So I was thinking I am on the way to recovery when something very confusing happend. I moved across country so no llmd here yet.
When I moved to East coast new dr's my family dr. ordered a new western blot at Quest labs. I had my previous one done at igenex cdc positive.
Well today I open my mail telling me my western blot was positive and had a px for doxy.
I called the dr office and said I did abx treatment last year and they said I didnt have to take it.
So I guess my question is is that normal to still be positive. Alot of my symptoms have subsided. Im confused as to what to do at this point.
Im finally getting my life back. going to college and will never forget how sick I was on abx, and really not wanting to do it again, not sure if I gotta or should..
Any ideas guys Posted by coltman (Member # 21272) on :
Positive what. IGG? Or IGM too? How long since you took abx last time?
Did you have symptoms before abx? OR they only came when you were on abx?
Posted by Cadames62008 (Member # 16275) on :
It did not say if it was igg or igm. So I am not sure and do not have a appt to see the dr till the 24th.
I had many symtoms before dx which took 2 yrs to get. Alot of neuro and even had affected my heart. My bp was very low. bad vertigo, fatigue, weight loss just to name a few.
My symptoms did get alot worse when I was on abx. I honestly remember feeling when I started treatment that I was going to die.
I stopped abx treatment last October.
Posted by sutherngrl (Member # 16270) on :
Why did you get a WB done recently? Do you have Lyme symptoms now? I guess I am confused as to why you did a WB if you are getting your life back and you feel fine now.
Sorry I don't know anything about why you would have a positive WB once you are well. I think you would always have IGG bands, but seems like the IGM's would go away. But I'm not sure.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Cadames62008: It did not say if it was igg or igm. So I am not sure and do not have a appt to see the dr till the 24th.
Hmm now I need to research this more! - as it seems antibodies are not reliable indicator of active infection
quote: My symptoms did get alot worse when I was on abx. I honestly remember feeling when I started treatment that I was going to die.
I stopped abx treatment last October.
Were your symptoms ever better while on abx? Or you just stopped them and everything improved? -including old ones .Btw which abx were you on?
Posted by Lymetoo (Member # 743) on :
I would go by symptoms more than anything.
It's a miracle that Quest found anything. They usually don't. So that would make me a bit nervous.
Posted by Cadames62008 (Member # 16275) on :
replying to sutherngrl I don't know why he wanted the test done. He did so I did it. It was at quest, lol I was not expecting a postive. Im guessing it showed a active infection or why the px for doxycycline.
I took doxy rifmantin combo before
In reply to coltman my symptoms did get better after treatments and actually alot better about 2 months after I stopped them.
Posted by kitty9309 (Member # 19945) on :
quote:Originally posted by Cadames62008: In reply to coltman my symptoms did get better after treatments and actually alot better about 2 months after I stopped them. [/QB]
This is interesting to hear. I am told that improvement can/does continue after stopping antibiotics.
Something along the theory of inflammation continuing to decrease in the months after abx end.
Good to hear from someone with first hand experience with this!
Posted by sutherngrl (Member # 16270) on :
I would want a look at the labs themselves, to see if you are IGG and or IGM positive.
How ironic that people with a positive test, yet symptom free are given treatment without even asking for it; yet so many of us that are so extremely ill, but don't have a positive test can't get any treatment even if we beg for it. Even though LD is a clinical diagnosis!
Man the system is so screwed up!
Posted by Cadames62008 (Member # 16275) on :
How I see it is what I was told by my old llmd the more antibiotics you take the the more bands come.
When I was first sick I took one at quest and it showed 1 positive band, and two with traces I believe.
I then got a llmd and got tested at ignenex which was cdc + and coinfection for erhlickosis spelling lol..
Did my treatment and a year later after treatment it comes up positive at quest. So I agree with the more treatment you have the more bands come out of hiding if it is there.
Why it still is idk maybe I still need treatment. Guess Ill find out when I get a new llmd here. Ill look at the labs on the 24th but he is not a lyme dr so im not expecting much...
Posted by Cadames62008 (Member # 16275) on :
Well I looked at labs and from quest labs it was showing postive igm not igg....
So Im taking 2 more months 28 days twice of doxy.
So Im guessing even though I felt alot better I ws not yet cured...
Posted by springshowers (Member # 19863) on :
I agree this is an important question. After we start feeling well.... what do we do? Do we keep treating for a certain amount of time. I have read in some places YES we should for a month or two or three or four.... I have read all those..
So i am going to talk to my doctor about this. I find that when you "start" feeling better or reporting improvements sometimes they want to take you off medications that were helping to fast.
After being sick for over a decade.. that scare ms. i have had one full relapse before and I surely do not want that to happen again.
I think it is wise to keep on treating for a good time period after if your doctor will support it.
Posted by Cadames62008 (Member # 16275) on :
hes totally in support of if and a good dr.
He better be lol he feels bad he missed the dx the first time and I went undiagnosed for 2 years .....
Posted by ChuckG (Member # 19093) on :
IGeneX reports both IgG and IgM bands positive from 1 to 13 years after infection. Untreated.
Cadames62008 If you would be so kind as to post all of your results or PM them to me I would be most grateful.
Posted by Cadames62008 (Member # 16275) on :
Chuckg
sure i go back to dr wed and ill get a copy and post them to you. The igenex one last year and this years....
Posted by ChuckG (Member # 19093) on :
Thanks. Appreciated.
Posted by Cadames62008 (Member # 16275) on :
Chuck G
Sorry this took so long but so so busy...
ok on this past western blot igg all bands non reactive.
img 23 reactive 39 reactive 41 reactive ...
I gotta look for my old on for igenex ill look tonight
I believe before it was 5 bands I was positive and my igg negative and was positive for Ehrlichiosis.
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