posted
Hoping I can get some feedback, as I'm concerned I might have LD. Late last Aug ('07) I thought I had come down with a summer "flu bug". I awoke with swollen glands along both sides of my neck, headache, stiff neck, low grade fever... It passed and then a couple weeks later, I developed a solid, purple-ish, what appeared to be a bruise-type mark on my right calf. I only was alerted to it since I was wearing capris and my husband noticed it while we were out walking - it was just visible below the hem. He wanted to know how I got the "bruise". I looked at it and was puzzled. I couldn't remember any "incident" that would've caused it. It looked as if I might have been jabbed by the end of a mop handle or something like that, as it was nearly a perfect circle. I have always bruised easily. My skin is pretty sensitive, so I usually have some tenderness at the site of a bruise, however, when I touched the mark, it didn't hurt at all. I thought that was strange, but just shrugged it off. Within a few days of that, I checked on the status of it to see if it had disappeared or was turning greenish-yellow as they tend to do with me, and that is when I saw it was clearing from the center. It was still purple in tone, but now the center was completely clear. That was when I thought - uh oh. I was aware of Lyme - we live in a wooded area in a log cabin in Western NY - very close to the PA line, and I have seen deer ticks in our shower in the past, so I didn't blow it off. I remembered the flu-like symptoms I had felt a couple weeks prior, so I got right on the phone and called my GP.
She saw me and looked at the mark. In her opinion it looked like a classic spider bite - something that had a venom that caused bleeding under the skin. It made sense to me, as it did appear to be a bruise (bleeding under the skin) and we have tons of spiders around here. She said those types of bites typically look like that and clear from the center. The only thing that didn't make sense to me was the "lack of pain". When I'm bit by insects - esp. spiders, I typically have some sort of swelling, itching, and/or pain. This mark was nothing like that - it wasn't even raised. Just in case, however, she ordered me up an ELISA test that I had to have done at a certain lab that participates w/ my insurance. Her office called me with the news that the result came back negative, so I didn't have Lyme. I was relieved.
I was tested within 4 weeks of having the flu-like symptoms, and two-weeks w/in having the rash. I've since learned that I could've been tested too soon and that such tests shouldn't be used as a diagnostic tool to rule in/out Lyme. Since I didn't know of a tick bite, the spider bite theory made sense... until other things started happening.
By Oct. I was starting to experience some strange things happen. I had a bout of carpal tunnel in my wrist that lasted not even a week. Since then I've had joint pain come and go in my shoulder, elbow and wrist on my R. side and on my left side, my ring finger suddenly became stiff. None of this "pain" and stiffness has been debilitating, but it has been uncomfortable enough to be noticed by me, and I've taken ibuprofen which took the edge off of it. I had one dizzy spell, heart palps (which I've had in the past, however it had been a long time since having them), feelings of buzzing/tingling/ electrical charges on the left side of my face and the tip of my nose, pins & needles feelings (like something is going to sleep) in my knee cap and palm of my hands... in general, just really weird stuff. I had a baby 10/06, but starting last fall, I noticed that I had what appeared to be an irritable bladder (and attributed it to having the baby the year before). I go to the bathroom, and then seconds later, I feel like I need to go again. This comes and goes. The most frustrating things, however, have been my night sweats and hives. I nursed my baby for the first year of his life, so I completely weaned him last Oct. Well, shortly after that, I started having night sweats. I figured it was my hormones re-adjusting now that I was weaning from breastfeeding, but I'm still having them. Sometimes I drench the sheets (usually once or twice a month). Other times, it is just enough to dampen my nightclothes. It is sporadic. I keep the bedroom at about 69 degrees, so I can't say it is from excess bedding or too hot of a room. Then, in Nov. I developed two other bruise-like marks that were hollow in the middle (more like rings) - one on one side of my back and the other on the other side. They were about two weeks apart (my Dr. thought it was ringworm). The one lasted for about a week, and the other for only a few days. (I have taken pictures of these "rashes" so I have them documented with measurements - they were no larger than a dime, but this time more "reddish" than purple like the one on my leg. They too, looked more like "bleeding" under the skin.
Also, late in Nov. I started getting what were like "hives" on my lower legs. These things never go above the knee. When they first "start up", they itch. Then they raise, and sometimes the middle falls in and clears while other times, they stay raised and solid red. These last for usually no more than 24 hrs. - some stay around a little longer. Sometimes I only get one, sometimes two. The most I've had are 9 at once between both legs. Sometimes they appear on both legs - other times on only one. And then there is the fatigue. UGH! It comes and goes. I may feel great for a couple of days - even a week or so, but then it's like I've been run over by a bulldozer! My eyes burn and sting - they get slightly red and watery and my eyelids feel like they're weighted.
I've bugged my GP about all of these things. She saw me in Feb. when I had the hive-like rash and referred back to the fall when she tested for lyme. She told me ticks can carry other infections, so she put me on a 10 day course of doxcycline and said that was the standard protocol for Lyme as well, so if in fact, it might have been Lyme, we would nip it then. She also ordered up more bloodwork to check for Lupus, thyroid etc., as she wondered if my "rash" - hive-type things could be discoid Lupus, etc. All the bloodwork came back w/in normal limits, so she felt I was OK.
When she brought up Lyme at that apt. and wrote me my antibiotic script, I started reading about it and learned of the unreliability w/ testing, the timeframes for testing, the differences of opinion in treatments/lengths of treatments, and even the fact that if I had been infected, I was probably suffering from later stages of the disease! I think my GP has tried to do well by me, but I fear she just isn't "in the know" when it comes to this particular disease.
I've since had a skin biopsy on one of my hives - it came back nonspecific - some type of "benign hemangioma" - the surgeon who did the biopsy told me he thought it was just plain "urticaria" or hives - being triggered by some unknown irritant.
I've now read that hives can be a symptom of Lyme.
I'm sorry for this ultra-long post, but I'm hoping someone can shed some light on this for me. I'm 35 going on 36, and I'd so like to try for one other child, but I'm terrified of getting pregnant in the off-chance that I might have Lyme. I'm desperately wanting some answers, and I have no idea what road to pursue. If anyone has had similar problems and has been in fact diagnosed with Lyme, I would greatly appreciate your input!
I know of no Lyme literate doctors here in Western NY.
Thanks for listening!
Posts: 3 | From NY | Registered: Jul 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
First i am going to break this up so those with neurolyme/eye issues can read
Originally posted by morganfan: " Hoping I can get some feedback, as I'm concerned I might have LD. Late last Aug ('07) I thought I had come down with a summer "flu bug".
I awoke with swollen glands along both sides of my neck, headache, stiff neck, low grade fever...
It passed and then a couple weeks later, I developed a solid, purple-ish, what appeared to be a bruise-type mark on my right calf.
I only was alerted to it since I was wearing capris and my husband noticed it while we were out walking -
it was just visible below the hem. He wanted to know how I got the "bruise".
I looked at it and was puzzled. I couldn't remember any "incident" that would've caused it.
It looked as if I might have been jabbed by the end of a mop handle or something like that, as it was nearly a perfect circle. I have always bruised easily.
My skin is pretty sensitive, so I usually have some tenderness at the site of a bruise, however, when I touched the mark, it didn't hurt at all.
I thought that was strange, but just shrugged it off.
Within a few days of that, I checked on the status of it to see if it had disappeared or was turning greenish-yellow as they tend to do with me, and that is when I saw it was clearing from the center.
It was still purple in tone, but now the center was completely clear. That was when I thought - uh oh.
I was aware of Lyme - we live in a wooded area in a log cabin in Western NY - very close to the PA line, and I have seen deer ticks in our shower in the past, so I didn't blow it off.
I remembered the flu-like symptoms I had felt a couple weeks prior, so I got right on the phone and called my GP.
She saw me and looked at the mark. In her opinion it looked like a classic spider bite - something that had a venom that caused bleeding under the skin.
It made sense to me, as it did appear to be a bruise (bleeding under the skin) and we have tons of spiders around here.
She said those types of bites typically look like that and clear from the center. The only thing that didn't make sense to me was the "lack of pain".
When I'm bit by insects - esp. spiders, I typically have some sort of swelling, itching, and/or pain. This mark was nothing like that - it wasn't even raised.
Just in case, however, she ordered me up an ELISA test that I had to have done at a certain lab that participates w/ my insurance.
Her office called me with the news that the result came back negative, so I didn't have Lyme. I was relieved.
I was tested within 4 weeks of having the flu-like symptoms, and two-weeks w/in having the rash.
I've since learned that I could've been tested too soon and that such tests shouldn't be used as a diagnostic tool to rule in/out Lyme. Since I didn't know of a tick bite, the spider bite theory made sense... until other things started happening.
By Oct. I was starting to experience some strange things happen. I had a bout of carpal tunnel in my wrist that lasted not even a week.
Since then I've had joint pain come and go in my shoulder, elbow and wrist on my R. side and on my left side, my ring finger suddenly became stiff.
None of this "pain" and stiffness has been debilitating, but it has been uncomfortable enough to be noticed by me, and I've taken ibuprofen which took the edge off of it.
I had one dizzy spell, heart palps (which I've had in the past, however it had been a long time since having them),
feelings of buzzing/tingling/ electrical charges on the left side of my face and the tip of my nose, pins & needles feelings (like something is going to sleep)
in my knee cap and palm of my hands... in general, just really weird stuff.
I had a baby 10/06, but starting last fall, I noticed that I had what appeared to be an irritable bladder (and attributed it to having the baby the year before).
I go to the bathroom, and then seconds later, I feel like I need to go again. This comes and goes.
The most frustrating things, however, have been my night sweats and hives. I nursed my baby for the first year of his life, so I completely weaned him last Oct.
Well, shortly after that, I started having night sweats. I figured it was my hormones re-adjusting now that I was weaning from breastfeeding, but I'm still having them.
Sometimes I drench the sheets (usually once or twice a month). Other times, it is just enough to dampen my nightclothes.
It is sporadic. I keep the bedroom at about 69 degrees, so I can't say it is from excess bedding or too hot of a room.
Then, in Nov. I developed two other bruise-like marks that were hollow in the middle (more like rings) - one on one side of my back and the other on the other side.
They were about two weeks apart (my Dr. thought it was ringworm). The one lasted for about a week, and the other for only a few days.
(I have taken pictures of these "rashes" so I have them documented with measurements - they were no larger than a dime, but this time more "reddish" than purple like the one on my leg.
They too, looked more like "bleeding" under the skin.
Also, late in Nov. I started getting what were like "hives" on my lower legs.
These things never go above the knee. When they first "start up", they itch.
Then they raise, and sometimes the middle falls in and clears while other times, they stay raised and solid red. These last for usually no more than 24 hrs.
- some stay around a little longer. Sometimes I only get one, sometimes two. The most I've had are 9 at once between both legs.
Sometimes they appear on both legs - other times on only one. And then there is the fatigue. UGH! It comes and goes.
I may feel great for a couple of days - even a week or so, but then it's like I've been run over by a bulldozer!
My eyes burn and sting - they get slightly red and watery and my eyelids feel like they're weighted.
I've bugged my GP about all of these things.
She saw me in Feb. when I had the hive-like rash and referred back to the fall when she tested for lyme.
She told me ticks can carry other infections, so she put me on a 10 day course of doxcycline and said that was the standard protocol for Lyme as well, so if in fact, it might have been Lyme, we would nip it then.
She also ordered up more bloodwork to check for Lupus, thyroid etc., as she wondered if my "rash" - hive-type things could be discoid Lupus, etc. All the bloodwork came back w/in normal limits, so she felt I was OK.
When she brought up Lyme at that apt. and wrote me my antibiotic script, I started reading about it and learned of the unreliability w/ testing,
the timeframes for testing, the differences of opinion in treatments/lengths of treatments, and even the fact that if I had been infected,
I was probably suffering from later stages of the disease!
I think my GP has tried to do well by me, but I fear she just isn't "in the know" when it comes to this particular disease.
I've since had a skin biopsy on one of my hives - it came back nonspecific - some type of "benign hemangioma" -
the surgeon who did the biopsy told me he thought it was just plain "urticaria" or hives - being triggered by some unknown irritant.
I've now read that hives can be a symptom of Lyme.
I'm sorry for this ultra-long post, but I'm hoping someone can shed some light on this for me.
I'm 35 going on 36, and I'd so like to try for one other child, but I'm terrified of getting pregnant in the off-chance that I might have Lyme.
I'm desperately wanting some answers, and I have no idea what road to pursue. If anyone has had similar problems and has been in fact diagnosed with Lyme, I would greatly appreciate your input!
I know of no Lyme literate doctors here in Western NY.
Sorry for my "congested" post and thank you for re-working it! - It is much easier to read now!
I guess it shows by "newbie-ness"! That was my first post ever to any message board!
I appreciate your feedback - I will post in "seeking a doctor" as well.
Posts: 3 | From NY | Registered: Jul 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Welcome Morgan.
I'm so glad that you persisted to find information. I have to say that all of your symptoms are certainly consistent with Tickborne diseases (TBDs).
Please do post in 'seeking' for a doc who knows what they are doing. You need a prompt evaluation and it sounds like you sure need meds to me.
Consider Babesiosis as one of the possible co-infections you may have acquired, as night sweats and bruising are red flag symptoms for this particular TBD.
Good luck!
Melanie
(and thanks Azure...that was very nice of you)
Posts: 7052 | From Colorado | Registered: Mar 2003
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bettyg
Unregistered
posted
morgan, welcome here; glad you found us in time to get treatment for quite sometime!
how is your baby? showing any signs of lyme because they can be born with CONGENITAL LYME from you. it sounds ilke you've had this 1-2 yrs. so it is a POSSIBILITY!
kids symptoms are in my newbie package i offer below....
and please break up all future posts as AZURE DID FOR US NEUROS to read/comprehend it!!! we thank you!
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! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
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.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ***************
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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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