I lived in Colorado for a year back in 2000, and since returning to the UK I have suffered from certain neurological intermittent issues such as slurred speech, dizzyness / disorientation, word-finding problems - I have since had it diagnosed as a peculiar type of migraine.
More recently, I have been presenting a whole myriad of problems that are really starting to concern me.
18 months ago, I started getting pains and discomfort around the inside edge of my shoulder blades. I thought it to be muscle strain.
Then, 14months ago, I started getting severe clicks in my hip joints, with considerable pain.
Shortly after, my shoulder joints started clicking and aching.
Then other joints joined on the bandwagon - always with clicks when moved, and aching - jaw joint, neck joint, wrists, ankles, knees - although knees where not too agrivated.
At this time (14months ago) I started inquiring with the doctor - had tests for arthritis and all arthritic/inflamatory indicators came back showing normal. I was also tested for low testosterone, which also came back normal.
More recently (just after Christmas), and of special concern to me, my chest has started causing me a lot of pain. Generally, I will be sat down (due to my aching joints lol - sorry - don't know if humour allowed), and completely out of the blue I will have a momentary pain on the left side of my chest, just at the bottom of my diaphram, and will have an instantaneous surge of adrenalin - I will involuntarily sit up and breathe in - some shock. Afterwards, generally shakey and tired. I also feel like I need to cough to clear my airways (even though technically clear) and feel breathless (though unlike after exercise - more sense of not having enough oxygen). I then get dull aches on the top part of my left chest area, just above my nipple, and can feel tender.
My doctor thinks it could be Bornholm Disease, but really doesn't seem to fit at all with my other systemic symptoms.
I insisted on being tested for Lyme Disease after hearing a report on the news of a woman who had similar symptoms to mine (though I can not remember ever being bitten or any bite marks / bulls eyes). My doctor reluctantly put me in for a test, 'Borrelia C6 Peptide EIA' and my results were negative.
I'm totally clutching at straws, and my doctor doesn't know what to tell me apart from prescribing anti inflamatory tablets.
Anyone got any advice? Do my symptoms fit with Lyme? Any contacts in the UK that I might try (did try googleing but nothing substantial came up for the UK).
Bit desperate, though trying to smile! Thanks! John
[Apologies - posted same message in General Support - but only afterwards realised was probably best in Medical Questions - SORRY ]
[ 03-07-2009, 02:03 PM: Message edited by: John Fin ]
Posts: 9 | From England | Registered: Mar 2009
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posted
Ps. forgot to mention pain in lower back (normally quite bad); and pain/stiffness on both thumb joints (bit weird, noramlly happens at the same time).
Posts: 9 | From England | Registered: Mar 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, it sure sounds like it could be lyme/tick-borne diseases. I had all those symptoms too with untreated lyme.
You need to find a lyme literate doctor to evaluate you. England has lyme as well as Colorado, so exposures could have occured in either location.
There are others here on lymenet from England; I hope you can find one of them to guide you through this a bit!
Best wishes for your health.
Posts: 2557 | From home | Registered: Aug 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Can you get your physician to order an Igenex western blot IgG and IgM, test #188 and #189?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Just been told now on a private message that those are more sensative tests... I will ask him. I've also been forwarded a Lyme Disease Consultant's webpage for the UK (http://www.drowen4lyme.co.uk/) so will be getting in touch with them too.
Do my symptoms sound like a good fit with typical lyme disease ones? Not wanting to be obsessive, or self-diagnose - just wanting to sound of others to get an idea if I should be even chasing this with specialists.
Thanks, really appreciate advice/responses, John
Posts: 9 | From England | Registered: Mar 2009
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bettyg
Unregistered
posted
hi john; i'm your 1st private messager w/my welcome letter, etc.
please see my newbie package links; table of contents, and look for the SYMPTOMS area. you'll find many links there of symptoms for lyme and co-infections: babs, bart, erlichia, etc.
YES, WE LOVE TO HAVE HUMOR due to this serious disease we have!! the more the merrier.
we also have many england members here! you can find them using DIRECTORY at top. go to left side; 1st line and type england in 1st time; great britain 2nd time;
then use arrow next line for LOCATION; click search.
it will show you all from EACH of those specific things you typed.
you might print it off for your info; those on bottom are MOST CURRENT MEMBERS you could contact.
england has 2 llmds; but members here do NOT go to them! they have found coming to USA is better for them since we are more advanced in lyme treatment here.
what you might do is to "cut" the SUPPORT post and paste it to SEEKING DR. FORuM. then while you are on your post there, to delete it...
click on pencil; 3rd box to right of your name. go to top left corner click delete post; hit enter, and it's gone!
ignore moderator's comment since you can delete your posts anytime including if you started a post and you have replies to it!
new post; subject line: ENGLAND LLMD NEEDED.
now you have attention of those from where you live, and they can share who they go to, etc.
go to bottom left corner and mark box to receive all replies; click send; done!
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posted
The director of the IGeneX lab said that the C6 peptide ELISA test will miss anyone who did not have a bull's eye rash. Do you remember one at all?
Even the IFA test is a more sensitive screening test than the C6 one, but the two Western blots are the best ones to do.
Even then, only 60-70% initially test positive for the Western blots who have the disease, so it's treated clinically - ie, by history and symptoms.
Your symptoms sound like Lyme.
You can study here for all the ways we treat Lyme disease. There are lots of ways to do so. You will need to treat.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I absolutely don't remember any bull's eye rash. Have done my fair share of adventure sports, and spent quite a bit of time in the Colorado Rockies, the Himilayas and the Andes, as well as general walking around countryside areas in the UK, so I guess I have been exposed to areas where there are ticks.
If I do have Lyme, I don't understand why I would have neurological issues for years, and then only recently start with the joint / heart pains.
I have got the contact details of a couple of LLMDs now in the UK so I will be phoning tomorrow...
Thanks for continued advice from people, Been a real help! John
Posts: 9 | From England | Registered: Mar 2009
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posted
You could also try the tests at Borreliose centrum Augsburg, or the other lab in K�ln, they are western blot tests amongst others, they also run the CD57 test which might be more revealing.
I do not know how well they can find american strains of borrelia.
The western blots often do not turn positive until after a month of doxy or other antibiotics, as they only detect specific antibodies to certain parts of the borrelia bacteria,
and one's ability to make antibodies is greatly reduced in lyme, especially late lyme....the less antibodies, the worse one is off, the lower the CD57.
There is also the lab in Poland with a real-time PCR, that is like looking for the proverbial needle in the heystack, but if they find it, there is no doubt.
It only tests for actual borrelia, not the antibodies. A negative real-time PCR just means they did not find it , it does not mean you have no lyme. Someone posted they were positive after taking grapefruit extract beforehand. no doctor needed to order that test.
Just what I picked up from forums, I am in Europe.
[ 03-10-2009, 05:05 PM: Message edited by: n.northernlights ]
Posts: 366 | From Europe | Registered: Nov 2008
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posted
John, it's typical for Lyme to affect different locations/systems in us at different times.
fyi, IGeneX lab says they can test for strains worldwide with their IgM and IgG Western blot tests.
They use two strains, B31 and 297, which are supposed to include most antigens.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
hi john, I have a lot of the similar symptoms. but cant find an LLMD that takes my insurance (LI, NY)
Good luck to you, please update when you have more info as it will be useful to me
Posts: 9 | From Long Island, NY | Registered: Nov 2008
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