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Lyme disease - antibiotics didn't work

Posted , 25 users are following.

l221176
l221176

Hi, Im just looking for a little advice or if anyone has a similar experience.

Three and a half weeks ago I discovered a tick attached inside my belly button. I had most probably picked it up three days before when I was walking in a forest. Due to where the tick was i was not able to remove it myself so had to attend the local minor injury clinic where it was removed. A few days later I started to feel very unwell - swollen glands, aching muscles and joints, severe headache and light and sound sensitivity. I went to my GP who prescribed a two week course of doxycycline. After starting the antibiotics i felt much worse and developed other symptoms including the round rash, red swollen eyes and numbness in my face and hands. I completed the antibiotics then returned to the doctor last week who told me it was now post-infectious so further antibiotics would not be helpful.

I still feel very achy with sore joints and nasty headaches. Im also incredibly tired and have been sleeping for about 16 hours in every 24.

I was hoping to return to work this week but I am totally unable to function properly.

I was just wondering if anyone had a similar experience or if there is anything I can do to start feeling better? Also, after antibiotic treatment how long did it take others to start feeling better?

Any information would be fantastic!!

1 like, 22 replies

22 Replies

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  • bob73443
    bob73443 l221176

    Posted

    Laura,

    My wife is a long-time sufferer of Lyme and associated parasites, but she went undignosed for a long time before she started medications -- and therefore needed much longer treatments.

    Your case is different because you jumped on it very quicky and the antiboitics should have worked -- unless you were co-inflected by another organism.  Lyme often comes with other parasite such as Bartonella.

    What did the doctor say was the cause of your continuing symptoms?

  • caroline91964
    caroline91964 l221176

    Posted

    Hi,

    Sorry to hear you're still feeling unwell. 

    I caught Lyme Disease last July and was diagnose 3 months later and put on a 28 day course of Doxycycline.

    Like you, I felt terrible after 7 days of taking the Doxy and I believe this could have been a Herx reaction (you can read up about this on the Net). It was only on week 3 of taking the antibiotics that I began to slowly feel better every day. However, nearly 1 year on I'm left with the occasional twinge or ache in my right elbow joint and I still feel quite tired in the late afternoons.

    You were proactive and sought medical help early, which is brilliant. So many people ignore a tick bite.

    Your GP also made a clinical diagnose and prescribed a Doxycycline course immediately, which is great, as so many people with Lyme Disease are dismissed or misdiagnosed. 

    At the moment, there is no unified national pathway to treatment for patients suffering with Lyme Disease. This means that one GP may prescribe 2 weeks of Doxycyline and another will prescribe 28 days. 

    I suggest you take a look at the Lyme Disease Action website, which is a recognised source of information and who liaise with Public Health England. If you want to, you can email them and they will respond to any queries you have. I found them invaluable when I was ill.

    Continue discussions with your doctor. Keep a daily diary and rate any pain you have from 1-10, 10 being the worst. A diary is very useful when you're talking with your doctor.

    Don't expect to feel 100% well for many months. It can take a long time to fully recover and you may be left with aching joints and fatigue, although it will improve with time. This is my experience.

    Did you take a photo of the bulls eye rash when it appeared?

    • kaitlynsmith
      kaitlynsmith caroline91964

      Posted

      Hi Caroline,

      I know this was posted over a year ago..  I'm just hoping you still see this. Around three months ago I had a red ring/rash on my hip. I waited around 4 days to see if it would go away.. but it didn't. I went to the doctors and he and another doctor looked at it and told me it was a tick bite and he presribed me 3 weeks of antibiotics (amoxicillin) which I took 3 times a day. After about the 2nd day i felt much better. And after the three weeks I felt like myself again. Which brings us to now, three months later. I started having the same symtoms as the last time. (Headaches,tired,dizzy,anxious,very foggy, things didnt seem clear and I cant seem to concentrate.) No rash this time or mark. My guess is that its just coming back from the first time because the three weeks on amoxicillin wasn't enough. So I went to the ER they did a CBC blood test and everything came back normal. I knew something was wrong. So I went to another ER and they did two blood tests for lyme.. A few days later they called me with my lab results and it was positive for lyme. Which I pretty much already knew from a few months back with all the similar symptoms.

      So this time they prescribed me 30 days worht of doxycycline and I take it two times a day. ( 100 mg).  A lot of my terrible symptoms from the lyme have gone away. I'm always pretty tired but that could also be from the medicine. Today will be the 4th day that I'm on it.

      My question for you is, did this treatment work well for you? Sounds like you are on it just as long as I am. And I'm getting treated pretty fast because this is all recent for me. My worry is, is this going to keep coming back every few months? Or is this antibiotic good? I asked my doctor if I could be put on longer because the last time i was put on for 3 weeks it came right back a few months later. And she told me this should be fine... I really just need your advice...  I hope you see this.

      Thanks, and I hope everything worked out for you. And everyone on here with lyme.

      -Kate

    • katielaine105
      katielaine105 kaitlynsmith

      Posted

      Hi kaitlyn,

      I'm being treated with doxycycline for early Lyme also. I'm only supposed to have 21 days worth though. I'm very worried that 21 days won't be long enough. I didn't get started on the meds until 3 weeks after my tick bite. It was on my head so I didn't see a rash and didn't go seek treatment until I started feeling bad. How are you doing now? Any advice? I would really appreciate any information you can give. Thank you, kat

    • deer246
      deer246 katielaine105

      Posted

      Hi katie how are you getting on? I have just started doxy too! I feel so tired!! What dose are you on? I was given 100 twice a day but I have increased it as from my research it seems that going in aggressively is better at this stage. 
  • l221176
    l221176

    Posted

    Thank you for your quick replies.

    The doctor said my continuing symptoms were 'post-infectious lyme disease' and could become chronic. I think he is under the impression that because I have a suppressed immune system due to other health issues and medications that the lyme progressed more quickly than it usually would and that is why the antibiotics haven't cleared the symptoms.

    I have now spoken to him again today and I've to got blood tests to check for secondary infections such as glandular fever and also to check my bones.

    I cannot fault the doctor at all, he has been very thorough and started treatment straight away, even though the rash had not appeared yet. Unfortunately I did not take a photo when the rash appeared.

    I will have a look at the lyme disease action website and start to keep a diary too.

    Thanks for both of your suggestions 😊

  • rebecca86537
    rebecca86537 l221176

    Posted

    Your doctor is very inexperienced about tick borne diseases and incredibly naive.  He is setting you up to fail by only giving two weeks antibiotics.  He needs urgent training.  Tell him to contact ILADS in America or better yet go see an ILADS doctor yourself. The Ilads society in America should be able to give you the details of UK or European based ILADS trained doctor.  Tell your own doctor to attend the ILADS conference in Augsburg Germany this month.  You need to be checked for bartonella (another tick Horne infection) considering your symptoms and treated with a bartonella specific antibiotic in addition to ongoing Lyme treatment because two weeks doxy is not sufficient.   I would not trust this doctor they mean well but he doesn't know or understand or could be following CDC advise or gov advise, which is wrong- if you have the money ring the Brakesphere clinic in your country and pay to see them urgently. They are experienced in tick borne disease and know how to treat it.  They are also updated about the science, which your doctor clearly is not.  Tell them the bite is recent and about the rash and symptoms, because there is still chance they can save you they will attempt to get you in sooner. (Usually there is a massive wait for appointments). Do not make the error of presuming this is not serious or it will go away.   I know you're tired and exhausted but you have to take your health seriously.  Ps even if your granular fever comes back positive you'll be one of thousands of Lyme patients that have active glandular fever in addition to Lyme and bartonella and God knows what else.
  • l221176
    l221176

    Posted

    Hi again guys.

    I thought I would just post a little update of what's been happening. So I finished the treatment the doctor prescribed and actually became more ill. My joints inflamed, burning sensations, tiredness etc

    I was finally referred to a specialist who i saw on Friday. I still have lyme disease. Mri shows swelling in my brain, high spinal pressure and extensive nerve damage down my spine.

    They wanted to do a spinal tap to remove fluid but unfortunately I cannot have one due to a history of spinal leaks. The doctor said the problems I currently have are not fixable but they need to prevent further damage so the only option is iv therapy. I have chosen to have this done at home as opposed to being admitted into hospital for such a long time. They plan on doing minimum of one month treatment.

    I was just wondering what experiences everyone else has of this treatment? How do you feel whilst on it? Also, is it done with a picc line usually?

    Any information would be great - i am rather nervous and expect to hear from the doctor tomorrow about the date it will start.

    • marion1701
      marion1701 l221176

      Posted

      Hallo there, i am from South Africa. Last year January i was bitten by a tick on my ankle. It immediatetly started a rash. The dr prescribed Doxycyl ( 1 x 100mg per day) the small rash got a little better and disappreared on ocassion. After 3 months it was back, and i repeated the meds. Still the rash would come and go.... In sept the rash spread to the rest of my leg. At this time i was wandering if it could be Lupus (SLE). In november and december i was sweating extreemly! My Gp then prescribed Klacid XL 500 mg. Only when i combineend it with Predisone, did the rash go away - when the Klacid was finished, the rash returned. I then went to the specialist who put me back on Docycyl 100mg twice a day. My rash gets more red and itches alot! 1 year later after taking anti b 5 times, i stll dont feel well and i am worried its spreading...... Did you have any luck with your treatment? Pls let me know. Thx. MARION
    • marion1701
      marion1701

      Posted

      I still have the rash. How could i add a Foto of it to this site?

    • kelly33933
      kelly33933 l221176

      Posted

      Hi ,

      I was diagnosed almost 3 years after a tick bite , when I started antibiotics my symptoms flared and got so much worse after seeing a microbiologist he informed me that it was known as a herxheimer reaction this happens when the bacteria is being attacked by antibiotics the bacteria die off and release toxins into our body but it is a goof sign it show that the medication is working you will feel a lot worse before you feel better detox your body with a good diet Lyme disease loves sugar so limit this I wish you the best of luck in your recovery

  • patricia78161
    patricia78161 l221176

    Posted

    Wow, you poor thing!  You really got socked with numerous symptoms and very quickly.  It sounds to me as though you're suffering from a co infection which is much worse than the lymes itself.  I'll let someone else tackle your abx, questions.  There are so many variables when it comes to what works for who.  But I would say your docor should have started you on another type.  Just please keep a close eye on this because you could become very ill, even worse than you are at the moment.  I had Babesia from a tick bite and was deathly ill and very similar to what people go through with malaria.  I don't mean to scare you but I came really close to being hospitalized.  I was alone and didn't have sense enough to get to the doctor when it started.  Did your doctor do a through blood work up on you when all this began?
  • stephanie67260
    stephanie67260 l221176

    Posted

    First I am truly sorry and know what exactly what you are going through. I apologize if the following sounds abrupt but it took me a long time to find the doctor. After seeing the top neurologists and rheumatologist in the country I found a Lyme Literate Doctor. You are likely allergic to doxycycline and need a different antibiotic. So my first piece of advice is to get a new doctor. I know it is difficult to find the right person to treat you for this horrendous disease especially when it is hard to function but it is really important to be treated by someone who understands the complexity of Lyme. From your symptoms it sounds like you may have Lyme and a co-infection. I had all your symptoms and ended up having bartonella and babesia in addition to Lyme. I was given an extensive course of Rocephin intravenously. I was also given oral antibiotics, Zithromax along with two others. I know this sounds overwhelming and only a Lyme specialist can provide the proper treatment plan. But I hope this helps you find the right one for you. Lastly, I was so stubborn about asking for help but friends and family may not understand what you're going through but can at least take you to your appointments, run errands and so forth. It is hard to ask but it will help. Again I am truly sorry for everything you are going through and pray you find the right treatment for you and get some relief.
    • Katie0422
      Katie0422 stephanie67260

      Posted

      Hi Stephanie,

      I got bitten by a tick in early april and was given 10 days of doxy which honestly didnt really feel like it did anything (no symptom flares and the little flu i had went away on its own) and i figured that was enough. then two weeks ago i had huge symptom flares, new symptoms, dizzy, extreme fatigue, racing heart, etc. and now i'm on 2 types of abx and can't yet tell if theyre improving me or not. i've also changed my diet considerably.  it's been 2 months since being bitten. do i have a chance to eradicate this??

    • emmalee21931
      emmalee21931 stephanie67260

      Posted

      Hello Stephanie

      I hope you are still active on this forum.

      I have had Lyme for the last three months and am struggling. Lots of hellish symptoms of course. My private specialist has recommended iv cephalosporin for two weeks as still having new joint symptoms after 8.5 weeks of doxy (and before that 4 of cefuroxime- one at too low a dose). This is impossible to get as my specialist doesn't have local nhs networks. the local nhs is going ballistic that my specialist should have the audacity to ask for it via them.

      can you tell me who your doctor was/is and how long you had iv and how you got on with it?

      in fact any info from anyone on anything would be great.

    • katielaine105
      katielaine105 Katie0422

      Posted

      I'm being treated with doxycycline for early Lyme also. I'm only supposed to have 21 days worth though. I'm very worried that 21 days won't be long enough. I didn't get started on the meds until 3 weeks after my tick bite. It was on my head so I didn't see a rash and didn't go seek treatment until I started feeling bad. How are you doing now? Any advice? I would really appreciate any information you can give. Thank you, kat

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