Hello everyone, recently diagnosed, just started doxycycline

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syrup9001
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/22/2009 11:50 AM (GMT -7)   
Hello everyone, I was just diagnosed with lyme disease just yesterday!! I wanted to share my story and maybe get some advice or suggestions.

My situation is as follows. Sorry if its a little terse and list-like, but I'm bad at organizing my thoughts.

  • I had a bugbite that developed into a bullseye rash when I was about 5 years old. My mother had heard of lyme disease so she took me to the doctor. I took medicine for a while (No idea what or for how long) and I never had any other symptoms that I can recall.
  • I've had some other symptoms through the years that in retrospect may or may not be lyme disease related (a couple of episodes of joint pain/swelling, fatigue and thyroid problems, maybe some memory problems & brain fog)
  • Anyways, now I'm 23 and in the past two months I've been sick off and on.

    It has seemed like I have had about 4 different unrelated minor infections that came and went

      1) common cold (runny, stuffy, sneezy)
      2) awful diarrhea since which I seem to have developed lactose intolerance
      3) swollen glands/lymph nodes, sore throat, post-nasal drip, could not even blow my nose for some reason (mucus too thick??)
      4) itchy rash (viral exanthem) with moderate fever

    And I've had the following other symptoms

      1) wonky body temperature that spikes down low to 97 and up to 100. I know that body temperature can naturally vary, but I used to be pretty strictly in the 98 range. These high and low spikes often accompany weakness & nausea.
      2) a few petichiae and hundreds of cherry angioma have popped up mainly on my arms/legs/shoulders/back
      3) minor joint pain all over, a little bit of fluid collecting here and there (particularly ankles), right wrist is a bit tingly when using computer
      4) upper abdomen has been slightly puffy with some occasional pinchy/crampy/slightly sharp pains & a cat scan showed mildly enlarged spleen
      5) weight loss of 10 lbs (already was skinny, now I'm decidedly underweight)
      6) anxiety, mainly about my health!



Anyways, when the joint pain showed up my primary care doctor decided to do a lyme test. The results were POSITIVE for Western Blot IgM but not for IgG. My doctor said this indicates an acute infection (not chronic) so she put me on 100 mg twice a day of doxycycline for 21 days and then we'll follow up and see how I'm doing.

An infectious disease doctor who I've also been seeing said however that she did not think my symptoms were at all characteristic of lyme disease. The only one that might be is the joint swelling but I have a history of that so she thinks its just how my body deals with infection. And she said that she would not trust any test results since I would probably test positive no matter what because I had the bullseye rash years ago. She just thought I've had a bad infection or two (maybe something like mono) and all I need is bed rest. Well that might be true but I feel safer going ahead with the lyme treatment...

Since starting the doxycycline (I've taken 3 doses so far) I've developed a really bad petichial(pinpoint bruises) rash on my upper thigh. It has occurred in a kind of stripey way like scratches, I think I must have been scratching my leg and caused all kinds of under the skin bleeding. It looks pretty bad.

So anyways, in summary:
1) hello!
2) have i been reinfected with lyme disease? has it been lurking in my system for 18 years??
3) does this treatment sound appropriate?
4) should I be worried about this rather large petichial rash?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/22/2009 1:53 PM (GMT -7)   
Hi Syrup!!!
So glad you found us!! You will find that generally people here are very helpful, caring, compassionate people. So Welcome!!!

*************************************
I am NOT medically trained, and all info is just IMHO!!!
**************************************

Without knowing what you were given & for how long, definitely leaves you open to chronic LD - other more knowledgable member will hep you

with that. Although that sounds a lot like my situation - being infected at the age of 5 - 7, myself - always felt like I was 'behind the 8 ball'

with my health. When I was a child, I stumped doc after doc!

Sometimes a person will not have a pos on any TBI (Tick Borne Infection) infections (like me), until being on abx tx for a while - it took a full

yr of Mino for me.
It's quite normal to have a 'wonky' body temp. Mine is usually 97.4, until the afternoon, when

it will raise to 99.8 or 99.9. You will find lots of Lymies have this.

The bruising , swelling of joints, & red streaks are all part of one of the TBI diseases or another. It would be incredibly helpful to read

the post titled " Newbies", and to do as much reading as possible on LD & it's co's.

You will also find a lot of docs' who have NO clue as to what they are talking about when it comes to LD. It's a sad fact, but it is a fact!

When I fist started seeing an LLMD, he confirmed that I HAD been infected for many years & assumed I had all the cos', plus what

has become known as Master's Disease (AKA - STARI). I had started seeing a regular gp as well, but she stated in my records; "patient

believes she has Lyme Disease'!!! smhair Of course I no longer see her.

Well, not to blabber on here... Welcome to HW, I'm sure you will find many, many answers here!!
~ Trav

PS- In case you are wondering what's up with the way my post is broke up like that - It's because some of us with LD affecting our eyes,

cannot read a post that is not broke up. It just looks like a bunch of very, very blurred lines!! shocked
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/22/2009 2:29 PM (GMT -7)   
syrup9001,

welcome to the board.
from all i have learned in the last few months about lyme. you can have in for many yrs and not know it. as i believe i was infected about 10 yrs ago. i just found out i had lyme a few months ago.

if you can see a LLMD please do so. most Drs have no clue about lyme.

and from my own experience IDs are the worst. the one i was sent to told me i had a false positive test. i to tested pos for IgM.

as for the rash, there is a link that shows the different kinds of rashes caused by TBI infections. and i hope someone will post the link to you. as i do not have it :(

read the tread called newbies at the top of the page, and you will find a wealth of info there.

again welcome to the board and i pray your better soon. :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/22/2009 3:54 PM (GMT -7)   
For anyone who has yet to visit the Lyme Disease Associations' site, please do this!! You will find a wealth of info there!!


This is their web addy;

http://www.lymediseaseassociation.org/

(You will need to copy & paste these)

Here is a link to pics of the rash for LD (Less than 1/2 of those infected won't get a rash!!);

http://www.lymediseaseassociation.org/PhotoAlbum_Rash.html

And this is a link to the rash from Bart;

http://www.lymediseaseassociation.org/PhotoAlbum_RashBart.html

But please, please do yourself a favor & visit this website as well!! We love to have you spend time here, but no one site has ALL of the info.

My battle cry; We MUST be our own advocates!!!

Hope this helps & be sure to visit the links listed at the very top of the homepage for LD!!~
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 8/22/2009 7:02 PM (GMT -7)   
Traveler

Glad you mentioned breaks in a post for easier reading, will do

so now and in the future. I learn something new everyday.

Thanks,

Jane

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/22/2009 7:17 PM (GMT -7)   
Traveler,

Thanks for posting those informative links:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/22/2009 7:21 PM (GMT -7)   
Hi Syrup,

Welcome to the forum! We are so glad you found us:)

Are you currently on treatment? If you need a doctor recommendation, please let me know.

Below is some great info for you to read up on. I will also bump up the "Lyme Symptom" thread for you.

ILADS is also a great site to find information:
http://www.ilads.org/


For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/22/2009 8:21 PM (GMT -7)   
Syrup (and others): Do you realize the utterly ridiculous logic on the part of your ID Dr??

1) A bull's eye rash always indicates Lyme. Not all lyme sufferers had the bull's eye, but those who did, have/had lyme for certain.

2) Knowing this, your ID Dr said that 'she would not trust any test results since I would probably test positive no matter what because I had the bullseye rash years ago'.

Well, I'll be darned! Your Dr is saying that because you had lyme, as proven by your bull's eye, your lyme test will be falsely positive because you had the bull's eye, ie; because you had, and have Lyme. So there's no point in doing a lyme lab test!!

Sheesh.......
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/23/2009 12:29 AM (GMT -7)   
+Lyme,

i know its a joke but we are the ones who pay the price for there stupidity.

i am starting to really despise IDs now. not only from my own issues but seems like everyday someone else has almost the same issues with them.

its so wrong, and senseless too. sometimes i feel as tho i could just scream for the injustices of it all.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


syrup9001
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/23/2009 3:03 PM (GMT -7)   
Thank you for all the replies and information. This diagnosis is really overwhelming and the more I read the more confused and anxious I get.

I definitely have not had any of those rashes pictured (except of course the original rash back when I was 5). What I have now, while it occured along stripes, is not actually itself a stripe. Its definitely made of tiny dots and bruises.

I read on a website that unusual bleeding/bruising can be a severe side effect of doxycycline and should stop taking immediately if you experience it. So I will call my doctor in the morning...
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