Possible Lymes

[MariaBanelli]

Seven years ago my son got a peculiar round rash on his leg. The doctor treated him with topical cream and said it was some sort of reaction to an insect bite. A few weeks later I got an almost identical rash on my face. At the time I was working on a horse yard and we had been cutting back bracken. A friend arrived with a magazine with an article about Lymes disease. She pointed out to me that this was clearly what my son and me had and suggested we head back to the doctor pronto.

The doctor wasn't amused that I had an article on Lymes with pictures of the rash. He told me Lymes was almost unheard of in the UK but he would test us anyway. My sons bloods came back positive, mine negative. I wanted to be re-tested as it was clear we both had the same thing but he was adamant I didn't have Lymes. My son was treated with antibiotics and then went through months of re-testing.

Seven years on and I have gone from being an alpine climber to being virtually bed ridden. It started with severe weakness in my hands and lower arms and has gone from that to chronic fatigue and pain. I'm being investigated by a neurologist and a cardiologist as well as a pulmonologist. Ground glass has shown up on my lung and my pulmonologist is a little baffled as to why. He immediately refereed me to a neurologist who is now testing me for a load of auto immune disorders.

My son has just reminded me to tell them about my incident 7 years ago. Could this be onging-Lymes?

My symptoms are (and these were very sudden. I am normally very fit and healthy) as so,

Extreme fatigue
weakness to all four limbs but especially in the arms and hands
foggy in my thought process
occasions of blurred/double vision
difficulty swallowing and producing too much sliver
pain around the chest
cramps in the lower back and cramps in fingers
tingling left side of face towards upper lip
breathless
palpitations
disturbed sleep and waking with air hunger. I have been tested for this and my sats are low (not dangerously) when I lay down.

This morning I called my pulmonologist and left a message with his secretary about the high possibility of previously having Lymes disease. What worries me is, how accurate are the blood tests? and if this does turn out to be a consequence of Lymes, what can they do to treat it?

[Ricobord]

I have not heard good things about standard NHS tests for Borreliosis.  
I've heard good things about InfectoLab in Germany. They have more accurate tests, as well as a couple additional ones that can help in a diagnosis. They are affiliated with ILADS and have a recommended list of tests for chronic Lyme.

I don't believe that NHS doctors will order tests from this lab through the NHS. I think it's only private pay. And from what I understand, NHS doctors are not allowed to treat Lyme for more than a month. Chronic Lyme can take many months or even multiple years to treat, and only private doctors will do that. I understand they're few and far between.  One guy who came to this forum last year ended up flying to the U.S. for treatment.  Many people in the U.K. end up at the clinic in Augsburg, Germany that specializes in Borreliosis.

Sorry for the discouraging words. But to encourage you, long term antibiotics make a very big difference in the vast majority of patients. You may struggle to get the treatment you need, but it's worth it to get past the disease.

[JackieCalifornia]

Maria,

Which test are you having done?

[MariaBanelli]

So sorry about the cross posts. I wrote this one first but my computer closed down when I hit send and I didn't realize it had published itself.

I have taken Jackies advice on the other thread and asked for a specific test. I'm having that done later today.

Ricobord, your post is hugely helpful. I am definitely taking this further and will follow your advice.

I'm obviously worried about my now grown up son. I am going to suggest we both seek out ILADS affiliated doctor and get properly tested.

Many thanks

MariaB

[Ricobord]

The blood antibody tests are very often false negative in the first month. Perhaps it was too early for you to show enough antibodies on the test, but late enough that your son did.

The fact that your son's doctors kept retesting him shows that he didn't know what he was doing. Tests are not helpful in trying to determine if the infection is resolved or not.

Also, your doctor should have retested you, too, especially with your rash. The bad news is that standard testing is really quite poor, but doctors have been taught that nearly all Lyme patients will test positive.  It's been a disaster for Lyme patients who go for years undiagnosed.

All of your symptoms are consistent with late stage Lyme Disease.  The hard part is that a great many late stage patients test false negative, because antibodies decline over time as the infection moves into various hiding places in the body, including the nervous system, joints, connective tissue, and organs.  It's been extremely difficult to convince health officials to revisit a testing protocol that they've been insisting is terrific for over 15 years.

You'll need to get retested, but don't put much hope in standard testing. There are specialty labs that do more advanced testing than the NHS. One in particular is in Germany.  You'll definitely need to get to an ILADS affiliated doctor who is willing to treat you long term.  I've heard they're hard to find in the U.K. because of the hostility towards long term antibiotics there.

I'm so sorry your doctor wasn't willing to treat you up front. It'll be a battle, but you can get better. You'll have to be your own advocate and do what it takes to get the treatment you need.

[mkh9]

As JackieCalifornia said the tests can vary and a false negative is possible with some tests. You also don't always get the typical Lymes disease rash. So, I would go to the website http://ilads.org/ilads_media/physician-referral/  to get a good doctor in your area that knows about Lyme treatment and acessment. There is a good lab called IgeneX that has reliable results I think they are around >96% for the screen. Hopefully, you can get a "lyme literate" doctor who knows all about Lymes disease. Your symptoms do sound like they could be due to a Lyme infection and /or co-infections. It would be good to "rule out" Lyme disease if you can or get treated for it if you have it before going to a bunch of other doctors. I hope you don't have it. But getting a good diagnosis is important.
mkh9

[JackieCalifornia]

Hello again ... I didn't see you had made several posts, so I have already answered one, out of order.

To your questions:

-- "how accurate are the blood tests?"  There are different tests used by different physicians, and some are better than others, but none is totally useless.  I would suggest you find a physician who has received good reviews online or is recommended by a Lyme patient and go from there.  After you are tested, be certain to get full copies of all the test results, and then decide, based on what the physician says, whether to take the initial tests for a second opinion from another physician.  Sounds cumbersome, but I don't know that there is a more effective way to approach it.  Dialing up a physician's office and asking 'What tests do you use' probably won't get you much information ... but it can't hurt to try, if you're game to do so.

-- "what can they do to treat it?"

Antibiotics.  Which ones depends on what other infections the "Lyme" ticks may have also brought you.