Update to my wayward journey

[MrsAristotle]

Hi guys sorry i havent been on here for a few months, but i got myself a bit depressed and just couldnt face it.

I have been waiting and waiting for the letter from my doctor at Breakspeare to my GP explaining about my lymes, and the need for anitibiotics and also the antiviral etc.....nothing. I spoke to her on August 8 for full appointment and going through results.

Finally, I just got fed up 2 weeks ago of waiting so i went to see my GP anyway. She ordered blood tests to check my B12 and anemia, and said if she had a letter from the doctor at breakspeare asking for me to go on antibiotics she would start me straight away, even though she hasnt got a clue about Lymes.

So I wrote quickly to breakspeare and asked her if she could do the letter she promised.

I got a copy last week of this letter and it was RUBBISH, it said nothing. I was so upset i cried, as i felt i had been conned and let down. It didnt even mention the Lymes, said i had complained of HIGH TEMPERATURES, and still got leg spasms blah blah and black web.

Well I have NEVER said to her I get high temperatures, I said to her when THE TEMPERATURE IS HIGH, my legs get worse, and I see a black web in my eyes................THAT STATEMENT IS A WHOLE LOT DIFFERENT.....

Anyway I was so upset about this letter that i wrote to her again I was quite annoyed and told her I felt let down, and was a bit worried as the blood test for B12 came back normal at my doctors office and i was now wobbling over other results etc....it was a long letter.

I got a reply on Friday with a huge apology, the customer care liaison officer found a letter from my doctor at breakspeare to my GP saying they had found abnormal Lymes results and also attached was a list of treatment options, all of which incorporated antibiotics for 3 months and an antiviral for the high titers on the EBV and CMV but it had been put back in my file and not sent..

So they sent her all of this on Friday over fax, so I am ringing tomorrow to get an appointment and finally hoping to go on 3 momths of tetracyline....

It takes so long doesnt it. I am still angry as the letter to my GP they found was dated 21 august, and I had spoken to my doctor at breakspeare on the 8th. The excuse for the lost letter was staff holidays. I still think i should do something about this, I spent a lot of thousands of pounds there and they still have let me down really.

I am worse in myself and rarely walk out now, its too much like hard work. My doctor was shocked to see me in a wheelchair, and i have now to have bone density scan. I have been plagued with poor bladder and infections so on the 14th i have to have another bladder scan.

I am depressed and ready to throw in the towel with the pain. Its relentless. The only thing that is helping me is my wonderful buddies from here, and also my little chicks. I have been hatching baby chicks its been a life saver for me, and given me something to do. Stupid I know.

I feel so angry all the time and irritable, and find it hard not to make an argument about things with my hubby.

Apart from all that I am fine lol...........

I miss you all, and felt i needed to touch base, as you have always been so supportive. I am still undiagnosed really  even with the doctor at Breakspeare saying I had MS, I am discounting it and just concentrating on the Lymes for now.

Big hugs. mama bear.xxxxx

[Ricobord]

I, Maria! I am so sorry to hear you went so long with no treatment!  That is inexcusable for the Breakspear to do that. Isn't this the same clinic where they sent you a completely incorrect letter about your Lyme test results?  It sounds like the staff aren't very good, and the doctors don't keep tabs on things. "Staff holidays" should never be an excuse for someone waiting weeks for treatment when all you need is a letter.

Perhaps your husband or daughter can become your champion and fight for you?  You need someone who can be on top of your doctors and your treatment to make sure things like this don't happen again. Someone who will call the doctor's office every day until something is done, if that is what it takes. You need to focus on resting and avoiding stress and getting well. Give the treatment management job to someone who loves you and who is well and able to look out for you.

Three months of oral abx will be just the tip of the iceberg for you. Is there a treatment plan for after that, or is that when you need to go back in for a next appointment? Given what you have described of your symptoms, you probably need IV abx or shots. Orals might not be strong enough.  Is the tetracycline also supposed to work on the Ehrlichia?

[UnsureMS]

Hi, I am new to this forum. But I just wanted to say so sorry for all you are going through stay strong and you are in my prayers.

Kimberly

[Jacksmom516]

Dearest Maria
So sorry to hear of the heartache these so called specialists are putting you through!  

Tammy is right if they had to walk in your shoes I bet they would do things right!.  

Feel better and we are always here when you need us.  

Miss you and lots of love
Tracy

[tjlmoo]

Our dearest Maria,

So sorry to hear all of this!
Oh, if they were only in your shoes then they would get their act together.

We've missed you and we want you better.:)

I'll be praying for you and for those so called experts (LOL).

I'm sending you a PM  right now, okay!
Love filled hugs,
Tammy:)

[jibjen]

Hi chick-a-dee,

well I would have been p'oed too..I am gled you set them straight and will be starting your medication course soon.

I am so sorry this has been so trying for you. I hope now starting these meds, it may help you...I am glad your chicks bring you comfort and something to focus on...

I have missed you....I totally understand the hubby issue

Love Jibby