Could this be Lyme?

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pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/3/2010 9:06 AM (GMT -6)   
Hi I live in the UK am 54yrs old and am in need of some advice please, a couple of months ago I had a bad experience whilst out walking, I felt so so dizzy and had tingeling in my face and my lips felt numb I thought I was going to faint but managed to get home ok, I was worried so put my symtoms into my computer and a number of sites appeared, most of which mentioned "Lyme Disease", having never heard of it I checked it out, as I read on and on I realised I was reading about everything I was sufferering and had been suffering for over 2 years, I will explain in brief , May 2007 I moved into a house that was surrounded by woods and meadow land, my garden had no fences and it just rolled into the meadow area, Deer where a regular visitor particularly one Deer who even would venture into my garden I loved this, we also had lots of squirrels and other wild life, june came and and so did our devastating floods, we where lucky and was not affected at our home. just around this time I was bitten on the leg by what I assumed to be a Mosquito, I was suprised as they do not normaly bother me, the bite developed into a red ring type mark , exactly as the Bullseye Lyme symtom, this lasted a good few weeks, eventually I visited my Dr who gave me antibiotic cream, after a short while it began to disapear yet I still had a tiny scab in the centre thanks to me picking at it it came off, I was suprised again by how deep this little scab was, it left a very small clean hole in my leg, from then on I have suffered such pain in my hands particulally my thumb joints, my elbows, knees, aweful pain in my neck muscles, back muscles, and my arms seem to have muscle waste as they are not as shaped as they once where and always feel numb and tingley, I don't sleep well, the list is endless, I am so sure this is Lyme but am nervous about telling a Doctor for fear of being thought of as stupid, can you tell me what you think and do you know of any UK Dr who I could confidently approach. can you help me please I am worried.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/3/2010 12:24 PM (GMT -6)   
Hi pidsea73,
Sorry you are not feeling well!! Welcome to Healingwell.
A bulleye rash is a sure sign of Lyme disease. You should know the testing for Lyme disease is very inacurate. Lyme disease is a clinical diagnosis. You need to see a doctor that specilizes in treating TBD "tick born diseases" We call them LLMD "Lyme literate medical doctors" There are a few of them in the UK. Here are a couple of web addresses to find a doctors referal.

Please read the "new to lyme" .......start here post at the top of our forum page.

ilads.org

turnthecorner.org

Best wishes

pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/3/2010 12:48 PM (GMT -6)   
Hi Cheezhead
thank you so much for your reply you have been really helpful, I will check these sites out and hopefully find a doctor I can contact, I did ring my own Doctors today and asked if I could book an appointment to see a Doctor I asked the receptionist if any of the Doctors on the practice where familiar or had experience in Lyme Disease, she was most unhelpful ans said that all the Doctors there where well informed on everything, I informed her again that this disease is not well recognised in the UK and could she not enquire for me who would be the best Dr ,no she could not just to take what ever Dr is available, I was so disapointed by her lack of interest that I did not make an appointment, however I will make further enquiries tomorrow as I really need to sort this worry out.
Thank you again
Kind Regards

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/3/2010 1:05 PM (GMT -6)   
pidsea73,
We all wish that all doctors were truly knowlegable about Lyme disease. However this is just not true. Most doctors will only treat you with a course of ABX "antibiotics" for a period of three to four weeks. If you are not well after this time many doctors will insist you are cured and will no longer treat you. A LLMD has a much better understanding about this disease, and will treat you until you are well. You should know there are only a few LLMD's in the UK and you may need to travel.

best wishes

pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/3/2010 1:54 PM (GMT -6)   
thank you Cheezhead
I am willing to travel, I would rather that than get the wrong treatment, I have emailed Turnthecorner asking for help in locating a Dr here in the UK, so fingers crossed they can assist me, that will be thanks to your response to me I am most grateful and will update you when I have any further info.

Best wishes

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/3/2010 2:05 PM (GMT -6)   
Hi pidsea73,
I too am in th UK and suffer with LD. To start with you must get your GP involved, if he doesn't know anything about LD make sure you do know, if you really suspect LD is the problem you will certainly have to go to a private LLMD eventually as the guidelines GP's follow for LD over here are wholey inadequate. You will probably be sent to Rheumatologists and Neurologists to begin with, the GP will send blood to be tested but don't be suprised if they come back negative for LD, but becareful, if they do come back negative your GP may try to dismiss LD totally. What you are really looking for is a referral to an LLMD, my LLMD is in Hemel Hampstead at The Breakspear Medical Group, you can find these on the internet. From the experience I have had they understand LD and treat it as it should be treated. Don't be shy though with your GP, it is possible they may find some other reason for your symptoms, treat it and cure you.............wouldn't that be great. If not ask for the referral as I don't think you will get in to Breakspear without one. Here's the bad news......it costs a fortune. You have to pay for everything a private hospital prescribes, but if you have got LD, and feel anything like I did it's worth every penny as I am now on the mend.

If you want to know any more about the UK channels I needed to take and the brick walls I encountered feel free to ask. I'm certain you'll find answers to most of the other questions you have on this forum.

Good luck.

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/3/2010 4:15 PM (GMT -6)   
I've been instructed by my wife to re-phrase the last part of my message. She said that "on the mend" sounds like I'm doing great, well sorry if I mis-led you as I'm not that well at all most of the time, but some days I feel a lot more human than when I first started this journey; and it's thanks to the ABX.

Cheers.

pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/4/2010 5:47 AM (GMT -6)   
Hi Mikazmat
thank you for you reply, and I am so sorry you are not feeling good, I really hope this treatment gives you a full recovery.
I rang a Dr Andrew Wrights clinic in Bolton Manchester this morning asking advice on LD he is an LLMD, I only rang that particular clinic just for the reason it is the nearest to where I live in the Hull area,I was quoted just for starters £ 32 blood test kit, and then £100 telephone consultation, I had to just say that I would need to speak to my husband first as we don't really have the means for to be able to afford this kind of outlay, but then what do I do ? do I just get worse or do I rely on my own GP which is another worry, I just don't want to be given the wrong treatment and to be told as I already have that its Arthritis etc, oh its a difficult thing to sort out.
How long had you had LD before you where diagnosed ? I had the bullseye rash nearly 3 yrs ago, the reason I can be so accurate is because I know it was a few weeks after the floods here, and of course thats a worry that time is passing and I wonder what stage I am at with this thing.
thank you again

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/4/2010 9:19 AM (GMT -6)   
Hi and welcome to the club. Thanks for the words of encouragement, some days I really need it. I was bitten in southern Hungary in Sept 06, I had the EM rash three weeks later. I visited my GP and he gave me 3 months of Doxy 100mg twice a day for three months. The rash went and I didn't at all feel ill......then I forgot all about it. It resurfaced 5/6 months later with arthritis pains in my shoulders, neck and hands then from there it was all down hill, not only for my health and sanity but it became a battle between myself and the medics. I don't know where Dr Wright would send the blood but if it is a UK lab it will propably go to the facility in Southampton. I had 3 ELISA tests that came back neg from there, once there is a neg result, the guidelines followed by Dr's (in my case) in the UK automatically seem to put you in the cuckoo cupboard. The blood tests often come back neg and no medic I've had dealings with seems to want to except this. I was so desperate for a diagnosis I opted for a Westernblot that was sent over to the USA, I don't want to frighten you but to test for LD, babasia and Bart cost a few pounds short of £600.00. There is little understanding here regarding LD and all it's mysteries, you unfortunately are going to have to fight for yourself and pay up, the NHS was quite willing to allow me to suffer. If you approuch your GP he will send your blood for an ELISA, talk to him and tell him what you think it is, but do your homework and read up as much about LD as you can take in, so you can show him you're not stabbing in the dark, convince him you know what you're talking about.

I'm sorry but if you do have LD the £100 phone consultation is the tip of the iceburg, in 6 months it's cost my family the best part of £2000, also remember that although a private hospital will help with the treatment they are also a money making business, be careful. But sadly, if you think you have LD there is not much choice for you. I know how difficult it is to make decisions when you feel so bad, but these are my experences and just maybe your GP knows what he's doing regarding LD but I'm sorry to say that when it comes to treating LD, as it should be treated, you will have no choice but to go private.

I have only just recently started to post on this forum and you can read a summary of my story on page 2, it's entitled "Thanks to You All". It's my introduction and my feelings of total gratitude to the great knowledge of members here. When I first read the posts on here I could almost have been reading about myself, with this and reading every scrap of information on the internet I could absorb is what convinced me to fight for a diagnosis.

Good luck. Mik

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/4/2010 1:30 PM (GMT -6)   
mikazmat,
Thank you for responding to this post. It's great when a UK member can help another UK member out. I agree with you that you should always rule out other conditions such as auto immune diseases prior to treating Lyme disease.
 
Trust me your American cousins on this side of the pond can relate with you on the costs associated with seeing a LLMD. Even if you are fortunate enough to have insurance here, it still does not cover what they deem "experimental" or unnecessary treatment. Many times seeing our GP is not covered for one reason or another. I myself have purposely avoided seeking treatment from time to time in order to avoid finacial ruin. Truly sad
 
One thing I would ask you both is to please do not post your LLMD full names here. Use initials here, we want to protect our doctors. Please use private emails when discussing full names and locations.
Thank you
 
Hope your feeling well

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/4/2010 3:06 PM (GMT -6)   
Yeah, sorry Cheezhead I should have thought about the name situation, I've been reading this forum for long enough to have been more sensitive to the issue. Over this side of water the system obviously works slightly differently to yours as the few LLMD's there are openly advertise their skill and knowledge on the subject (and the price tag). But I fully understand your concerns and will refrain from repeating the error.

"Truly sad" is a statement I often use when I recieve the invoice for treatment. I sometime wonder if I could manage without the treatment in order to save the scanty income I have, but the answer is always no, I couldn't go though the bad times again.

Today I'm fine thanks I hope you are doing well.

pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/5/2010 4:29 AM (GMT -6)   
Hi Mikazmat
I read your story and bless you you have had such a tough time of it, the lovely thing is you still have a sense of humour which is a true sign of a real trouper, you I am sure are a true inspiration to people with LD, I thank you for your helpful word and for making me feel welcome on this forum, I will be back to update you on my next step with this, I am very confused as to what to do and how I can sort out my situation, I spoke to my daughter last night and I got a bit tearful I am affraid, she is as it turns out a Doctors Receptionist (not my Doctors ) she is going to have a word with one of the GPs there who she said is a gem and ask if he knows of any GPs in our area who might have experience of LD, so fingers crossed I may get lucky who knows, I will find out this afternoon and let you know the outcome of her conversation with him.
Hope you are having a good day

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/5/2010 6:40 AM (GMT -6)   
Hi pidsea73, you need to see your GP and tell them your fears regarding LD. I'm sure he/she will send blood to be tested. If it comes back poss then there's your answer but please don't dismiss the result if it comes back negative. Your problem will then be that your GP will dismiss a LD diagnosis and you will be no futher forward (unless of course they find something different) please read up as much as possible because the GP will probably know very little and not take you seriously enough. I found a big problem before I had treatment was my mental state, this makes it very difficult to talk to and explain to people exactly how you are feeling and what the problem is. I found the best thing for me was to write a diary of my symptoms, how I was feeling and then I could look back to remind myself as over time - one sympton will pass, another will take it's place, and you will forget to mention it. So it might help you in the future to keep a diary. I also and record my daily temperature, you'll be surprised how much this will fluctuate, usually mine very low (34.5) when I'm having a rough day, but record it for future reference and cycles. I'm affraid (unless you are lucky) it will be you educating the medics.

Today I'm ok thanks and I hope your day is the same. Mik

pidsea73
New Member


Date Joined Feb 2010
Total Posts : 16
   Posted 2/5/2010 6:58 AM (GMT -6)   
Hi again Mikamat
I will def take you advice of a diary, and you are right as one thing goes another replaces it, I am lucky that my mental state has so far been ok except for the odd bout of forgetfulness names and what was I doing a moment ago, but hey great news, my daughter rang me earlier with some hope, she emailed my symptoms to the Doctor not mentioning at this point LD, she just wanted to see what he came up with, and low and behold he said it sounded to him like LYME DISEASE !!!!! wow how about that, he also advised I go to my GP and explain and ask to be refered to a the infectious disease Specialist here in hull he thinks he is call Mr Moss, I am happy to be aknowledged at this early stage, so next Wednesday I have an appointment with my GP, I feel a little more settled that I am doing something now, I will as you say arm myself with as much info as possible, thank you again you have really helped me, I will keep you posted.

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/5/2010 12:59 PM (GMT -6)   
Hi pidsea73, a good start........I hope he can help and guide you. Good luck.
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