue syndrome first occurred in modern times at the Los Angeles County Hospital in 1934. It occurred in the midst of a poliomyelitis epidemic. Several astute physicians recognized that there was a new disease present. Gilliam, who wrote a large research paper accurately described CFS but did not name it. In the fifties there was an epidemic in Iceland, also associated with a polio outbreak - but again, recognized to be a new disease. It was found that patients who developed CFS became immune to polio. CFS has occurred more or less world-wide. Epidemics have been described in closed, contained populations such as schools, military barracks, convents, monasteries, and especially hospitals.

What I call infectious venulitis, that occurred in severe epidemic form in 1975 in suburban Sacramento, is a variant of the chronic fatigue syndrome. Until 1988, it was called epidemic neuromyasthenia (ENM). Those in the United Kingdom call it myalgic encephalomyelitis (ME), a term that is still in vogue, although chronic fatigue syndrome is starting to be used there interchangeably. I believe that the pathophysiology - the damage - is to the vascular system. Pellew & Miles who studied an epidemic in Adelaide, Australia in the 50's and inoculated monkeys with material from patients described damage to the vascular system. Gilliam and others found involvement of the vascular system in the Los Angeles outbreak also. I find evidence of involvement of the vascular system in the chronic fatigue syndrome, although generally not so striking as infectious venulitis.

In the 50's and 60's, three different epidemics of a painful vein disease occurred in this country and were published in the medical literature. It was called epidemic phlebodynia (painful veins). It had many features of what I call infectious venulitis and the chronic fatigue syndrome. I believe it was a milder form of infectious venulitis. (Infectious venulitis has a more complete expression). It has not been reported since the 1960's.

In 1984 I visited New Zealand at the request of medical staff at the University of Otago in Dunedin, the South Island because of a widespread epidemic in both North and South islands of New Zealand. It was called myalgic encephalomyelitis (ME) or Tapanui Flu, after the small area where it was first discovered. I spoke to large groups of people and appeared on national radio and TV. I was able to examine patients there and showed medical staff my methods of examination. It was then I found what I was calling infectious venulitis (IVN) was the same as ME, and thus also, ENM.

Also in 1984 I presented a research paper at the INTERSCIENCE CONFERENCE FOR ANTIBIOTICS AND CHEMOTHERAPY, a forum where much original research is aired world-wide. This was in Washington, D.C.. An abstract of this presentation is published in their proceedings of that year.

In 1985 two scientific papers were published on so-called Epstein-Barr virus disease. At the same time, an epidemic of a strange, viral-like disease took place at North Lake Tahoe in Incline Village. Researchers there, who had read these two papers promptly called it chronic EB virus disease. When this occurred I had misgivings and did not believe that this was the case. Virtually the only manifestation of EB virus is infectious mononucleosis with rare exception. Other types exist but they occur in severely immune deficient individuals. The reason I did not believe it because among my patients with IVN, whom I had followed daily since 1975 - some had developed infectious mononucleosis well after the onset of IVN. I witnessed the infectious mononucleosis to come and go, but IVN remained and remains the same to this day. I had reasoned that the disease at Lake Tahoe was either the same disease as IVN or a variant of the same disease. And if this was so, it could not be due to the Epstein-Barr virus. Finally, all experts in the field across the country came to the same realization - the disease was not due to EB virus.

In 1986, the National Cancer Institute of the NIH discovered a new human virus that they first named HBLV and then renamed HHV6 for human herpes virus number 6. There was an immediate flurry of activity and claims that this was the cause of the Incline Village outbreak and the cause of CFS. But this did not prove to be the case epidemiologically and this theory has been largely discarded at this time. It is possible that HHV6 plays some ancillary role, along with other viruses. Since then HHV7 and HHV8 have been discovered - two human viruses without a disease discovered thus far. There are now thus 8 Herpes viruses; chicken pox/shingles (the same virus), Herpes simplex-fever blisters & genital herpes, cytomegalovirus (CMV), Epstein-Barr virus (infectious mononucleosis), HHV6, HHV7, and HHV8.

In 1988 the Centers for Disease Control (CDC) of Atlanta, Georgia's (formerly called the Communicable Disease Center), convened a symposium featuring many prominent researchers of this disease from across the country. The name chronic fatigue syndrome was coined and criteria were changed and simplified somewhat.

How is chronic fatigue syndrome/myalgic encephalomyelitis different from IVN?  I believe it is the same disease. Although no vascular features are mentioned in CFS, there are allusions to vascular involvement in ME. I believe thus far researchers on CFS have failed to note them - they are there. Many of you whom I have examined exhibit the same features as my original patients of 1975 with very evident vascular features. In all of you I find inflammation of deep veins.

My original 1975 cases, with the passage of time, have less evidence of superficial vascular involvement and now resemble most of you. Aside from that, you fulfill all the criteria for CFS. But unlike the official diagnosis of CFS, I also use a very specific physical exam to make the diagnosis.

So what causes IVN / CFS / ME ?  A specific viral agent has not yet been identified. It does not appear to be anything common. It could be a viral agent very difficult to cultivate. It could be what is called a partial virus. Could it be due to two viruses? As yet there has been no association with the retrovirus that has been proven. The previous finding of a retrovirus has not been able to be repeated by experiments and is invalid. But suppose that all, or nearly all of us, carry an unknown retrovirus in our genes. And then another viral agent infects and the two in combination produce the disease? Or could this illness be due to a virus that escapes immune surveillance. This is, that our immune system is unable to detect it as a foreign invader?

There is a very interesting illness called the post-polio syndrome. Patients who have had polio 20-30 years before acquire an illness that closely resembles CFS. I have examined some of these people and cannot tell the difference. Could this syndrome be due to a mutant polio virus that escapes immune detection? Earlier I said that the early epidemics of ME/ENM/CFS were always in association with a polio outbreak. And that those who came down with ME/ENM/CFS were immune to polio.

There are those who believe that CFS can be caused by different things such as stress including injuries, operations, childbirth, and exposure to toxins (here is where the sick building syndrome comes in). I myself believe that there is always a virus in residence. I believe that these various stresses can precipitate the virus to cause CFS in individuals who are already carrying it or are exposed to it at the same time as the given stress.

The general tendency in this disease is for gradual improvement but anything is possible. Beyond the mild cases who might totally recover, most of you will have some symptoms lifelong.
It is very important for you to have a firm diagnosis. If you know what you are up against, it is half the battle won.

Erich D. Ryll, M.D.
6437 Fair Oaks Blvd.
Carmichael, CA 95608

ca. 1994
From  Dr. Ryll’s information for his patients.      

Also available at http://c4jrme.110mb.com/supplement223.htm

Esha, Connor, Number One's latest and the Vacuum Shop

I went to get my blood test, this afternoon and did a bit more than I planned while I was out. I went to the fruit shop and the op shop at Golden Beach and bought Esha a pair of tiny knitted booties that someone hand makes. I got petrol, and decided to buy Connor one of those school snack bags they make at Rainbow Fuel because I decided that I would visit ange's house armed with unwrapped gifts and no cards. 

It was nice to see them after so long and Esha is a typical little baby and you can see that she has totally different genes.  quite angular.  I had a nurse, a little chat, a drink of water and told Connor outside that he could come to my place sometime if he wanted to.  He has been playing up a bit a school.  On top of that, it seems he is not keeping up with his peers.  Immature and trouble with fine motor skills (like Scott).  ange wishes he had not been put up to grade 2 because he is really struggling to keep up now.  The others are writing sentences and Connor is struggling with his letter formation still.  I remember what that sense of failure to does to children only too well by watching how it affected my boys - especially the first one.  The cross we bear so to speak.  It is so peculiar when you think about how our personalities and thoughts about ourselves and others are formed when we are children and then have to be undone again when we are adult enough to know that we can undo it if we want.  It seems like we have to accumulate a sense of our strengths and weakness by comparing ourselves to others and when that produces painful emotions we start growing beyond all that.

after the visit to Connor's house I went to the Vaccuum cleaner shop to exchange the bags I bought last week only to find that my kind of bags cannot be purchased any more so I had to re-take the one's I originally bought which will fit after all.  another wasted trip.  I hate using up my energy for nothing so I will have to learn not to hate it. 

I went back home via Jaycar where I bought a keyboard so that I could type my surname.  The darn thing doesn't even work so now I am going to have to go back tomorrow.  More wasted energy.  I was actually planning a very low energy day and the funny thing is that even with all that activity, I felt like I could not wake up properly all day.

I am sore and tired and I can't seem to be bothered to make a proper meal.  Number one phoned.  I have not heard from him for a while and I shouldn't have been surprised when he said that he has moved again.  To Kuluin again but not the same house I assume.  He said he had moved offices too but I am not sure who is working for or with because the Nambour Broker sacked him.  He admitted he did not get on with them but I have no more information.  He decided he wanted to hang up when I started to lecture.

There was a hint of Winter this morning.  I had to pull up something other than a sheet.  It will be much better for me when it is cooler.  I will be able to sleep a lot better because at the moment I still have to go to bed with the fan on and it is so noisy.  Maybe not tonight.

Itches, Swimming and Travelling People
Plaquenil has a reputation for causing sun sensitivity and a rather large proportion of people taking it are reporting itching, scratching themselves to bits and raised, blister filled lumps and even hives but when I started itching it was over a week since the sun burn I had. But not all are associating it with the sun since a lot of them are housebound with Lupus.

home-made bathers

When I started getting miniscule lumps on top of the itching skin it had been very humid and I thought it was a sweat rash.  I scratched and I felt fluid break even though I could barely see them.  I have also been bitten by sandflies and mosquitoes so I also wondered if it was an allergic reaction.  But the most recent bites do not look anything like the red pin prick tops that have been left in a few different places on my body.  I also have the sorer type of lump emerging.  One was so sore I thought it was a boil developing but like the others it is now just a mark but it had no fluid and does not itch.   I have stopped taking the Plaquenil now but I went to the doctor yesterday to get some anti-histamine that I could have bought over the counter without a doctor's script.  It reminded me how long it must have been since I have needed an anti-histamine and how forgetful I have become because now I am sure I already knew that.

a bit of artistic license

It was an impromptu appointment because I was not willing to put up with the itching any longer at that point in time and I got an appointment with Dr Fleur Thomas who did her amazing act of running down the street after me when I left without the blood test form that she actually did not write when I was in her room.  She decided that I should be tested for any effects Plaquenil may be having on my liver.  I will get that blood test soon.  It was too late for the 3pm closing time at QML Golden Beach yesterday. 

Cold Salt Water for Itches?

Earlier in the day I went looking for a clean looking spot to get cool locally and I ended up at Fraser Park just past the GB shops heading to town which is actually the designated bathing area with a life-saving tower that only operates in peak season.  There was no-one there yesterday.  I had been to my closest favorite spot at the SS. Onslow Cadet area but the water was not blue enough for my liking.  I took a few photos before I moved on but the camera kept saying that the SD card needed formatting so I did not bother trying to take any more at the later spot. But I did want you to see the erosion at my usual spot.  The causurina is more or less in the water now and the weed is building up from all the effluent following all the rain over Summer.  Even the sand bars when they are exposed they are gaining a green distant glow -some green algae maybe?  Doesn't that mean phosphates?  The declining health of our waterways especially the Pumicestone Passage worries me.  and what do you think of my bathers?  a boob tube on top of a shiffon dress to hide my stomach plus bikini bottoms.  I should not have left my top so exposed because I got a flush of burn and I am itching there despite starting the Claratyne yesterday. 

Travelling Family and Welcome Esha

While I was trying to keep cool, B and Cohen and S are travelling by car from Dubbo where they stayed in a motel the night before.  They came back home via Toowoomba after their two weeks away in Wentworth NSW.  The car they drove was given to them as a gift from S's Nan. There they are running amok in Wentworth.  S got her hair streaked by a friend or rellie while she was there and Cohen looks just as much of a grot as ever.

It has been a long time since I have seen either of my grand children but Connor now has a little baby sister who has Paul as her father.  Her name is Esha anne and she was born on Friday March 18th at 1am after an inducement.

ESHA ANNE KIHLSTROM ♥ Born 1am Friday 18th March weighing 2740g.

Connor's new sister 

Ange says on Facebook: She is so amazing and we are completely in awe of her :) She is a good baby too, so far she is happy to sleep & feed and be cuddled and loved by everyone ♥

HAPPY ST.PATRICK'S DAY (and Happy Birthday Jan and possibly Connor's New Sister)

The Luck of the Spoonies (yes click the link)

Yep, the luck of the spoonies. Actually you should read the section on the Spoon Theory because most of us talk in terms of spoons, marbles or energy. I used mine up just getting ready to go for Thai with Jan, Mandy and Lacie for Jan's birthday. The humidity got to me today and if what is going on in my mouth is not candida (the doc looked again when I got the allied health services organised), then I do not know why my mouth is burning - mainly the tip of my tongue and upper gum at my front teeth. They are bright red considering I am pale-gummed. Nothing I have tried works on them. Even the drop of tea tree oil in water. Everything just burns. Even my cigarettes burn and sometimes it just burns by itself. Salt water rinses sting. All that aside, I was worn out by this lunch today and I even came home with the wrong vacuum cleaner bags from the vacuum shop which was next door. Actually I barely ate lunch. I brought it home in a container for a price.

Yep it has been hard to try and stay well. Despite all the supplements, I still have sore glands, the burning mouth, neck and shoulder pain that seems to cause not just migraines but pains in my ears/eyes/teeth and I am still dizzy from cutting from 6.6mg to 3.3mg of Lovan after a few days of alternating. It has been a week I think and still my body craves the higher dose. All this is pretty much torture, yet I was worse when I felt ill even when I was lying down back a few weeks. But my heart-rate is starting to creep up again for a given task. It is not right today. I need to take it easy.

Kindle and Family News

jfrizzell_98@Kindle.com means you can attach photos and documents that will get to my Kindle.  I do not know anything about it much but it is an emergency communication tool for a "small cost" to you.  I can change the email address if I like but for now I will stick with feeling like 98 years old.

Today I had phone contact with B and then later his Dad and then later S turned up to get a fan this time.  It is hot in his room.  Apparently he lives with an Asian who hardly speaks English and another person who he described as being like an "Igor".  When I asked if he was actually becoming friends with any he said he thought Igor might be the one.  But I do not think that is his real name.  I think it is S's nick name for him.   It seems they mostly go to their own rooms so maybe this sharehouse will work out.  He seemed to be in a good mood - at least he laughed at my jokes.  He was gone again pretty fast and I told him that Ange was being induced tomorrow so will probably be giving birth on March 16th or 17th.  Apparently S was allowed to take Connor to the movies and back on the weekend.

B has not been pigging yet.  He has had a cold developing the whole time he has been there so he declined yesterdays offer by Eric Sutton who is Stacey's cousin's husband.  And today they borrowed Nan's car and went to Mildura.

R says he knows the answer to loosing weight now.  Eat every 2 hours and quit most sugar.  He is hoping to be "not diabetic" because his doctor said it may well disappear if he got down to 100kg.  He wasn't aware about taking iodine to saturate your thyroid so you will not absorb the radioactive kind....so he does not know everything.  But mainly he rang up to get S's new phone number because he did buy another one.  There is no way he would go without a phone.  Neither of them.

That is Connor at home taken from Facebook.

Some of my mucking around with photos.

And here we have the least pesticide-containing foods

And finally I am thinking of Japan

CFS History

(We haven't got too far since the 1930's)

Video Featuring Phillip K. Peterson, MD Department of Medicine Grand Rounds

Doped up on Pain Killers with S moving to Maud Street and No2 family off to Wentworth

Well yes, I gave myself a double migraine moving an inner spring cot mattress into the car to see if it would fit. Still working on my mobile bed you see. It is nearly cool enough to hang about in a car again. I've just got to get the lying down part more comfortable. Need some wedges because the seat is on an angle so that you roll down into the back of the seat. I must have some energy even if it is only in 2 minute bursts.

Luckily I was dressed and moving around the kitchen looking busy when S arrived. I knew he was coming today. You see he left the Perrerrea House on Friday and knocked on my door armed with washing which has gradually been attended to over the last few days in between rain. I invited him for tea and he stayed that night but he was agitated and decided that he could not stay. He said today that he "had to get out of here" again. When he says that, it can mean that he will go immediately or he will get ready to go taking hours to do it. He made sandwiches and stuff on Saturday because he was planning on sleeping in the car at Maroochy River somewhere with a cold shower. It was a wet weekend and he went out into the rain. I could not imagine anything worse. He said he had his phone stolen last night but I do not know where he was. He was planning to go to the Coastguard on Sunday and hang around the building volunteering and Monday he was going to Nambour to see his boss. In fact, he just tells me that he might have an office there to work out of soon. But he wants to live in the hub of the Sunshine Coast which is Maroochydore so he had a place lined up to move into today and since he left his frozen food and washing here, I was expecting him to come and collect it today.

He did not stay for long. He paid me back some money and then asked to borrow it back to buy a phone but I said no. He then wanted all the old phones in the house - namely mine and his ex-phones which he gave to me. I gave him my Palm Treo last time and he denied ever taking it a month later but today he said he found it but he left it at the new place but that is not good enough for him. It is pretty close to dead but all the phones here are playing up any way. Old faithful Zte got dropped in the sea and still works but it is doing odd things at times. The other needs a new battery. But I would rather get a Kindle right now. For my birthday whether I can afford it or not. Being impulsive again.

Number 2 and family are off to Melbourne tomorrow, followed by Bendigo on the train. They will fly on Tiger from Maroochydore. They will be picked up in Bendigo on Friday to go to Mildura and I guess Wentworth.

I am in so much pain that I am going back to bed. Cranial nerves, bladder aching, stingy nose, facial nerves, aching glands, stiff neck, migraine, ..........

I Remember ME - A Documentary About ME/CFS

I Remember ME - A Documentary About ME/CFS

This documentary was made in 2000 by Kim Snyder.

 Part 1



Part 2



Part 3

Part 4

Part 5


Part 6


Part 7


Part 8