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:

• a Thyroiditis (Grave's, Hashimoto's, Subacute)
• autonomously active Thyroid Tissue
• relative T3 overproduction, or
• severe intercurrent illness, "Sick Euthroid" state
• hypopituitarism (rare)

Dr Andrew said Thyroiditis and specifically mentioned Grave's disease but it will be retested with more detail and I will be having an ultrasound of my thyroid gland.  I know that the last time I had a TSH it was within the normal range but I often have unexplained bouts of anxiety and racing heart is worse sometimes.  It can explain diarrhea too and I still have loose bowels.  They are worse again today because I have cut back on the pain killers I was needing for the aches and pains so I am not benefiting from their binding-up side effect.

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.

Main Street Cracow as I saw it in 2007

ME Research UK — Search for the aetiology of ME/CFS. Development of a rational diagnostic system based on microbiological biomarkers

ME Research UK — Search for the aetiology of ME/CFS. Development of a rational diagnostic system based on microbiological biomarkers

If what I have got right now isn't a bug I'll eat my hat.  Stiff joints, aching, feverish, sharp pain like light bulbs going off all over my body in turn in concert with the four foot wide glands and too much to list.  Gut stuff still but this morning was the best so far this episode.  Notice that Borrelia (Lyme) is in the list in the link above.

Gastrointestinal Lyme?

 I have terrible gut pains and  intense fluey aches and it followed on from the relapse I was already having after that day trip to Noosaville to see the new doctor.  I am having trouble stopping myself from feeling very sorry for myself and I cried when Jan called in yesterday.  It is all too much.  She was nice enough to do the dishes for me.  I have no idea if it is just everything hitting me at once or whether I caught something at the doctors.  But I have had it all before so many darn times for so many darn decades.  It is just strange that now that the gut and muscular-skeletel stuff with joints has kicked in that the upright racing heart stuff has eased off and if I wasn't sick as in ill, I would probably be able to go for a walk.  It is all so inconsistent and cyclic and disabling.  The worst part is that I can't get enough pain relief with what I've got in the house.  I guess that is not a new story either.  My body feels like a ball of pain extending three feet out from me in some sort of aura-like way.  My neck glands bulge out four feet in my imagination - but you can actually feel it, that is the funny thing - pain that goes beyond your self. 

I don't know what to think about a low-starch diet now that I have got all these gut problems back.  I am thinking today that I may as well forget it and it doesn't matter what I eat I will always have problems.  Nah, it probably has helped and this is just a stupid manifestation of my autonomic nervous system or the life cycle of some bug.  I've also been trying to blame coconut products but today I am just as bad after not having any oil yesterday.  After all the intense spasms are over, then the constant pain that remains is bad enough on its own and I have had this for three days so far.  The intense mornings.  The only good thing about it is that at times like this I can take opiates or Tramadol and not have to worry about causing a back up from slowing down intestinal motility.  I am also taking paracetamol and I have not had Colofac in the house for years and it has never been offered to me since moving to the Coast here.  It's annoying that pain relief has gone out of fashion.

Anyway I was reading that Lyme can cause gastrointestinal problems and they simply call it Gastrointestinal Lyme as apposed to neurological Lyme I guess, although if you read the article it suggests a neurological mechanism is possible. Anyway here is an excerpt:

Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians. Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms—along with numerous other pathogens also contained in tick saliva—influences health and vitality of the gastrointestinal tract from oral cavity to anus. Disruptions caused by GI borreliosis (Lyme) may include, amongst many others, distortions of taste, failure of other neural functions that supply the entire GI tract—paralysis or partial paralysis of the tongue, gag reflex, esophagus, stomach and nearby organs, small and/or large intestines ("ileus"), bowel pseudo-obstruction, intestinal spasms, excitability of gut muscles, inflammation of lumen lining tissues, spirochetal hepatitis, possibly cholecystitis, dysbiosis, jejunal or ileal incompetence with resultant small intestine bacterial overgrowth (SIBO), megacolon, encopresis and rectal muscle cramping (proctalgia fugax).

In cerebral hypothalamic and pituitary centers, usual sites of borrelial disruptions of the brain's normal hormonal cascades, there are strong influences on human attitudes, ideation, and behavior relating to gastronomic issues. Newly discovered Lyme endangered cerebral hormones and renegade cytokines regulate brain-gut interactions thus initiating behavioral tendencies such as anorexia or a failure of satiety with resultant obesity.

Ticks and other vectors of Lyme disease attract their own infections from many microbes, some known and some unknown (viruses, amoebas, bacteria, and possibly parasitic filaria), which they then also can pass on to humans. The GI tract is especially vulnerable to machinations of such co-infections as bartonellosis, mycoplasmosis, human anaplasmosis (HA), and human monocytic ehrlichiosis (HME). Syndromes exactly similar to Irritable Bowel Syndrome (IBS), Crohn's Disease, and cholecystitis, for example, may not have readily suggested a borrelial etiology to the diagnostician but Lyme increasingly is known to be a potential contributor to each.

All known Lyme-gut syndromes are treated by combining several effective antimicrobials (including use of azole medications with specific antibiotics) with agents that boost gut lining repairs and overall immunity enhancement. Azole medications are borreliacidal (against the anti-Bb spirochetal cyst form) medications such as metronidazole (Flagyl). Needed GI healing agents may include gut stimulants or relaxants, Ph agents, bile salts, nutriceuticals, immunity-enhancers, neurotoxin absorbents, and sterilizers of gut-specific microbes.

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I hope S is having a better day than I am for his birthday.  Caught him online but not real time.  I see you posted too Zena.  Thanks.

My online Big W aah bra's arrived and are too small and I am not well enough to deal with it.

Sarcoidosis and Lyme: For Your Information Zena

THIS POST HAS BEEN UPDATED

I assume having a pulmonary sarcoid is the same as sarcoidosis?  That is why I thought of you.  It appears that some people who have been diagnosed with Sarcoidosis possibly have Lyme disease. In Australia Lyme Disease is not a truly recognised disease although many of us know it exists so please take a moment to visit this website.

If you are interested in getting tested, you will need a referral but the lab testing here in Australia that I have been referred to is Australian Biologics if you want to Google it.  It will cost $450. Borrelia PCR - urine/whole blood is the name of the test.

I just read that "The Lyme PCR Test is the gold standard for Lyme disease testing accuracy
The PCR test is not well known but very accurate. The Polymerase Chain Reaction (PCR) test confirms that Lyme bacteria are present in the body. The PCR test is relatively new. It is designed to confirm that Lyme bacteria DNA are present. A positive PCR test almost always guarantees that a patient has Lyme disease, if the laboratory work has bee performed properly. Dr. Braccia observes, "A negative PCR doesn't prove a patient doesn’t’ have Lyme however there are PCR strategies that assist in the test confirmation. Another factor that must be taken into consideration is do the fact that PCR test results often vary depending upon which lab performs the test. Therefore it’s important for the physician to use a lab that is accurate in their analysis. " Reference: http://www.prweb.com/releases/2010/02/prweb3542194.htm

However, Australian Biologics is not an approved lab as far as I understand.  Getting a positive diagnosis seems less than 50/50 from the bits of local (Australian Facebook) information I can glean.  A negative here usually means that the diagnosis is not confirmed rather than a definate no to the Borrelia borer (my nick name for spirochete).  So most seem to then go for the overseas, supposedly more reliable test at $3000 which I think throws in a few other common co-infection tests.  I am starting to understand that the type of co-infection profoundly effects the types of symptoms manifested so Lyme disease seems to have sub types.  Not everyone has the neurological Lyme so commonly seen on TV.  I might not be very accurate describing this.  There are others who know so much about it but at the same time some information getting around is not altogether accurate either.  For instance you don't have to have Herx symptoms after treatment and the online community seems to welcome feeling worse before feeling better at least for the sake of hope.  Anyway I read somewhere today that it is a bit of a myth but also that herxing is quite possible.

As far as the lab not being accredited, I am not sure that it is such a bad thing.  I have heard bad things about one that is and given the politics behind the suppression of Lyme in Australia (which I do not understand) perhaps having Government approval is not an indication of accurate testing.  I wouldn't really know.  If we need to we will learn as we go.

One online friend had both the AB lab test and the IGENEX test in the USA and got a positive on both so that she said the top dollar one was a waste of money for her.

I will get around to doing the AB test after I dig up the money. 



 

Hugs and Tears

https://www.facebook.com/photo.php?fbid=481287391889150&set=a.364783263539564.92440.363333707017853&type=1&theater

Car Wash

S is Washing Cars by hand and has been for a week part time.  He really does not like it. In reference to the "orange people" he just said on Facebook that everything is OK.  So hopefully he will not be moving again (yet).  I hope you remember it is his birthday next Wednesday.  He needs text books for the new semester which he has obviously decided to do.  I have his address somewhere, will try to remember to send it to you so you can send a card.

I had my regular blood tests early yesterday - and one was a urine specimen - locally.  I did not realize that you could take pathology request forms to any pathology collection centre regardless of the form you get the requests written on because the system is deregulated.  I'm glad Dr. Andrew told me.  It meant not having to go into town.

As for me, I am still recovering from the big day and getting spaced out from just sitting upright too long or concentrating on Facebook chat so I am out of here. 

New Doctor for ME/CFS Labs

A long day to say the least.  Jan came with me for the drive to Noosaville to see Dr Andrew.  He always is running behind schedule so patients phone all the time to find out how far behind he is today.  I had an appointment at Midday, got there at half eleven and got seen at 2pm.  At half past eleven we knew we had an hour and a half to kill so we got Red Rooster and sat and ate at Noosa River.  Then we waited in the surgery waiting room for an hour.  My heart rate got up to 148 but it was more adrenaline today and I had no great problems sitting except that I would get waves of nausea every so often.  Anyway, the centre had kids single lounge chairs low down to the ground so guess who sat in the kids chairs with legs out stretched?

I don't like initial consultations.  It is all me talking (at 100 mile an hour) working my way from being a 16 year old to the present time in medical history.  Impossible in half an hour so you know you are doomed before you start.  But at least it is bulk billed so coming back to finish in a fortnight's time is not so bad financially.  It's the petrol and lunch money and rebound illness that are the all important considerations.  And $450 Lyme tests.  The rest of the tests he wants me to have are bulk-billed.

I have a man here who wants to put a reason behind CFS and he thinks it is a parasite.  He also said if I tested positive for it I should get the boys tested given certain problems they have. This parasite that he said doesn't have a name I am not sure if he meant separate and apart from Lyme Borrelia or not.  We ran out of time.  I'm supposed to phone Australian Biologics Testing Services in Sydney when I have the money for that Lyme Borrelia PCR.  He did not even ask about any tick history I might have had.  I still remember running to Mum ahead of you Zena, yelling "Mum, Zena has a spider stuck in her neck". I had never seen a tick before then except engorged on GiGi at the same caravaning trip up the NSW Coast somewhere.  Where was that?  The other tests ordered which I will have done ASAP include:

FBE, ESR, E/LFT's, TSH, ANA, B12/Folate, Bence Jones Protein, EPP (Serum) Ferritin, mycoplasma/leptospirosis/Q fever/chlamydia/rickettsia/typhus serology, vitamin 1, 25 OH D (ENA/ANCA as indicated), cortisol, food RAST, IgE

In relation to this parasite I think he meant, he asked if I had anything to do with farms, cattle, chooks.  So he was told about farms, cattle, and chooks with their stick-fast fleas but I forgot to mention unpasturised milk and beef being hung in a shed overnight before being minced, packed and consumed by us. The joys of marrying into disease.  Anyway it was enough of a reason to run some of those tests above.  I have tried to look some of them up.

Active Days

Up until a couple of days ago, I've been getting away with being more active than I have been all year (not that my memory is that good to know for sure).

 I've been cooking a lot for the low-starch diet and experimenting with new things like Kefir Milk, Kelp Noodles and Kale Chips.

 I was still having lots of sit-downs in between and I realized that I could not keep up this pace without a day nap and so I have been napping.  I've been really tired since that dizzy virus but I could still go to the shops and walk without wanting to plonk down.  One day I went out twice!  There are so many things I want to do but it wasn't long before I was getting warning signs which I have not been respecting enough.  I don't seem to have enough discipline to stop.  No sooner than I had sat down and I would be up again forging on past the increasing pain levels, blurry eyes and the rest of my warning signs.  I was on a roll and I didn't want to stop.  I still don't.  I went to Bunnings and bought I few plants and potting mix so I had even more to do after getting my ingredients from the Forest Glen Natural foodstore.

I would have gone up to HB last weekend if B hadn't have been sick with what sounds like the flu or a bad cold.  I have no such plans for this weekend because I need to conserve energy for Tuesday when I am going to have an appointment with a new doctor.  One that not only treats CFS and Lyme disease but also bulk bills.  He is in Noosaville.

I got some bad gut pains a couple of days ago so going low-starch is obviously not the whole answer because I got backed up again.  I had been taking more pain killers though because increased activity always means increased fibromyalgia pain.  I also had to take the beta blockers because my heart rate started shooting up again just doing nothing so my good run is over.  Bunnings was my last day out and getting that bag of potting mix around to the back yard has really flared up my "around the ribcage pain".  So now I am taking Celebrex too which is what I was prescribed when that heart pain turned out not to be heart pain.  It feels more like stretched cartilage to me.  In bed, I cannot raise myself up on one side and rest on one arm because the stretching brings on more permanent pain.  I stopped the beta blocker today because it really does make me extra tired and lowers my mood.  I am certain of it and perhaps I have relapsed because it was masking an important warning sign - the tachycardia.

I'm not having any problems with anxiety.

B is looking for a job but has not been able to set up the car requirements with regards to the i-license.  I have not heard from S since he said he would probably sign a lease when the time came.  He wants me to go down there for his birthday because he cannot afford the petrol to drive up.  He did not arrange anything with Connor for Father's Day as far as I know.

I hope things are working out for you.