Lymes Diseas in the UK feel confused and alone

Oh, Laura.

I understand so explicitly. I have my heart and prayers going out to you my dear one.

I admire your persistence. It is although some doctors are broken eggheads. I'm sorry for your experience with a much abbreviated doctor like her! How dare she be so passive about your issues with what I know is Lyme.

I'm so sorry to hear about your dancing routines ending. I really am.😯

FYI. See I have had Lyme disease all of my life since childhood. I just found out through a western blot blood test last year. Your symptoms are very real and are causing you a pronounced array of debilitating issues.

These are very familiar issues to me.

However my dear one the good news is that you are persisting to get care. Do not ever give up okay.

In fact upon that note I would like to tell you a great saying a good friend of mine told me. I hope this makes you feel better and equipped you to persist.

" If you are told no , just keep on asking and you will find that yes". Friend 2008, visitor from Germany. She was a brilliant person. I'm bad with names.

Also , because your catching this early on your care may prevent you from chronic Lyme disease.

For the most part I can do things but, it is difficult. I have the biggest hope for you and will be here for you okay.

One thing that might brighten your day is this.... I am a writer I have a publisher who is going to publish my book. Buggin Around. In my book I illustrate it with cartoon like bugs, not ticks!!! These bugs will take pre teens on a journey that helps them get diverse and fun information about dangerous drugs. Ok, the look part is that I am using two characters who are ballerina cartoon bugs. I hope that cheers you up. My sister danced ballet. She suggested the idea. I just want you to know I support you!

Be blessed, Deborah T.

Your in my prayers.

Oh as far as tips. I definitely may have idea starters for you.

First off I live in USA. However, the CDC website has a recent review on Lyme Disease, these include symptoms and demographics. I may suggested have your boyfriend or mum print out this information. Then highlight the symptoms.

2. As of today keep a journal about your diverse symptoms and put a star in highlight beside every symptom coorosponding to Lyme .

3. Try to stay motivated and allow your loved ones to accompany you per Dr. Visit.

4. Get all of your medical records from past two visits ahead of time by calling Dr. Office and keep these as or off of the type of health care treatment you are looking for.

5. If you want to complain do so after your appointments to your heath department regiments do not use anger to Perdue the idiot doctors who later could be sued for not testing you for this very serious lyme disease. Just be as sneaky as they are.

6. You got this. Just keep trying and explicitly ask this new Dr. To administer a western blot test. As noted by the lyme disease communities sometimes even these tests come back negative.

6.the negative test is noted in writing. Be persistent and gather that before they tell you their test results after testing.

Okay, you go girl!

Be blessed, let mum and boyfriend help you as much as they can and rest for now.

Bye for now

Deborah

Your story shows how destructive tick bites can be. It’s unfortunate to say but the overall nhs attitude towards Lyme is so wrong. Doctors calling Lyme political and not offering testing is very unhelpful to the patient. The problem is the textbook they keep referring to is very outdated and wrong lots and lots of research now shows it persists and causes issues with the immune system and most importantly is extremely difficult to treat.  We are caught in the middle between old thinking toward Lyme which is embedded in existing doctors and new Lyme thinking which is still in progress while they figure out how to cure it.  While in progress the old way of thinking stands. The 2 week treatments they are offering is usually not getting patients well in long term Lyme cases. There are now thousands of patients shouting the same thing “I’m still sick what’s going on’’ It’s un science to think that all these patients who have/had ‘lyme’  are now crazy hypochondriacs. If it’s not lyme then test to see what other nasty infections these ticks are infecting patients with. 

The best thing you can do is request the extended Lyme panel. It tests for other tick born infections. You got bitten got sick, stayed sick and are getting worse. This should warrant further investigation. Be firm, you know your own body. 

The treatment thing is the issue. 

You may have to consider other treatments or going private. 

Have you contacted the UK Lyme charities or support groups. They can be helpful with guidance. 

Good luck. Keep us updated. 

Laura, I am so sorry you are experiencing these symptoms.

I have unknowingly had lyme for years. I had every test going but managed to keep working up until 6 months ago. Then the neuro symptoms hit me like a bus over a two-day period.

Like you I am sound and light sensitive. Also for the first time in my life I developed anxiety. I had a professional job and manged to run my own company. Now I find it hard to walk to the local shops. My advice:

1)      Do not except the diagnosis of generalised anxiety. I was told all my symptoms were caused by myself. Putting myself under stress. Gp’s poisoned me with antidepressants and antianxiety medication. Which did me no good.

2)      Do not be afraid to get 2nd, 3rd ,4th opinions. GP’s

3)      Please find an infectious disease doctor. Go private the initial consultation will not cost to much. The reason I say this is because I did the same. I took my wife and grown up children with me. Firstly, I had to convince him I was not going mad. As my doctor’s records included the diagnosis of anxiety, depression and hypochondria. You will find that these ID doctors also work for the NHS. I was lucky this professor believed me. That in itself was a massive relief. I was then lucky that he transferred me back to the NHS for IV treatment. Currently I am on day 4.

 

Even though I am grateful for this late treatment. The NHS do not understand or recognise chronic lyme. Even the professor I saw did not believe co-infections caused problems or biofilms hide the infection in soft tissue. It sounds due to your light sensitivity you make have Babesia do you have night sweats?

 

IV is only one treatment but herbal seems to be another good route.

Check out the American sites (As they seemed to be really experienced with self-treatment)  http://www.lymenet.org is a good start.

 

Hope this helps you. Whatever you can’t do right now is purely down to the Lyme infection. DO NOT BELIEVE it is down to your Anxiety it is down to infection.

Keep strong and sending you blessings.

 

 

Oh, I am so so sorry you are going through this. I so completely understand and have been in your shoes so many times now and I still am unfortunately. Mine began in the summer of 2013 and has continued ever since and how you are feeling is how I feel every single day of my life and cannot get help. I am very thankful for you that you have a supportive family. Most of my family just felt I was crazy and making everything up and I have no support system around me whatsoever other than my 12 year old daughter. I am alone. it is the worst possible disease that could ever exist once it gets going and I pray that whoever you see will help you but don't give up if they don't just keep moving until you find someone. I'm considering trying to take a loan in order to find a better doctor that can help. Keep posting and let us know how you're doing. Good luck.

Sorry I didn't update my appointment was cancelled as GP was sick and I didn't want to see another (all crap). I was re booked for tomorrow but he is still off. However I have rang Well One and have appointment with Beryl 10th Jan so really hoping for something there. Also came out with rashes on face which look similar to lupus butterfly rash except not on nose?... unsure what to do with this