I am now the fourth member of my family to have positive results on an IGM, indicating lyme. None of us have had a rash (and I know this is common), yet none of us remember getting bitten either. (My wife's cd57 was initially 13 and after 3 months of intravenous the cd57 went to a whopping 15! She is, bar far, the sickest of the four of us)
I just find it hard to believe that everyone in the house has been bitten by a tick such that we are all experiencing symptoms at the same time. In my mind, this is either lyme being transmitted in a manner other than tic bites, or this is some infectious disease other than lyme.
Your thoughts are very much appreciated!
Posted by lymednva (Member # 9098) on :
First of all, contrary to popular belief, not all people who have Lyme Disease experience the rash. Mine didn't appear for over ten years, and was dx'd as ringworm when a doctor saw it.
Next, it is not uncommon to miss the tick bite and for multiple family members to be infected.
I'm sorry to hear this has happened to your family, but you have come to a good place to learn more.
I'm sure Bettyg will be along soon to send you her Newbie Links. Until then, read all you can, to learn all you can!
Welcome to Lymenet! Posted by duke77 (Member # 5051) on :
quote: this is either lyme being transmitted in a manner other than tic bites,
Absolutely correct I believe. There is much controversy over this, but my LLMD and I believe that Lyme is sexual transmitted. There is also a lot of documention over other vector borne agents such as mosquitos carrying Lyme. Lyme has been cultured from mosquitos, fleas, black biting flies, mites, etc. No one can give any scientific proof as to why a mosquitos could not transmit Lyme. Think about this, the CDC says 24000 new cases of Lyme a year but then says it may be off by ten fold. Over 200,000 cases a year all from tick bites I think not.
Posted by heiwalove (Member # 6467) on :
unfortunately, it is very common for an entire family to be sick with lyme. sexual transmission is a possibility, as is congenital lyme, and transmission by other insects. also, only about 50 percent of lyme patients recall a tick bite; as far as i know i've never been bitten by a tick in my life (and i definitely have lyme disease), but really, who knows - ticks can be as small as the period at the end of this sentence.
Posted by Jill E. (Member # 9121) on :
Do you have a family pet, an indoors/outdoors one that might be bringing ticks into the house? This is one way entire families contract Lyme.
I agree with the other insects being a possibility. When I was bitten, it was a tick. But my dad was bitten four years later, we don't know by what, but he has a history of getting mosquito bites.
I've met many families at my Lyme doc's office where the kids did contract it congenitally.
I'm sorry your whole family is suffering.
Jill
Posted by danielb (Member # 8522) on :
I was IgM positive. CDC and Igenex. IgG and PCR were wholly negative.
I strongly I believe I have had this all of this my entire life and my mother (epileptic, untreated psychological problems, repeated physical ailments, now dead) and other family members.
my problems are mostly neuro and deadening fatigue, physically, mentally, creatively, intellectually and emotionally.
31 band may be key. may cause autoimmune problems with nervous system, and became the antibody that the lyme vaccine was based on. the lyme vaccine caused problems in many people and was pulled off the market.
Posted by am36 (Member # 9409) on :
same here. I am IGM positive, both lab and CDC.
Recently tested 3 of our 5 children, all positive. I 'm with you on that I think it's unlikely that we were all bitten by our own individual tick, none of us got the rash, yet we are all positive.
I think I've had it for 16 years, and gave it to the kids in utero.
Posted by Melanie2008 (Member # 10650) on :
The PCR is only like 5% sensitive if I remember correctly. That means it only detects BB in 5% of those who have it, but if you do detect it (are positive), then you have lyme for sure (100% specificity for lyme).
So if you are PCR negative, it doesn't mean anything because it is very insensitive. However, if it is positive, you have lyme because it is 100% specific for lyme.
Posted by Lymetoo (Member # 743) on :
"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."
Posted by Aligondo Bruce (Member # 6219) on :
positivity on IgM according to CDC guidelines is probably indicative of lyme...what was your IgG?
The CDC tests are total garbage, don't exclude or include based on these tests. however I would say that if you are ELISA - AND have no bands on IgG or IgM, you probably don't have lyme.
41kDa band is key, it indicates constitutive expression of flagellin {along with 39 kDa} and the presence of these bands reflects spirochetal exposure. exclude syphilis using VDRL and personal history and a few very rare diseases such as relapsing fever and leptospirosis, also 'fort bragg fever' lmao...and you can safely assume an exposure to lyme.{unless you have raging gingovitis accompanied by pus-filled lesions}
most of the other bands are representative of the immune response to variably expressed proteins.
VlsE, for instance, is variably expressed according to stage of infection and tissue-type.
and the CDC testing protocol, due to its failure to include temperature shifted borrelia lysate automatically excludes identification of several proteins which are important in mammalian infection.
there is no test for active versus inactive infection, especially as regards infection in nervous tissue and more specifically the CNS.
this is why brain metabolic scanning such as SPECT or PET which can identify the presence of a subacute encephalopathy are important.
also, please keep in mind that chronic lyme borreliosis tends to be a deep tissue/intracellular infection as opposed to a hematologic {blood} based infection. this strategy evades the adaptive immune system and can cause low or absent antibody titres.
Posted by lymesucks (Member # 10575) on :
what is a vdrl? Can Syph show up as a significant band associated with lyme? Even if you were treated for it and then retested negative?
Posted by jmill2977 (Member # 10513) on :
My particular results were from Igenex and I was positive in IGM bands 23-25, 39 and 41.
My wife and daughters' diagnoses were also based on Igenex testing (as well as a cd-57 for my wife).
Posted by jmill2977 (Member # 10513) on :
Also, I am not puzzled by the fact that everyone in a family can have Lyme. There are a number of factors that could contribute to this. However, what I am questioning is the likelihood of 4 people having symptoms for the first time all within about a six month time period. There is something here I just do not get!
Posted by grace1 (Member # 10347) on :
Hi jmill,
My family is wondering similar things. I got the tick bite and rash, and quickly progressing serious symptoms. Soon after, my mom started showing symptoms and complaining about them, even before we had a thought about Lyme (as I had thought nothing about the rash until later). My sister also felt some minor strange symptoms, even though she as an MD didn't believe it was transmissible from person to person, and was doubting my mom at first.
My mom and I both have indeterminate Western blots. But I got antibiotics and steroids early for something else, and then started treatment for Lyme a month later. My mom started taking doxycycline soon after her symptoms appeared too. So that could be affecting seroconversion. My sister has not tested herself yet.
*** I am quite sure that I did not transmit this either sexually or congenitally to my mother and sister.
Like you say, is it possible that it transmits through some other route, or that it is another infectious disease? We on this side of the Lyme debate, should be the ones to be open-minded, as we know how it is to hear people insist that the earth is flat.
Other types of bacteria can be transmitted through other fluids like saliva and respiratory pathways, why not Lyme, even if rarely?
Or perhaps there is a coinfection of unknown identity. A virus could be likely, more transmissible via respiratory routes or saliva, I'm guessing.
Posted by lymie tony z (Member # 5130) on :
OK folks,
Here's the thing. Barring any thoughts of this disease having been genetically engineered to be both airborne and more virulent....
and we can't prove that until we find the receipts for our sale or russias sale to Saddam Hussein...
it is a vector borne disease...however other methods of transmission are greatly suspected...as in sexual or in utero.
Ticks transmit the disease onto their offspring as do humans and or other mamals.
Have you ever seen a momma tick on an animal who has given birth to her kiddees while attached to that animal....
They have a whole lotta babies...all getting their first meal on the host mom latched onto!
Now say you and your family happen to own a dog or cat or something who just happens to live with you...
OR you had a picnic in the area of where some of those ticks dropped off from feeding and were just sitting waiting for the next meal...and here comes your family...yum yum....
proximity is PROBABLY the most logical reason for a whole family getting ill at the same time.
but you can't rule out the fact that women do transfer it thru to their kids....if they have it while pregnant...
given that Bb has a definite wax and wane symptom cycle due to regeneration...say every 28 days or so....it may seem that everyone got sick at the same time... and it also could very well be they are...or likely to have the same strain or strains or coinfections....
because they ran accross the same "family"of vectors.... does this help at all????
zman
Posted by grace1 (Member # 10347) on :
that is one possibility, that the whole family sat in a tick infested pool at the same time... but extremely unlikely in this case. but that's only one possibility of many.
what if... a person has blood in their saliva (from a cut, flossing, a popped canker sore, bitten tongue, etc.) and you share food or drink, and the other person also has an open cut or something in the mouth. what if... a person cut his or her finger... etc. etc. sure, chances may be small, but not impossible.
the thing is, patients' histories are revealing. although no matter how much we tell lyme-illiterate doctors, they won't believe or listen or open their minds. they say chronic lyme is post-lyme syndrome, or that people (just happened) to get some other diseases (how statistically possible is that?), because they can't believe otherwise.
person-to-person transmission of some infection related to lyme even has chronic lyme patients in disbelief. now that's going to be a tough one.
i can say, there's no way my mom, my sister, and i contracted it from ticks at the same time (0.00000000001 % chance). we all live in different houses (until i got so sick i had to move back to my parents'), and we don't do any outdoor things together, my sister is a city-slicker, and none of us hung around together until i got sick and moved back home, which happens to be when they started showing symptoms. and there aren't an extremely high number of ticks around here, and infection rate is not that high.
there are lots of possibilities, but using reason, the most likely is some sort of person-to-person transmission of something.
of course, if it were that easy to transmit, everybody on earth would have the disease. so who knows, maybe there's a window of transmissibility through saliva or respiratory routes, or maybe it's another bug.
Posted by Boomerang (Member # 7979) on :
Research Chlamydia pneumoniae.......a very good possibility for your family.
(and no, it is not sexually transmitted, so don't panic!)
Could it be CP? I don't know, but you might want to research it.
Take care.
[ 04. December 2006, 12:14 AM: Message edited by: Boomerang ]
Posted by tailz (Member # 10014) on :
Lyme is not only transmitted by ticks. If I did get this sometime after I was born, I will go to my grave swearing on the Bible that I got this from either a flea or a mosquito - both of which I caught feeding off of me, but never a tick.
I believe this is why we are seeing an increase in Lyme and why so many people never remember finding a tick. How many of us have not been bitten by a mosquito?
THIS is why Lyme is becoming epidemic - 'science' is still stuck on the most obvious vector - the tick.
Posted by trueblue (Member # 7348) on :
Today I was reading an old LymeNet newsletter and there was something about Lyme being a possible food borne thing.
I never saw that before but thought it was interesting and scary. Cows can have it and obviously deer. We go and eat them. Dunno, just kind of freaked about it.
I also don't know if it's true.
All that said... I know my last exposure was from fleas from white footed mice, from an infested house I was staying in briefly.
I think if you all live in the same area you are exposed to the same things. whether ticks, mosquitos, flies, fleas, the list goes on and on.
I hope you all are able to get better soon.
Posted by jmill2977 (Member # 10513) on :
Boomerang,
Thanks for the suggestion - I researched Chlamydia pneumoniae and we don't seem to have the symptoms. however, I think that the fact that CP, which is bacterial in nature, can be transmitted thriugh "respiratory droplets" is very interesting!!!
Posted by quic (Member # 5262) on :
jmill,
You sound EXACTLY like I did almost 3 years ago. Wife got sick in January, Daughter and I got sick in February and son in March.
Wife was by far the sickest. Paralysis, one week in ICU, month in rehab. Drs couldn't give any explanation. Had lyme tests. Negative. When the rest of us started getting sick drs were saying it was a coincidence. I had this weird rash on my arm, but not a bullseye. Almost like a black and blue. It was all very suspicious. I just couldn't believe the doctors and had to find the source. Had the water tested. Checked for carbon monoxide in the house. Even tossed a new leather couch - thought it might be formaldehyde poisoning. We were just getting sicker and sicker.
Then one morning, my son screams coming out of the shower. After months of being sick - smack dab right in the middle of his abdomen was a picutre perfect bullseye rash the size of a dinner plate - clear as day.
Finally, found LLMDs, did Igenex testing, all IGM positive. All, except wife, were CDC positive. Quest Diagnostics didn't pick it up on any of us.
How did this happen to the entire family? I was thinking just like you? How? Whats the likelyhood? Then, thinking back, we remembered our INDOOR cat scratching like she had fleas, around Christmas time. Thinking back, I remembered I had chest pains in December and was considering going to the hospital. We concluded that most likely we contracted lyme from either ticks on our Christmas tree (which was up for a month and a half due to my wife's illness.) or when we were out at the tree farm getting our tree. Thinking back, all four of us did the fall leaf cleanup in the yard in October. Jumping in the leaves, making scarecrows, etc. Thinking back, we went to the Catskill game farm in August. We spent a good half hour feeding and petting the deer (uh-duh real smart).
None of us ever saw a tick. And our rashes didn't come out for a very long time even considering the latest possible exposure scenario. (We eventually all did get rashes -- they don't all look like the pictures). My point is, the potential for exposure is there, the family naturally does things together, and you definitely don't necessarily notice the tick.
I don't know if you guys have lyme. Just trying to give you more information. BTW, though, with bands 31, or 39 AND 41 and with those twenty something bands on an IGM; I don't think there is much of a question. Also, we've found that having a coinfection (or more) makes it much much worse.
Hope this helps. Good Luck to you and your family.
- Mike
Posted by jmill2977 (Member # 10513) on :
Mike,
Thanks very much for your note.
I guess I need to really stop thinking of the "how" and focus on treatment. Howeer, there is still this lingering doubt as to what we really need to treat.
We are now focusing on treatment. My wife, in particular, is on a regimine of cat's claw, andrographis, and other spuulements/vitamins and seems to be doing well. As you know, though, every day can bring new surprises!
I hope you and your family get and stay well. This whole experience has certainly shed light on what is truly important in life!
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