posted
hi really need advice for my husband .he contracted lymes disease in 1990/91.he was left undiagnosed for nearly three years to which i think it has left him with ongoing illness as such .i cannot get anyone to take me seriously he has constant pain in his limbs headaches eye pain nausea sore throats disturbed sleep if any he is constantly moving his legs/arms to find a comfortable position to sit/lay when he comes home from work these are just a few of a list of ailments .he has to take high dose of pain relief wich do not work this just gets him through the door of a morning to work.he got bitten not by a tick but a huge flying thing not unlike a dragonfly whilst in spain.this caused a swelling in his right arm and actually confined him to bed for three days then on returning home a strange rash appeared which looked pinky/red and scaly and it also used to move to different areas of his body when exposed to light ie, it went to the armpit and the groin area this went on for a couple of years until i persuaded the doctor to send him to a specialist a dermotologist here where we live .he said it was the worst case he had seen and even took photos for their medical journal great for them no help to my husband.he was then given antibiotics lamisil which seemed to help but as the years have gone on he has become unwell with joint and muscle pain the headaches are getting worse to which he is having a brain scan tommorrow and i am convinced that it is long term effects of the lyme .i am sorry to go on for so long. am i totally barking up the wrong tree here can anyone advise we would be very grateful many thanks.
Posts: 8 | From west yorkshire england | Registered: Nov 2007
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I gather he has a confirmed case of Lyme so you need to track down a Lyme specialist.
I'm not familiar with the availability of Lyme doctors in England, but I would imagine that there would be plenty. I'm sure someone from these boards can privately message you with help in that regard.
If your husband was infected with Lyme for as long as you say, he will need heavy duty Lyme medication--antibiotics and anti-cyst meds...so the first step is finding a Lyme knowledgeable doctor who can advise your husband properly.
These boards are an immense help too.
-------------------- "Whatever can go wrong will go wrong." Posts: 36 | From Connecticut | Registered: Oct 2007
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Emily, there's the Eurolyme forum, that is based in England, lots of people sick with lyme there and they can help you finding a doctor there.
But lyme specialists are still rare in Europe.
I found my specialists in Switzerland and Germany through lymenet, though!! But they're totally alternative, so if you're looking for conventional treatment, my guess is that Eurolyme is the best place to ask.
Good luck in finding help! Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hi, Emily -
I just sent a private message to one of our members who is from the UK. His Username is ChrisBtheLymie, and he is seeing one of the best Lyme docs in the UK (from what I've heard).
He hasn't posted anything here on the board since the last of October, so I have no idea if he is available. But hopefully he will get an e-mail message and be advised that you are looking for some help!!
I thought I had Chris's doctor's info written down on my list, but I don't.
Emily, many of us with Lyme have trouble reading unbroken text. Could you please try to type between 2 and 4 sentences, and then hit the enter key a couple of times? This puts some ``white space'' between small blocks of text, and we can read it more easily. Thanks!
Meanwhile, Selma had a very good suggestion about checking in with the Eurolyme group.
Hang in there! We've all been in your situation.... not knowing exactly what to do. You are going to find the help you need for your husband.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
Unregistered
posted
welcome emily to the board; glad you found us.
following up on tracy's suggestionn on editing your post so we can read/comprehend it, here are the instrctions to do so ok!
welcome to the board. majority of us here are neuro lymies and can not read long, solid blocks of text like you posted.
would you kindly edit your post by clicking on PENCIL/paper ICON and then break it up in 3-4 sentences unless you are a wordy person, then 1-2 sentences MAX! Also, do NOT breakup a sentence!! Thanks!!
hit the enter key twice after EACH paragraph as we neuro lymies need this to comprehend and read what you/others post. do this until you are all done ok.
then go to lower left hand corner and mark box to receive all replies to your post.
click edit send; done. THANKS. please do this on all posts/replies. otherwise, we may SCROLL ON BY, SOB, without reading/replying. it's your choice. for me, i just SOB them; too hard on me.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
There is a Lyme doctor in Wales!!! I will pm you his name!!! I don't know anything else other than that but your husband needs help- bless you for hanging in there with him!*)!!!
Will PM you- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Emilyr,
I have neurological Lyme and I'm breaking this up so I can read it. I hope you don't mind.
quote:Originally posted by emilyr:
hi really need advice for my husband .he contracted lymes disease in 1990/91.
he was left undiagnosed for nearly three years to which i think it has left him with ongoing illness as such .
i cannot get anyone to take me seriously he has constant pain in his limbs headaches eye pain nausea sore throats disturbed sleep if any he is constantly moving his legs/arms to find a comfortable position to sit/lay when he comes home from work these are just a few of a list of ailments .
he has to take high dose of pain relief wich do not work this just gets him through the door of a morning to work.
he got bitten not by a tick but a huge flying thing not unlike a dragonfly whilst in spain.
this caused a swelling in his right arm and actually confined him to bed for three days then on returning home a strange rash appeared which looked pinky/red and scaly and it also used to move to different areas of his body when exposed to light ie, it went to the armpit and the groin area
this went on for a couple of years until i persuaded the doctor to send him to a specialist a dermotologist here where we live .
he said it was the worst case he had seen and even took photos for their medical journal great for them no help to my husband.
he was then given antibiotics lamisil which seemed to help
but as the years have gone on he has become unwell with joint and muscle pain the headaches are getting worse to which he is having a brain scan tommorrow
and i am convinced that it is long term effects of the lyme .
i am sorry to go on for so long. am i totally barking up the wrong tree here can anyone advise we would be very grateful many thanks.
A few questions:
Was he actually diagnosed by a Dr. as having Lyme in 90/91?
Did the bite in Spain have anything to do with the Lyme you said was contracted in 90/91?
The dermatologist said it was the worst case of what?
Lamisil is for nail fungus & is not an antibiotic. I'm confused as to whether you were saying he was given Lamisil as an antibiotic.
If you could answer these questions for me maybe I can try to help.
Thanks, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I am in the UK (Kent) and we have 2 or 3 LLMD's here who I am sure can help your husband. I will PM you the details of the doctors with links to EuroLyme, etc.
Chris
Posts: 263 | From UK | Registered: Mar 2006
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posted
This site amazes me still!!! Look how quickly this family received the answers and directiong they so desperately need.
THIS is the reason for us all here!!!!!
I am grateful to be a part of this...
Good luck Emily!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
hello to you all many many thanks for taking the time to reply to my request. sorry i rambled on . it feels so good that people believe you . i hope i am writing this okay for those of you who need the words split up. this is all new to me. in reply to ali ( i think that is right) lamisil/terbinafine tablets were given first as a treatment and the blood test confirmed lyme. the dermatologist here in pontefract england also confirmed lyme in 93/94 . then about 6/8months ago he was given a short course of doxycycline and takes zydol and amitriptyline for the pain which does not work. thankyou again to chrisbthelyme californialyme(have tried to pm you to thankyou but it wont send sorry)and bettyg too .all the contacts and info will b used and my lovely husband might just get some help. am i right in thinking it is thanksgiving day for you all ? hope you all have a lovely time i hope you will allow me to join you again let me know if the way i write is too much to see in long lines if that makes sense?
Posts: 8 | From west yorkshire england | Registered: Nov 2007
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