Before I get into the latest development in feeling fluey so much this year I want you to have a look at this write up by a doctor with ME/CFS
http://mdwme.blogspot.com.tr/2013/04/dr-paul-cheneys-latest-observations.html
It all sounds very familiar.
I went to Dr Georgious with a lingering cough and he me cough once so along with the "pain" investigations he ordered, he threw in a chest x-ray. Smart cookie he was.
I already had a low-grade fever and felt like it too with all the temperature dysregulation but I knew Dr Jo would not consider a temperature of 37.2 a fever so I made up my mind to go elsewhere for antibiotics after my appointment with Dr Craig was cancelled and I was slotted in with Dr Jo the next day too late in the afternoon. I was feeling rotten. My rib cage was sore and that sends pains off anywhere and I have not been able to wear a bra again because of me being so sensitive the pressure just from a sports bra. A sports bra means no underwire, no metal and they are safe to wear in a nuclear scan if you want to avoid having to change into a gown. That would come in handy.
I booked online at Health Engine for Jan's doctor but in the meantime I had scans, blood tests and x-rays to get done. I had a nuclear bone scan looking for reasons for pain from head to toe. You can take that either way you read it. I had the chest x-ray at the same place (QDI) who were agents for Northcoast Nuclear Medicine where I got the bone scan. The nuclear bone scan required a radioactive tracer so I got that inserted into the same vein you would use for a blood test. Didn't hurt. Didn't feel any different after it. It took a while, quite a few series including separate ones for hands and feet, head and body/spine. Then I had to go away and come back 2 hours later for the repeat series.
However, before I went in for the nuclear bone scan they let me squeeze in the plain chest x-ray because apparently you can't have a plain chest x-ray after you'be been given a radioactive tracer. And you are radioactive for 24 hours so it was suggested that I did not let Milo sleep on my bed that night. She was fine in the play pen. I probably missed her more than the other way around but I was prepared for a bit of a whinge. Didn't get it.
The good part was that if I did not pick up the chest x-ray until after the second series of scans, enough time would have gone by for me to take the report as well. I like getting these things in my hand because Dr Jo says she will give me a copy and then never does. Dr Craig always does if I remember to ask. Dr Georgious just hands them over automatically like Dr Andrew did (7/20 doctors join him in Lyme retirement btw). She failed to send them to the printer again today and I did not let it slide this time. I asked for them at the desk to be available for me to pick up tomorrow. For a start I can't remember everything she said and she glosses over things far too easily - like using the words "a touch of emphysema" to be expected because of my smoking and then to be forgotten about like everything else. She didn't even ask about my diabetes. She wanted to know if I got all dressed up with flashing jewellery for Christmas after I told her I dyed my hair red for Christmas after she told me she had noticed a change. All very friendly but I left there today missing a lot of information. I had wanted to hear about the blood tests from Dr Georgious with the ANA and MS stuff on it even if she could not get the most recent ones done at the new doctor I went to down town.
So I booked to see Dr Gray the day before yesterday but it turned out to be Dr Ravi because Dr Gray was away. I had seen Dr Gray once before and he was most interested to look over my Lyme stuff which I took back the next day for them to scan there. I really wanted to get back there before now but I've been so energy less and more concerned about pain relief than treating Borreliosis. I've spent most of my time at home or just ducking out to the shops and I felt like I needed to protect myself from using too much energy so as to avoid relapse down from this my new "normal for me". Normal since the whole body vibration machine saga. Before that normal for me did not involve quite so much pain. I could blame coming off Effexor for that but I am not sure if it is the longest relapse that I have ever had either but if it was the noradrenaline reuptake side of Effexor that helped with pain more than an SSRI like I'm taking now then I have some hope for the new drug the pain doctor prescribed. Trapentadol. Dr Jo wrote the script out today. Not taking them today either because tomorrow morning I have to finish spitting in jars for QML and take Milo to be spayed at Animals At Pelican as the vet is called at the Pelican Waters Shopping Centre. I don't want to risk one of its side effects, drowsiness, tomorrow morning of all days. I'm pretty keyed up about it and will be glad to see Milo alive and well tomorrow afternoon.
I have gotten myself pretty wired with all these scans and other tests and I have marvelled at the amount of energy I seem to have despite having a fever and pain so badly that even my eye sockets are making holding my eyes open hard because of pain just moving my eyeball. But pain and low-grade fever along with chest and shin pain which I have are also symptoms of Bartonella and Dr Ravi said it can get in your lungs when I asked so I suggested he added Bartonella Henslea to the pathology form and he did. It is the only one they test for via Australian Medicare and the test is notorious for being insensitive. The bug is known more commonly as Cat Scratch Fever and there are many in the Lyme world who believe it too can be chronic yet not provoking an anti-body response just like so many others that seem to occur in immune-suppressed individuals including AIDS patients. Another common Bartonella species is Trench Fever and I am sure there are newly discovered ones just as there are with the Borrelia genus.
I've been so slow at writing this I have already forgotten what I have written so I give up finishing this post tonight.
UPDATE: They found a nodule on my lung via HR CT scan. They left it there for re-evaluation. Still having lung symptoms in May 2016. Hearing services lady said I had fluid behind my ear drum and advised drying it up in March. I have tried antihistamine, pseudoephidrine and NeilMed Sinus Rinses. In April the optician said the eye pain was due to my sinuses being chronically infected because your eyes are in your sinuses. He recommended Rhinocort and it seems to have worked not only on the eye pain but also the lung wheezes and throat squeaks in May. Dr Jo earlier on had suggested I might have asthma but did not tell me to do anything about it apart from a single course of amoxillin after I was complaining about feeling feverish with a temp of only 37.9 max. Cortisone might be my answer then because the antibiotics did not work.
Showing posts with label mycoplasma. Show all posts
Showing posts with label mycoplasma. Show all posts
Friday, February 19, 2016
Sunday, September 30, 2012
Over-active thyroid, Under-active adrenals
The title is a summary of some of my test results that were discussed on Friday with Doctor Andrew. My appointment with him was for 1:30 and I got in at 5:30. I'm not going to talk about that except to mention that they say there is no gain without pain and I don't think it should have to be like that!
My friend did not come with me this time because she was being a friend to the family who was a victim of a home invasion.
The test results
All tests related to blood cells, liver function and cancers were negative. Iron and B12 levels were normal so I've been doing OK in that regard for at least a year now.
Kidney function (including glucose and electrolytes) he remarked as being fine but Creatinine was low at 38 umol/L (should be 50-120).
ANA (Antinuclear Antibody) test showed a low titre of 160 (normal < 80) in an observed "speckled" pattern. I have had a positive to this in the past as well. It is a non-specific marker for Lupus but the other markers I had tested (P-ANCA and C-ANCA) were negative. It is getting retested in the next batch of blood tests.
Serum cortisol was low at 8:40am 170 nmol/L instead of between 220-660. It indicates low adrenal function so my adrenals will be getting an ultrasound. However, the short synacthen test I had earlier this year supposedly indicated that I did not have Addison's disease. Serum cortisol will be retested via blood test too. Doc wrote next to the results "natural cortisone" so he does not prescribe steroids at least not at this stage because they can turn Lyme bugs into super bugs which I am sure is a very simplistic explanation on my part.
TSH (Thyroid stimulating Hormone) was low at .05 (normal 0.40-4.00) and is consistent with hyperthyroidism. This may be associated with:
The only pathogen that showed up was Mycoplasma pneumoniae (a positive IgG) which I already knew I had in the past. It can be a Lyme disease co-infection but as far as I understand it is quite common as a disease in it's own right - "walking pneumonia". It is not enough evidence for Dr Andrew to put me on his antibiotic protocol so he is insisting I borrow the money to get the PCR for Borrelia test done. He suggested my children as a source of funds. Isn't that a joke? At any rate, it is going to take some time for me to get it organised so I do not have another appointment for 6 weeks. We are hoping I can get someone down this way to draw the blood etc. I have to ring Australian Biologics to find out what to do and order the test kit and it is the Queen's Birthday (again) tomorrow so it will have to wait until Tuesday. Yes, I intend to bung it on my credit card and go ahead. I have not got time to go through the procedure to get out some Super.
Having said that I need a positive to Borrelia to be treated, people with negative test results to Borrelia are being treated and improving but it is likely to cause problems for the Australian doctor because it is an unconventional treatment not without risks. I gather my doctor is already under scrutiny. He is one of the few who are prepared to stick their necks out for their patients or their beliefs. As an aside I see that Dr Sarah Myhill is being taken to court again and in cases like that, it is the patients that come to defend their doctors. I have known for years that my local doctor Jo always did everything exactly by the book. It is a shame there is no book for ME/CFS. She has no idea.
I think it was the test marked food RAST on the pathology request form that was labelled "Allergic Disease Investigation" on the pathology report. I had a low reaction to one food group mix so it is impossible to tell what would be causing the reaction without further testing. You can make some deductions.
Total IgE was 56 kU/L within the normal range
Allergen specific IgE:
Nut mix
(Peanut, Almond, Coconut, Hazelnut and Brazil nut) was negative
Seafood mix
(cod, shrimp, tuna, salmon and blue mussel) was negative
Tropical Fruit Mix
(Peach, Kiwi fruit, rockmelon, banana and pineapple) was negative
Food mix
(Egg white, Milk, Wheat, Soya bean, peanut and cod) was a low positive (class 1)
Dr Andrew has marked this for further testing (extended RAST and ISAC suggested on pathology results form) but it is not included on my next list of blood tests. Either he forgot or knew that it could not be bulk-billed. It looks like I will need to be paying for something else but it can wait which is what I assume he is thinking.
My new pathology request form now includes:
TSH, ANA, fT3, fT4, TRABs and cortisol which can all be bulk-billed
I am resting and poking about and more comfortable than last week but since doctor day I have had really blurry eyes and have gone hoarse after talking on the phone (to Rob at one stage who is all exited because his son is giving him some money to by land or a house in Cracow if he can find one cheap enough) and the morning pain and loose motions continue along with the generalized aches and other stupid little things. I'd be happy if we could live without having to eat because it would save me from a lot of gut problems. I sort of wish Karla was right when she says that we will be living on air and light when the earth enters the fifth or is it sixth dimension - as we become less dense she says.
My friend did not come with me this time because she was being a friend to the family who was a victim of a home invasion.
The test results
All tests related to blood cells, liver function and cancers were negative. Iron and B12 levels were normal so I've been doing OK in that regard for at least a year now.
Kidney function (including glucose and electrolytes) he remarked as being fine but Creatinine was low at 38 umol/L (should be 50-120).
ANA (Antinuclear Antibody) test showed a low titre of 160 (normal < 80) in an observed "speckled" pattern. I have had a positive to this in the past as well. It is a non-specific marker for Lupus but the other markers I had tested (P-ANCA and C-ANCA) were negative. It is getting retested in the next batch of blood tests.
Serum cortisol was low at 8:40am 170 nmol/L instead of between 220-660. It indicates low adrenal function so my adrenals will be getting an ultrasound. However, the short synacthen test I had earlier this year supposedly indicated that I did not have Addison's disease. Serum cortisol will be retested via blood test too. Doc wrote next to the results "natural cortisone" so he does not prescribe steroids at least not at this stage because they can turn Lyme bugs into super bugs which I am sure is a very simplistic explanation on my part.
TSH (Thyroid stimulating Hormone) was low at .05 (normal 0.40-4.00) and is consistent with hyperthyroidism. This may be associated with:
- a Thyroiditis (Grave's, Hashimoto's, Subacute)
- autonomously active Thyroid Tissue
- relative T3 overproduction, or
- severe intercurrent illness, "Sick Euthroid" state
- hypopituitarism (rare)
The only pathogen that showed up was Mycoplasma pneumoniae (a positive IgG) which I already knew I had in the past. It can be a Lyme disease co-infection but as far as I understand it is quite common as a disease in it's own right - "walking pneumonia". It is not enough evidence for Dr Andrew to put me on his antibiotic protocol so he is insisting I borrow the money to get the PCR for Borrelia test done. He suggested my children as a source of funds. Isn't that a joke? At any rate, it is going to take some time for me to get it organised so I do not have another appointment for 6 weeks. We are hoping I can get someone down this way to draw the blood etc. I have to ring Australian Biologics to find out what to do and order the test kit and it is the Queen's Birthday (again) tomorrow so it will have to wait until Tuesday. Yes, I intend to bung it on my credit card and go ahead. I have not got time to go through the procedure to get out some Super.
Having said that I need a positive to Borrelia to be treated, people with negative test results to Borrelia are being treated and improving but it is likely to cause problems for the Australian doctor because it is an unconventional treatment not without risks. I gather my doctor is already under scrutiny. He is one of the few who are prepared to stick their necks out for their patients or their beliefs. As an aside I see that Dr Sarah Myhill is being taken to court again and in cases like that, it is the patients that come to defend their doctors. I have known for years that my local doctor Jo always did everything exactly by the book. It is a shame there is no book for ME/CFS. She has no idea.
I think it was the test marked food RAST on the pathology request form that was labelled "Allergic Disease Investigation" on the pathology report. I had a low reaction to one food group mix so it is impossible to tell what would be causing the reaction without further testing. You can make some deductions.
Total IgE was 56 kU/L within the normal range
Allergen specific IgE:
Nut mix
(Peanut, Almond, Coconut, Hazelnut and Brazil nut) was negative
Seafood mix
(cod, shrimp, tuna, salmon and blue mussel) was negative
Tropical Fruit Mix
(Peach, Kiwi fruit, rockmelon, banana and pineapple) was negative
Food mix
(Egg white, Milk, Wheat, Soya bean, peanut and cod) was a low positive (class 1)
Dr Andrew has marked this for further testing (extended RAST and ISAC suggested on pathology results form) but it is not included on my next list of blood tests. Either he forgot or knew that it could not be bulk-billed. It looks like I will need to be paying for something else but it can wait which is what I assume he is thinking.
My new pathology request form now includes:
TSH, ANA, fT3, fT4, TRABs and cortisol which can all be bulk-billed
I am resting and poking about and more comfortable than last week but since doctor day I have had really blurry eyes and have gone hoarse after talking on the phone (to Rob at one stage who is all exited because his son is giving him some money to by land or a house in Cracow if he can find one cheap enough) and the morning pain and loose motions continue along with the generalized aches and other stupid little things. I'd be happy if we could live without having to eat because it would save me from a lot of gut problems. I sort of wish Karla was right when she says that we will be living on air and light when the earth enters the fifth or is it sixth dimension - as we become less dense she says.
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| Main Street Cracow as I saw it in 2007 |
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