Lymes Diseas in the UK feel confused and alone

Infections
1

Hi! I'm new to this forum as I have been googling trying to find somewhere I can talk to people who will understand how I feel. This is going to be a long and rambly post so I do apologise in advance...

Two years ago in 2015 I was down in Kent for my brothers wedding in a very rural area, they has lots of high grass and every person at the wedding got bitten, however I took a funny turn with mine. I never noticed a tic in me but I would have been bitten whilst getting photos taken so we believe I may have knocked it whilst picking up my nieces and nephews and such. 

I returned home to Liverpool and as the weeks went by the rash got worse and I got sicker, vomiting, no energy, feeling just generally run down. I seen about 5 different doctors who all told me it looked and sounded very similar to Lymes Disease and all turned me away with excuses such as come back if it hasn't gone in a week or if your symptoms get worse. I was only 18 and didn't know anything about the disease nor did my mum who was with me. About 4 weeks after an appointment I had a phone call from my Doctors who told me to come in ASAP and informed me at my appointment that a previous doctor had been in touch with him as she had been concerned about the rash and suspected Lymes, they rang Infectious Diseases and explained to them all my symptoms and they told my doctor to give me a 2 week course of doxycycline as I'm allergic to amoxicillin. He told me the tests aren't accurate and they aren't even going to attempt it as it wastes time and will not be an accurate result.

I took the tablets however they made me really sick and I just kept vomiting them up. I really didn't think anything of it as I felt much better and the rash had gone (how I wish I knew back then what I know now). I decided to stop taking the tablets and told my doctor I was feeling much better. 

2 years on and here I am, my whole body is in agony constantly, some nights I can barely bring myself to walk to the bathroom. I can't carry any bags for longer than 5 minutes and simple tasks like opening a drink or bending down to pick something up exhausts me. I can't sleep at night, I can't think straight I'm exhausted no matter how much sleep and rest I have. I wake up and vomit at least 3 times a week. I can't catch my breath, I'm so sensitive to light and sound and my main issue is panic attacks. I have never, ever suffered with anxiety or panicking or depression and now I have around 2 panic attacks a day. Just this morning I was in work and suddenly launched into one with no explanation. The symptoms are getting worse by the week, if not by the day.

I went back the doctors 4 weeks ago thinking it would be as simple as the first time, unfortunately not. The first doctor I seen was brilliant and really understanding who told me he's going to send off for the tests and other blood tests and if nothing comes back (even if the lymes doesn't come back positive)  I'll be referred to Rhaumatology who have Lymes specialists. I got the blood tests done and went for my results last week just to find the nurse hadn't even sent off for Lymes and just done routine bloods. This doctor I saw was horrid, I could see her looking me up and down as if to say they doesn't look like anything is wrong with me. She told me Lymes is 'political' and basically because nothing has been found in my blood she won't refer me and I'll fall into a class of unexplained medical causes. This shook me up big time as it wasn't what I expected after being promised the world by my previous doctor. When I asked her could I do the Lymes test she told me they is no point and she doesn't see why the doctor would suggest it in the first place. I came out feeling defeated and very upset, to the point my boyfriend was trying to go into the room he was that furious with the results as obviously he is seeing the impact this is having on me. 

I asked the Receptionist if I could be booked in with the doctor who originally told me I will get referred however he was only filling in for the day. I have an appointment next week with a doctor everyone recommends and my mum and boyfriend have both had very positive experiences with. 

I just can't bare feeling this way anymore, I have always been active and was a ballerina up until all this started, now I can't even go shopping alone. 

I have a wonderful support system and I know I'm at the start of a very long road, I just feel alone as no one around me really understands how it feels. I have gone down a herbal route and my mum has bought book after book on how to herbally treat Lymes. 

Does anyone have any tips at all to help me make this doctor next week see light and get me some help? I can't bare being 20 years old feeling in a 70 year olds body. 

Thank you if anyone made it this far, it felt good just to get it off my chest...

2

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.

3

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

4

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. 

5

Hi there Joanne.

Thank you for showing that ticks are part of my story. What a good idea, I will definitely think about that .

Thank you so much for the information on the extended Lyme Panel.

I'm not sure about the U.K. helpers because I live in United States.

Thank you for your knowledge about the 2 week program. I know that it disentcwork. I am seeking natural

Deborah.. keep in touchremedies. Be blessed☺

6

Thank you for your kind words Deborah, this honestly brought a tear to my eye. I'm so sorry you've had to deal with this such a long time, it really is impossible with the healthcare. Following your tips I'm keeping a journal and waiting for a diagnosis before I submit a complaint. 

Congratulations on your book! You have to let us all know when it's available so we can support you, I love the ballerina characters! 

Thank you so much again for your message, you really are a gem.♥️

7

Hi Joanne thank you for your lovely message! I am 100% persisting even if the doctors continue to tell me no as I know that I still have a chance to make a recovery and lead a healthy life if I get treatment soon. If the NHS won't help me I will have to go private. Battling doctors who have such out dated thoughts on Lymes is a battle in itself. I haven't looked into charities but I certainly will do. Thanks so much I'll keep posted what happens in regards to the GP appointment. 

8

Go Laura😊

9

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.

 

 

10

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.

11

Thank you so much! Bless you, it boggles my mind how un helpful the NHS Is. I am lookin at every options and currently gluten sugar and dairy free... wishing you all the luck in the world x

12

Oh gosh, I feel for you I really do. I'm only a few months in of feeling this lousy and I want to put a brick over my head Nevermind years! I'm so sorry you don't have a support system I really am, I can only imagine how harder that makes everything. Support is the most important thing you must feel so alone. I wish you all the luck, keep me posted❤

13

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