posted
I was really wondering if anyone could give me some information about Lymes disease. My brother, who is 24, is currently in hospital undergoing a gauntlet of tests. For many, many months now he has been developing pain in his joints (initially his right elbow, and now his left and hips also) and with it a peculiar angle of the joint, meaning that his elbows cannot straighten, and instead hang at almost 45 degree angles. He has been depressed, but I am not sure if this is part and parcel, or cause and effect. Last monday he woke up with Ptosis of the left eye - his face was unaffected, unlike Bells Palsy, but his left eye drooped down dramatically. Apparently, his pupils are slightly different sizes, but responsive.
He has had two MRIs, which have both come back clear, and on Monday he will be having a lumbar puncture. One of the things they are investigating is the possibility of it being Lymes disease.
He and I were both mobbed by ticks on a holiday, but this was 10 years ago now. Is it likely that such a thing can stay dormant for such a long time? Do his symptoms seem to relate to Lymes disease? The nuerologists say his symptoms are very unusual, and that they are using a scatter gun effect, testing him for many things all at once, but Lymes disease seems to be one of their more likely choices. Is there a simple diagnostic tool for Lymes? If it IS Lymes, would his symptoms be reversible?
Any help or advice you could give would be most appreciated.
Posts: 1 | From England | Registered: Oct 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
And don't be surprised if the spinal fluid shows no sign of lyme disease...one of the worst tests cuz it does'nt hang there...
MRI's are literally useless also.....they need to do spect scan or pet scan.......
even then it may be inconclusive.....
If they are doing bloodwork inhouse then your bro is in real trouble cuz their lab won't be able to do a wblot effectively and a elisa isn't worth the powder to blow it you know where...
You have got to get the hospital or you docs to send bloodwork to Igenex or stonybrooke labs...
MDL I have heard here is good also.....
Good luck and keep an eye on these doctors....
Why not reason with them and put him on IVrocephin while he's in hospital and see what happens to his symptoms....what can it hurt??
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Louise,
There are several people living in the UK who post here on occasion.
A woman who goes by "dontlikeliver" comes immediately to mind. Another goes by "Trude" although I have not seen her posting in over a year. You may be able to contact them through the Search function on this board to find out how they have dealt with getting treatment.
Lyme diesease certainly sounds like a strong suspect.
It seems from across the pond that getting treated effectively in England is even more difficult than here in the U.S. NHS does not recognize the frequency and severity and thus is reluctant to medicate effectively. Several people in the UK come over here twice a year or so to see a Lyme specialist. This calls for having a cooperative GP in the UK.
At your brother's current severity of illness, it sounds like he definitely needs to be on IV antibiotics for an extended period, as in months, provided it is Lyme that he is experiencing. Standard treatment for such situations over here seems to be 2-4 grams of Rocephin (Ceftriaxone) per day. Here we seem to have found it advisable to simultaneously be on an oral antibiotic and continue it beyond the IV treatment. If they suspect but aren't sure, is there any possibility they would do a trial of antibiotics? If so,one thing about which to be aware is that when an individual starts antibiotics, there can be a massive bacterial die-off. They release neurotoxins resulting in what is called a Jarisch-Herxheimer Reaction. In such a case, he would actually feel worse for perhaps quite a while. Because these reactions can actually be dangerous, some physician start up the antibiotics slowly.
It seems probable that your brother can recover substantially, if it is Lyme with which he is dealing. However, if he has been infected many years, he may need to stay on antibiotics to sustain his recovery.
Another possible source of help is a web site called eurolyme. These individuals are experienced with the borrelia strains common in Europe and also have a much better understanding on the mational health services.
Good luck in your quest to help your brother. He is fortunate to have a supportive family member.
David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Louise, There are good articles in the LymeNet library that you can look at.
posted
Two points mentioned here already...Lyme can be dormant for YEARS and YEARS...and don't expect to find spirochetes in the spinal fluid You might get lucky and have them show up, but you only have a 20% chance of that happening.
Arm yourself with knowledge! Read, read, read! The best lab for lyme testing is Igenex in CA..... www.igenex.com
here are some links......keep us posted on how he is doing ... We can help you get him the proper diagnosis and treatment. Sounds like Lyme is a definite possibility.
posted
You have been given such excellent information by the best on this board.
I had a droopy left eyelid which eventually caused me years of pain & other symptoms causing debilitation. I was misdiagnosed with myasthenia gravis for 5 years. My MRI showed nothing. I really had Lyme.
About 13 years later after onset of droopy eyelid, my MRI did show white spots on brain or "unidentified bright objects".
Evidently for me, it took years to show up on an MRI. The neurologist said it was too small for multiple sclerosis & looked more like Lyme Disease.
My 21-year old son also has Lyme & has a droopy right eye which shows up when he takes Zithromax.
Anyway, it's great to rule out other diagnoses, but if he does have Lyme.... the diagnosis should be made based on symptoms & not on tests, as the others have said.
He could test negative for Lyme, but have a raging infection of the brain. Your brother could ask that no steroids be given him as they will devastate the immune system & the Lyme will flourish causing a horrendous treatment setback.
Below is a link for a list of meds that are used for intracranial infections which, I believe, Treepatrol posted & is probably in the Newbie Links.
Medicines that go to the brain are so important for him. Otherwise, you're just shooting blanks when using meds that don't penetrate the blood brain barrier.
Sorry, I don't have the link fixed for you to just click on.
He could test negative for Lyme, but have a raging infection of the brain. Your brother could ask that no steroids be given him as they will devastate the immune system & the Lyme will flourish causing a horrendous treatment setback.
Good point(s)!!! Drs just love to hand out steroids!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
What a great sister.
Here's another link you might want to check out for info about doctors, NHS, and LD treatment in the UK -- a lot of UK lymies post on it: http://health.groups.yahoo.com/group/EuroLyme/
This disease --and the coinfections, don't forget them!-- appears to be able to lie dormant, or with only minor sx, for very long periods of time. Many people report becoming symptomatic after some kind of trauma -- accident, operation, illness -- and sometimes many years after the tick bite.
Also -- nymphal ticks are are absolutely tiny -- the size of a period at the end of this sentence. Many people (40% or more) have no recollection of the bite. So it's possible he may have been bitten more recently and not known it? Or been reinfected, kicking off a more virulent infection?
My hubby, who is CDC positive and had all kinds of neuro problems from LD, had normal MRIs and his lumbar puncture was negative.
Best of luck to you all.
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