Hey
Ive been tested for Lyme as ive had a lot of the symptoms for a while. My test came back negative overall
I want to know if I need to follow up as my Burgdorferi IgG didnt come up as negative just less than 5.0 AU/ ml instead of being greater than 15.0 AU / ml
Is this something I need to re test for or is it normal to have a trace of that and no be diagnosed with Lyme?
My Bergdorferi IgM was negative too.
Do you need both present for a diagnosis?
Any advice is really very welcome
Hi hummdiddydum. Where did you get tested are you in uk ?
Hi. Were you bitten at all? The serum test is poor my consultant has admitted it has 50% accuracy but together with the western blot they achieve 100% accuracy. The european strain of Lyme is on the bands of the western blot. The serum test will not pick this up, yet it must be positive to go on to the western blot in most cases., unless you have a very nice doctor. Sometimes it is easier to test for coinfections rather than Lyme. My serum test is negative, i hunted coinfections and found 2 rickettsea and ehrlichia..that was a shock. Also check ACE test through your doctor but if high force a rickettsia screening and ehrlichia..thats how i found mine. I have to get a Western blot soon .x
Hi sky do you live in uk. My uk gp isn't interested in testing me for Lyme
Yes I live in uk. If you check the new NICE guidelines on lyme you will see they are deeply flawed ..have a look. Unless your gonna present with a definate rash, your up the creek without a paddle. I had to go private for my tests with a uk lab. If you go to the german labs it is very easy to dismiss the results. interestingly the US medical fathers of Lyme treatment are currently being challenged in court by 28 very sick citizens who are citing collusion with insurance companies on minimised to no treatment . Should these citizens win,then the foundations of lyme treatment will be shaken somewhat plus it opens up the possibilities on litigation. xx
Hi Terry
I got tested with a company called Medichecks Yeah I live in the UK.
Apologies for the delay I've been laid up for the last week.
Thanks J
I dont remember a bite but I've done a lot of walking around the UK often wearing shorts in long grass, I dont remember a rash but I never used to self check or anything and i'm a bit scatty.
If there is a level showing on my Elisa just not enough to consider it positive is that something I should be concerned about?
I will look into the western blot I'm so confused by my symptoms sometimes I feel like it's a structural problem in my neck that's putting pressure on my body other times it feels like an illness.
I know what you mean about the neck and the illness. I have the same. It also affects the hands and fingers. Sometimesyou feel ok and then a wave of sick weakness fatigue comes at you. Right test your Vit D level also white blood count. Ask for an ACE test from your doctors. The ACE level should be under 55 . If it is over ask to test for ehrlichia..they will mention sarcoidosis , dont panic just request tge test.. Also ask for a rickettsia screen, remember rickettsia typhus transmission is not confined to ticks , it can be passed by fleas and biting flies and you sound as though you may have met a few on your walks. Getting the western blot may be difficult is your first serum test is negative, the cost privately is anything from £250.00. Remember just as the serum test ,the western blot is not that accurate either. I think if there is a level showng on your elisa it is worth rechecking it. You have to stand your ground at the Doctors and say you want to put all these tests to bed before looking at other avenues. i am aware they are not particularly helpful which makes things worse.
Also it is worth mentioning another strain of Lyme has been found. It is not picked up by testing..i could raise an eyebrow and say how do they know its infecting us? Anyhow, if it exists then it comes under recurrent fever.
I will try my best my doctors are convinced i'm having a mental breakdown and are having me question my own sanity as i've been ill for 10 months and they just look at me like im crazy when I describe my symptoms. Most muscles in my body are rigid and I'm in constant pain, Ears and blocked and have these strange nobbles on my ears which go up and down and are sore. I don't think they're visible but i can feel them. My heart rate goes really high when I walk around and really low when I lay. Sometimes I get buzzing through my whole body head to toe and the scariest one yet Is that I've lost a lot of internal feeling I cant feel my body temp I can't feel my heart beat I can't feel my head, My hearing changes as have my eye. it's so strange but I know it's not psychological I just can't figure it out.
my vit d levels were tested privately in June and were at 79 which was deemed ok although I have started supplementing with an oral spray since it's got to winter.
I will press them for the other tests and see what they say thank you for coming back to me I really appreciate it. Its such a confusing time and any help diagnosing this is brilliant. x
Getting sent down the psychological route is always the big challenge with lyme or tick related illnesses. One of the coinfections i have causes high anxiety cannot remember which one. I just spent a week logging everything down from the beginning..a list if you like with as many dates as i could and copied it for each doctor...they seemed grateful..odd that. But that way it saves all the grief of running through the whole thing and not missing anything out, plus you look organised. Also, getting educated on the whole lyme field helps because it is full of conflicting opinions. temperature charts can be useful and also logging foods and any extra symptoms occurring with foods. In my case my Vit d went crazy but it was calcium suppliments which caused trouble so be wary. Are you sore at all under the armpit area? are your glands up?
What do you mean by going private?
In my humble opinion going private seems to be the way we the tick bitten are being driven...see the new NICE guidelines.
For those who test negative on the first serum test the western blot will not be offered so there really is no chance of seeing whether there is an infection of the European strain of lyme. It is thought 21 days of antibiotic clears lyme..but in my case it came back or something else did maybe anaplasmosis.
I use uk private testing labs..it's cost me badly to find out what infections I had. Once I found out things fell into place..it does not mean it will be treated on the NHS..they do not have to accept private tests..no matter how good and well established the lab. thats what i have found anyway..hope others have better luck.
How do you find private labs for testing?
Also you can just Google for them. How do you pm someone..
I’ll PM
Hey
Thanks this is all great. I haven't been getting temperatures except my back of my neck and under my ribs seem to get very hot at times I have broken capillaries under my left breast. My body doesn't deal with heat properly either it can't seem to heat itself up or cool itself down very well. I can't feel my own body temp but I notice that If I have a hot water bottle or something it just heats my feet it doesn't heat my body. I've also lost a lot of my other bodily senses like bladder and hunger etc I can sometimes feel something quite distant.
I don't get fevers I don't think just body flushes from time to time but on the most part I dont have any classic "Illnesss" symptoms and never had I just felt tired and drained at the beginning for a few weeks but put that down to working hard.
My glands aren't up but my armpits esp the left are very sore and it spreads over my breast plate.
I've got a spreadsheet with all my symptoms on and when they started and a timeline also any tests i've had an the results. I've also requested all my medical records from the hospital including any bloods and scans I've had done that could take weeks to come through.
Thanks for your responses
Good keep all information. If my symptoms are any use here are some. Swollen and a bit painful under both armpit and shoulder blades and breasts and down the ribs. One spot on soles of foot..pain in wrists. Pain in feet. Red markings an ankles. Red line marking to ear. Pain in the neck..fatigue weirdly off colour.
Check armpit infection online..there is a picture of affected areas which could be useful when explaining pain to a doctor. Keeping a sreadsheet looks like your focused and that's a good thing..do you have pets at all. Were you bitten in your memory. Do you or have you had any red streaks that look like stretch marks..they may have just hung around a short time. Have you had any markings on ankles or wrists Are there any fungal infections. make sure the soles of your feet are clear of spots. Xx
Thanks for replying and info I'll look into this company I'll give you an update