1. Community
  2. Infections
  3. Lyme Disease

Lyme Disease just diagnosed after 4 years ... reaching out to anyone who understands

Posted , 17 users are following.

lucy13574
lucy13574

Hello,

I have been visiting my GP for 4 years with worsening symptoms.  He told me it was chronic fatigue and just referred me to clinical psychology and physiotherapy to learn how to accept it.  He prescribed me medication for all of my symptoms: propranalol for heart palpetations, codine for migraine and body aches particualrly in joints and weird nerve-like pain in my face. I was also proscribed antibiotics for constantly recurring water infections and sinusitis.  There was nothing they could suggest for the memory loss, dizziness, being off-balance, blurred vision, lack of concentration and severe cognitive dysfunction to the point of being unable to talk coherently.  

Despite knowing that i had been bitten over 100 times and being sent to hospital while abroad, then having flu-like symptoms and severe fever when i returned (this was 4 years ago), on no occasion did my GP suggest the possibility of Lyme Disease.

My condition got so bad that i gave up my career as a professional (i'm a university lecturer in Education) and, living alone after my relationship failing due to my health, i was struggling and wondering what my future held.  I wondered if there was any point living as the pain and the brain-fog was making me feel like i was insane.  I saw my friends and family cast doubting looks and they began to call me a hypochondriac.  I then began keeping things to myself and just suffering alone.

Last week i ordered private blood testing and 4 days ago i found out i was positive for Lyme Disease.   

I immediately changed my GP and booked an appointment to see my new doctor.  I was given an appointment immediately.  He was amazing, it was the first time i had seen a doctor and not felt that i was battling.  He gave me a three week dose of Doxycyclne, 100mg twice per day.  The pharmacist questioned me about the dose and i explained what it was for and she nodded.

I started the antibiotics yesterday.  I was already feeling generally poorly and sick to begin with but feel much worse on the medication.  

I feel isolated and very down, the emotional aspects of being let down and the upset of knowing this bacteria has been allowed to ruin my body for for years has taken it's toll.  The pain had already started to increase in the last month anyway and the cognitive dysfunction is also very distressing.

Being alone, i st wonder if anyone can help e by offering some words of wisdom or sharing any experiences. Many thanks in advance smile

I'm 34, healthy weight, eat healthy foods when i can find the energy to prepare meals, and generally fit other than the symptoms that come from this condition.

0 likes, 21 replies

21 Replies

Prev
  • lucia7955
    lucia7955 lucy13574

    Posted

    Hi there!

    My name is Lucy, like you.

    I read your post, and I cryed a lot.

    I have Lyme and Bartonella sad(.

    Now I am at round 3 of abx. First I was on acyclovir and valtrex wich are 2 ativirals, then Azytromicin and Tinizol, Doxy and Ciprofloxacyn, now on Tavanic ( levofloxacyn) and Rimfapicina. I feel I can't do this.

    I have a lot of issues with my pulse rate and the pain around my heart and chest.

    Sometimes is big like 140 sometimes low 46.

    I'm so scaredsad(.

    I would want instead to deal with another symptoms but no sad(.

    My LDD says is due to toxicity that îs în my body and the heart is fine.

    How should I deal with this?

    Nobody understand me and I feel like you so alone.

    I hope you will read this. Maybe not.

    I supposed to make you feel better but I don't know how.

    I have The same life as you descrie.

    I...... don't know what to say anymore sad(.

    Please excuse me

    • Sstephen
      Sstephen lucia7955

      Posted

      My heart rate spikes too, 150-160 highs and when a doctor saw it they sent me to the hospital but they found no cause. I was told by 2 docs they think I have Lyme and got special tests done today. My heart rate doesn’t seem to go super low just normal after the beta blocker they gave me. Hope you feel better soon. God bless 
    • lucia7955
      lucia7955 Sstephen

      Posted

      Hi Stephen!

      I hope you will forgive me if I do grammatical mistakes. I am from Romania.

      GO! Just don't give up on the test. I know there are many more than here and you will find your dissease. One of my first symptoms was the high pulse rate. I went to many places and doctors. For about 2 years I searched for an answer.

      Nothing show up, just my pulse, the chronic fatigue and a heat in my body.

      I was referred to a psychiatric doctor but with any help.

      I discovered Lyme about 7 months ago.

      So please please don't give up!

      I was at the ER today because of my heart pain. Is more then I can describe in words. It is a huge pain.

      Of cours I did EKG and they gave me a calmante.

      There was no relief. Than I was to a cardiology doctor, done another EKG and eco.

      There is nothing wrong with my heart but the pain is still here.

      I wrote you all these to bo carefull with Lyme.

      Thanks you very much for your time and your answer.

      I wish you all the best.

      God bless you.

    • Sstephen
      Sstephen lucia7955

      Posted

      Thanks for the reply. I appreciate it and just got a special Lyme and co infections test. I too have had different chest pains and many other symptoms. It seemed like after the heart rate going high became a problem it triggered other symptoms to come as well. 

      Hope you get better soon. 

  • laura00828
    laura00828 lucy13574

    Posted

    I understand.  I was bitten at age 50 in Shelter Island NY.  It took15 months for me to have a dr smart enough to test me.  I was in the hospital 4 times and had arm paralysis and trouble walking amongst a whole list of other symptoms I will spare you. Many times when you are infected Lyme is only one of the things you are infected with,  You should be tested for the others,  Antibiotics didn't work for me.  I had IV silver. It took a long time to recover but I am doing well next to the wreck I was previously.  Don't despair YOU WILL GET BETTER but you do have to work at it.

    Best wishes.

  • laura00828
    laura00828 lucy13574

    Posted

    PS in one of my hospital visits where I was sure I was having a heart attack the doctor told me I should see a psychiatrist!  So ignorant these doctors are of Lyme disease.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.