Dr is now questioning if it is lyme b/c the isotope came back fine.
The was another lab that was also fine, that is usually low with lyme. This plus a neg igg wb, with a positive igm wb made him want to investigate further. Before pumping me with the big guns....
Nurse called and reported, and said maybe we should try a trial off the meds. I said, but I am getting better on the meds!!!!! She did say, then we need to discuss further, b/c that was a good sign. And it still could be lyme. That sometimes you need to treat empiricly (which I believe) But the mention of stopping and that maybe its something else scares me.
I am so scared that they will stop and start treating me like all those other drs. I was slowly starting to get better. In jan, on a scale of 1-10, I was a -2 and getting worse. Now I can say I'm a 2.5. THis is huge.
I have so many symptoms at least 52 plus that can be explained by lyme...If not lyme then what???
He did say that the other possible viruses I tested neg for. And I believe that if it was a virus I would not get better on antibiotics.
I am so traumatized by my past experiences with dr.s. I can't lump him into that bunch yet, b/c he is the first one to treat me, and I am getting better instead of worse.
Posted by GretaM (Member # 40917) on :
What?! A positive western blot isn't enough?
A truely lyme lterate doc will treat REGARDLESS of sero status.
The fact you had a potitive western blot should be MORE than enough for continued treatment.
Coupled with the fact YOU ARE IMPROVING is like a home run!
Is your doc treating you for coinfections also?
Treating coinnfections are a necessary evil.
Is the doctor you are seeing onme that was recommended to you off lymenet, or a local support group recommendation?
Posted by lpkayak (Member # 5230) on :
If he wont treat you need another doc Are you in plymouth mass? If so good docs are not far away
Posted by jennyfromtheblock (Member # 43805) on :
I am going to know more on weds. I see the PA then.
I had coinfections tests I believe from igenex and they were neg.
As far as wb goes, I have cvid and my igg subclasses are low, so...no igg antibodies, no positive igg wb. They tested the isotope to see if it was specific to the igm...
I think that the discussion on weds will be about treating empiricly. I am hoping. Otherwise I'm out.
I couldn't imagine it being anything else, when I have symptoms that are SOOOOO specific to lyme.
I am at the point where I want them to ramp up the meds bc I am starting to see improvements finally. Not pull back.
I have my files ready to ship off to the cape. But we will see what happens.
I like my drs aggressive plan, but if he holds back b/c of the labs....I have to move on.
For years I have had drs make me second guess myself. I hate that I am doing that again.
The dr. I am seeing I found on my own through searching for a dr who deals with ME/CFS patients. That was the diagnosis they gave me in boston. This dr. said, you don't have CFS. He started treatment for probably lyme.
Yes I am in MA
Posted by Judie (Member # 38323) on :
Here's a thread with a list of coinfections to test for.
One of the links it to Stanford's CFS department. I took the form to my doc and had him check everything on it.
By the way, if the doc is a Lyme specialist, positive IgM would not require further investigation. IgG and IgM work differently than other infections. IgM can mean old infection.
You don't need both IgM and IgG to be positive. One or the other means Lyme.
My friend got into a mess when a doc thought they both had to be positive. She didn't treat her Lyme for 4 years.
You sound like you've done great research. Keep pursuing Lyme. A lot of Lyme docs treat with antibiotics until you are feeling well and a few month beyond. They don't back off.
Posted by Lymetoo (Member # 743) on :
If the Dr does not believe a positive IgM then you need a real LLMD.
-
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." --- Dr C of MO
Jenny - what were the results of your Igenex WB IGM test? Which bands? How many?
Regardless, if the IGM test was positive that most likely means Lyme.
I also have CVID - low IGG/IGA total and subclasses..
FWIW I tested with Igenex four times. Results are in my sig. line. Individually - each test was negative. Cumulatively - I had the bands for a positive result.
I also was negative on the isotopes for bands 30 and 31.
I ultimately tested positive on the Advanced Lab culture test. I hope the results of that test are accurate - the CDC has doubts.
My total IGG is in the 500's when not on IVIG/SCIG. Somehow I managed to show a few IGG bands anyway with Igenex.
Curious - are you on IVIG? Were you on IVIG when you tested?
As an aside: I started IVIG a few years ago. One doctor I see still sends my blood to Labcorp for WB testing.
I know that IVIG has Borrelia Burg. IGG antibodies in it - yet the LC test is apparently so bad it does not even pick up on the Bb antibodies that I know are in my blood from infusions.
Posted by jennyfromtheblock (Member # 43805) on :
Susank,
I was tested twice for CVID. Once they told me (diff place) that I was fine. But they messed up the vaccination testing. The lab never recorded the initial results. So nothing to base it off of. She ignored that my sublasses were low.
New doc said off the bat...these are low. Retested, still low. Plus I have a history of bacterial infections of the skin(had MRSA twice in 6mos)
Dr wants me on subq injections 1 hr long once a week. So, not IVIG, but SubQIG. Insurance said no way...she's fine. We appealed. They upheld the decision.
Now I get gamma shots once a week..better than nothing I guess.
IGENEX tests
IFA burgdorferi G/M/A 40(equivocal)
WB IGM positive for igenex and cdc 23-25 IND 31 (just a line) 34 Ind 39 + 41 + 58 +
WB IGG Negative 41 +
duncani,microti, babesia fish, erlichia, phagocytophilium, henselae, bartonella all negative
Posted by lpkayak (Member # 5230) on :
Oh for crying out loud you have lyme and need a real llmd
Your best chance of having a normal life is to hit it hard now
If your ref was to dr d there are issues therr too
You really should get to ny-its not that far when you think about your life
**edited name of LLMD's city**
[ 06-09-2014, 05:53 PM: Message edited by: Lymetoo ]
Posted by jennyfromtheblock (Member # 43805) on :
thank you for that reality slap lpkayak...I needed that.
Yes, I have been learning about the issues with Dr.D....I have heard glowing testimonies as well.
I did say last week I would go to NY..someone had advised on pm a few weeks ago. This would be Dr.H?
I already traveled to NY to see a Dr. for CFS. I waited almost 6 hrs in the waiting rm.
Posted by susank (Member # 22150) on :
Jenny - do you know your total IGG levels?
FWIW I had a recent change in insurance.
We are in the process of trying to get Gamma approval for me with the new insurance company. IVIG and/or SCIG.
When I was first Dx'd a few years ago we did a Pneumo titer test. My levels low and non-protective. But we did not do the vaccine challenge. My insurance company at the time did not require it.
Now I fear the new company will require it - which means being off Gamma replacement - for - I think three months. Then test when all donated antibodies out of my system.
When did you start the Gamma injections? How many cc's do you get? Do you notice any improvement on them? I assume you get Gamastan?
I hope you can get in to see a good LLD soon.
Posted by jennyfromtheblock (Member # 43805) on :
susan
I don't recall what the total igg was. I think the issue was in the subclasses.
My insurance is great if you are healthy. They keep sending my husband money for being healthy. I told him, don't tell them youre married to me!
I am not sure how much gamma I get. I know that the rate I pay is $80 a shot, once a week. I started a few weeks ago. This will be my fourth I think. I don't know if I notice a difference, people keep asking me.
I started flagyl a few weeks before and I have been doing well since then, so idk. Not sure what I'm supposed to feel with it.
Posted by Eight Legs Bad (Member # 13680) on :
SusanK wrote:
"I ultimately tested positive on the Advanced Lab culture test. I hope the results of that test are accurate - the CDC has doubts. "
You can rest assured that that test, developed by Drs Alan MacDonald and Eva Sapi, is accurate. I wouldn't worry about the CDC's "doubts". The CDC will tell you that chronic Lyme does not exist, that their existing two-tier protocol is accurate, and that Lyme is easily cured in a simple short course of antibiotics. And that Father Christmas comes down the chimney each year.
Elena
Posted by jennyfromtheblock (Member # 43805) on :
I'm hoping Father Christmas brings me a hickman catheter this year and fills my stocking with rocephin.
Waiting on insurance who just denied someone b/c they didnt have a possitive Elisa
Posted by seibertneurolyme (Member # 6416) on :
Jenny,
My suggestion would be get a brain SPECT scan - if that is abnormal then it will help you get IV antibiotics. It may still take an appeal to the insurance company, but it can be done even with a negative Western Blot.
Note - I would get the brain SPECT scan done at Columbia Presbyterian in New York City - don't really trust most other places to know how to read it. Bea Seibert
Posted by Razzle (Member # 30398) on :
I don't know how they expect you to have a positive IgG if your IgG is low/you have CVID...
Sorry, just stating the obvious...
Agree w/ others above - sounds like you need a real LLMD...