can anyone help!!

Infections
1

sorry to trouble you all im looking for some help and advice i belive i have lyme disease but noone seems to wants to listen or knows enough about it and its killing me i cannot seem to get anyone to help or listen due to neghative tests that everyone seems addimant to rely on even tho its meant to be clinical diagnosis not serological.

i have been suffering for 2 years this month whith no answers and worsening symptoms i fish in france every 7 weeks for 2 weesk at a time in woodland and in july 2011 killed a tick full of blood on my bivvy floor, no rash as i recall but a red mark in my groin all doctors iv spoke to in the last few weeks have said no rash no infection but i have researched this and that not correct there is only 30-40% get the rash, i did not know then what a tick was nor lyme disease untill the last 3 weeks from speaking to a private aviva doctor in london who asked if i had been tested for it as i have tested for everything else and explain what it is and how it affect people he hit the nail on the head with my symptoms.

anyway i returned from france and 6 weeks later became ill with swollen optic nerve in my left eye numbness down my left arm leg fingers and into my toes with flu symptoms 2 weeks previous, i was admitted to neurology for 10 days for ct mri but nothing physical migrane diagnosed but i didnt feel right something wasnt right but i accepted it why would i not, after leaving hospital a week later i became ill again flu and fever though nothing of it rode it out, i continued with the pressure feeling in my eye feeling of not being right for the last 2 years with weakness in my muscles and still numbness and tingling in arm and leg getting worse, since then thing have gradualy got worse 6 month after i was admitted to hosptial again with pain all over my abdomen and kidney area more scans again unexplainable.

i have continued to have sore throats swolen gland and not feeling right fatigue that i have been back to the doctors over and over with while always haveing the other symptoms continuely getting worse to the point i have the numbeness has got stronger in my arms legs making it feel like they becoming weak and usless severe headaches feling like the cause is my eye, dizzyness feeling of blood pressure drops palputations that i again been taken to a-e with to find nothing i now have what i belive to be lyme arthritus as my hip lower back knee shoulder fingers and wrist joint are becomeing very painfull and severe and i am on the verge of not being able to go to work because of the pain and im only 26 this is destroying my life, i have also been feeling anious not wanting to talk on the ophone a feeling of annoyance its horrible to try explain i couldnt remember where i parked my car the other month i couldnt count the money last week to pay for my sandwich i fogot how to tie my fishing rigs that i do daily its horrible.

you have to bare in mind i didnt know about lyme or tick till 3 weeks ago and after researching it eveything fits together and makes sense the tick the timeing of becoming ill the illnesses i have been to my gp who done all the normal test negatives as exspected and the elisa test negative no suprise but when i tried to explain the tests are not reliable i watch a vidoe with head of lyme in america doing a video for physisians yesterday and he said around 30-40% reliable clinical diagnosis not serological here is the site very intresting click about lyme lyme videos and the first video www.ilads.org

i just realy need someone who can help or maybe knowlegable about lyme this is killing me and im only 26 noone want to listen hope someone can maybe help

Gavin Humber

2

Hi I'm Amanda and I am in the same situation as you. I believe I had Lyme but no doctor will listen. They won't even test me for it. I have similar symptoms to you I have dizziness migraine issues (although I so not 100% believe this diagnosis) I have gotten worse and now suffer with burning and sore skin sensations which isn't well explained. I've been reading up on Lyme and talking to Lyme sufferers and I really fit the bill.

There isn't much knowledge about Lyme in the medical field it's like it's been ignored yet so many people suffer with this. I don't even think there is anyone in the UK who can treat it so even if we did have it the long hard road will be treatment. Have you heard about the company in America you can order a test but your doctor will have to sign off out and you have to pay for it and its not cheap.

Do you want to stay in touch so we can help each other. Are you in the UK?

3

Hi Amanda and Gavin,

Sympathy/Empathy to both of you on all the issues stated. I'm pretty sure I, too have Lymes and their's no one who will listen or even offer support. It's pretty bleak and I guess I am looking for others in the same

position as myself. I would like to link up with other similar people - in this country!! - as I am finding it hardto cope with right now.

Like you say, people do

not want to know about the whole affair and after having the condition for some time and having

a misdiagnosis of MS, I have been thrown off track for some time now.

It would be great to keep in touch

with others so if you're interested, please let me know. I used to live in Richmond in London but have

recently moved to Totnes in Devon, in the perpetual search for support and help. I've been here for 3

months now and it is just as isolating. I am wondering where to start as I think I got the wretched

disease (putting it politely!) 14 years ago and it is now beginning to effect my fatigue greatly.

Where do you guys live?

Just talking to folks that understand what I'm experiencing would be a great relief.

4

I'm in hull East Yorkshire. It is very isolating isn't it. Sorry your dealing with this uncertainty.

Do you have Facebook or an email address?

5

Use the Private Message thing (orange 'Message' button) to exchange webs / facebooks / e-mails etc

6

I have message you both fingers cross I might get somewhere on the 13th at the centre for clinical infections they say they can help, everyone seems to rely on the test even tho it's clinical diagnosis hopefully speak to you both soon.

7

I would STRONGLY RECOMMEND joining the Lyme Disease UK Discussion group on Facebook if not already done so, and talking to the Lyme Disease Action website. They can offer a lot of resources and advice!

8

Hi

I have been ill for 7 years having suffered 2 TIA's and encaphalitis as a result of having Lyme. I was finally diagnosed in 2010 by Dr Timothy Harrower at Nuffield hospital in Exeter incase anyone is looking for a doctor who will test. I paid £190 for an initial consultation and about £800 for blood tests ( it was only so much as he tested for everything) . As soon as I was diagnosed I returned home to South West Scotland as I was so ill and therefore didnt get treated by that doctor , not that I could have afforded it anyway! I thought I would get better after a few weeks of antibiotics as never knew what Lyme was and was just happy to know what was wrong with me!

Since then I have had no luck with the many doctors I have seen here..they still say I have ME even though I have shown them the results from 2010 proving I had Lyme. I now have an appointment with a Rare diseases Specialist in Edinburgh in April so fingers crossed .

If anyone in knows any doctor in Scotland on North England that knows about Chronic Lyme please would you let me know as I am giving up. I have 2 small kids...first got ill 7 months pregnant with my first and would love to be able to do more with them amd enjoy life xxxxxxx

9

The link for the Lyme Disease UK discussion group is linked from here http://lymediseaseuk.com - lots of knowledgeable people in your position will help you

10

Hey guys , I'm Kelly , I've just been diagonised with chronic lyme or post lyme syndrome whatever they want to call it , I first got ill and noticed a bulleye rash in aug/sept 2010 I really didn't think much of it if I'm honest , I've never been one to bother the GPS unless It was persistent thing bothering me , but the bulleye wouldn't disappear so I went to the doctors and showed him and he honestly didn't know what it was , he gave me some cream and off I went , thinking that would be the end of it I was planning my wedding so that was all I thought about I was 28 years old , my wedding day was fast approaching and I noticed that I kept coming out in really big bruises I was exhausted all the time but I put it down to the wedding and I also care full time for my mum whom has multiple sclerosis , I run two households and I have two children of my own , so I put it down to me doing to much .

The fatigue wouldn't disappear and I started to get an awful pain in my right upper arm again I put it down to stress I became very lightheaded at times all I kept thinking was it's all down to the stress of the wedding .

I got married on 4th June 2011 approx 11/12 months after the bite by July I was having body wide muscle twitches everywhere accompanied by tingling sensations , body wide itching (that drove me mad) brain fog , black floaters in my eyes , backache , neck pain , shoulder pain , right wrist was badly affected could barely touch it , bone pain in knees hips etc , a constant feeling of a temperature , sweats , headaches , crushing fatigue , shooting pains , heart palpitations , loss of sensation in my face , and many more .

I went to the my gps as I was extremely concerned I knew it wasn't ms as it doesn't present itself that way , the gp I saw looked absouloutly baffled when I explained my symptoms to him , he told me that in his 30 years as a gp he had never heard of anything like this , he ordered blood work , it all came back normal except I had a high WBC , and liver enyzemes were raised he told me it was proberly down to stress , by this point I was stressed , because I felt sooooooo ill and he just looked at me as if I was mad , so away I went to get on with it .

I went back two weeks later because I could barely get out of bed , my kids and husband were suffering , my mums care I could barely do , by this point I was distraught I explained to another gp all what had been going on he pretty much couldn't have cared less gave me Prozac told me to take them and I would feel better , so I took them the brain fog cleared but all other symptoms persisted , I get a recurring infection that I have to go on antibiotics for so I took them and I started to feel sooooooo much better , so I went to see a gp again , when I walked into her office sat down told her what had been happening with me , I told her I felt better on the antibiotics she looked at me , the most patronising awful look I will never forget , she told me that it was all in my mind that I was feeling better , she said I was feeling better because I wanted to feel better and that it was all in my mind the sooner I faced that the sooner I would get better .

So I left the doctors surgery once again feeling awful , betrayed , I started thinking that maybe it was all in my mind , maybe I had taken on to much and this was the end result , but the symtoms persisted , I even took myself up a&e one night because I thought I was going to collapse , they again sent me home , I was at my wits end , I was desperate , everyone around me was starting to think that I had severe depression and everyone had an opionion ,it was one night when I was laying in bed that I remembered the bite I had , had , I had heard of Lyme disease before but didn't know much about it , so I went to doctors and this time I got a doctor that agreed with me he sent off my blood but told me that it was a very unreliable test , it came back negative but he put me on doxycycline 100mg x2 per day , instantly my symptoms got a lot worse , I realise that this is a herxheimer reaction , which is common in Lyme disease , but as the weeks and months rolled by I started to feel soooooo much better and I have continued to improve .

But I am on the same dosage that they started me on 8months ago I am 75 percent better but I'm not totally there yet , I will let you know how I get on but I have good days and bad days I am recovering slowly , but our testing guidelines and treatment need much improvement in the uk , doctors would rather give us antidepressants then treat us for Lyme disease , I have seen a microbiologist in Winchester but he again is wanting me to come off antibitics and try vit c and salts , which I am going to try , I hope you guys all get the treatment and diagnosise you deserve don't give up we will beat this . Xxxxxx

11

hi kelly

wow it sounds as though you have hit the lyme treatment jackpot ! you are lucky to have a good gp

how did you get to see the guy in winchester out of interest ?

good luck

dan

12

Hi Kelly, your'e doing great. What's the dosages with the VIT c treatment ? and what's the salt treatment ? I am awaiting lyme results having been unwell for 6 months.

13

Omg david ,

I am so very sorry it has taken me so long to reply , did you ever get a diagnosed with Lyme disease and how are you doing now ?

I'm doing much much better im still on antibiotics 2 and half years later im on doxycycline and metronizadole

Lots of herbals to which have worked for me again please accept my apologises for the extremely late reply

14

Hey Daniel ,

I am very sorry it has taken me this long to reply !

I saw Dr Matthew Drysden in Winchester twice !

I am still on antibiotic therapy and am lucky to have a good gp im currently taking doxy and metronizadole plus herbals which have really helped I hope you are ok and I honestly have only just seen this post a year later but wanted to reply anyways

Kelly

15

Hi Gavin ,

This sounds exactly like me 2 and half years ago , I was diagonised in 2013 after almost 3 years of feeling dreadful , poor u I know what it's like .

Persevere with your gp ask to go on doxycycline for say 3 months to see what happens and then if u see an improvement ask to extend the treatment this is what I did im still on antibiotics 2and half years later and I am feeling much better until they pulse me on metronizadole this is a cyst buster when Lyme is in it cyst form it bursts them from the inside out my symptoms flare on what the gps told me is a herx reaction (die off of bacteria from Lyme ) , I really hope you get the treatment you deserve and that someone listens to you .

Best wishes

Kel