Bulls eye bite/rash

Hi, 

Thanks for replying.

I live in Dorset (South west England).  I'm new to all this, but have read on other threads about being tested privately, are these tests more reliable than the tests run by NHS/ your gp?

Sounds like you're really suffering, it's such a waste isn't it? Feel for anyone who can't enjoy life properly because of such symptoms.

I'm suffering mainly with total exhaustion, I have a 17 month old little girl and my partner is having to take a lot of time of work, some days I literally can't get out of bed, the exhaustion is unbearable and I ache so much, didn't realise headaches are a symptom too, I get incredibly bad headaches, kind of living of pain killers at the moment.

I'm heading to GP tomorrow to see what he says, but worried about being dismissed or tests not being accurate. I would love to feel like a normal young person again! 

I did a serum lyme test a few weeks ago but was negative. Apparently they aren't reliable as they only pick up 30% of new infections and can't pick up on chronic lyme. I have been told the only test is the lyme and co - infection panel which is western blot and much more accurate but expensive. I have been to see many docs in UK with no help at all. I told my insurance to test for lyme but they laughed and said I wouldn't have lyme. don't be too upset if your doctor ignores what you say - all mine have. They used to tell me it's all in my head but the hyperthyroid diagnosis stopped that. Now they just blame it on thyroid. Doctors are mainly arrogant and useless

I'm dreading going to see him but I can't go on like this. I do have health insurance, so I'm hoping if I can persuade my doc to give me the blood forms I can make a claim, I'd pay out my own pocket to have it done.

It took so long for people to take me seriously with my thyroid, I'm dreading trying to try and get taken seriously about Lymes, my sister had to explain to her doctor what is is, they're so useless.

My endocrinologist has given me blood forms for all sorts, it's crazy. I'm 21 and feel like a 90 year old!

I do have private health insurance and can probably afford private testing and treatment, can't put a price on feeling normal again (if it is lymes).

Just confused as how to go about being treated privately etc. my doctor is usually very good, guess there's only 1 way to find out.

Will take a look at eurolyme, need to try and get a better understanding of all this. 

Hi Bethany, 

Yes ONLY Lyme cause a bulls eye rash. I asked a doctor this last month at the hospital of tropical and infectious diseases in london. He said Yes by no doubt it IS lyme if you have/have had the rash. You must be treated with Doxicillin, they will give you 2 weeks. All GPs in uk received a memo in may this year regarding Lyme, stating no positive blood test is needed for you to start receiving treatment.  You will probably need more than the two weeks they give you. You can buy further tablets from lloyds pharmacy, as an antimalarial drug (destination Goa) and this will keep you going until you can investigate further regards private treatment. Please be selective of people's views online, everyone's situation is different and don't let it get you down. I don't normally go on this site but your post popped up in my email, and felt compelled to write. My boy is 19 months and it is so hard to be the active mum you want to be. But you'll be fine. It might be a long road to rid yourself of all symptoms but little by little you will return to your old self. Good luck and all the best xx

Thanks, now I know that I can be sure I need to have the tests done ASAP. My doctor has written a blood form for me, I'm going to see what it comes back as and if it's negative I will try this western blot test that is meant to be more accurate.

I'll get there eventually, it's just difficult because I know so little, don't really understand where a lot of doctors were educated but I'm starting to feel like researching things for yourself is the only way to give them a kick up the ***.

Not having enough energy to be super mum is the hardest thing for me, I hate it.

Thanks for your advise

I agree, the self education that is clearly needed is hideous. But very necessary. Did you join the FB group Lyme disease Uk Discussion? It's a useful forum for a quick query, and a variety of replies. Very helpful is  document compiled with reviews from the group members about private docs around the world, especially Germany and American clinics. They are pricey, so if you feel this becomes necessary in the future, best to make sure you read reviews before signing up to an expensive treatment plan 

The general consensus is to leave a space of 4-6 weeks after your last penicillin cure, before you take new blood tests. 

I have just finished four weeks doxicillin, and am now 'on my own' until the review in 2 months at london hospital of tropical. I know two people (friends of friends) that have had lyme and have now been fine and healthy for many years, so it's not all doom and gloom. Keep the spirits up , and all the best wishes to you and your family. Xx

Thanks, I have emailed County Pathology. That's great. 

Does anyone know if anything other than Lyme Disease (bar ringworm) could have caused the bullseye rash that appeared on my ankle? Or is that pretty much a definitive sign of Lymes?

My sister is convinced that my nephew was prem and has growth problems because she carries him whilst having Lymes, I'm now petrified that if this is possible it could have affected my little girl, anyone aware of any truth behind this?

Thanks in advance, I'm at a complete loss of what to do!

Hi Bethany, sounds like lyme disease judging by symptoms. You may also want to contact LDA (lyme disease association UK) who were extremely knowledgable and helpful. Often they can cite studies with regards to lyme you can take to your GP. I have read lyme can be transferred to the foetus. Ask the LDA, they have so much reliable info.

I'm 90% sure it is Lyme Disease but the only thing that makes me wonder is the rash was itchy (but it was on my ankle and I tend to itch as soon as I see a rash/bite and irritate it) and apparently with Lyme disease the rash wouldn't itch? The rings were really obvious too and makes me wonder if it was ring worm, but I never treated it, it just went after about a week.

I've tried to find LDA on google with no luck, found a website called Lyme Disease Action, is that it?

Thanks

Apparently it can cross the placenta as one lady I have spoken to has lyme from years ago reawakened by steroids and her children have it too.

I also worry if I have it from years ago as I have suffered from vertigo for 17 years. I only became ill 6 years ago when I was given a steroid shot and all hell broke loose. My daughter complains of some of my symptoms and gets very breathless and faint and has to lay down in sports. She is 13 now. When I had her I had pre eclampsia and i ended up with c - section at 38 wks and my body went into shock.

I rescue cats and dogs and many have had infestations of ticks so i could have been bitten. I remember having huge swollen itchy bites but can't remember bulls eye. Could have been bitten on my head and never know if it's bulks eye under my hair.

i have read reports that lyme is becoming an epidemic now days so i suppose it's always worth checking. Best of luck

My little girl seems fine at the moment, had a good pregnancy and birth but suppose I'll have to wait to find out if I have it first.

Sounds like you guys need testing too, it's such a shame we struggle so much with the NHS, so difficult.

All the best to you both

Sorry, one more thing...the gp will prescribe you 200 mg a day of doxicillin. If you choose to self medicate by a further two weeks, many sufferers of lyme recommend a higher dose. Just a word of warning if you are of slight build.. The dose which is believed to be safe is 4.4mg per kilogram of body weight. 400mg, as many people on chat sites recommend, might not be considered safe for most women.  It is one you'll have to weigh up, excuse the pun. Tablets come as 100 mg each. The gp will give you two tablets a day. I chose to continue on 3 tablets a day for the further two weeks, as felt 400 mg was a bit heavy.  Just to keep in mind. X