posted
Hi everyone, I'm so glad I've stumbled across this site, I have a lot of questions. I hope someone can give me some insight!
I was dx w/ Lupus SLE in Sept '06 after I got a sunburn and a rash developed above my eyebrows and my chin. My derm took a biopsy and it came back "consistent with lupus erythematosus."
I was sure this was the answer I've been looking for and it explained my entire medical history. All my life I have had symptoms such as fatigue, migraines, "growing pains," sinus infections, strep carrier, salivary gland infections, kidney infections, klebsiella pneumonia infections, bacterial infections, monthly yeast infections, miscarriages, joint pains, Raynaud's phenomenon, etc. (the list could go on for pages).
I have a high ANA, DNP antibodies, Smith antibodies, low b12, the lupus anticoagulant, and anti-phospholipid syndrome (miscarriages & livido reticularis), interstitial cystitis, autonomic instability and of course, fibromyalgia.
I had a seizure like episode when I was 21 and similar experiences since then as well. Lately I have noticed more brain fog than usual, I have frequent heart palps and tachycardia, shortness of breath, blurry vision, ringing in my ears, and my hands and feet are often numb. I also see a white spot out my left eye and I often see phantom images and auras around people.
My mother and I recently went to a new Dr. in VA and a bunch of labs were run. My CD57 level came back at 30...and my mother's came back at 41. The labs also showed a very low vit. D count for me.
It was just my luck that these doctors I had gone to were LLMDs and they had me do the iGenix tests next. Those labs have come back and they show that I have lyme and Bburgdorferi western blot was positive.
IGMs IGM result NEGATIVE 31 kDa = IND 39 kDa = IND 41 kDa = + 66 kDa = + IGGs IGG results POSITIVE 31 kDa = ++ 34 kDa = IND 39 kDa = IND 41 kDa = ++ 58 kDa = + 66 kDa = +
So, my doctor prescribed me Biaxin 500mg 2x daily and gave me some info about herxing and what not.
My issue is this, I believe that I contracted lyme congenitally from my mother. She had scarlet fever (or something like that) when she was 4 after camping in Europe. Ever since then, she has been sick her entire life with symptoms much the same as mine except she has terrible irritable bowel (I just have a weak stomach and will throw up or have diarrhea sometimes). She was dx with fibro when she was 20 and even had a false positive syphilis test.
She had my sister when she was 21 and my sister was born with profound mental retardation and was a failure to thrive baby, low muscle tone, would puke up gobs of mucus that could be stretched and not break, it was pretty bad. All they know about my sister is that she has some sort of connective tissue disease and was once dx with Marden Walker Syndrome (she's the 27th person dx and the oldest that has lived). Before my mother had me, she was on antibiotics for an infection and somehow, I was born semi-ok.
To me it seems that the three of our cases are related. I haven't been able to find any research on families with lyme where children born with lyme are 25 and just finding out. What does anyone think about this? Does it sound plausible to anyone?
What I worry is that if I've had lyme this long - is taking antibiotics pointless? I have DNP antibodies which are indicative of lupus nephritis and that means kidney involvement...so I'd think mass antibiotics would be dangerous. And on top of that I've heard that taking the antibiotics makes symptoms worse depending on how long you've had lyme. So if I've had it this long, I'd think the bacteria die off would be devastating to my body.
I don't know what to think anymore honestly, I'm shell shocked. I haven't started the meds yet, I'm waiting until my Monday appt. with Dr. S in VA.
Anyone have any suggestions or ideas?
PS. If you've gotten this far and read this epic long post - thank you so much! I am desperate for all the info I can get at this point!
-------------------- Lo Posts: 3 | From DC Metro Area | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yes, sounds plausible to me!
I was bit when I was 14 (I was lucky enough to see the tick attached, but at that time didn't know anything about lyme disease, etc.)... now I'm 24. Had symptoms on and off since that bite but didn't get very ill until two years ago. Things like that is possible and is what happens to many lymies. They get sick years and years after they were bit or infected.
I would get your mom tested through IgeneX as well.
It is not pointless to take antibiotics now. You should. Talk to your LLMD about it. Lyme can kill. BUT you can get better. Don't think of it as being too late. Definitely not.
Good luck!
Also getting your sister tested for lyme sounds like a good idea. I'd be very interested in your mom and your sister's results.
PS - You're right in my area. I live 20 minutes from DC.
-------------------- 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
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bettyg
Unregistered
posted
WELCOME LO, SO GLAD YOU FOUND US! i'm just getting on so feel free to PRIVATE MESSAGE me, 2 people standing together.
i'll come back and answer some questions now, but want to send you my newbie package chuck full of things you want to know about !!
also, you did an outstanding on 1st post to break LONG SOLID BLOCK TEXT UP;
maybe 1 or 2 that could still be shorter for those of us with NEURO lyme and can't comprehend/read well!!!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
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bettyg
Unregistered
posted
quote:Originally posted by Lo3721:
My mother and I recently went to a new Dr. in VA and a bunch of labs were run. My CD57 level came back at 30...and my mother's came back at 41.
The labs also showed a very low vit. D count for me.
It was just my luck that these doctors I had gone to were LLMDs and they had me do the iGenix tests next.
reply: lo, please send me a PRIVATE MESSAGE, click on 2 people standing togehter, and give me the full name, city/state of this LLMD. i want to make sure they are on our GOOD LLMD NATIONWIDE LIST!!
you can find pms in MY PROFILE or on left side under hello!! big thanks!
Those labs have come back and they show that I have lyme and Bburgdorferi western blot was positive.
Reply: THANKS FOR postings your positive/IND numbers!!
PRINT OFF THE BELOW "DR C'S" WESTERN BLOT IGM AND IGG; circle your positives/ind on there; to right is explanation about each number!!
So, my doctor prescribed me Biaxin 500mg 2x daily and gave me some info about herxing and what not.
My issue is this, I believe that I contracted lyme congenitally from my mother.
REPLY: yes, that is VERY POSSIBLE! we've all been misdiagnosed with so many things.
300 OTHER ILLNESSES MIMIC LYME DISEASE; i believe scarlet fever is on there; fibro/chronic fatigue definitely are.
you've had miscarriages; that's part of lyme too!
She had scarlet fever (or something like that) when she was 4 after camping in Europe.
Ever since then, she has been sick her entire life with symptoms much the same as mine except she has terrible irritable bowel (I just have a weak stomach and will throw up or have diarrhea sometimes).
She was dx with fibro when she was 20 and even had a false positive syphilis test.
She had my sister when she was 21 and my sister was born with profound mental retardation and was a failure to thrive baby, low muscle tone, would puke up gobs of mucus that could be stretched and not break, it was pretty bad.
All they know about my sister is that she has some sort of connective tissue disease and was once dx with Marden Walker Syndrome (she's the 27th person dx and the oldest that has lived).
Before my mother had me, she was on antibiotics for an infection and somehow, I was born semi-ok.
To me it seems that the three of our cases are related. I haven't been able to find any research on families with lyme where children born with lyme are 25 and just finding out.
What does anyone think about this? Does it sound plausible to anyone?
What I worry is that if I've had lyme this long - is taking antibiotics pointless?
I have DNP antibodies which are indicative of lupus nephritis and that means kidney involvement...so I'd think mass antibiotics would be dangerous.
And on top of that I've heard that taking the antibiotics makes symptoms worse depending on how long you've had lyme. So if I've had it this long, I'd think the bacteria die off would be devastating to my body.
I don't know what to think anymore honestly, I'm shell shocked. I haven't started the meds yet, I'm waiting until my Monday appt. with Dr. S in VA.
Anyone have any suggestions or ideas?
since you see a llmd this monday, you can wait since it's only 2 days to go.
when you get my newbie package; do an edit, find or PREPARING FOR FIRST LLMD APPOINTMENT...
start typing up your questions; MOST IMPORTANT ONES AT TOP!!
print off dr. burrascano's 05 lyme treatment guidelines too.
eyes ... you should have a lyme eye specialist check out your eys for lyme, etc!!
yes, your mom and sister need to have western blot igm/igg done too from igenex.
look over the CO-INFECTION LIST GOOD TOO; we recommend FRY LABS for that; it's cheaper than igenex but quality is as good.
all this info is in my info package!! **************************************
see you have some answers in the WEE AM HOURS!! **********************************************
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
as i read your post i was certain you were talking about my llmd, and when i got to the end i learned i was correct.
you are in good hands. as you have already learned he is very thorough, and the handouts he gives you are worth their weight in gold because i would never remember all the things he tells me to do!
i believe i've had lyme since childhood. i also see signs of it in my kids, manifested in different ways, but they are not at the point that getting tested would be worthwhile for them.
they have to see the need. at this point only one realizes how ill i am, but his symptoms are more neuropsychiatric.
there is a nova group for people with dysautonomia. it meets this week. pm me if you would like more info.
welcome to lymenet.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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