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Posted 5/23/2011 10:24 PM (GMT 0)
My whole situation is out of control. As if its not bad enough having a possible illness that creates so many symptoms, and trying desperately to explain these symptoms to a Doctor, who looks at you with a blank, confused expression. Then, begins to blame my symptoms on the fact that, when this started, I should have taken my happy pills for DEPRESSION, and more pills for OCD, i wouldn't be feeling like this.

What a load of rubbish. I was completely fine before I was bitten. Caught the odd flu bug, now and then. That's it. I started tumbling down this rabbit hole after i was bitten. I'm I wrong in thinking that, my docs should be looking for the cause of these symptoms?

I get the feeling one thing may be influencing my doctors opinion and diagnosis.
When these symptoms started, about 8months went by, one of my doctors arranged for a Psychiatric assessment (due to the fact that one of the symptoms I had was DEREALISATION)
I was that out of it with all these symptoms, I can't remember what there conclusion was. I'm sure it didn't help that, my partner at the time told the doc that I was attention seeking.

When I ask my doc now to look back at my records, she keeps this information very secret. Funny that, especially when its my med history.

So, I get the feeling that my docs think I have made this Lyme story up, just for some attention, and they believe I'm having some kind of psychotic episode. And now that they have finally done my first lyme test after 5 yrs of waiting, and its NEGATIVE, in there eyes, that just fuels there suspicions.

Tumbling, tumbling, down i go, where this stops, no body knows.

I can assure you all I'm not mad, these docs just think they know me better than I know myself.
Posted 5/24/2011 12:06 AM (GMT 0)
I'm in the UK, I've been told that the only guidelines doctors use over hear are supplied by the HPA(health protection agency) one site, that seems to shut the door firmly shut concerning any doubts. Test negative, then you cant have lyme. No offer of further testing, and they take the result as gospel.
No mention of unreliable tests, ect..........really try and digress coat it all.

I appreciate what you guys say on here, you all seem knowledgable, and are very helpful. And most have had the same experiences, so I'm more inclined to listen to you guys rather than those over here who ignore the reality of it all.

So far, according to my docs, my symptoms don't warrant treatment. Even though every single person who is going through this has said, I have classic symptoms.

What's the quote 'absence of proof is not proof of absence'.

Money is the problem, I can't do my job, and so can't earn the dosh I need to get a LLMD to start treatment. In fact, I may even loose my job yet. My capability to do my job is been questioned by the driving licence medical board, who are making a thorough investigation into my symptoms.

Whatever the cause of these symptoms, its slowly stripping my life away.

In the UK, you have to have the characteristic bullseye rash, even when you have all lyme symptoms and no rash, its no good. They won't take it seriously.

Either way, doctors have a duty of care that they must give all patients. To not know whats wrong with me for 5yrs, and ignore the evidence is appalling.
Posted 5/24/2011 12:23 AM (GMT 0)
Hi mrSeve,

I have a friend who lives in the U.K. and she also had a horrible time with the doctors there and getting treated, she was sooooo frustrated!  The rules there are so very different compared to the U.S. 

This is the advice I gave my friend and she took it (perhaps because she didn't know what else to do after dealing with all the red tape over there).

She bought the same book I did called "Beating Lyme Disease" by Dr. Jernigan and she was able to order the botanicals and have them shipped to the U.K.  She did the detox baths, etc.   I have not spoke to her recently but last time we spoke she was doing just fine.

We know our bodies the best.  Sometimes we simply can't rely on doctors and have to become our own advocates, hey, it's our bodies and our lives!  Here in the U.S. I have walked out on quacky doctors who thought they knew what was wrong with me and they were sooooo wrong!   The arrogance of some doctors!

Anyway, I know you feel like you are sinking but you found this forum and please don't lose hope, okay?

Denise

Posted 5/24/2011 12:29 AM (GMT 0)
How about trying to educate your doctor about lyme? Maybe print out some stuff on psychiatric or neurological lyme and bring it in to them. It can't hurt. If they are in fact a good doctor, they will be willing to read and learn. Otherwise, I ask my doctor about a frield who got bit and had a red ring and didn't want to go back to the dr. because she had a negative test. She told me to tell her to at least take cat's claw. Can you get your hands on some of that? It is an natural antibiotic.
Posted 5/24/2011 11:37 AM (GMT 0)
www.lymenet.org/SupportGroups/Europe/EuroLyme.shtml

This is the link to a Lyme support group in the UK. They might be able to help you find a doc.

Post Edited By Moderator (Traveler) : 5/24/2011 10:07:28 AM (GMT-6)

Posted 5/24/2011 11:49 AM (GMT 0)
Mrseve,

Also.....read this: news.bbc.co.uk/2/hi/health/7461617.stm

Hope I'm allowed to post this--- found it on the web-- available to anyone-- mentions a Dr. O., an LLMD in the UK.

Post Edited By Moderator (Traveler) : 5/24/2011 10:01:16 AM (GMT-6)

Posted 5/24/2011 12:07 PM (GMT 0)
I would ask to see your medical records for yourself. You can ask your doc informally, or officially under the Data Protection Act. You do not need to give a reason why.
Google Access medical records NHS.
Posted 5/24/2011 4:12 PM (GMT 0)
~ Cat,
It is okay to have a link to this article -and thank you for providing both links! I just went in and made them hyper-links for those who want to read them.

~ Mrseve,
I happen to agree with Deejavu about using a natural treatment - that way you would bypass all of the naysayers in the medical field and get you started on effective treatment right away so that maybe you can hang on to your job.

As others have already said, your medical records are just that - yours. Even here in the US, we have docs who still think that they don't have to turn over a patients records when they are requested by the patient. Be calm but slightly forceful when requesting your medical records - remember, they are yours.

Also never forget that we are most definitely here to encourage you and to help you find as many answers as we can! Hang in there!!!
Hugs
Posted 5/24/2011 5:49 PM (GMT 0)
Thanks so much everyone. I'm trying my best to keep going, and all your posts are great for moral.

I don't know what I would without your support.

I think its about time I took this into my own hands.

Thanks again.
Posted 5/24/2011 5:53 PM (GMT 0)
Mrseve,
Please let us know what you decide to do, and - of course how you are doing!!!
Posted 5/24/2011 6:49 PM (GMT 0)
Trav:

Thanks for hyperlinking me! :))))))
Posted 5/24/2011 7:17 PM (GMT 0)
WOW smhair That almost sounds painful!!! Giggle!! turn
Posted 5/24/2011 7:51 PM (GMT 0)
Mrseve........even if one NHS doc here believes you have LD you will not get any more ABX than about a months worth and that will be 100mg 2x a day, which sadly is not enough to help much. Sorry mate but you are definitley on a loser. You must try to find some funds to visit an LLMD who will know that one negative ELISA means nothing much and will diagnose you you clinically if you tick the right boxes.

Take things in to your own hands, as you say, get some money together and go and visit someone who knows what they are dealing with. My first consulation - a WB - a test for Bart and Babs was just short of £800.00..that was 2 years ago. It's the best money I have ever spent.

Mik
Posted 5/25/2011 1:58 AM (GMT 0)
Hi all,

Mikazmat, you are right.. my friend in the U.K. could not get more than 1 month's worth of Doxy and that didn't help her...  She even saved money to have her blood tested here in the U.S. at IgeneX.  Cost a lot because she had to Fed Ex her own blood! 

Mrseve, as far as taking matters into your own hands, that is exactly what I did all from reading a book that contained a protocol.  

Actually, the matter was NOT in my hands, I simply read Dr. Jernigan's book and followed the instructions.   At least I knew exactly what to take and how often thanks to the instructions.  Plus it's all natural botanicals!  I had no side effects and never met anyone who did.   Dr. David Jernigan had chronic lyme himself plus he studied with a famous doctor who runs one of the most successful clinics in Switzerland. 

In his book he explains what is going on inside one's body, why people feel the symptoms they do, and so much more.  That book is an education by itself plus he outlines a detailed protocol that a person can do at home.  What more can a person ask for?  It's been over 5 years that I have been well..  And I'm not the only one who got better on his protocol.

My motto is to try something for at least 2 to 3 months and if you don't feel better you can always stop..  But what do you have to lose by reading his book?  The money you spent on the book..  

Here is the link to his book "Beating Lyme Disease":

http://www.hansacenter.com/books.php

www.hansacenter.com

Even if you don't decide to follow his protocol, the book is a real eye-opener and an education to say the least.

Hope this helps,

Denise

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