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UK Newbie post - be gentle with me

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Posted 3/19/2015 11:34 AM (GMT 0)
Hello everyone

I'm here because I'm investigating Lyme Disease as a potential cause of the health problems I've been having. I've read through the New To Lyme? post (and many others besides). I'll keep things fairly brief initially because nobody wants to read War and Peace and also my memory is terrible these days so I'll probably forget half the things I actually wanted to say. Please excuse my spelling - I'm British.

Main current symptoms, in no particular order:

Brain fog
Confusion
Memory problems
Fatigue
Dizziness/light-headed feeling, particularly when moving
Some hearing loss and tinnitus
Muscle weakness
Migraines
Decreased libido and erectile dysfunction
Cold extremities
Inability to think of the right word when talking
Difficulties reading printed words
Tongue feels fat, sometimes causing speech slurring
Sensitivity to light (bright lights leave spots on my vision that last for ages)
Depression and anxiety
Craving sweet food
Clumsiness
Grinding teeth
Obsessive compulsive behaviour
Never feel that sleep is restorative
Weight loss
Tremors

I've experienced some of these symptoms since I was a child, about 20 years ago. The symptoms have often changed or moved around my body. For example, about four years ago the cognitive difficulties become much worse. about four years before that, the tremors started. I've had the migraines and the anxiety since I was a teenager.

What makes me think it might be Lyme? Reading about the experiences of others and the inability of any of my doctors to explain the reasons for my symptoms and a couple of other reasons I'll get to. I have been many different types and medications over the years, none of which have helped. I have been prescribed beta-blockers, three types of anti-depressants, all sorts. None of them made me feel any better and some made me worse.

One of the brief periods of respite I've had from my symptoms occurred after I was prescribed some strong antibiotics for a tooth infection. For a few days, the fog lifted and my light-headedness felt better but after I finished the course of medication, the problems returned.

I went to see a pharmacist about 8 years ago when I developed a fever, rash and joint pain (it was the weekend so I couldn't see a doctor) and they suggested getting tested for Lyme Disease. I told my doctor this the following week and was told that it was just urticaria and that I shouldn't worry about it.

The reason that I'm now pushing the Lyme investigation further is that my symptoms changed again recently. I caught what I believe was flu (fever, chills, sweat, headache, pain in eyes, coughing, severe fatigue, lack of appetite) and felt awful for a week but, interestingly, for a few days afterwards my other symptoms felt slightly better. I mentioned this to a naturopath friend of mine who suggested that either while I had no appetite I wasn't eating something that disagrees with me or the high temperature I had killed off something that is infecting me. Any likelhood of those things happening with Lyme?

I have finally persuaded my current doctor to test for Lyme but the results will apparently take weeks to come back and are notoriously unreliable, from what I've read. I'm interested in your opinions - does it sound like Lyme? I can't find anything else that seems to cover all the symptoms I have but I realise that Lyme affects everyone differently. I also believe that there are very few Lyme Literate doctors in the UK so even with a positive diagnosis, I might still have problems.

It's been going on for SO LONG that I really want it to be Lyme, so that at least I know what I'm dealing with. The not knowing is awful.

Thanks,

Lechatster

Post Edited (lechatster) : 3/19/2015 5:48:50 AM (GMT-6)

Posted 3/19/2015 11:46 AM (GMT 0)
Hello Lechatster,

I would like to extend a warm and gentle(!) welcome to the forum. Your spelling looks fine to me, but I was raised in Hertfordshire, so I am no one to judge!

Your symptom list is very much in line with Lyme. It is rarely a perfect match, particularly as the symptoms come and go. The fact that you felt better on the short course of antibiotics is also a good sign of it being Lyme.

We have several members here who are based in the UK, I am sure they will be along in a little while to pass on what they have learned. You could put UK in your subject line to grab their attention. While it is a little more difficult to get treatment there, it is not impossible so don't lose hope.

It is completely understandable that you are hoping to get a Lyme diagnosis. Once you have it the questioning period will be over and you can get on to the business of winning back your health; and win it you will.

Again, welcome!
Posted 3/19/2015 11:52 AM (GMT 0)
Thanks achievinggrace. I've added UK to the subject line. Not understanding what I'm dealing with is the hardest part of the whole affair for me. I like a plan and it's virtually impossible to form one without a diagnosis!
Posted 3/19/2015 12:27 PM (GMT 0)
Hi Mister Mike

Thanks for the welcome. I have occasional arthritic type pain in my joints but stiffness in my shoulders and knees is fairly constant. I certainly have muscle pain that moves around. A while ago my thighs were extremely sore (like I had climbed a mountain) for no particular reason. Then it moved onto my calves. It sometimes appears in my lower back too.

I spent about a year lifting weights (in combination with an improved diet) and I never made any progress in building muscle and the pain post-workout was usually fairly intense. The backs of my arms were always the worst. The level of pain and soreness seemed to be unusually strong for even the most gentle workout.

I don't know if it's relevant but I also had a burning sensation on the skin of my thighs a few years ago. It felt like acid had been poured on my skin.
Posted 3/19/2015 12:29 PM (GMT 0)
Oh forgot to mention the tests (my memory...)

I've had all the usual tests (diabetes, thyroid, etc.) but in terms of Lyme specific testing, I'm not sure which test(s) were ordered. The form I took to the blood centre just said 'test for Lyme antibodies' - does that sound like the ELISA test?
Posted 3/19/2015 5:14 PM (GMT 0)
Hi Lechatster!

It sounds like Lyme to me too. You have a lot of classic Lyme symptoms. Since you have so many and responded so well to antibiotics, I think it is very likely Lyme. Also, Lyme rarely travels alone. Most people get co-infections, such as Bartonella and Babesia. I'm battling the 3 B's - Borrelia, Bartonella and Babesia.

It would be a good idea to find a Lyme Literate doctor. In the meantime, you can also look into herbal protocols, such as Buhner, Cowden and Byron White.

It is a good idea to get to a Lyme Literate doctor who can diagnose you and treat you. Lyme is very complicated to treat. You want to get help from someone who is ILADS trained.

Frequently with Lyme testing, they do an antibodies test first (ELISA like test). If that is positive, they do a Western Blot. Any positive Lyme test is significant because it is very difficult for Lymies to produce antibodies since their immune systems are so suppressed. Also, a negative test does not rule out Lyme. A Lyme diagnoses is one that is clinical, based on symptoms.

Most labs are not very good at detecting Lyme. IGENEX specializes in tick borne infections. I had a positive ELISA (and negative Western Blot) through a regular U.S. lab. Subsequently, I had a positive Western Blot through IGENEX.

Welcome!
Posted 3/19/2015 5:25 PM (GMT 0)
Welcome Lachatster, It sounds like Lyme, especially the moving achy symptoms. Like Lymie Girl stated, you should be tested thru IGENEX in California. I believe a doctor needs to sign for the test, but you will likely have to pay for it. It is around $250.00.

Good luck, you have found a great community here.
Posted 3/19/2015 7:11 PM (GMT 0)
Welcome! Someone else from the UK posted about Lyme in the last few weeks. I'll see if I can find the post and you two can chat.

Got it- I must be having a good brain day!

https://www.healingwell.com/community/default.aspx?f=30&m=3354791

Does anyone have any UK LLMD names to give these people? That would be great!

Posted 3/19/2015 7:27 PM (GMT 0)
Hello Lymie girl, dancingbear and sarahm620

Thanks for the info! I'm not sure I'll be able to get the IGENEX tests as I'm in the UK. There's a lab here that do private testing but I was quoted £1300 so I'll wait and see what the NHS tests come back with first.

I understand that finding a LLMD is my best chance of success but they seem to be few and far between over here. I've a feeling my next thread will be based around finding one.

I've been reading up about the various protocols today but nead to do more research. This forum is by far the best source of info I've discovered so far. Thank you everyone!
Posted 3/20/2015 7:15 PM (GMT 0)
Bump.

Lechatster,

I hope you can get in touch with some other UK members for recommendations on LLMD's.

They are here somewhere! LOL. :)

Let us know if you have any questions.
Posted 3/21/2015 5:25 PM (GMT 0)
Thanks Lymie girl. Do you think I should start a new thread with 'Looking for UK LLMD' as the title?
Posted 3/21/2015 5:36 PM (GMT 0)
You might well get more responses by posting that way. Good luck!
Posted 3/21/2015 5:58 PM (GMT 0)
Yes. Definitely Lechatster. Good luck!

Please keep us posted. :)
Posted 3/23/2015 10:51 AM (GMT 0)
Hi lechaster :-). I am also in the uk, and have been tested and been having treatment for the last 18 months. I think you probably already have the name of the private clinic I use, as you mention that you've heard of a private clinic that offers testing, and as far as I'm aware, that is the only one in the uk that does this or actually knows anything at all about Lyme disease. Your options really are extremely limited in the uk. The NHS test is worse than useless, it is so unreliable, and once you test negative, they will completely dismiss any possibility whatsoever of you having lyme. This is my experience and that of others I'm afraid. Infectious disease specialists are, from what I've heard, useless. I saw a neuro consultant, and he wasn't remotely interested in my positive lyme results from igenex, because the uk NHS test was negative. My feeling is that, unless you are extremely fortunate and find a forward thinking and knowledgeable doc with an interest in lyme, then you will not get far with the NHS. In fact, even then, they are so bound by NHS guidelines that they will not give you adequate treatment. It might be worth contacting the private clinic again to discuss cost. They may well diagnose you clinically (based on your symptoms) and prescribe a course of abx to see if there is any reaction. Let me know if I can be of any more help, or I can email you. Getting adequate Lyme disease treatment on the NHS is almost impossible in my experience, so the private clinic may well be your only route. Good luck and, as I say, let me know if I can help further :-) xx
Posted 3/23/2015 1:48 PM (GMT 0)
Hi FlossieUK

Thanks for the info! I am going to wait and see what the NHS blood test results say but regardless of it being positive or negative, I don't have a lot of confidence that I'll get any more consideration than two weeks of antibiotics followed by blank faces. I think I'll arrange to have an appointment with the uk clinic anyway because, as you say, the symptoms alone may be enough for them to diagnose clinically. I don't know how prescription from private clinics works - do they need to get approval from my GP or are they free to prescribe whatever they feel is appropriate? I have enabled visibility of my email address now so if you think that is a more suitable medium, feel free! Many thanks.
Posted 3/23/2015 2:33 PM (GMT 0)
The private clinic is able to prescribe as they feel appropriate, so can prescribe long term abx, rather than two weeks worth as you will get from the NHS (if you're lucky). I will drop a line to your email address in case you want any further info or just want to chat in more detail, with names named more freely! ;-)
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