Looking for answers, Lyme disease or ME/CFS?

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 I am a 31yr old female. Me and my family are looking for help, we are getting desperate for answers and hoping you can point us in the right direction. My main questions are as follows but any advise is more than welcome!! 

1. Where can we find a lyme specialist in the UK? (we are in surrey)

2. and how can we be referred for testing? (We are willing to go private if needed)

3. Also I have read a lot about the unreliability of western blot tests especially those done in the uk (I believe they are processed at Southampton) and would like to know about how to get the test sent abroad to be processed? 

The reason we are asking is I have been increasing unwell since Easter 2013, and since May this year it has completely affected my life. I will try to be brief and chronological but it is a long story sorry.

 I have always been a very active person and have travelled to many weird and interesting places around the world and worked very hard along the way. I have been living in Norway since October 2010 doing a mixture of waitressing whilst I learnt the language and arty/photography stuff. Easter last year I was between jobs and ending up living in the mountains in a cabin outside of voss for about six weeks to work at a hotel. I got sick with something like a very bad cold and swollen tonsils so I jacked myself up on flu meds and struggled through it. I returned to Betgen to start my new job opening a brand new restaurant and hotel but was still unwell with a bad cold symptoms, and very stiff sore neck (at the time I just put it down to job related) and a cough that was awful and wouldn't go away. 

After some weeks I go so fed up that I went to the doctors (I wanted to be well for the demands of my new job) I ended up being sent to hospital and was admitted for 4 days as my blood pressure was very low but was discharged with no answers and told it was probably a virus (I think I had steroids or antibiotics IV but can't remember). I carried on working but was getting tired very easily and now had headaches along side the persistent neck pain. In October I lost my job as I wasn't performing well enough according to some of my colleagues. (I am a bit of a perfectionist and a high achiever - I have 2 first class degrees - so this was a first for me a came as quite a shock!) I was often very tired but plodded with life on anyway, I am not the type to give up. I spent Christmas with my boyfriends family and kept getting embarrassed by how tired I was (I'd fall deep asleep after dinner for at least two hours every evening) I carried on with part time work but it always seemed much more straining than I was used and would have to take pain killers to manage. By April I had had enough as I was so tired all the time. I hat to reduced my hours and was starting to struggle finically. The doctor took some blood tests and sent me straight to hospital as he explained I was anemic and my Hb was only 8. I have been too unwell to work ever since.

I was in hospital overnight, had an iron transfusion as my iron was very low too and then sent home. I went the GP to be followed up 3 weeks later but still felt crazy tired with headaches and neck pain and now lower back flank pain. I was told my b12 was very low and this was why I was not improving and that injections would help. They made NO difference. Now in June I was getting distraught my GP was planning to look into why I became anemic and b12 def in the first place (my boyfriend is a chef, I eat very well, am not a vegetarian and my periods had actually been getting very light) unfortunately the GP quit his job and I was fobed off by the clinics receptionist. I managed to see another doctor as I was still cornered about my back pain was getting worse and my period was being weird. He gave me a strong course of antibiotics for 10 days as thought maybe I had a kidney infection. He also did some hormone tests which showed very low progesterone. At this point my family intervened and made me come back to the UK as I was no longer able to properly look after myself. The antibiotics helped a bit but it didn't last. This was mid July.

Since my return to the UK I went straight to my GP (I am very lucky and she has been amazing I must say). She was quite concerned and wanted to get to the bottom of my seemingly unrelated symptoms and as my breathing had become shallow, and was now more like an old lady than my normal energetic 30 something self. she sent me to have a chest x-Ray and some bloods. My x-Ray was clear but my d-dimmer was slightly raised and my blood gas showed low CO2 so the doctor sent me for a VQ scan to rule out an embolism. This was clear. She then arranged for me to see a gastroendocronologist to see if this was to do with malabsorption. And a urologist as I had had a bout of renal colic that sent me to a &e and often had cloudy or oily urine. I have since had a endoscopy, colonoscopy with biopsies, more bloods and contrast CAT scan. I have even had a ultrasound on my womb and ovaries as my progesterone levels were tested again and came back very low. EVERYTHING else has come back clear... As I was getting bouts of very low blood pressure and postural hypotension and my b12 has dropped dramatically again after just 5 weeks of the injections. So she also organised for me to have a synancten test to rule out Addisons.  I meet with an endocrinologist on Monday and he said this was negative. He is organising more blood tests (all though I now believe I have had most of them already) and a brain MRI, if these come back normal (which I believe they will) I am looking at a diagnosis of ME/CFS and the life I have built in Norway which is majorly on hold will be thrown out the window. As you can imagine, my family, norwegian boyfriend and myself are getting quite despirate! 

I have been doing lots of research and come across people misdiagnosed with ME when they in fact had Lyme disease. Thinking back to when I first had problems I am wondering if this is a possibility. I want to be able to rule out everything as ME is a diagnosis of exclusion and wont be able to move on until I know I have looked at everything. 

Any help or advise will be greatly appreciated.

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    • Posted

      Hi Jeanette, that's unbelievable. What does your GP say about it all ?

      What treatment are you receiving ?

      I'm not sure if i have lyme. Can you describe to me the onset of your illness, so i can compare to my own ?

      Best of luck !

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    • Posted

      I first became sick 6 years ago after a corticosteroid injection.  Started with almost 2 stone weight loss in 3 weeks, red streaks on thighs, palpitations, shaking, aching joints and horrendous anxiety.  I then got tested for thyroid and was found to have a multinodular goiter with hyperthyroidism.  Doctors kept saying I must have an enderlying condition but until I changed doctors recently they weren't interested in finding out.  They just told me to have my thyroid out to see if that helped.  I refused as I don't think bits of my body should be removed on the off chance that it will make me feel better.  Every time I typed my symptoms into google, it came up with Lyme Disease, so I went through all my medical reports along with all the info I could find on Lyme.  I was 95% sure that's what it was.  I had a brain MRI last year that showed a T2 flair.  On the internet Lyme brain MRI's show the same.  Last year I was on Clindamycin for dental treatment and I got porphyria.  I read that with Lyme, when you take Clindamycin it causes a Herxheimer reaction and secondary porphyria.  I also have vasculitis as do many Lyme sufferers.  If an illness is not test book and easy to diagnose - doctors aren't interested.  I tested positive to  Trichothecene mycotoxins and doctors gnored that too.

      I did comment a year or two ago that it could be Lyme and was brushed off with 'You don't have Lyme Disease'.  Even though I had been a stewardess for 8 years travelling all over the world.  I also rescue cats and dogs which numerous are tick infested. 

      I live in the Middle East and told my old doctor the other day that I had tested positive for Lyme.  His comment was 'we don't have Lyme here and you don't have it in the UK either'.  My sarcastic reply was 'that must be the reason the NHS have built a Lyme clinic in Winchester'.  I have had enough of the crap they come out with.  For the first 3 years of this illness they wanted to put me a Xanax - told me it was all in my head.  Physically my palms and chest are bright red and I'm allergic to lots of perfumes, medicines and pesticides which cause me to get hives and my throat closes up. I have also been on anti-thyroid medication for 3 years which doesn't help much and I got porphyria last year - How can it all be in my head!!! aagh!!

      Anyway I spoke to a German doctor last week who told me it has never been proven that antibiotics really help with Lyme so he recommended I go down a homeopathic route.  I will be starting this week with a homeopath who is developing a plan for me - not sure what yet.  I am eating lots of garlic and basil as apparently this helps kill Lyme.  After a week of eating this daily my chemical reactions have calmed a little so it must be helping.

      I tested CDC positive on the Western blot IGM to several bands but CDC negative on IGG as only a few bands showed up.  My IFA tests was equivocal but through this my current doctor has diagnosed chronic lyme.

      This illness has destroyed the last 6 years of my life.  I lost my job, I can't drive as my vision is distorted and I get anxiety and dizziness.  I can't go to malls because of perfumes etc and I am constantly in pain and feeling faint.  My daughter barely remembers me being well as she was only 7 when this started.  I feel robbed of all the activities and fun things we should have done together when she was a child.  She's now a teen and by the time I recover enough to do things with her - she won't want to.  Doctors lack on knowledge and empathy saddens and angers me.  I had to research my symptoms and get tested and diagnosed myself with no help from them.

      Will let you know how the treatment goes.

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    • Posted

      You have bartonella too I see Janette. What did the German doctor say about the treatment for bartonella? (Or any other doctor for that matter - or doesn't bartonella exisit either?) 
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    • Posted

      Re the cortisone injection.  Cortosone messes with the immune system.  Many many Lyme patients had the bug in their system without symptoms and then suddenly a stressor sets the Lyme off. In your case it was the injection, in other cases patients report Lyme onset after an operation illness or a car accident. once the immune system takes a hit the Lyme takes its chance to flourish.   The first Lyme doctor I saw informed me never to take cortisone if offered, "it will do nothing to help your recovery". So make sure you never ever get another dose of cortisone. 
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    • Posted

      Thanks Jeanette, what a ride. I hope not to follow you but thus far i have the CFS diagnosis having been a triathlete for many years, fit as a fiddle, very health conscious. My illness has ruined the last 10 months of my life and i ask how long is this going to go on ?
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    • Posted

      For me i remember quite clearly an gradual onset of symptoms, over a period of about 6 weeks then WHAMMO i've never felt so ill in all my life, i tell people this must be as close as it feels to dying without actually dying. I've had the flu but this was the flu times 1000.

      I've rang an ambulance twice feeling so weak and pathetic in the early hours of the morning, felt this is it my heart is about to stop beating. I've improved a bit since all this, it lasted for about 6 months, i still feel unwel, i'm taking lots of herbals and these are helping with energy levels but i truly know i am still not right and housebound for most of the day. Present symptoms are that i fatigue easilly and the whites of my eyes are discoloured, more red, can be conjunctivitis looking. I've had my eyes tested twice and they are better than 20/20 but i know they are not right. Kinda like objesta are not as clear as before in some odd way, like my vision is clouded over. Reaction time is very slow. Stress respose very poor. I realise i may not have lyme but at the same time the longer i remain unwell the more i gravitate towards it. I was in the highlands August last year triathloning and was holidaying in Bulgaria July, in the mountains, hiking, kayaking etc

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    • Posted

      Hi Rebecca

      I thought I must have co-infections of bartonella and babesia but the tests came back negative for them.  I don't know if my blood sample degenerated as I was a bit annoyed with the lab.  The day I sent the sample I called and gave them my credit card No.  a few days later I called to make sure the sample had arrived and they said they needed payment so I gave them my credit card no. again.  2 weeks later I called to see if the results were in and they hadn't started the test as they said they didn't have payment details, so I gave them my credit card no. for the 3rd time - then they started the test and it was another few weeks to get the result.

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      I can't wait to become healthier so I can go to the gym and shift the excess weight I have gained.  Initially I went really thin but 3 years of taking propylthiouracil for my thyroid has taken its toll.  I wouldn't mind if I had an appetite and ate a lot but I don't.  Not being able to do much hasn't helped either and in 3 years I gained 12kg.  Unfortunately all this has damaged my adrenals and I'm now in stage 2 of adrenal maladaption.  I did see a natruopath in UK in December who did the adrenal tests and gave me a natural adrenal boosting formula but my legs turned to jelly and my heart went beserk so I stopped taking it.  The problem is my adrenals make too much adrenalin throughout the day extremely high amounts on waking, but shut off 5 hours later, then kick off again in the afternoon. 

      I have read a few scientific reports stating Lyme could be passed through mosquitos and sand flies too.  If that's the case I could have got it anywhere in the world.

      The only time I noticed any change in my health was in 1997 when I a back bout of flu.  Afterwards every 2 to 3 months I would get vertigo for a few days and would have to go to A&E for stemetil injections.  My RBC was down to 6 at the time and the doctors attributed it to being anaemic but the iron tablets they gave me made it worse.

      I also had to have my daughter under emergency general anaesthesia and every time they tried to inject me with spinal block I got buzzing in my brain and started vomiting.  They tried 15 times.  After the general anaesthetic I was apparently wrapped in foil and blankets for a few hours and my BP was soaring.  Makes me wonder if I had Lyme back then.  I need to get my daughter tested to make sure I didn't pass it to her.

      Unbeleivable that all these years of debilitating illness can come from one little bug bite.  That's all the thanks I get for rescuing animals!!

      The visual problems I have are similar to being mildly drunk or hungover like my brain is lagging processing information.  I decided to quit driving as I don't want to endanger mine or anybody elses life - that and the fact that my adrenals kick off at the slightest thing and then my heart goes nuts and I start to panic which makes things worse.  I also have the fear in the car as when I got the corticosteroid shot I was with my daughter and she was 7 at the time.  I got in the car with her and drove out of the hospital onto a dual carriageway and whilst driving sufferred what they called an anaphylactoid reaction.  It was terrifying.  On a main road with a child and 50 degrees heat outside, I envisioned dying behind the wheel.  I managed to get to the nearest mall, sat in a coffee shop where luckily I vaguely knew somebody and instructed her to look after my daughter if I went unconcious and to call my husband whilst I waited for my husbands daughter to pick us up to take me back to hospital.  I really did think that was the end for me and I was so scared for my daughters safety.

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