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littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/28/2010 8:06 AM (GMT -7)   
Can anyone tell me if a lumber puncture/spinal tap can be used in order to detect/diagnose lyme?

jackie81
Regular Member


Date Joined Jan 2010
Total Posts : 41
   Posted 8/28/2010 9:45 AM (GMT -7)   

Hi

From what I read there is less than 9% chance that it will be detected in spinal fluid. I am going to be having a lumbar puncture soon to see if it shows up in my CSF and to also check for other things


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 8/28/2010 10:02 AM (GMT -7)   
I had a lumbar puncture last January to check for MS and menengitis.. My spinal fluid did test IGG positive for Lyme. I had previously tested positive for Lyme on the Western Blot.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/28/2010 2:49 PM (GMT -7)   
Hi Littlehutton!!
I can't remember welcoming you yet, so please excuse me if this is a repeat!! smilewinkgrin
Welcome to our forum!! I'm sure you will find us a caring, friendly, understanding bunch!!! I am sorry that you have a need to be here, but you have come to a good place! We have a fairly well-rounded group here, with several types of treatments being represented, and a whole lot of info available.

A lumbar puncture is not usually a good way to test for LD, as not everyone has the antibodies in their Central Nervous System. Also if you have had LD long enough for it to go chronic, it is possible that it has moved into the tissues, where blood tests cannot detect it's presence.
My experience was that I had to be on abx for a full year before I tested positive for Lyme, but I got LD at a very young age & wasn't treated sufficiently until recently.

I hope this helps some!
Trav.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/29/2010 10:05 AM (GMT -7)   
Hi All

Thank you for your responses, and welcoming me to the board!

Ive been in limbo land for 5 months now, Im not totally sure I have Lymes, but its certainly on my list of suspects.

It started of with fatigue and back ache back in March this year, and things have gone down hill ever since. Ive developed multiple neurological symptoms, Including numbness in arm, fingers and toes and from the waist down on 2 occasions. Weak legs, and jelly type legs which lasts for a matter of minutes. Night sweats, Headaches, tremors, swollen eye lid, blood shot eye, wet cold sensations in legs, tingling and prickling sensations all over but especially on face. Twitching, sore spots all over body on and off, knee pain, foot pain, stiff neck, face drop, bruising at the slightest knock or pinch, burning skin though doesnt feel hot to touch or go red, ive had the burning skin all over from head to toe all at once at times, it feels a bit like sunburn but really severe. pressure in my head and a strange headache which almost feels sore like my head has been cut right across my skull. Legs often feel unbalanced, almost like one is longer than the other or that im walking on a slope, and sometimes my legs are really stiff. My eyes started to sting along the bottom lid and in the corners about 8 weeks ago, and now my eyes are extremely sensitive to light and my pupils dilate to different sizes at different times, sometimes they look normal, but rarely. I cant sleep right through, and I have constant back pain which is in one particular spot under my shoulder blade on the left which radiates into my arm, underarm and ribs. Ive had out of body type experiences and often feel confused and anxious. The symptoms seem to get worse every week with newer ones developing, last week my whole left side went numb. Ive been to A%E 4 times, seen various specialists, undergone loads of tests including MRI's of brain and spine, and they still dont know what is wrong, ive been treated so badly by the medical profession, and dismissed so many times because they dont know what the problem is and it challenges their god complex. Ive had a blood test for lymes which was negative, ive just had another done on Friday, waiting for results. My doctors are completely deluded when it comes to lyme, there is only one lime literate doctor in the whole of the UK to my knowledge, who is miles away from me, but I would be prepared to go there if need be. My neurologist at first thought I had MS, which has been ruled out by the MRI's, however I believe he wants to do the lumber puncture to look for O-bands in relation to this, and other possibilities. The only tests ive had done which have shown any significance has been my white blood cell count which is elevated. I also forgot to mention that when these symptoms started I kept getting hives on my face and neck but no bullseye rash, I was also very itchy and had 2 panic attacks in quick succession, something I have never had before. I just dont know what my problem is and neither do any of the doctors, im running out of tests to have done and also feel im runnning out of time sometimes as well due to the speed in which my symptoms are developing. There are not many body parts left for this to effect. Does this sound like lymes to anyone, I think a lot of my symptoms fit apart from my eye problems and the constant back pain in one particular spot. Any feedback would be much appreciated. Sorry for the extremely long post, and thanks for you patience in reading it!!!!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/29/2010 2:49 PM (GMT -7)   
Oh gosh, Little hutton!!!
What you have described could of been my first post here!! I am so very sorry for all that you have gone through!!!
So you live in the UK? Have you been to any online support groups for Lyme Disease based in the UK? Here is a link to one of them -
health.groups.yahoo.com/group/EuroLyme/

One of the few things that I know about tick-borne infections over there is that unless you got infected from somewhere else, you would be carrying a very different strain of LD than what is commonly seen here in the US. So the treatments that you will read about here may be different by necessity. Don't get me wrong though, we can still help you make it through this time in your life!!!

With the symptoms that you listed, if you don't have tick-borne infections I would be surprised!!! Most docs over here take the ostrich stand (head in the sand - "If I can't see it, it won't harm me!), & it sounds like there's not a whole lot of difference in how patients are treated.

I would also like to suggest that you read as much as you can, as you will need to become your own health advocate - ensuring you get the best treatment possible. You should start with the thread at the top of this forum "New to Lyme?...Start here", if you haven't already read through it. It contains some very important information about tick-borne diseases & what you can do to help yourself.

I do hope that this has been helpful.
Hang in there!!

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 8/31/2010 3:38 AM (GMT -7)   
HI Traveler

Thank you so much for the info on eurolyme, they have been very informative and I have located a hospital in london, only an hour away from me, which tests for lymes and co infections, they actually send your blood tests to the states or germany, so a lot more effective than the standard uk nhs blood test which ive already had. So think this may lead to something hopefully. Thank you so much again for you encouraging thoughts and advice.

All the best

Ruth

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/31/2010 5:27 PM (GMT -7)   
That's what we are all here for - to give & receive advice!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 8/31/2010 9:48 PM (GMT -7)   
I'd be very, very surprised if you didn't have Lyme.  The eye symptoms also can be caused by Lyme (the different size pupils, the irritation and redness, etc.).
 
From the sounds of things, it might be a good idea to set up an appointment with the LLMD there sooner or later, since it might take a while to get in to see him.
 
Take care,

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/1/2010 12:46 AM (GMT -7)   
Thanks razzle

The pupil thing has thrown me off slightly because ive never heard anyone else with lymes mention it before. It is common in MS however, But I have so many symptoms in a short space of time which doesnt quite fit MS either, usually this is a slow progression disease. Does anyone know if a high white blood count is also common in lymes patients? And does anyone's legs sometimes go like jello?!?Thanks for all the info guys! Take Care

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 9/1/2010 2:26 AM (GMT -7)   
Yes, you can have a high white cell count with Lyme, but it is also possible to have normal or low white cell counts with Lyme. And the jello feeling in the legs is also something that can happen with Lyme. Basically, Lyme can mimic over 300 diseases, because the bacteria can wiggle its way into any tissue or organ anywhere in the body.
-Razzle
Chronic Lyme & Bartonella, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, Progessence+ (wild yam + essential oils), Moducare, homeopathy.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/1/2010 6:31 AM (GMT -7)   
Thanks again razzle for the useful info, I have been emailed all the costs from the london hospital re lymes testing, it seem quite thorough, they check for all the co infections as well. The cost is around £2200 but think its worth it, sadly insurance co wont pay, but luckily I have some savings to cover the cost. I have a lumber puncture scheduled for next week with my neurologist, again this is all to do with the MS diagnostics, but have heard sometimes even these can detect lymes. Once this is out of the way and results are through, I shall be pursuing the lymes tests. I just hope I dont spend a fortune then end up with negative results, that would be just awful!

Thanks again

Ruth

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 9/1/2010 8:54 AM (GMT -7)   
Hi Ruth. I have many of your same symptoms and am diagnosed with Lyme and two other tick-borne infections. For years before I was finally diagnosed, my blood tests always revealed a slightly elevated white count and whatever doctor was reading the test always commented that I was probably fighting a little infection. I've never had confirmation of this, but it makes sense to me that I wasn't afflicted with various mundane infections just before blood tests; that elevated count was because my body was trying to fight these chronic Lyme bugs.

Wow, 2200 is expensive for testing. I hope you will get a definitive diagnosis as a result of your investment, but sometimes it doesn't work that way and a qualified Lyme doctor will make a clinical diagnosis based on your symptoms. I am glad the test includes coinfections. I haven't run into anybody yet who has only Lyme. Please keep us posted how you are doing.

Rose
I have Lyme; it doesn't have me.

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 9/1/2010 1:02 PM (GMT -7)   
Hi Rose

Thanks for reply, the doctors have been telling me the exact same thing regarding the white blood cell count! According to them i've been fighting a little infection for months on end! One of my doctors even blamed it on anxiety!!!! Have you ever heard such nonsense!!!!!

Yes the cost involved in these tests is very expensive, however worth the money where health is concerned, but a negative result would be devastating! But that is a chance i'm willing to take. I hope and pray the tests show something, that would be fantastic!! If they do I shall be sending copies to every doctor who ever doubted me!! ha ha!

Will keep you posted, thanks again

Take care

Ruth
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