posted
So my story is long and I wil try to shorten but I wanted to get some input from people who know more than me - I understand nothing at all about lyme. I started 2.5yrs ago with unexplained neuro problems - progressed slowly over this time and have included parethesia (burning and cold sensations), weakness in left arm/hand/muscle wasting, facial numbness, twitching and buzzing sensations in face and body, hoarseness and throat pain, partial vocal cord paresis, episodes of breathlessness, blurred vision episodes in right eye, episodes of vertigo, shaky legs, fatigue, episodes of SVT (tachycardia), difficulty swallowing etc etc. The list goes on. Some symptoms are constant like the hand atrophy and weakness and throat burning etc (I have damage to vagus nerve of unexplained origin). Have been tested for everything incl. Lyme, various auto-immune etc, MS, ALS etc. Have been seeing a top neuromuscular specialist for 2yrs and latest visit was just days ago. He still has no answers for me despite every test that has been done. His best guess was that my hand problems are caused my "something amiss in my neck" (all MRI s have been normal with the exception of benign brain cyst) and that the throat problems might have been caused by an "infection of some kind at some point". The rest he has no explanation for. I was feeling so lost. Then on the advice of someone close to me, I had Lyme testing done with an LLMD. He did blood and sent it to Igenex. According to this doc, the results show a possible old lyme infection with co-current Babesia and possible Bartonella. He said it is a weak positive so it is possible that I do not have it at all but that since I have unexplained symptoms, it could be lyme. I would love your input on the results. IGM - negative Igenex result but "IND" on bands 23-25, 31 and 41. IgG - positive Igenex result on bands 18, 34 and 41. Babesia FISH (RNA) - positive Bartonella - positive (borderline) since abnormal range is from 1.64 and up. Result was 1.64 exactly. I would love to know what any of you more experienced folks think. Does this look like Lyme? Any thoughts greatly appreciated. Thanks.
Posts: 42 | From new york | Registered: Dec 2008
| IP: Logged |
posted
I put some space into kmj's post for those who are visually challenged. [most of us!]
So my story is long and I wil try to shorten but I wanted to get some input from people who know more than me - I understand nothing at all about lyme.
I started 2.5yrs ago with unexplained neuro problems - progressed slowly over this time and have included parethesia (burning and cold sensations), weakness in left arm/hand/muscle wasting,
facial numbness, twitching and buzzing sensations in face and body, hoarseness and throat pain, partial vocal cord paresis, episodes of breathlessness, blurred vision episodes in right eye,
episodes of vertigo, shaky legs, fatigue, episodes of SVT (tachycardia), difficulty swallowing etc etc.
The list goes on. Some symptoms are constant like the hand atrophy and weakness and throat burning etc (I have damage to vagus nerve of unexplained origin).
Have been tested for everything incl. Lyme, various auto-immune etc, MS, ALS etc. Have been seeing a top neuromuscular specialist for 2yrs and latest visit was just days ago.
He still has no answers for me despite every test that has been done. His best guess was that my hand problems are caused my "something amiss in my neck" (all MRI s have been normal with the exception of benign brain cyst) and that the throat problems might have been caused by an "infection of some kind at some point".
The rest he has no explanation for. I was feeling so lost. Then on the advice of someone close to me, I had Lyme testing done with an LLMD.
He did blood and sent it to Igenex. According to this doc, the results show a possible old lyme infection with co-current Babesia and possible Bartonella.
He said it is a weak positive so it is possible that I do not have it at all but that since I have unexplained symptoms, it could be lyme. I would love your input on the results.
IGM - negative Igenex result but "IND" on bands 23-25, 31 and 41. IgG - positive Igenex result on bands 18, 34 and 41. Babesia FISH (RNA) - positive Bartonella - positive (borderline) since abnormal range is from 1.64 and up. Result was 1.64 exactly.
I would love to know what any of you more experienced folks think. Does this look like Lyme? Any thoughts greatly appreciated. Thanks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I would say those results would be enough for me to want to be treated for Lyme....for sure. And definitely get treated for the bartonella and babesia.
Have you read Dr C's Western Blot Explanation? I'll bring the link here in a minute.
Be sure to print it out and read it several times. Be sure to also read all of the replies to the original posting. You'll learn a LOT!
PS... Some of the sickest patients are those with few bands showing up. It's because their immune systems are very weak and can't register a response.
posted
Sorry for the unreadable post. I get the blurry vision too and should have thought of that.
Appreciate your helping me out.
Posts: 42 | From new york | Registered: Dec 2008
| IP: Logged |
DebAz
Unregistered
posted
just a quick comment here. Years ago i had a similar test result and was told it was a past infection and it was not a current issue. That was 8 years ago and then upon getting the flu last year so badly i could not get out of bed and was not healing.. I was tested again for everything... now lyme is positive on IGM and IGG.. and CDC reported..
So.. that said.. i would take it seriously.. And as well after my first test I went in all sorts of other avenues and was told i have FMS and CFS and such and was even treated with abx starting 4 years ago when i was still lyme negative but postiive for babesia and hemobartonella and mycoplasmas and such and have always have viral loads of various types.
ones you start tracking and testing for all the bacterial viral fungal and others... you will see a trend of some come up and some go down on the tests but once you are positive for past or current..
Take it seriously..
My first tests 8 years ago were all EBV positive and active and then i kept adding more things that were current and past.
Now that I know more I do not put off or act as if past infection markers are not important or need to be looked at ongoing.
Hope that might help or make you think.. ahead ..
And not go through what i did for years..
Chasing what is all now one big mess.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic