overall both the IGG and IGM tests were negative, but the 41dKa band was positive on both... which i guess means i do have bacteria in my body, but not neccessarily from lyme.
i feel like i've been given a death sentence. i wanted it to be lyme because it would explain ALL the problems i've been complaining about for years! i do not want to feel this way forever, and without a diagnosis i have no hope in getting better... i'm not sure where i should go from here and what other illnesses i should look into.
how accurate is the ignex western blot? should i do it again?
the doctors office did not return my call today, and they are closed until monday.
ALL advice greatly appreciated!
Posted by sutherngrl (Member # 16270) on :
Sorry you are ill!
Lyme Disease is a "clinical" diagnosis. This diagnosis can only be made by a LLMD(Lyme Literate Medical Doctor).
The test are used to back up that diagnosis. They are not very acurrate though and sometimes it can take months or longer of treatment to get a positive test result.
Suggest that you go to "seeking a doctor" section and find a LLMD.
Posted by kellephant (Member # 24885) on :
i have already seen an LLMD... and the paper he sent basically just said what i just said... that i have bacteria in my body but not neccessarily lyme. he didn't give me a clinical diagnosis or tell me what i should do now. i have SO many symptoms though. i don't know what to do now Posted by kellephant (Member # 24885) on :
do you reccommend i just continue to take the anti-biotics he prescribed in advance and keep testing?
Posted by sutherngrl (Member # 16270) on :
What antibiotics did he prescribe? Maybe he is waiting to see what your reaction to antibiotics is; or he is going to give them to you for a few months and then re-test.
Not sure about a LLMD that doesn't give a clinical diagnosis. Mine did. My first band to show up was band 41, but a year into treatment, I got an IGM CDC positive. That then backed up the clinical diagnosis.
Posted by kellephant (Member # 24885) on :
he started me on doxycycline before i got the test results.
and he does gives clinical diagnosis, he just didn't give me one. it is really surprising, because EVERYONE i have talked to about my symptoms seems sure that i have lyme, so i assumed he would think so too.
i'm not sure what his plan is since he didn't return my call and his office is closed until monday. i'm a little upset about it having to wait that long now to know anything.
did you ONLY have the 41 band show up your first time?
Posted by kellephant (Member # 24885) on :
also, i read in another post that the 41dKa band is also linked to syphillis, hiv, and peridontal disease. i DEFINITELY don't have any of those diseases and i NEVER have had them. are there any other diseases the 41dKa band is linked to?
Posted by kellephant (Member # 24885) on :
thank you for taking the time to reply by the way... i REALLY appreciate it!
Posted by sutherngrl (Member # 16270) on :
My very first WB before ever starting treatment was completely negative. My second WB, 2 months after starting treatment I had IGM band 41 show up. Then a few months later I had the IGM CDC positive test result.
I got a clinical diagnosis with no bands positive. I had excluded every other illnes it could possibly be and had many symptoms of LD.
I wouldn't jump to any conclusions as to what your LLMD has in mind. He gave you Doxy which is a good sign.
Do you have a follow up appt? And how long did he presribe the Doxy?
It may be that he plans to discuss it all with you at follow up.
Posted by kellephant (Member # 24885) on :
okay, your test results give me some hope again... it is so good to hear that your test showed up completely negative at first! and i have excluded every other illness as well... most doctors just eventually decide that i am crazy because everything the test me for comes back normal.
i don't have a follow up until august 10th that's why i'm so confused!
there was a place on the paperwork where the LLMD could circle if he thought that i did have lyme despite my test results but he didn't. i am hoping to have a herx reaction so i can get a diagnosis that way!
Posted by sutherngrl (Member # 16270) on :
Go back to where you click on this thread. Look just above it where it says....Quick links to popular topics. Click there and then look for.... explanation of western blot. click there and scroll down. It explains what each band means.
Posted by sutherngrl (Member # 16270) on :
Did your doctor give you enough Doxy to last until your follow up?
Posted by sutherngrl (Member # 16270) on :
Glad to help. I totally know what you are experiencing because I have been there. Most everyone here has.
Gotta get some sleep, but you will surely get more responses from others by tomorrow.
Just hang in there! You will get it all figured out! Take it one day at a time!
Posted by kellephant (Member # 24885) on :
yes, he gave me enough to last until my appointment in august.
i've read all that... i just can't find anything that verifies that 41dKa is ONLY associated with lyme, syphillis, and peridontal disease. the website [and all the others i've checked out] just say they can be caused by several disease... they don't list what the diseases are though. i wish they did, because it would be really helpful!
Posted by littlebit27 (Member # 24477) on :
I had only band 41 show up. I was tested for other stuff through blood test through my primary care doc...even HIV without my knowledge HA!
I only have a clinical diagnosis right now. I've been on doxy for a month, ran out yesterday because my other doctor was not great.
I see a new doc on Tuesday, I'm going to treat a bit longer and then pay the money for Igenex. I just don't have a 1000 bucks right now and I don't want to waste the money. The longer I wait the more likely it is to show up positive. Though I need to test for co-infections too.
I would keep taking the doxy, are you experiencing changes from the doxy yet? That was a good sign for me. Both times I took it symptoms immediately flared up.
Posted by kellephant (Member # 24885) on :
i had a doctor give me a pregnancy test in high school behind my back before i was even se.xually active! imagine my surprise when i got a letter in the mail saying i wasn't in my 1st, 2nd, or 3rd tri-mester! haha! oh doctors, you gotta love em'
i feel you... being sick is expensive! goodluck with your next test... i hope it comes back positive!
i just started taking doxy on tuesday night... i woke up on wednesday with a KILLER headache and my neck was REALLY sore. aside from that i feel the same. my bones hurt so badly i could almost die right now, but it is a regular thing for me. i am hoping to herx really bad soon so i can feel more confident that i do have lyme.
Posted by kellephant (Member # 24885) on :
oh, and i've developed this really weird rash on my arms since starting doxycycline on tuesday night...
it's so weird... you can see it better in person. it looks like i have scratches all over me.
Posted by IckyTicky (Member # 21466) on :
Your rash looks like a Bartonella rash. My youngest daughter was tested through IgeneX and came up with only 41 as well. But she was clinically dx with neuro Lyme. We know she has it because the rest of us tested CDC or IgeneX positive in the family. Don't base your results on weather you do or don't have Lyme. PLEASE see an LLMD. You definitely have co-infections.
Posted by timaca (Member # 6911) on :
Other chronic infections can give the same symptoms as lyme. Have you been tested for HHV-6, EBV, HSV1, Cpn and enterovirus? If you do a search using my member number you will come up with some info on viral testing.
If you have a rash from the doxy, I'd stop the medication and call the doctor immediately so he can advise you.
Best, Timaca
Posted by Lymetoo (Member # 743) on :
Yes, I would call the dr about the rash. Also describe to him the streaks ... he may be thinking bartonella too. But first you have to make sure you don't have an allergic reaction to the doxy itself.
I would DEFINITELY take abx for one month, go off for 2 wks as the dr said and then retest. You will likely have more bands show up... and even if you don't, you could still have Lyme.
Treat long enough to see if you have a herx!
Posted by Lymetoo (Member # 743) on :
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster: (not me)
The number of people exposed is in the millions. The reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what Steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
This statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. It allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Why? It's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. North American disease is different from European disease...lack of CSF antibodies, for instance.
A much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. The CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
Lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. If late disease was rare, we'd be able to get treatment. Unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
Think about this...Allen Steere wouldn't listen to Polly Murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call Fallon. Now, Fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated.
Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. It's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
Posted by Lymetoo (Member # 743) on :
ickyticky... i am seeing an LLMD, but i have not been able to reach him to talk to him about my test results. i called on thursday and didn't get a call back, and the office is closed friday, saturday, and sunday. more waiting for me
timica... not to my knowledge i have not. i will look into it! i will add that i've had at least 10 tick bites though. my rash is almost gone today
lymetoo... the plan you suggested is the one i intend to follow! thank you for posting all that info. i checked out the link, and the description of the sunrash does not sound like the one i had. i didn't get much sun yesterday, but i was outside in the shade for about 45 minutes. could that cause it? if it was from the sun wouldn't my neck and face have the rash as well? anyway, it's a possibility. i will continue to monitor it.
Posted by Lymetoo (Member # 743) on :
Yes, just being outside could do it!! For sure!! (same for just driving in the car)
and yes, you would THINK it would be on your face .. but..
Posted by kellephant (Member # 24885) on :
gotchya... i went out today in the sun more than yesterday today and did not get the rash. i'm going to keep a log of my daily routine so i can keep track of my symptoms and when they occur!
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