posted
To make a long story short i was recently diagnosed with lupus . By my gp doc reason being is the malar rash with gets hot in the pm like clock work very butterflyish like rash . Along with my ears, they get hot as well.
My other symptoms are anxiety excema like blotchy rashes on the backs of my hands , diziness , mouth ulcers , had episodes of sore shoulder , stiff neck in the beggining and sore knees . Itchyness feeling no rash on bottoms of feet and eyes , definatly more sensitive to allergies . Sore lymph nodes under my chin .
I have tested positive for lyme in the past bands 41, 66 , 45, 85 . Treated with biaxin for 3months a couple years ago . And zith a few months after due to sore glands under my chin . For the past 2-3 years ive been preety much symptom free until recently .
As far as tests im testing negative for all bands through quest going to send out to igenex but i have had a bunch of lupus test done all negative, ana's negative, ss dna igg ab negative , ch50 panel negative , sjogrens anti- body negative , dna abs antibody negative . Only panel thats flagged is the c3d immune complex . 0-8 range im 50 .
I havent been able to find much on the c3d panel but seems to point towars lupus or infection lyme . Seeing my lupus results can i safely say it sounds like a co infection or lyme and scratch lupus .
I forgot to add some other specific symptoms ive had in the past were night sweats sore glands under armpits and chin , reacuring sore throats to no avail . and have seen streak like rashes on my stomach and back that come and go quickly .
Sorry to type so much and forgive any typos im real tired but let me know what you guys think
Posts: 14 | From ct | Registered: Apr 2008
| IP: Logged |
posted
I forgot to add some other specific symptoms ive had in the past were night sweats sore glands under armpits and chin , reacuring sore throats to no avail . and have seen streak like rashes on my stomach and back that come and go quickly .
Night sweats .. babesia
sore glands and streak like rashes .. bartonella
sore throats .. Lyme
You have your work cut out for you!!! I think if you get these taken care of you'll get rid of your rashes too.
Did you mean band 85 or band 83??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Yea oh man i kinda was thinking that but after the biaxin no more night sweats . Glands were still sore and is still happening . Yea i think bart is a problem may i add in out of body like experieces i forgot the term for it spaciness like feelings .
Its funny because i can tell by how im feeling if the c3d will be higher . when the heat sensations in my face are peak and im itchy the c3d seems to go up a little then it waxes and wanes .
Do any others experience anything like that ? Seems like bart treatment may be a good idea i also have the anxiety, heart palps, high blood pressure. Seeing im a male 20 years old i was told lupus would be very rare but im still a little concerned about it because of the malar rash . With all thos antibodies negative does it truly rule it out ?
Posts: 14 | From ct | Registered: Apr 2008
| IP: Logged |
posted
My daughter was dx Lupus about six years ago. Had the ANA indicators. She never had Lupus. Turns out it was Lyme all along, only discovered last year. With your positive bands I would stongly recommend you see a LLMD. Your state has some experienced ones. Go to the "Seeking Doctor" forum. Best Wishes, -p
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
posted
Any of those specific to lyme or co's ? the .08 igm mean anything it was circled as well
Posts: 14 | From ct | Registered: Apr 2008
| IP: Logged |
posted
Never heard of band 85. Band 83-93 is the DNA of the Bb Lyme.
you wrote:
"With all thos antibodies negative does it truly rule it out ? "
Who knows? Looks promising!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
lymecs, I've had the malar rash for many years. Also numerous lupus tests which are negative. I did have a positive ANA at one time but it has been negative numerous times since then so I've been told that the positive result was an error.
lymecs wrote: Only panel thats flagged is the c3d immune complex . 0-8 range im 50 .
Mine result was 111. I think they said that mine was the highest they had seen. They said it was often high in lyme patients. My LLMD said it meant we were killing lots of bugs but the debri was not getting out of the cells.
I was told to take drainage remedies (Pekana detox pack). At first I got a lot sicker but then started to feel a lot better. I have the HLA genotype that means that I have difficulty getting rid of the borrelia toxins.
Do a search on google by entering this search string. c3d immune complex lyme
You will find some info about this.
My sister developed lupus once she started to get treatment for lyme. I've been told that lyme inserts it's DNA into ours, causing our immune system to attack us.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Peedie:
My daughter was dx Lupus about six years ago. Had the ANA indicators.
She never had Lupus. Turns out it was Lyme all along, only discovered last year. With your positive bands I would stongly recommend you see a LLMD.
Your state has some experienced ones. Go to the "Seeking Doctor" forum. Best Wishes, -p
fyi, i too was diagnosed with LUPUS 3 TIMES; NOPE, CHRONIC LYME! 1 dr. told me i had lupus, walked out the door, and gave me NO INFO WHATSOEVER!!
have had chronic lyme 39 yrs; 34.5 yrs. MISDIAGNOSED BY 40-50 DRS!
IP: Logged |
posted
Request that your T and B cells be checked. See if you have disordered T cells. And, no, this will not show up on a white cell count.
You can also get a labial salivary gland biopsy which could show what they call seronegative Sjogrens. If you go this route, have it checked for Bb, by PCR. I wish I had done this. Mine was highly inflammed and full of lymphocytes. I didn't think to have it checked for Bb with PCR. I thought we were onto something with this autoimmune thing.
I will warn you now, that rheumatology treats all these diseases with either steroids or the TNF blockers, which are fairly new drugs that suppress T cells. Recently Raptiva made the news. These are not short acting drugs. They knock your T cells down for months. Several people have died from PML, a brain disease, that is caused by a virus called JC, which 80% of us carry in our bodies in a dormant state. Think twice if you have a history of Lyme or suspect it. I had IV steroids and never recovered.
Get a second opinion from an LLMD on the use of TNF blockers, research these drugs.
I will tell you my mainstream neuro, who treats me for autoimmune disease does not recommend these thing for me. I think he actually is beginning to realize something really, really odd is wrong with me...(Lyme) I can't expect him to risk his academic medical career and come out and say, I have chronic infectious Lyme.....Besides, how would he prove it.
There are other options for autoimmune disease. Feel free to PM me, and I will let you know what treatment I am on. It may be an option for you.
Since the medical community will not admit to Lyme as a chronic infectious disease, they will transform it into 'an unidentified seronegative autoimmune disease'.
*I am not a physician. You must work with a physician who understands your case. I can only share my experience as a fellow Lyme patient.
Posts: 11 | From Great Lakes | Registered: Feb 2009
| IP: Logged |
posted
Yes i am going to look into autoimmune had a ct scan done on sat. due to unbearable left side flank pain . Turns out I had a stone in my left kidney but the ducks told me both kidneys were inflamed could this be lyme related as i never had right side flank pain .
Any others deal with this i know from time to time my lungs have felt sore to, when i come to think about it they may have been inflamed as well i hope this can lead back to lyme but lemme know what you guys think .
Posts: 14 | From ct | Registered: Apr 2008
| IP: Logged |
Dawnee
Unregistered
posted
My ANA came up positive recently also. I am cdc positive for Lyme. My LLMD (and another LLMD I spoke to) says not to even worry about the ANA result because people with Lyme disease tent to have a positive ANA that comes and goes. It sounds to me like you still have Lyme and probably Bartonella at least.. with those streaks that come and go!
IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I believe Lupus is Lyme in most cases... if not all... Or the lyme triggers the lupus... whichever it is... but lyme is the cause of many autoimmune disorders. My husband's mother has 'lupus' and had undiagnosed lupus while she was pregnant with my husband. She had no idea she had lupus until she had him and he had a really weird rash on his face. And then she went downhill and became pretty sick pretty fast.
My husband has lyme. He does not have lupus. He does have an elevated ANA, but there are a couple other lupus blood tests that they can perform and those came back negative. Lyme can and will cause an elevated ANA in many people. It's never bothered my ANA, but I know many people who it has, like my husband. If my husband went to a regular mainstream doc, I am sure he would have been diagnosed with lupus like his mother just for having an elevated ANA. I think this is how many people are wrongly diagnosed with it... if a doc sees an elevated ANA they automatically say lupus.
My husband doesn't think lupus is actually lyme... but I say it is in most cases.
-------------------- 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 was another one diagnosed as "auto-immune" and had ana flucuate over the yrs, also complement factors are off for me to. i was tx by rhum. for last 9 yrs with immunosuppression (plaquinel, vioxx, embrel, methotrexate, etc) now...we know is lyme.. i am actually cdc postivie on igm response..but from all the yrs of immunosuppression my body is not making an igg response and neuro for me is very, very bad.....would highly recommend work up lyme first!!!! stay away from any type of rhumatologist until lyme testing and LLMD have been fully investigated...wish i would have know. but my mother in law is in the same boat now, lupus testing was neg. but want her to go to rhum.because they cant figure out what is wrong, now she is working on LLMD referal first because of seeing what has happened to me. please go to LLMD !!
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
| IP: Logged |
posted
ok..long winded but ment to open with lupus is an auto-immune response..to cause is unknown. with lyme as stated above researchers (columbia published on this i think,,memory pretty bad) did find that in long term infections the dna of bacteria bind with cellular dna..this said i cant believe this did not make national headlines for all auto-immune disease. Most all are considered to be responsive or post-infective just dont know the trigger. same for ms, als, parkinsons, alzheimers, etc....
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 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!
Printer-friendly view of this topic