My story so far ...

[woollypigs]

I contacted my GP today and she understood my request for westernblot/immunoblot test. The GP couldn't find find it on their system, but contacted Airedale Hospital where they get their blood test done. The GP reported back that Airedale Hospital did send my test to RIPL in Porton Down. Where they would only do the westernblot test if the first test was positive.

My GP said that they (the surgery) couldn't force/ask RIPL to do the westernblot test when the first test was negative. My GP also said that she now hopes that this put my research into Lyme to rest. So I don't think I will get a referral from my GP or that they will give me a course of doxycycline, without further proof.

So I will look into getting the Lyme test done privately.

 

[woollypigs]

I got my Lyme tests back from http://www.countypathology.co.uk

B.burgdorferi IgG Negative
B.burgdorferi IgM Negative

Borrelia IgG Lineblot (virastripe)
IgG to Borrelia P83 antigen Negative
IgG to Borrelia P58 antigen Negative
IgG to Borrelia P43 antigen Negative
IgG to Borrelia P39 antigen Negative
IgG to Borrelia P30 antigen Negative
IgG to Borrelia OspC antigen Negative
IgG to Borrelia P21 antigen Negative
IgG to Borrelia Osp17 antigen Negative
IgG to Borrelia DBPA antigen Negative
IgG to Borrelia P14 antigen Negative
IgG to Borrelia VIsE antigen Negative
Borrelia IgG Interpretation Negative

Borrelia IgM Lineblot (virastripe)
IgM to Borrelia P41 antigen Negative
IgM to Borrelia P39 antigen Negative
IgM to Borrelia OspC antigen Negative
IgM to Borrelia Osp17 antigen Negative
IgM to Borrelia VIsE antigen Negative
Borrelia IgM Interpretation Negative
Borrelia Lineblot Comment No serological evidence of B. burgdorferi infection.

and LDA had a look at it :

Sample dated 11/12/13
C6 EIA = 0.384
Immunoblots not done because C6 was negative

Results from sample received at RIPL 13/05/15:
C6 EIA = 0.252
IgM immunoblot Negative: No positive or sub-threshold bands
IgG immunoblot Negative: No positive or sub-threshold bands

So these results show no sign of Lyme disease as there was no reaction at all on the immunoblot.

The only three things I really suffer from atm as in when I don't work, cycle and do my hobby is:

I still suffers from a blocked nose, sinuses every morning. Feeling like I'm coming doing with a bug. But eating Turmeric (400mg) a day keep it down in a manageable level. Though when I forget to take Turmeric it is much worse. On bad days I can feel the pressure from sinuses in my eyes and see it in my vision.

My ears are utterly sensitive to a cold draft, right into the bone and sinuses. If I forget to put on ear warmer while out walking the mutt, I suffer (painfully) for hours after. Just like an infection is about to kick in. This past week, if I didn't cover my ears going out with the garbage was enough to set if off, and the bins are only 5 metres away from the door.

Ok the summer haven't really kicked in here in the UK, I still cover up my ears in June. Just celebrated my birthday and that is the first birthday ever, where I had to put on ear warmers on the day and an extra layer while out walking.

Looking into chronic ear infections I have noticed that one major cause for this problem is living in a smoking house. Jolly good news that my folks gave me this problem, I have vivid memories of walking into the living room and see the cloud of smoke at my head hight as a wee nipper. I suffered with ear infection two-three times a winter when little.

In the last few weeks I have had a cough that will not go away. No swelling or flu like symptoms etc. Just dry - drinking water, sucking on stuff don't do anything.

Yes I will book into the GP and ask for a trip to a nose, ear and throat specialist, as it is not getting better just worse.

If I try to do more- such a big clean up in the house - I get tired easily and if I do something that is arm using heavy the fatigue is worse. I can walk the mutt just fine and managed to build it up quite well to around 4-5 miles. Though I still need a good rest before and after.

I have just started on a Whole30/paleo "diet" trying out to see if there is anything I'm missing or getting too much off.

 

[woollypigs]

In the last few weeks it has going a bit backwards, easier tired, weak, fatigued and out of breath. Have to do less, cut the dog walk even shorter and ignore house chores. Feet getting worse by the week, agony in the AM. Wakes up 3-4 times a night with very painful arms and hands. They are more often in pain during the day. Don't really have the mental capacity to do stuff, borderline brainfogs. Still feeling the cold big time, nearly fully dressed in bed with a thick duvet over me with the window closed and I'm not too warm. I used to be the flip side to that coin. Getting going in the AM is a right old workout and when I do get going there isn't much oomph to do stuff for long. The general mood have often been hovering around meh, bleh and crap.

One good thing out this is that my laptop don't seem that slow, as it really is

Today I had a follow up phone call with the Occupational Therapist at Leeds and West Yorkshire CFS/ME Service. We are doing the phone call, because they have to book a room for Skype and I have to sign a consent form to be able to do. I asked to do the phone calls earlier because the journey over, appointment and the journey back takes a bit more than three hours, and it is close to the max I can do on a good day, without rests. Anywhoo the call can only be classified as shite.

I should stop focusing on the symptoms and the pain I'm in and use mindfulness. Every time I started to talked about what hurt, how I felt, how various symptoms changed since we last talked. She steered me away and told me that I had to concentrate on my mindfulness and wellbeing. I should cut down on my activities, set lower goals, spend more time on resting, spend more time being mindful/meditate (though don't fall asleep when doing so), be happy in the moment, enjoy the small gains, learn ways to cope with the pain.

She will send me some reading material regarding sleep (though, I just put my head on the pillow and I'm gone, don't sense/wake up when Peli moves about, which I used to do), mindfulness and managing pain. Told me to have look at this little film -

- Understanding Pain in less than 5 minutes, and what to do about it! And if had the money I should read this "Living Well With Pain And Illness: Using mindfulness to free yourself from suffering: The Mindful Way to Free Yourself from Suffering" and other "Buddhist'ism"/"meditation" mindfulness things.

Should look up and read about the "Pain gateway theory", to help with coping with the pain.

 

[daisybell]

Don't know what you thought of the video but it just made my blood boil!

 

[CantThink]

I should stop focusing on the symptoms and the pain I'm in and use mindfulness. Every time I started to talked about what hurt, how I felt, how various symptoms changed since we last talked. She steered me away and told me that I had to concentrate on my mindfulness and wellbeing

Advice that is not easy to follow, even if one wants to, when in uncontrolled pain and with your life completely changed. I am glad you didn't travel all that way for such 'help'!

Have you had your thyroid tested recently?

 

[CantThink]

Don't know what you thought of the video but it just made my blood boil!

It was so patronising!!!

It also is way too general. Just because a person has chronic pain doesn't mean it's not got an underlying fixable cause. The video assumes that people get a timely and accurate diagnosis. Tell that to women with endometriosis who on average take 7-8 years to get diagnosed, and for whom excision surgery is typically appropriate.

My blood boils for you @woollypigs

 

[woollypigs]

Thanks for your replies. Had a thyroid blood test a year ago. Though I'm sure that my wonderful GP will not let me have another.

 

[CantThink]

Do you have a copy of the results?

It is possible to do private finger pin prick tests for extra thyroid tests - there's a couple of companies that offer them in the UK. The good part is that they offer free T3, which most GPs don't do or can't get under the NHS.

Some/most of your symptoms sound as if thyroid could be involved. Obviously there is some crossover between M.E. and thyroid symptoms - it is still worth double checking or keeping an eye on in case something us developing (e.g. sometimes it seems as if symptoms can appear well before blood work overtly supports it).

 

[digital dog]

Did you have your thyroid antibodies checked? I very much doubt it living in the UK. I demanded (after 18 years) for my antibodies to be checked and what do you know....

You could try going gluten free as this seems to help a number of people. Or LDN for the pain?

Sorry you're suffering.

 

[woollypigs]

The last blood test I had included : Full Blood Count, Thyroid Function, U/E, ESR, L.B.P, Phosphate, CRP, HbA1c.

All I got the next day was a text/sms saying that my blood was ok.

Need to go and collect my medical record, though the GP are not too keen on letting me having it. I can get to see a copy for free, where they will print it all out for me to look at in a room at the GP, not on a PC/laptop/tablet.

To get a copy to take away they will print it all out and I can have it for £50 for x pages. Fecking 'eck it is 2015, I got a USB stick, a stack of CD ROM/DVD they can have, dropbox, ftp server or email addy. And if you are scared I'm not whom I say I am I got PGP and a passport and papers saying that I own this house out right, which funny enough the banks are happy to accept as proof that it is me ... sorry for the rant.

Need to write a letter regarding freedom of information act, though I just can't get my head around that atm.

 

[Sea]

The last blood test I had included : Full Blood Count, Thyroid Function, U/E, ESR, L.B.P, Phosphate, CRP, HbA1c.

All I got the next day was a text/sms saying that my blood was ok.

Need to go and collect my medical record, though the GP are not too keen on letting me having it. I can get to see a copy for free, where they will print it all out for me to look at in a room at the GP, not on a PC/laptop/tablet.

To get a copy to take away they will print it all out and I can have it for £50 for x pages. Fecking 'eck it is 2015, I got a USB stick, a stack of CD ROM/DVD they can have, dropbox, ftp server or email addy. And if you are scared I'm not whom I say I am I got PGP and a passport and papers saying that I own this house out right, which funny enough the banks are happy to accept as proof that it is me ... sorry for the rant.

Need to write a letter regarding freedom of information act, though I just can't get my head around that atm.

Use a phone camera or scanning app. Still pursue the FOI if you want so you get the info in more usable form

 

[Sea]

I should stop focusing on the symptoms and the pain I'm in and use mindfulness. Every time I started to talked about what hurt, how I felt, how various symptoms changed since we last talked. She steered me away and told me that I had to concentrate on my mindfulness and wellbeing.

That might be ok for someone who has answers and is needing to adjust to a new life of pain and illness. It is completely inappropriate for someone who doesn't know why they have pain. Imagine treating someone who had a broken bone with this garbage.

 

[CantThink]

@woollypigs

You can just ask them for a print out of your latest results. I've done it quite a few times. It is common practice on Thyroid UK forum also (so it's not just me). If they ask why, I just say for my (medical file) records.

The problem with a text message saying all okay is you don't know what exactly they tested under 'Thyroid function' nor where you fall within the okay ranges for those results. Just because you are within range doesn't mean it's optimal for you, plus a lot of the time they only test TSH which is only a tiny part of the picture.

 

[woollypigs]

@CantThink yes that is what I'm going to do.

 

[CantThink]

@woollypigs

Have they done ANA, Celiac, Vitamin B12, & Vitamin D3 tests? If not, they would be worth doing. The ANA is useful for highlighting if an autoimmune problem is developing or if you have one.

 

[woollypigs]

I have had other blood tests done, though never got their names. I know I have had the B12 and that was ok, I got that told by my GP. Never head about ANA.

I know about the "ok" results, I could be high or low or 40% below my normal but still be within the "range" to be ok. A sports physio I spoke to said that the first thing he does with a client is to get a full blood test. So that when he and his team - food/health/massage/training/etc - work together they can see where stuff needs to be added, changed or removed.

Another reason for getting my paper works is that. When I was a the specialist regarding my ears, he asked me did they ever found out what the cyst on the lumbar is? I was never told that they found a cyst when I had my MRI scan. I was told that there was some wear and tear on my T1/C7.

When I was having a Nerve Conduction Study, I noticed a letter addressed to me and my GP, in the nurse paperwork. Which I have never seen, I could see my name and address clearly next to the TO and the same for my GP. I could see some of the headline/subject and just knew that I have never see/read that letter.

When I asked - erm what is that? I was told that I could not read that and I should ask my GP. It is addressed to me, my GP didn't call me to discuss the letter.

Getting more test and or referrals from my GP will not happen. They have clearly told me that we have spend enough on me. Even the Occupational Therapist at Leeds and West Yorkshire CFS/ME Service, said that we have spend a lot of time and money on test on me.

The other surgery in town and within the catchment area that I can join. Is getting paid a "bonus" for not referring too many people. So switching GP is not going to happen/help unless I move.

So yes, I think I will book a date with the GP rock up with my camera and photograph my medical records. Hmm, will ask around to see if a friend got a portable scanner I could borrow.

 

[woollypigs]

Well haven't got around to see the GP regarding my paperwork. I have felt too crap and meh to get my head around it and my great support/partner is swapped with work atm.

Since I have been on steroids for my middle ear infection, where the specialist didn't find anything wrong, I have not been up to much. Felt rather down and meh and my other symptoms have been worse and takes longer to get over anything. They got worse the longer I was on the steroids, so have now stopped.

The most annoying thing is that I feel the cold, big time now. I'm not the hot water bottle I used to be, my partner don't cuddle up to me for warmth anymore, but moves away because I'm the cold one.

I wear many more layers on indoors and outdoors compared to before, I used to be in shorts all year round. Last to put a jumper on, sleep with the window open all the year, etc. Visiting friends, pubs /cafes I used to be the one "cooking" and sitting there in shorts, at the max a base layer and t-shirt and be sweating. Now I got woolly jumpers, thick fleeces, long Johns, long trousers with the heating on and just about feel fine.

I know that this comes to us all But not from one extreme (being the warm water bottle) to be frozen stiff overnight. I felt like I was coming down with something one night, had to put socks, t-shirt and a night cap (bald head) to get just about warm enough to fall asleep. Since then, mid Sept so still mild overnight, windows closed, PJ's and a thick duvet. Yet don't feel warm enough.

So I'm on a "detox" no drugs/medicine and other funny things until new years and try out Dr Myhill Nutrition and Supplements program. We have ordered a whole shop worth of stuff and I will be rattling come January.

Along with keeping a strict'ish Whole30 diet, which we did very strictly over the summer, but didn't find anything that my body didn't like. So I'm back on rice and other stuff but not as many times a week as we used to do. Sugar is gone too, ok I had some marzipan the other day, but that is my favorite thing

Along with a bit of homeopathy, a friend is very keen on homeopathy and have been given a the odd potion now and again and clearly reacted to it. I'm a bit of this is snake oil, but heck what can it do to me.

 

[woollypigs]

I know it is early days yet, and I fear a backlash from posting this

Since I got off the steroids I have felt better day by day and right now feel the best I have felt in three years.

All the ailments, pain, fatigue are much reduced. For example the pain in my feet is at least 80% reduced and only last about a minute, instead 20min. My brain fog is pretty much gone and I can now get my head around calling people or read to the end of an article.

I have been on Dr Myhill supplement regime for three weeks now. And after new year I will go on a alcaline detox diet along with a homeopathy "clence" while stuffing my face in all the pills that Myhill recommend.

Small steps but they fell good, here's to the new year.

If you are interested click over and read my blog - http://www.woollypigs.com/2015/12/a-new-year-solution/

 

[Aviva3]

I also second tests for dysautonomia. This would include biopsies for small fibre neuropathy: could explain pain. Pain, however, is decidedly weird: buzzing, burning, tingling. But I also have sharp pain in muscles. I'm dropping dishes like crazy too. MRI will show nothing.

The fact you sleep so well might contradict autonomic neuropathy, but who knows. I had negative nerve conduction tests, but positive biopsies. Fatigue and post-exertional malaise typical.

 

[woollypigs]

Wow, I don't know what to say - but all my aliment have packed their bags and buggered off, poof gone! I no longer spend time trying to find good things, I spend a long time trying to find something that hurt, when someone ask me how I am

Three years of doctors, specialist and consultants and numerous trips to the fatigue clinic, nothing helped.

I have been on Dr Myhill regime for two months and I haven't felt this good at any point in this last three years. At the worst right now I feel a bit out of shape, just like when you have had 2-3 months off from an activity/sport and you are now back on it again.

Yesterday and today I managed to do some wood carving, even shopping where I pushed the trolley around not dragged it. And my hands and arms just feel fine - "normal".

Not very scientific, I know, I wear a step counter. Where on a bad day before, especially when on the steroids, 3000 steps would have been a very hard target to get to (simply because I couldn't) and I needed a rest the day after. Now my rest days are easy 2000+ steps above my most active days before. If I clocked over 7500 steps before I needed a rest day after. Now I'm often clocking up 9000+ steps and do not need a rest after! My 10.000 steps a day is not a target to beat, but more a target to try to stay under

I'm still trying to take it easy not pushing myself, but it is hard because I want to do things. Where before I wasn't keen at all, couldn't pull my finger out. I really feel like I can walk longer, do more in a day, but I don't want to jump the gun and have a set back. So easy does it.

We are between a disbelief that this is working, disbelief that it is working so fast and if it is this true, are we dreaming and why didn't the doctors figure this out in the last three years?

Thanks all for your help, I know I haven't posted much but I have lurked a lot. So please stroke your good luck charms and cross fingers for me