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JANUARY 2024
Tues 31st January 2024
10am
- blood pressure readings : 151/95/96 - 148/94/93
Acute awareness of all ongoing health and well being re my MOBILITY and MOTIVITY. Coming up is a ‘momentus’ move on my part to test my body further as I drop the Prednisiolone over the next few weeks to ZERO; tackle my breathing AND gastric issues that ARE problematic and continue to be a nuisance; enough to affect my MOBILITY and MOTIVITY.
Chest wheeze, some tightness, irritated swallowing creating an itch in the back of my throat inducing coughing! NOT good.. Some shortness of breath about medium NOT totally debilitating BUT !
Cognitive functions OK. Urinalyis OK. Diuresis / Bowels OK Blood Glucose 6.2mmol/l
Food and liquid intake OK. Improved skin etc rehydration !! Swelling Left calf area REDUCED.
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Mon 29th January 2024
8am
- blood pressure readings : 153/87/106 - 154/88/106
Definite wheeze persists. Coughing remains a nuisance. Doping with antacids seems to have some efect in reducing the constant gasdtro intestinal dicomfort. It is definitely going to take some time to restore the damaged tissue etc. At least I have determined the core area that has to be addressed rather than stumbling around in the dark!
Am now on a reducing PREDNISILONE amount over the next THREE weeks :
From 3 tabs 15mgs per day to 2 tabs 10mgs per day to 1 tab per day.
Finally NONE re the PREDNISILONE. Let’s see how things progress .. IF my CK levels are NOT an issue then I don’t need the Prednisilone ?? Thus I also won’t need to take the METHOTREXATE... my Auto Immune system is seriously problematic... except of course... the FACT that it is not just muscle MYOPATHY / NEURALGIA but NECROSIS taking place ??? The overall NUMBNESS has increased LOWER regions up to 50% UPPER regions... 40 - 50%
Have they continued to do ongoing tests re this?? NO... For some fighting to preserve THEIR VERSION OF ... is hard enough when my symptoms, test results and ??? keep proving me right and them WRONG??
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Sat 27th January 2024 Glucose 5.7mmol /l
Definite wheeze persists. Coughing remains a nuisance. Doping with antacids seems to have some efect in reducing the constant gasdtro intestinal dicomfort. It is definitely going to take some time to restore the damaged tissue etc. At least I have determined the core area that has to be addressed rather than stumbling around in the dark!
Am now on a reducing PREDNISILONE amount over the next TWO weeks :
From 3 tabs 15mgs per day to 2 tabs 10mgs per day to 1 tab per day.
8am
- blood pressure readings : 170/94/105 - 172/94/107
5am
Thur 25th January 2024
Latest updates: Proving once again how tests, test results and follow up et are NOT guaranteed. In some instances ?? Negligent?
Lets take TWO to prove a point.
Former chest x-ray in Oct 2023
Suggested follow up in 6 weeks due to ‘new minor
Atelectasis at R Lung base.’
Patient NOT MADEaware of this result. 6 week follow up? NO.
Latest X-ray result Jan 15th 2024 showing Atelectasis at R Lung base.
eGFR result Sept 2023 56.3
Latest results 15th Jan 2024 eGFR result 56.3
eGFR stands for estimated Glomerular Filtration Rate. eGFR is calculated from blood test results using a formula that looks at the level of creatinine (a waste product) in your blood. Results consistently below 60mL/min/1.73m2 indicate chronic kidney disease.
BLOOD PRESSURE READINGS : I am NOT happy re these readings they are TOO LOW!! Am I right??? Underlying issues that are NOT good for me?
115/73/108 - 115/75/109 - 116/75/107
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Wed 24th January 2024
Coughing remains a nuisance. Doping with antacids seems to have some efect in reducing the constant gasdtro intestinal dicomfort. It is definitely going to take some time to restore the damaged tissue etc. At least I have determined the core area that has to be addressed rather than stumbling around in the dark!
blood pressure readings : 125/70/94 - 125/70/93 - 113/67/96
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Tues 23rd January 2024
The fight continues.. with the realisation, of the origins of that ‘death rattle’ becoming more transparent. Chest Xray (15th Jan 2024) is a ‘red herring’. The real and somewhat nuisance issue is to be found with the GASTRO INTESTINAL TRACT... YES! The (oesophagitis) or oesophageal ulcer.. Oesophageal varices When you are trying to rest and that ‘rattle’ continues to be all out pervasive, in short driving you up the wall is torture ... I have now dscovered that those who think treating the BREATHING issues is the answer??? WRONG!
You have to dope the Oesophageal varices.. ANTACID flooding .. YES you will still have the annoying ‘rattle’ BUT that will gradually ease back... REMEMBER it is NOT the TRACHEA but the OESOPHAGUS !!! that is delivering that ‘death rattle’.
Its like having a skin flap loosely flapping around within the OESOPHAGUS ! You may cough up some flem etc but if you continue to ‘dope’ it ?? We shall see how things progress. You have to TARGET the real problem and NOT get side tracked into thinking it is BREATHING issues...
- blood pressure readings : 137/80/86 - 133/88/90 - 133/77/95
Sun 21st January 2024
Doxycyline 100mgs (*Anti biotic capsule - anti bacterial..) ????
I WOULD NOT wish this drug and what followed re the damage it did to my health and well being, on my worst enemy. FACT.
Stomach upset, indigestion, tummy (abdominal) pain
Diarrhoea urinary incontinence..
Dry mouth, throat irritation, difficulty or pain when you swallow, acid reflux,
inflamed food pipe (oesophagitis) or oesophageal ulcer
Bruising or bleeding Nausea and vomiting –
It left my hands with DERMAL raised weeping PUSTULES; severe DEHYDRATION. Killed my appetite to a seriously impacted level where eating became a major problem.
That ‘death rattle’ back with a vengeance : howl and growl / wheeze, with an almost constant coughing that has been almost impossible to stop.
The most terrifying was yet to unfold..
On the 4th dose I woke up during the early hours of the morning and could hardly stand, ie rising from the seat to standing posiion, uncontrollable urinary incontinence with it tricking down my legs, soaking the clothing I was wearing whilst I struggled to the toilet to sort myself out.. that left me AFTERWARDS feeling nauseated and almost vomitting spontaneously with the retching not helping me whilst I attempted to sort myself out ie with fresh clothing and !
Immediate STOP on taking that drug.
Its taken over 3 days to get back some normality BUT the damage it has done is clearly visible AND savage to the extreme. I’ve taken pics and will upload them later to illustrate how bad the after effects of this It going to take me weeks to recover from the damage this has caused/ left in its wake. Like a wrecking ball...
I WOULD NOT wish this drug and what followed re the damage it did to my health and well being, on my worst enemy. FACT.
12.10pm blood pressure readings : 138/84/94 - 139/85/99 - 144/90/111
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Wed 17th January 2024
12 mid day :
NOT feeling at all good... Coughing and chest tightness with my almost RAW throat?
Am going to try an experiment !!
Doxycyline 100mgs (*Anti biotic capsule - anti bacterial..)
1st dose NOW (stat) 2nd DOSE tonight at 12pm (midnight) followed by
Doxycyline 100mgs at 12 mid day. daily dose for 6 more days
Meds etc CLICK HERE
If I put my fingers next to the epiglottis/throat and push into the upper jaw etc that area is NOT good... ie THYROID??? Endocrine issues??
I am taking l
Levythyroxine 25mgs OR 50mgs (alternate daily dose)
Eyes are NOT good... poor visual acuity... will do a
blood glucose test..
12.10pm : 6.9mmol /l (NOTE cereal with sugar etc at 7am ) I am NOT insulin resistant!!
COUGH suppressant et with Dextromethorphan Hydrobromide. Dual action ‘dry cough’ med with some limited success.. MAY AFFECT THE BLOOD PRESSURE READINGS..
7AM : Ramiprill 5mg / Doxazosin 2mgs
12.10pm blood pressure readings : 150/92/93 - 147/87/92 - 133/86/96
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Sars antigen test.. NEGATIVE
Sjögren's syndrome MORE here throat remains affected by this. FACT. This is ongoing and NOT intermittent ! I suspect it may also be a reason directly or indirectly, for my sinus issues.
Sinuses are playing up with more tightness AND slightly restricted airway ...
Acid reflux IS I suspect also contributing to the ongoing despite using antacids etc ..
Throat itching, causing me to cough. Deep, quite penetrating DRY cough; most unplesant and difficult to resolve. The dryness AND ITCH leaves the throat almost RAW.. which in itself is another nuisance issue to deal with. TEMPORARY soothing ie with lozenges etc OR cough medicines work BUT only short term ! Obviously I can’t dope myself to the point of OVERDOSING on the meds etc
At NIGHT I am using the
I HAD managed to reduce the after effects of the howl and growl from the ongoing ‘death rattle’ BUT I am currently it seems plagued by its return; moreso re the actual persistent COUGHING with DEEP PENETRATING RIB CAGE RATTLE and HOWL.
Chest wise.. getting worse re its destruction in progress... tightness, difficulty in breathing.. painful intercostal ribs AND rib cage made much much worse when coughing! Some sputum now being generated.
LOWER limbs.. both L and R legs are swollen AND overall something going on beneath the surface re muscle and ?? A very apparent hardness of muscles in certain areas? Probable tighness with muscle and tissue damage.
The ‘lesion’ area AND the surrounding tissue is a FACT... due to Dermotomyositis AND that is now spreading upwards below the ‘belly button’ in a ring of small pustules.. A real nightmare NOT to scratch them !! I’ll have to start using the cream on them.
My overall condition... has me doing a Sars antigen test.. NEGATIVE as my body temperature is about 96f...FH - Under the tongue is 95.7f !!! Throat itching, causing me to cough. Deep, quite penetrating DRY cough; most unplesant and difficult to resolve.
Lymph nodes: I have some lumps etc swollen - note ‘reactive’ which is what I suspected given the ongoing issues health and well being wise.. being compromised.
Wed 17th January 2024
BLOOD pressure was NOT good this AM!!! Early morning 3am :
blood pressure readings : 187/107/89 - 186/104/95
Readings taken at the hospital (assessment) were also of similar readings.
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- Tues 16th January 2024
10pm readings : (Home)
- blood pressure readings : 165/102/85 - 174/85/90
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Mon 15th January 2024
Appointment with Rhehumatology consultant for assessment.
Bloods taken (on the basis that I would NOT agree to taking METHOTREXATE without up to date blood test results! The last ones being taken in OCTOBER 2023 and today being the 15th JANUARY 2024)
Chest xray as the tightness and wheeze still remain an issue.
Left leg re the calf area / thigh is still markedly SWOLLEN. Ankle is red with some marked discoloration present.
Mobility is limited BUT I am still managing without the necessity of extra walking / mobility aids etc. MOSTLY due to those helping me with ongoing help / hints / proven physical fitness improvements to build up body strength. I am determined NOT to let them down re this and some NEWS coming up re getting other professionals involved in helping me further this.
BLOOD pressure was NOT good this AM!!! Early morning 7am :
blood pressure readings : 208/113/104 - 207/108/107
Readings taken at the hospital (assessment) were also of similar readings.
2pm readings : (Home)
- blood pressure readings : 173/86/107 - 178/97/107
Overall that numbness is continuing to plague me plus neural networks are definitely compromised and worsening re lower and now UPPER limbs.
I’m convinced that the reason I am not experiencing the crippling pain re my lower back / spine is due to the nerve axions etc being heavily compromised.
Real concern is the FACT that I am getting hardly any real discomfort there at all now.. !
What is happening re the internal organs and ?? I still have some discomfort re my lower back : kidney pain? BUT the pain is nominal HOWEVER if the pain threshold is being trashed and I am getting a nominal amount of pain that is not reprsentative of the actual pain level??
ON the cards future wise...
Lumbar puncture and bone marrow investigation.. plus genetic exploration. NOT NHS This is to do with some private research going on. I did have an older brother and sister die from Huntington's disease ( a condition that stops parts of the brain working properly over time. It's passed on (inherited) from a person's parents. It gets gradually worse over time and is terminal ie NO known cure. I do NOT have that disease!
Might mean some new drug trial.
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Health and well being.... click here
It never ceases to annoy me re correspondence from my GP? regarding blood testing
(which I should add - THE LAST TEST carried out in OCTOBER 2023
QUOTE unquote... ‘Please can you contact the surgery ... to arrange a METHOTREXATE blood test...’ (09 Jan 2024)
The number of times I HAVE made clear that I am SINCE SEPT 2023 NO LONGER taking METHOTREXATE makes their requests symbolic of why I have realised just how bad ( they are NOT alone re this ) they are in reviewing my current health and well being including my medications, treatments, assessments etc?? are clearly NOT (despite my previous correspondence to the contrary) appraised of the FACTS. see HERE
UPDATE on the GP situation. OH yes it gets even better.. I get a phone call in the evening: TODAY (15th Jan 2024) Would like for me to attend the surgery so they can take bloods... NOTE BLOODS ... I DID inform them of my appointment at the hospital today over a WEEK ago and today I had bloods taken.. on behalf of my consultants request... SO ?Why could the surgery NOT have included their blood requests with that???
Oh and clearly NOT urgent on their part as the blood testing at the Surgery would have been in FEBRUARY! Lets NOT forget that their last tests were carried out at the hospital in OCTOBER! 2023
I’m recording ALL telephone conversations.
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Sun 14th January 2024
Problems with acid reflux on an increasing basis ... am carefully monitoring this.
Using Gaviscon to help me reduce some of this.
Chronic fatigue is also a another continuing nuisance. Other issues remain in the mix and are to be found HERE .
Chest wheeze with some tightness of the chest ie thoracic cavity / intercostal ribs and ! remains problematic. I’ve continued to keep the ‘death rattle’ reduced BUT it remains in the shadows AND at times can come to the fore to howl and growl.
Hands are swollen with some dehydration of the tissue.
Tachcycardia has to be carefully observed and necessary action taken to reduce its effects. The ever present increased risks of heart failure beit MYOCARDIA or CONGESTIVE heart failure IS a FACTor that cannor be dismissed lightly.
I’m having to monitor the changes taking place health and well being wise especiatlly re the digestive system affecting the bowel AND bladder etc?? Oncoming incontinence?
The muscles / tissue and NEURALGIA with increasing destruction of the nerve axions etc is having a noticeable effect on them and that means increased numbness of the areas affected ! LOWER body 50%plus... UPPER body 50-40% and increasing.
10am Sun 14th January 2024
blood pressure readings : 148/74/106 - 146/77/109
5am Sun 14th January 2024
blood pressure readings : 177/98/90 - 172/100/92
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Wed 10th January 2024
Problems with acid reflux on an increasing basis ... am carefully monitoring this.
Using Gaviscon to help me reduce some of this.
Chronic fatigue is also a another continuing nuisance. Other issues remain in the mix and are to be found HERE .
5pm Wed 10th January 2024
blood pressure readings : 170/99/100 - 172/97/101
5am Wed 10th January 2024
blood pressure readings : 181/102/97 - 186/101/98
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Sun 7th January 2024 Sun 7th January 2024
8am Sun 7th January 2024
blood pressure readings : 150/88/109 - 153/85/109
5am Sun 7th January 2024
blood pressure readings : 170/86/120 - 166/80/124 - 158/97/103
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Sunday 31st Dec 2023
10pm Monday 1st January 2024
blood pressure readings : 167/99/101 - 169/102/104
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Wed 3rd January 2024
Sars antigen test NEGATIVE
Problems re the extreme CHRONIC FATIGUE.
To the level now, where I am fighting at times, to stay awake. More frequently and prolonged.
Check out the overall up to date situation re my health and well being etc HERE
Monday 1st January 2024
8am Monday 1st January 2024
blood pressure readings : 182/109/91 - 184/103/91
5am Monday 1st January 2024
blood pressure readings : 195/110/94 - 195/107/98
More coming up... latest re health and well being plus!
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