posted
Sorry if this should be posted somewhere else. Please let me know..
Thank you all for being here.
Back in August I posted asking for advice regarding an upcoming appt with my llmd and the fact that I hadn't quite followed my protocol. I received some good advice and thought I would follow up and reach out for yet some more support.
Most of my family and co-workers are tired of hearing about LD and how I feel (even though I try my best not to complain).
I've never really posted my story (I guess I thought noone would really want to listen). But, maybe if I let you all in I'd feel a sense of belonging.
So here goes...
My journey with LD began September 8, 2007 when my family (me, my husband and two kids)were attending a family reunion in TN. We spent a total of 6 hours outside at the picnic! I sprayed everyone with Off upon arrving! On the way home (a 3 hour drive) on of my relatives called to tell me she and a couple of others found several ticks on them and to check everyone upon arriving home. I checked everyone and did not find any. Everyone changed into their pjs and wet to bed. Needless to say....I DIDN'T HAVE ANYONE CHECK ME and I fell asleep with the same clothes on. So....I have myself to blame for the events that would follow and for allowing this to happen. If only I had checked myself!
I found a tick on me on 9/10/09 (2 days after the reunion) after a hot shower. There was a red area on my chest above one of my breast and was itchy.
I couldn't remove it due to the location so I asked my husband to help. He tried a couple of times and told me it was a mole. I got a magnifying glass and said "see that mole has legs!" He tired again and got it. It was the tiniest tick I'd ever seen. I placed it in a baggie for some reason.
I went about my life and 10 days later on 9/20/07 the spot was itching like crazy . I went to look at it and saw a large circular bullseye rash. I looked it up online and LD came up everywhere.
I went to my doctor the following morning (9/21/07). He measured the rash and documented it and put me on a 14 day round of Doxy. He said it was only pre-cautionary and that it probably wasn't LD. I was relieved and went on my way with script.
I took Doxy as prescribed for 14 days. I felt okay but once off the Doxy felt worse so I went back to doctor and he put me on penicillin. Penicillin did not help at all so he put me on Doxy again.
Went back again on 10/16/07 feeling like I had the flu and was given Prednisone.
Went back again on 10/222/07...More Doxy.
Went back on 10/23/07 feeling extremely weak, painful muscles, headache, dizzy, more flu-like symptoms x 10, crying uncontrollably. Doctor admitted me to the hospital. They ran every test under the sun including a spinal tap. All came back negative.
I was discharged on 10/25/07.
Re-admitted 10/28/08 with a spinal tap headache.
Remained in bed for 7 days until headache subsided.
After that I saw another doctor locally who believed I had a tick borne illness and treated me with 30 days of Doxy and several steroid shots/dose packs.
After many physician visits (including a infectious disease specilist who diagnosed me with CFS and wanted to put me on Ridalin) a co-worker recommended I see the LD physician her husband was seeing.
I made the call and had my first appt with him on 1/30/08. He felt without a doubt that I had a tick borne illness and told me he thought he could help me. I left with much information and my scripts.
I went back home and started my meds...long story short for the past 2 years I've been on and off meds but haven't been able to stay on the regimen prescribed by llmd due to other issued popping up (gut and bladder).
To complicate things I have always had an issue with taking medication due to my mother ending her life at the age of 25 via pills (I was 5).
So, here I am now. I went to my follow-up appt in August and I explained everything to my llmd. Including the reasons for not taking my meds. He said he understood.
As of today I'm still able to work my full-time job and get my 11 & 9 year old where they need to be and keep my household somewhat in tact.
My main symptoms are muscle aches, joint swelling (mainly in my ankle), joint pain (toes, knees and thumbs), some back pain, head pressue, ear pressure, some diziness but comes and goes, feet hurt. Blood tests now show elevated candida levels and now thyroid problems (hypo).
I have never been a very calm person nor have I been an individual with much determination. Two characteristics that seem to be pertinent to conquer this disease.
So, here I am I filled my scripts from my August appt but to scared to begin them. I have fears of side effects, c-diff, herxing, not being able to work and help support my family, losing my mind and doing what my mother did so long ago.
I do believe God brought me to this situation for a reason. I just wish I new the reason and that I could find someone close by to be a "cheerleader."
My kids pray often for me to "be like I used to be." When I ask my husband for help with my fears and with remembering to take my meds he tells me "I'm a grown up." Although, he does believe that I have ld and supports me when I'm feeling well.
I'm not sure of my reasoning for writing all of this other than to just get it out there.
Very tired now...going to bed. Thanks everyone for listening. Posts: 124 | From Indiana | Registered: Oct 2007
| IP: Logged |
posted
Thank you to everyone that read and responded earlier. I went back to re-read for some continued support but all the posts seemed to have disappeared.
Does anyone know where they went?
Thank you all!
Posts: 124 | From Indiana | Registered: Oct 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Michele: ...but all the posts seemed to have disappeared.
posted
If you are having gut problems from the meds, what about discussing IV meds with your LLMD.
Also, be sure you are taking a very good probiotic, as far away from the abx as possible.
I take my abx morning and night, and take Multidophilus12 at noon time with lunch.
Perhaps your husband is feeling overwhelmed and doesn't want to be responsible for reminding you to take meds in case he forgets.
Can you get one of those watches that has an alarm on it, and it will remind you to take your meds?? Might help.
I use a weekly pill organizer, even though I'm only on one med, so I can tell if I've taken them or not.
Keeping you in prayer. Remember, this is only the beginning of the journey, eternity is a very long life, and you are never alone. Enjoy whatever you can every day! =)
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
posted
Just a thought, since you have issues with taking medicines, some go alternative routes, like rifing, salt/c, infrared with nosodes.(bionic880) there are testimonials here from people who have been cured by those alternative approaches.
Posts: 366 | From Europe | Registered: Nov 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!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic