Help with test results

[maryb]

Do you think its important when they say not to lean on anything, thats going to be difficult with my bad back?

 

[SOC]

Do you think its important when they say not to lean on anything, thats going to be difficult with my bad back?

Sadly, I think it is important not to lean on anything. Maybe you won't have to go the full 30 mins, though, to see a huge effect. If you looks at the Results section at the end of that article, it tells how to interpret the results. I think if you hit any of those markers before 30 minutes, you can figure you have that type of OI and quit.

 

[maryb]

I'll let you know how I get on.

 

[taniaaust1]

I think being still and upright would be the up most important thing when testing.. leaning on something a little probably wouldnt affect the test greatly. If you are wiggling a bit cause you back hurts, that will probably affect the test far worst.

I strongly suggest you have someone watching you to make sure you arent wiggling toes or anything during this test. (I did a 10 min standing test on my sister the other day and she started moving things without even realising she was).

Ive found I can even do my orthostatic testing from just laying for a while then just sitting still... even the upright posture of sitting can give me orthostatic dysfunctions which meet the kind of readings needed for diagnostic criteria But I guess whether a laying to sitting test shows issues, would all depend on just how bad someones issue was.

 

[maryb]

Thanks Tania - I'll try not to wiggle Haven't done it yet working up to it!!
How did your sister do?

 

[SOC]

Good point, Tania. My body long since learned to wiggle and fidget to keep the blood moving. It was really hard to stand perfectly still for the test.

 

[maryb]

Soooo - my knees looked very mottled -pink - horrible actually after the 30mins. It was very hard to stand still. Here is the result:
Rest 104/60 HR 70
5mins 123/75 HR 80
15mins 128/81 HR 79
25mins 128/75 HR 77
30mins 124/78 HR 83
Any views?

 

[SOC]

Soooo - my knees looked very mottled -pink - horrible actually after the 30mins. It was very hard to stand still. Here is the result:
Rest 104/60 HR 70
5mins 123/75 HR 80
15mins 128/81 HR 79
25mins 128/75 HR 77
30mins 124/78 HR 83
Any views?

Your numbers make me look like a real sicko, lol!
My data:
Rest: 127/92 HR 95
5mins: 144/94 HR 112
15mins: 134/102 HR 117
25 mins: 145/103 HR 124
30 mins: 160/105 HR 124

If you look at Normal Test Results on this page http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome
your systolic orthostatic change is outside the normal range: yours -- +20, normal range -- -19 to +11,
but everything else looks okay.

As you can see, mine is much worse. Actually, my "at rest" results are normally lower: 128/85 HR 85. I think I needed to rest supine more than 10 mins to get my resting rate down to it's normal level.
My data suggests POTS (HR increase of >28 or above 110), and orthostatic diastolic hypertension (Dia > 98)

 

[taniaaust1]

Thanks Tania - I'll try not to wiggle Haven't done it yet working up to it!!
How did your sister do?

It soo surprises me how much her CFS is unlike my ME. Her POTS test I did on her (unless her moving ruined it).. I was amazed at just how little her BP and heart rate changed from laying and standing.. very very little difference happened right throu (i guess that is how someone with a good autonomic system must appear). Its like she has none of the things I do but different symptoms. If she wasnt my sister and if there wasnt a good chance she caught her illness from me when she drank from my glass.. I'd swear she had a different illness.

 

[maryb]

Thanks SOC you been a great help - so it looks like I'm okayish - what I would have thought really, not exactly good but not something to worry about, given everything else thats wrong at the moment.

 

[taniaaust1]

Orthostatic systolic hypertension (which can be a type of dysautonomia in some as its shows issues with bodies regulation) is defined by an increase of 20mmHg or more due to standing.

You possibly have mild orthostatic systolic hypertension (which can also be a precurser to future hypertension, if you havent had a diabetes test for a while you could consider having one as that issue also be a coexisting issue of diabetes.. thou its probably the ME/CFS causing it).. thou it dont seem to be too bad so it may not be giving you any symptoms or an actual issue. (hard to say thou.. it may be more variable at other times.. if it is more up and down at different times like other ME/CFS symptoms can be, it could be causing issues at times).

Its something you maybe should check at times if you feel like your BP has gone too high so be aware of what hypertensive signs are (it may be spiking high when you are on your feet and moving about). It could indicate too that your blood volume may be a little low... thou its hard to say.

If you get some medical compression stockings for your leg swelling.. you may find you arent showing any orthostatic hypertension any more (if that happened one would assume it must of been due to blood pooling/low blood volume).

Other then that slight issue.. seems good. If it was me, I'd just do a poor mans test once per year to make sure it dont get worst over time.. and I'd be checking it if it felt like it was up high.

IFyou go onto diuretics I suggest after being on them for long enough for them to be working welll, to recheck what your BP is doing re orthostatic hypertension and make sure they arent making that worst. Take care

 

[maryb]

It soo surprises me how much her CFS is unlike my ME. Her POTS test I did on her (unless her moving ruined it).. I was amazed at just how little her BP and heart rate changed from laying and standing.. very very little difference happened right throu (i guess that is how someone with a good autonomic system must appear). Its like she has none of the things I do but different symptoms. If she wasnt my sister and if there wasnt a good chance she caught her illness from me when she drank from my glass.. I'd swear she had a different illness.

Tania maybe she has - so many illness have similar symptoms to ME/CFS

 

[taniaaust1]

Tania maybe she has - so many illness have similar symptoms to ME/CFS

she also gets coexisting depression at times which then gives her more headaches and aches and pains... to which SSRIs have helped her with those symptoms in past.

Thou I dont think her issue is all depression as some times she is emotionally good yet struggles to walk far and suffering extreme exhaustion.. she also has major food issues (her food issues are currently worst then mine are).

Her issues could turn out to be all due to depression, anxiety (she gets breathing issues she says arent anxiety) and major food intollerences I guess.. but yeah what would the odds be of that? probably not likely.. I think she probably has got CFS (but with none of the ME virally symptoms). Id so love to know why we all get different symptoms.

I also did a Rombergs test of her..she passed that with flying colours... but then I did one too and right now I dont have a postive Rombergs either (umm thou maybe some would say i still do as I was a little wobbly.. but I didnt end up moving my feet or falling over like I used to have happen in the past). Guess my dorsal root is doing better (thou every now and then Im feeling something weird going on in that area.. like its inflammed or something, strange sensation).

I also took her blood sugar to make sure it wasnt low .. I think I gave her the best medical checkup she's had hahaha.. (maybe we should start holding medical consultations with each other). On a serious note.. her doctors hadnt been giving her tests and just saying she's depressed, giving her the old you must be depressed as we dont know what is wrong with you treatment.. so yeah.. she did get a better medical checkup from us sisters playing doctors and nurses lol.

I think its good for us to all work out what is going on in our bodies and use that to help guide us on what to try.

best luck

 

[maryb]

I agree Tania - I've had more help (and compassion) from many people I've met on these forums than I've ever had
from my GP. I've found it harder having worked with GP's and hospital staff during my working life, always thought the NHS would be there for me too, but sadly not.
At the start of my illness the GP kept saying it was anxiety or depression offering me a/depressants , the night sweats, the leg tremors, the palpitations, the vertigo, It makes me angry just thinking about it, if they had tested for viruses then and treated me properly maybe I would have got better. I refused those medications many times and am so glad. I knew something else was wrong with me, no matter that they couldn't understand.
But having said that I do understand that some people need a/depressants and are really helped by them, I'm just against the universal throw them at everyone if we don't know what's wrong with them.

 

[maryb]

Update more results

1.25 Di-OH Vitamin D 35.6 range 20.00 - 75.00

C3A Serum level 6873 range 17775,00 - 62820,00
C4A Serum level 6898 range 20.00 - 1400.00
Nagalase activity 2.30 range 0.32 - 0.95

Lots of PCR testing on bacterial infections done, all negative. (babesia, bartonella,cl Pneu, borrellia etc) Can't seem to get anywhere. Again not that I want to have any of these infections but what the hell is going on?

be grateful for any opinions

 

[SOC]

maryb
Just a thought -- when you tried thyroxine before, it could be that the T3/T4 ratio in the formulation wasn't right for you. I've read that among the synthetics there are different meds with different ratios. There's some anecdotal evidence that PWMEs often to better with the natural forms which have a T3/T4 ratio of 20/80.

I'm pretty sure docs can check T3 and T4 separately and, presumably, prescribe a thyroid supplement whose balance is suited to your needs.

Am I right that you can't get decent herpesvirus testing in the UK?

FWIW, all my standard labs look normal to a GP. I went through 4 years of insisting there was something wrong and my GP becoming increasingly convinced I was a hypochondriac.

Even though my standard labs look normal, I have immune abnormalities and had 5 chronic infections -- HHV-6, EBV, C. pneumoniae, Coxsackie B, and Parvovirus B19. Our GPs are simply not prepared to recognize what's wrong with us.

I've long since given up even talking to my GP about my ME/CFS unless she asks about some treatment I'm getting. For the most part I just say, "My specialist is handling that." She's usually relieved that she doesn't have to deal with it.

 

[maryb]

SOC - its very basic testing in the UK for thyroid - no T3/T4 testing on the NHS unless they see the need for it. I would have to go privately again which I will do now, I have had it done before, that is when I was prescribed thyroxine, then after the palpitations, T3 - thanks for your advice.
Re the herpes viruses think they have gone into hiding, my last titre level wasn't anything like the previous 4 but I was really well at the time, suspect it may be different now. Its an absolute pain getting to see someone privately over here,long waiting lists, long tiring journey's, staying in hotels etc, never mind the financial side of it.

 

[SOC]

SOC - its very basic testing in the UK for thyroid - no T3/T4 testing on the NHS unless they see the need for it. I would have to go privately again which I will do now, I have had it done before, that is when I was prescribed thyroxine, then after the palpitations, T3 - thanks for your advice.
Re the herpes viruses think they have gone into hiding, my last titre level wasn't anything like the previous 4 but I was really well at the time, suspect it may be different now. Its an absolute pain getting to see someone privately over here,long waiting lists, long tiring journey's, staying in hotels etc, never mind the financial side of it.

That must be so discouraging!