posted
So my MD tested me one band positive in May of this year. Band #41. So they treated me 30 days of Doxy.
I went to a ID Dr yesterday and he said I don't have lyme and tried to explain the whole 3 out of 5 must be positive for Lyme.
Well I asked why would 1 be positive and he said I must have had something going on. What could that something be?
He didn't answer that. I am really nervous. Isn't the Western Blot another test they do for HIV?
My symptoms are all in my left side and are there everyday. Best described if you were pregnant and the baby is kicking you. I have a few other symptoms.
I go to an LLMD on Aug 27th, but in the meantime am so confused and am not taking anything.
Has anyone ever demanded there MD to do a CT/MRI of any particular part of there body that they were experiencing pain in?
Posts: 35 | From MN | Registered: Jun 2008
| IP: Logged |
posted
3 out of 5 to be CDC positive. Which doesn't mean anything because even the CDC instructs physician not to use the Western Blot as a diagnostic. Diagnosis has to be made based on symptoms and patient history.
I have no respect for a doctor who ignores those instructions because of cowardice or ignorance.
Your LLMD will explain or you can look at Dr. C's explanation on this board. You can have Lyme and not have any positive bands.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
| IP: Logged |
adamm
Unregistered
posted
Very few Lyme patients will get CDC positives--hence,
as can be found stated in a paper from Johns Hopkins (obtainable
with a Lymenet search), it's
a clinical diagnosis. Please get to a doctor who knows this and
will give you the treatment you need (the dose you're on-I'm
assuming 200mg/day is only
half of that which kills the Lyme bug.)
IP: Logged |
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.
(written by Aligondo Bruce)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
unfortunately band 41 alone has little meaning. It is a band that can cross-react with many things, even non-infectious. Healthy individuals can be positive for band 41.
HOWEVER, a negative test results doesn't always necessarily mean you don't have lyme. Don't waste anytime trying to decipher band 41 because alone, I don't believe it will point you in any direction.
Igenex is always a good lab to run a lyme test at because they look for more bands, hence, increasing the likelihood for seeing something else turn up....another band PLUS band 41 can be meaningful.
I'm glad you will be going to a LLMD to help you sort through all of this. In the interim, be sure you exhaust all other avenues and I certainly think you should see a neurologist.
Better days ahead....
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
My first WB was positive for band 41, same as you. My doctor gave me doxy for a month, I demanded to get retested and band 23 popped up on the IgM side.
Now they say I have Lyme. I'm seeing an LLMD and I start IV treatment this week.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Do a search on here with 41 as the topic. You will find many, many, many posts about it. Some people say it cross reacts with everything (which I don't agree with whatsoever), some say it doesn't, etc., etc.
41++ is the only positive band that I got on the IgeneX. I think band 41 is more specific for lyme disease than most people give it credit for. Plus, many times the sickest people only come up with one or two bands... which is terrible because then they are left even more confused than before.
It was first found that someone could only be positive for band 41 if they either had lyme disease, gingivitis OR syphilis. Now, people are coming up with it meaning all sorts of crazy things... I don't agree.
Band 41 (only) plus many symptoms of lyme most likely means lyme, plain and simple.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
I understand most of that, but strictly based on symptoms you could have Lupus or Fibromyalgia. Do most people get those checked before treating Lyme.
I'd hate to treat for Lyme if I really don't have, nor do I want to talk myself into having it.
Posts: 35 | From MN | Registered: Jun 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Stefanie: I understand most of that, but strictly based on symptoms you could have Lupus or Fibromyalgia. Do most people get those checked before treating Lyme.
Fibro usually is lyme disease. Fibro really isn't a disease, it just happens to be lots of symptoms (most of which are lyme symptoms) put into a name. And many people are misdiagnosed with lupus when they really have lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
I'd hate to treat for Lyme if I really don't have, nor do I want to talk myself into having it. [/QB][/QUOTE]
Most good MD's will either test you themselves for serious diseases, or refer you to Infections Disease Dr. who will give you the gammit of testing for all types of diseases and viruses.
MD's and ID doctors are usually not good at treating lyme. If you get all the other tests done to be sure it isnt something else, you could see a LLMD who would pursue Igenex testing.
Or you may want to skip the first step and go directly to LLMD who will specialize in the diagnosis and treatment of lyme. They usually do not accept insurance tho.
Hope this helps a little. Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
I had to chuckle when I saw you describe it as a baby kicking you. That's exactly how I described my lyme/coninfections to my primary three years ago.
She looked at me like I was nuts and said, there is no baby in there kicking you. Of course I knew that but I have a jerking in my upper back and it was my way of describing it to her.
I'm two years into treatment and still have the jerking.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
| IP: Logged |
adamm
Unregistered
posted
Wait, Lymetoo--
So our BLO is a bio-weapon as well?
Also, re it being a "permanent relapsing brain infection"--
does anyone with encephalopathy truly get his/her mind back in
full and keep it for life? None of the recovered patients I know
personally had chronic neuro involvement (one had acute), so I can't really infer
quote:Originally posted by adamm: [QB] Wait, Lymetoo--
So our BLO is a bio-weapon as well?
Could be. I didn't write the above post. It was written by Aligondo Bruce, a sometimes poster here.
Stefanie, as someone said, fibro is not really a disease. It's symptoms are real... the pain is real... but what CAUSES it??
I was misdiagnosed with it for 20 yrs before finding out I had Lyme all these past 50 yrs.
Lupus?? Usually Lyme if you ask me.
Do not stop until you get a test thru Igenex lab.
What can you do until your appointment?? Start on the anti-yeast diet to make sure your body is in good shape there.
Taking abx will create yeast bigtime, and by following a good diet now and maybe getting some natural anti-yeast meds you can get ahead of the game.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
tickbattler
Unregistered
posted
My 4 year old son had band 41 show up a year ago before I really knew much about lyme. When I started getting more concerned about his vague symptoms (insomnia, diffucult behavior, repeated throat, ear and sinus infections), I tested him again this year and several more bands showed up. He is now being treated.
Now that I know better, I tested my 23 month old and she had band 41 show as well. She has been cranky and had strange rashes and has had an itchy scalp. I am currently treating her for a month and she seems much happier. After this month of treatment, I plan to retest to see if more bands show. Sometimes when you give abx, this somehow brings more bands out.
You might try a month of abx if you can get them and then retest.
How does one whole family get Lyme? I did take and abx for 45 days and did have herx reactions, now I am currently taking a homeopath remedy til my LLMD appt.
Posts: 12 | From Farmington, MN | Registered: Jul 2008
| IP: Logged |
tickbattler
Unregistered
posted
Hi Stephanie -
Yes, it's hard to believe. When I first started researching lyme for my husband, I remember reading about other entire families getting infected and being thankful that wasn't us, since only my husband was infected at the time.
We live on a wooded lot in PA and the tick problem is horrible. My twin boys have each had about 8 tick bites and they are only 4 years old. Both have tested positive and have shown symptoms. Never did they have a bulls eye rash. Both are being treated.
My 23 month old daughter probably got it from me in vitro or through breastfeeding, since I just tested positive even though I have very few symptoms.
So, yes, all 5 of us have it. Now we spray the yard with permetrhin and are putting in an 8 foot deer fence next week to keep them out.
It is a complete nightmare but we are seeing very slow progress with treatment.
posted
As noted above band 41 is specific to Lyme. You would not have this band unless you were exposed to Lyme.
Also Fiber/Lupus are most often mis-diagnoised Lyme disease, not the other way.
My wife only had Band 41, now after treatemnet she tests positive for several bands.
Also you should get tested for common tick borne co-infections- Babesia, Bartonolla, ect.
If you felt better on Doxy- I would try to get some more-- If not dont worry, taking a break for a couple of weeks is not going to matter that much. This however is a good sign of Lyme.
Many people take breaks from abx and then start again. Since Lyme does not go away quickly, your delay will not make much difference.
Also after your 30 days of abx, you may pull more bands on the Lyme Western Blot now. Ask your LLMD and maybe get another from Igenex if you can.
What else makes you think you have lyme- other symptoms, tick bite etc.
Take Care
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
Actually, it is my understanding that band 41 is NOT specific to lyme. The famous Dr. J in CT told me that it could mean lyme or 500 other things.
I do think, however, that it does mean Lyme more often than is recognized. Just by reading these posts, you can see that many people started with band 41 and later tested positive with more bands.
posted
Band 41 with a host of symptoms?...Id think lyme. Id also ask for more doxy or whatever they would give you till you see a LLMD. Get tested by igenex, and odds are other bands will show up. Remember that typical hmo/cdc testing doesnt even look for a lot of the other bands which are Bb specific. The main question is...how did you feel when on doxy? Did you feel better, or worse, or up, down, or no difference at all? You're in the same battle most of the people have been through. Unfortunately, you probably know more about lyme then your IM dr.
Posts: 514 | From . | Registered: Apr 2008
| IP: Logged |
Peacesoul
Unregistered
posted
I had +++41 on IGM and IGG along with a few other + bands. But I was CDC neg. My LLMd told me +41 could appear if one has a cold, their period or it could be a false +. I was also dx with Lupus a yr before I looked into lyme.
I've had a + ANA (highest tilter) for over 14 yrs. I also showed a lot of Lupus markers in my blood tests. I was told I had CFS as well.
My LLMD is SURE I have lyme. My RHEUM is not convinced and believes I have Lupus. I took months of abx and never got well. In fact, they made me more sick.
So here's the truth and the cold hard reality. NO ONE knows what any of these diseases really are or how to treat them. That includes Fibro, Lupus, Lyme, MS etc
Testing is faulty, treatment is faulty and most dr's and sufferers have no idea what they are facing.
Until they have proper testing for any of these illnessses, I'm not going to say what I suffer from cause I just don't know
IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Peacesoul: I had +++41 on IGM and IGG along with a few other + bands. But I was CDC neg. My LLMd told me +41 could appear if one has a cold, their period or it could be a false +.
See, it's remarks like these that make band 41 as terrible as it is and as confusing as it is. And what makes the people who only get band 41 to show up feel more confused and lost as ever. I'm not saying your LLMD is wrong, but seriously.... having your period could make band 41 show up?! I am tired of all these speculations of what band 41 could be (because it's basically become everything)... and I don't agree whatsoever.
The entire point now is this: Band 41 needs more research. Plain and simple. Because now I've heard that just about everything can cause band 41 to show up, a period, a cold, Bartonella, EBV, etc. And of course the period comment is the most unbelievable to me.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
It's Stefanie under another name-mamam! Confusing!
I know the LLMD I am going to does all his tests through Igenex. But cant they still come up false or is Igenex very accurate?
I do have more doxy, probably only 1-2 wks worth, but maybe its best not to take it since you should be free of abx before testing.
Posts: 12 | From Farmington, MN | Registered: Jul 2008
| 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!
![[shake]](graemlins/shake.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic