Anyone? Thanks again.
Posted by Pinelady (Member # 18524) on :
You are on the right track. 83-93 is the DNA of
borrelia. If you have been treating for over a year
it may be time to consider IV? But I don't know
how you have been treated so maybe more could offer
other ideas?
Posted by Robin123 (Member # 9197) on :
Those are positive Lyme bands, plus so are your symptoms.
How have you been treating the Lyme?
I just put a post on Radha's thread about eyes - how I am successfully treating eye symptoms, if you'd like to go see.
Posted by kmj (Member # 18400) on :
Thanks for your replies. I have not been treated
for Lyme yet, only Babs. I started the babs
treatment in Spring this year. Did it for 3 mths
and then quit when I had bronchitis (sp?) and had
to take yet more drugs. It was all too much.
I did not start again. Had to wait 4 months to
get back in to see the LLMD at which point he
repeated the bloods. The results are the ones I
just posted.
If I do indeed have Lyme, I think I got it in 2000.
I was upstate NY working on a tv commercial and
we were shooting in long grass. I felt something
bite me - but it looked like a spider bite not a
tick. I have had a ton of tick bites as a child,
literally pulling them off myself weekly - grew up in the country.
Back to the bite, there were 2 very clear holes in my ankle. It swelled and
tracked red all the way up to my knee - was like
that for at least a week. I got steroid shots in
hospital.
After that, I started having seemingly unrelated
health problems. Got dxd with a brain cyst of
unknown etiology after having weird dizzy spells. No-one has been able to tell me
how/where it came from. Size of a golf ball but
stable. I began feeling disoriented.
Then 01, dx'd with SVT - tachycardia. Faint/light headed.
02, miscarriage. Later that year, chest pain dxd as pericarditis.
03, bone pain in legs, saw doctor, tested for
Lyme (-ve) and all other tests _ve. Disappeared
on its own.
04. Dx'd Chronic sinus disease. Have had sinus
problems ever since. I get very congested, pain
pressure in head etc.
By 06 the neuro problems had started. I now have
a lot of ALS symptoms but thank god, so far no dx.
LLMD says that he is not convinced my problem is
Lyme. He thinks it may be part of the picture. I
want it to be the answer of course. I am desperate
and afraid that after all this time of neuros
saying they don't know what it is, they will give
me the ALS dx. Terrifying for anyone but I have 2
very young children.
Anyway, I got off track here. It is just good to have someone to "talk" to who understands.
Re the eye thing, I went to an eye doc. He tested
my vision and said I needed reading glasses - which I bought.
Helps but my vision in that eye is all over the place.
Some days it feels fine, others it is so blurred for close up or distance.
Both eyes take a long time to adjust to light/dark.
Eg if I open the fridge door at night and the little light goes on, my eye can adjust but when
I close the door and am back in the dark, it is
totally blurred. Who knows what that is.
LLMD didn't give me much hope for recovery. He also said that Lyme is an "opportunisitic infection"
so it thrives where there is already an
underlying medical problem.
I don't know what to think anymore but I am
hanging all my hopes on this 4 week treatment.
BTW, he said that if I do not see any change on
the meds (better or worse) we can assume it is
not Lyme. : (
Sorry this is so long. I need to feel I have a fighting chance here.
Posted by carly (Member # 14810) on :
k,
You said...
quote:
So my question is this. Do you think the results
are really indicative of long standing lyme
infection. I've come to a dead end everywhere
else.
and...
quote: I asked thE
LLMD if Lyme could really cause all this stuff
and he said "with Lyme, anything is possible".
mine would've said simply "yes".
You also gave your test results...
quote:
Here are the results:-
18 kDA ++ 31 kDA IND 34 kDA ++ 41 kDA ++
On the IGG, I had 3 IND bands. 31, 41 and 83-93
Check out the Western Blot explanation. It's at the top of "Medical" under "Quick Links to Poluar Topics".
My question to you...
Are you sure you're seeing a real llmd?
Good luck, it sounds like you need treatment.
Posted by kmj (Member # 18400) on :
Well I got him from the Lyme yahoo groups. There
were 3 recommended.
I also don't know if my post was clear. The results
are for the IGG. There were no +ves on IGM, just 3 bands of IND.
Maybe I do this 4 wks and if nothing changes,
then try a new LLMD?
Posted by carly (Member # 14810) on :
It takes alot longer than 4 wks to get rid of an infection (or multiple infections) that have been invading your body and causing all that damage for all those years.
I've been told the avg treatment time is 1-4 years.
I get confused by IgM and IgG; I know IND is a weak pos. I'm not the one to give specific answers about test results.
I absolutely, positively KNOW that you will not get rid of it in 4 wks.
**I also know that many people test negative and it's a clinical diagnosis**
Look at your symptoms. There's also a "Symptoms List" in "Quick Links to Popular Topics"
Go to "Seeking a Doctor", some with more knowledge than me about these llmd's will chime in with their advice.
Posted by sutherngrl (Member # 16270) on :
Lyme Disease is a clinical diagnosis.
Posted by Pinelady (Member # 18524) on :
They are right. If this has been going on for as
long as you suspect. It may take over a year of
treatment. Don't be discouraged. This is a winning
game by playing the smart game. Not the fast game.
Posted by kmj (Member # 18400) on :
I just need hope. I need to feel like I do have a chance. I am so low with this. : ( Pinelady, since your dx is neuroborreliosis, are your symptoms mostly neuro? Are there many neuro lymies on here? Anyone else with signs of MND/ALS who has actually had lyme and has some success with treatment. I have only ever heard of one. Dr Martz I think his name was. Had bulbar onset ALS and recovered with lyme treatment. But is this real or an urban myth. I cannot find any real info about this person.
Posted by Pinelady (Member # 18524) on :
The Movie Under Our Skin describes many patients
who were diagnosed with MS/ALS symptoms.
I had MS symptoms. Getting a lot better than it
was. I was almost in a wheelchair. And I thought I