has anyone had negative test for lymes then had posative extended lymes panel

hi just a quick update i had the meeting today with GP and my advocate didnt realy have a great meeting but the doctor agreed to giving me 14 days doxycycline 100mg twice a day to see what happens as my results from porton down still havnt come back. im not sure if this amount of doxycycline will do any good though?

Couldn't of said it better cracking advice Caroline xx

hi thanks for both your replies helpfull as ever. im hopeing i get some improvement now. was concerned when caroline mentioned that antibiotics can affect results as i was taking amoxacylin when my bloods were taken! i did ask my GP  at the time if this would affect results and told it doesnt- beyond beleif

Hi Vicky,

You should really be communicating and getting advice from Lyme Disease Action, who liaise with Public Health England. They helped me and they can advise you too. They even offer to communicate with your GP, if your GP is willing to learn more about Lyme Disease.

Caroline x

Hey Vicky , I was 8months into treatment before I was properly tested and they all came back negative , I personally don't think your GP should be focusing on the results of the Lyme tests and like Caroline said defo get in touch with Lyme disease action let them know and then they can liaise with your GP your symptoms alone should be enough for the treatment to continue

Good luck Vicky xx

hi ive been intouch with lyme disease action they have been realy good and i sent them all the info so they could liaise with porton down and look at my results thats how i found out the blood had been lost again. ive emailed them a couple of times over the last 3 weeks to find out if my 3rd lot of blood did arrive there but although they have confirmed my emails i havnt had any answers from them and i cant find a phone number to contact them

I e mailed LDA but they said they couldn't help me as they had too many to help. I am in total dispair.

Hi Vicky,

Firstly, Lyme Disease Action usually take at least 24 hours to respond but they always do.

Regarding you feeling worse - this may be a Herx reaction. Mine was quite severe, but only lasted half a day, then I felt exhausted for a couple of days after that. 

Keep taking your antibiotics. This is very important. I suggest you drink plenty of water. Cut out any sugar or dairy from your diet whilst you're on the antibiotics. 

Look up diets for Lyme Disease sufferers to aid recovery and support the immune system. I found that very helpful. Eat Pro-biotic yoghurt to support the digestive system, which can be affected by the antibiotic treatment. Sleep. Rest. Listen to your body. Avoid stress. Don't drink any alcohol. There's a ton of stuff you can do to help yourself during this stage, it's all on the internet so I suggest take a look. Keep a daily diary and make notes on how many hours you sleep, how much pain you're in (from 1-10, 10 being the highest), energy levels, how you feel, etc.

Keep going, you will turn a corner.

Caroline x

Hi Vicky ,

As Caroline says this is most proberly an herxheimer reaction , when you have been left undiagnosed for so long with Lyme disease the herx can be very powerful and last weeks months even mine did , every time I took antibiotics i herx even to this day , yes it's not as bad now days but back then it was awful hun , you will get worse b4 you get better hun , your recovery will take a while hun but there will come a day when you start to feel better , detox is so important drink only water , no caffeine.or carbonated drinks , losts of fresh fruit and veg go organic wherever you can , lean meats and eggs not fried , no artificial flavours or colours , herbals and vitamins so important to your recovery , I can't stress to you how important the detox is , you will get there in the end

Best wishes kelly .

thanks for your reply lyme action have just emailed me back to say the delay was due to the fact they were trying to get my results  ( still not tested) anyway i will try to keep going with doxycylin and diet just hope theres some kind of improvement soon feel at deaths door even before stating antibiotics!!!

thanks for your ongoing info and support im going to carry on with the doxycylin and ive ordered a book on detox diets ive also ordered a book about natural ways to fight lymes. lymes uk have emailed again to say they are getting intouch with porton down to see if the immuno blot and extended lymes have finaly been tested my bloods were originaly taken and sent to lab 26th jan! i should take bets on here to see who thinks theres still no results,they have not done the full test or they have got lost again and then the big one there all negative! lol

Hey Vicky , it's not a problem happy to help if I can in any way .

Don't rely too much on these results on the basis of your symptoms alone it should be enough for a Lyme disease diagnosis from a healthcare professional , your doing everything you can , it's going to be a long road but you WILL get there .

Good luck . Kel

hiya just an update, ive had 1 result from porton down c6 negative. lymes action are finding out for me if the extended lymes panel test has been done. im 10 days into the 2 week doxycycline course its been though feel terrible my gastritus has flared up stomach has been really bad and ive struggled to eat anything also now got bad oral thrush tonge has actualy turned black. ive had to get pills for fungle infections and stronger pro biotics. i think because i havnt improved at all with antibiotics my GP isnt going to give me anymore if that happens im going to ask to be refered to an infectious diseases specialist

Awww Vicky , it really is tough the antibiotics are really hard on the stomach I was sick quite a few times with mine , I ate before I took doxy because it just made me throw up or have diarehha , I too felt awful so awful I had pain throughout my body symptoms flared I learned that this was a herx a die off of bacteria the antibiotics were working , but antibiotics alone will not cure a good detox diet and variety of vitamins have helped me alone the way , don't give up with the antibiotics yet see if you can do another 2 weeks with your GP or switch to a different antibiotic if you really can't handle the side effects hun ,it's not easy I know! they choose doxy as its good as crossing the blood brain barrier i really hope you get a positive result but the testing is so poor I wouldn't worry too much if it's negative , defo see infectious disease specialist I wish you the best of luck

Xx kel