My story from the uk and do you think im herxing?

Hey people I'm from the UK and this all started 4 months ago.My legs became really heavy,then my whole body would ache,i then got a really stiff neck and a pressure feeling behind my right eye and a headache that didn't go for weeks.I visited my GP several times and they kept sending me away with paracetamol.

I started getting all other things like gums went black,white spots on nails,veins popping out,rashes,tingling feeling,all my bones are clicking and grinding.white lines on back,legs trembling,ringing ears,rumbling belly,sweating,shooting pains,neck cracking,jaw cracking,toenail fell off,fever,swollen throat,red spots in mouth.Pain in elbow,pain in knees,red line that goes all the way up my spine and loads more weird things.

All of a sudden i was in bed sleeping day in day out.I went back to my GP who said i was depressed.Well i think anyone would be depressed with all this going on.They said all my symptoms are anxiety related.So i herd them out and started taking the Prozac.

months pass now and i'm on the Prozac still every weird symptom forgetting to do things that i no what to do.Same weird red marks coming and going.Now every bone in my body was clicking and grinding.I knew this wasn't just depression,i cant even keep track of time or what day it is or what i have done the days before.Started reading my symptoms on the internet and every time lymes came up.


Went back to my GP and showed them all the pics they said theirs nothing wrong with you Jordan your just depressed.All my bloods were fine and they said this is all in my head.My mum just thought i was going through a depressed stage to.I'm 22 and i had nothing to be depressed about i was perfectly fine one week then could barely walk the next.


I told my mum i think i have this disease called lymes disease.She was like oh! that's funny your aunt had that and got it in Dorset.That rang alarm bells because i just came back from my nans in Dorset were i stayed there for 5months working on the farm.


So i went back to my GP and told them i think i have lymes.They was like no way lymes is very rare in this country.Lol that rare my aunt had it hmmmm.They tested me anyway and the test came back negative.My heart sunk cause i knew that was my last chance.I told everyone I've read that these test are very unreliable and everyone must of been thinking loool yh right hes lost it.

No one has been listening.I went out of my way and ordered doxyciline online and started taking 400mg a day,2days later i was so sick and my body in so much pain.I carried on taking for 2 weeks,it was horrible,All of a sudden i felt like my old self and manged to paint my flat and go out and get a haircut even tho i hadn't been out for months.Anyway my antibiotics ran out and i no its bad to self diagnose but i felt helpless trapped and alone.

This has been going on from February.I went back to my GP again and said look something not right she said we have all told you its depression and sent me to cbt.My appointment at cbt the psychiatrist asked me whats been going on and my symptoms and said straight away that there not anxiety and depression symptoms.I showed him the pictures and my bones clicking and he was shocked and disgraced ! And sent a letter to my GP.

I went back to the GP and they said to me you have got to stop coming and wasting our time.My mum finally took me to Breakspear's the other day and the doctor said everything i have showed him and told him he thinks i have lymes.


A bit of relief.I had a western blot and co-infections and a Mellisa and electrolytes.They have started me on antibiotics and a load of other supplements and bio breakers and probiotics.They estimated that the first appointment and all the test was going to be 5k!!! well that wasn't an option as i just haven't got the money neither my mum lucky i am this far as she has a credit card.


So it has been three days now and i'm get the crawling ants feeling,white lines and red patches coming up and now i have diarrhea and as i am typing i am dripping with sweat.Do you think i'm herxing??


Its sounds bad but i'm so scared that these test comes back negative because then im in a very bad position.Also scared if there positive because going to Breakspears every time and paying is not an option.I am very scared.

Sorry for the long post and all the spelling mistakes

Jordan

Dear Jordan.

Hi, my names Hugh and my girlfriend and myself are also lyme sufferers being treated by Breakspear.

First of all I want to congratulate you on working out what was wrong with you, persisting, finding Breakspear and getting treatment, and your Mum for listening and supporting you. Although it may seem like a long time you have caught this reasonably quickly which is on your side from the POV of reducing treatment time and increasing the odds of full recovery.

You really have found about the only place to get expert treatment in the UK. You may have gathered that the NHS are unlikely to be terribly helpful. This is largely as a consequence of the way lyme disease is understood in the UK and the way the system works and is not a result of a GP's personal vendetta against you - so as distressing as it is try not to take it personally. That said, there are more 'lyme literate' GP's than others, and those that given the expert supervision provided by Breakspear, may well be willing to prescribe on the NHS so long as the treatment falls within their PCT's remit, so keep them informed and try to build a positive relationship with them.

Whilst Breaskpear are the 'best' place to go in the UK, they are also the 'only' place you can really go and you will hear mixed reviews of them. Ultimately they are a private hospital so unless you can fund it through yours or someone in the families insurance you will have to pay. Their tests for Lyme and coinfections are about as accurate as you can get BUT you will know by now most tests for Lyme and coinfections are very INACCURATE. Hence the value of having an experienced clinician. You can explain your financial situation to them and they will prioritise the tests accordingly. Ultimately Lyme should be a clinical diagnosis and given the appropriate history and response to antibiotics I see no reason why they will not treat you as such. You can reduce travelling costs to them by having telephone consultations once your treatment plan has been agreed upon. Whether or not you decide to follow their full recommendations including supplements and low dose immunotherapy is up to you. Again these can be expensive and are not necessarily necessary - if funds are limited start off with the abx and probiotics and see how you get on.

Continue reading around and gaining knowledge - you must be your own advocate!

You will find this group very useful for this purpose and support.

You may also wish to join the Yahoo groups Eurolyme and Breakspearlymepatients.

Once again, well done for getting a diagnosis and starting treatment and don't panic, you are in good company.

With best wishes,

Hugh

I'm so sorry to hear of all you've been through and continue to go through - I was told for years that I was depressed when I wasn't - I've been through the ringer for over a decade now and just last month I went to a new GP for a run of the mill sinus infection and when I told him that I have chronic lyme, he still tried to convince me that it was depression, despite having only known me for half a minute. It's so insulting - we know our bodies, we know what we're going through, we have no problem admitting that it's more than a little disheartening to be sick, but we're all intelligent enough to know the difference between emotional and physical symptoms!

It wouldn't hurt to look into herbal treatment protocols, especially if you feel stuck in self-treatment (just always use plenty of caution). Please try to understand that it's nothing personal and has nothing at all to do with you when these doctors treat you so poorly - it's just the way those things work, sadly. Hang in there - you'll find what you need!