HealingWell
Search Close Search
☰

Hello from a possible new lyme sufferer

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/26/2011 7:42 PM (GMT 0)
Hi! I'm not even sure where to begin or what to say/do. I have been feeling horrible the last 6 months or so. It's been one infection after another. I went to the ER back in May 2010 thinking it was my appendix. All they could find was a bad UTI. Also suffered countless ear/sinus infections in that period of time. Exhausted, run down feeling that I of course chalked up to stress, working 6 days a week, then eventually the holidays. Last Monday (1-17-11) I went to my doctor because of how I'm feeling. They did bloodwork thinking I had picked up mononucleosis. Finally ot the results on Thursday and they were negative for mono. Couldn't sleep Thursday night and was facebook chatting with a friend of mine who is a nurse at the local hospital. She asked if I was checked for lyme. Called the doctor on Friday and got a script for a lyme test. Still waiting for the results but judging from what I've read I'm not holding my breath that it will be positive. I go back to the doctor on this Friday to discuss the results, etc.


Anyhow some of my symptoms over the last 6 months and now include:

fatigue

pressure in head (particulary right side, behind my right ear)

swollen glands on right side of neck

dizziness

joint pain

confusion (It's almost like my brain knows what I want to say but it gets lost before it gets to my mouth, if that makes sense. Along with of course walking into a room and fogetting why)

crawling sensation under skin/itching (I work 3rd shift and it seems to happen most at around 5 am..strange I know)

vision changes/blurriness (which I chalked up to just age and needing my eyes checked)

crying easily, for no reason

I went out with a friend to celebrate her birthday back in early December. I had a glass of wine and 2 beers in a 4 hr period and got really really sick.

In October 2010 I was at my doctor for another sinus infection and when they were checking me they noticed an irregular heartbeat. Did an ekg in the office. Chalked it up to the decongestant in the Allegra D I was taking.



I live in northeastern Pennsylvania, spent some time this past summer hiking trails near my house. Also early last May my family and I went to a car race in a small town by me. Basically it's on the road and they close the road and race up and down this windy hilly road. People aren't allowed to be on the road so they have trails going through the woods to get to the top of the hill. I do not remember a bite or the tell tale rash.



Could I have lyme? Also what can I do until the tests come back? I am trying to drink some lemon water (using bottled lemon juice as lemons arent easy to come by). I'm just confused, scared, worried. I am not working right now because I work in a factory as a machine operator. I'm afraid to be standing in front of a machine going 160 feet a minute when I'm dizzy. Also sorry for rambling on. I have a tendency to do that when I'm nervous.



Thank you for your time.

Post Edited (JeannieM) : 1/26/2011 1:05:28 PM (GMT-7)

Posted 1/26/2011 8:15 PM (GMT 0)
It certainly sound like it could be lyme. Make sure they run a western blot and not just elisa and GET A COPY OF YOUR RESULTS. A negative test does not necessarily mean you do not have lyme. Lyme must be clinically diagnosed. Post your results here and people will be more than happy to help. Have you ever had joint pain before or did it just come on? Keep researching this site. You will find amazing information. Best of luck to you.
Posted 1/26/2011 8:16 PM (GMT 0)
It certainly sound like it could be lyme. Make sure they run a western blot and not just elisa and GET A COPY OF YOUR RESULTS. A negative test does not necessarily mean you do not have lyme. Lyme must be clinically diagnosed. Post your results here and people will be more than happy to help. Have you ever had joint pain before or did it just come on? Keep researching this site. You will find amazing information. Best of luck to you.
Posted 1/26/2011 8:31 PM (GMT 0)
Thank you! I will get a copy and post the results here. The only joint pain I had before this was my left knee. I've injured that knee too many times over the years to count LOL But recently my other knee started hurting, ankle's, neck, you name it. I'm 41 yrs old and my husband lovingly (I hope) calls me granny lately because of the joint pain/stiffness.
Posted 1/27/2011 2:02 AM (GMT 0)
Jeannie,
I go tomorrow to my dr who informed me I had an issue with Lyme (I was told last week). I don't know what we're going to do. I'm scared.

I have right painful elbow, neuropathy, headaches, body temp 97.1 this afternoon. It used to always be 98.6. Icy feet and hands, achy, weak, fatigue, back pain, neck pain, eyes not the same, loss of appetite.

Good luck,
HorseHelper
Posted 1/27/2011 3:28 AM (GMT 0)
Best of luck to you too!! I understand the scared worried part very well. I feel that no one understands, no one cares, I feel people think I'm lying about feeling this way to get out of work. I just want answers as to why I'm feeling this way and I'm afraid I'm never going to get them.

Also with me, it's really strange because I feel worse at night then I do during the day. Anyone else like that? I can't fall asleep and then when I do I have some really really strange dreams.

Hope everyone has a great night.
Posted 1/27/2011 6:17 AM (GMT 0)
Jeannie,

Up at 1:15 in Ohio. I cannot fall asleep and I took Ambien two hours ago. It's getting worse with me! I am frustrated.

I am re-married now 3 l/2 yrs. Somedays I wish I were alone. I feel that my hubby is sick of hearing me complain so now I'm not wanting to share everything.

Perhaps he's shocked that after all this testing something really is wrong with his "wife". I'm depressed also.

I suffer from bipolar, depression, PTSD, more anxiety now, neuropathy, herpes II. I'm 52 and there's other things, but why mention it. It makes me sick thinking about the negative and no one else wants to here it!

Take Care
Posted 1/27/2011 11:48 AM (GMT 0)
 

I had neuropathy, headaches,  achy, weak, severe  back pain, neck pain....and many other symptoms ! 

Alway worse at night....right around 7:00 pm.  Being 'still'--- like watching TV on the couch--- would ramp up the symptoms in my case.

If I didn't take Ativan I never would have fallen asleep!  Still take it even though I'm feeling better.  Just 1mg about a half hour before bedtime. It works wonders for me. 

Still have occasional elbow pain, ear ringing and bouts of vertigo....but ABX

are working so far.   

Hope you get the right treatment!  I had a bad relapse when I went off antibiotics.....so I'm back on them for another, longer round.

 

Posted 1/27/2011 6:12 PM (GMT 0)
Cat,
Hi. I have Ambien for sleep. I don't really like it. I do things and don't recall it the next day, my hubby noticed.

Ativan also is what I take, only as needed. Along with a meriad of other meds; soma,Depakote, zoloft, vicodin,. I feel like a drug head, or a LYME head! I say we all make Lyme Aid!!!!!!!!!!!! hah

I needed that! LOL
Thx.
Posted 1/28/2011 1:08 AM (GMT 0)
Please, we want to protect our LLMD's, as they are being persecuted & losing their license to practice -- so we don't actually list their names on here - it would be all too easy for someone to just go through posts & gather those names.

Instead we ask that only the first letter of their last name be used here & the state that they practice in be used (example; Dr. N in {whatever state he is in}).

In order to share more info about any one LLMD, we ask that you email each other - just to make sure our docs are there to treat us & others.

Thank you so much!!
I hope I didn't come off too strong here - I'm still not feeling up to par - that's a dim memory still!
Posted 1/28/2011 1:17 AM (GMT 0)
I am sorry. I deleted my post. You didn't come on too strong so no worries.
Posted 1/28/2011 4:14 AM (GMT 0)
I have a Lyme Knowledgeable Literate Dr. I asked about this today, she is experienced.

2003 when I first saw some pos results and nothing was done, no abx, no further testing. I now have chronic Lyme.

Donjoe, I'm assuming you meant the email for me? Anywho, I'm glad I know what's going on. A little sad though.

Support here is wonderful! I have a compassionate Dr. I enjoy her. I feel blessed!

Thx.

H H
Posted 1/28/2011 4:27 AM (GMT 0)
I think Donjoe was referring to me with the emails being we both live in PA. Unfortunatley he doesn't have his email listed so I've got to hope Donjoe sees this and emails me back.
Posted 1/28/2011 5:50 AM (GMT 0)
Hi JeannieM,
I am sorry you are having a rough time. I am here tonight, having *again* forgotten for too many days (weeks actually) how important it is to me to get on here, to feel 'normal' and understood --despite not feeling normal at all.
I've had all the symptoms you describe--except head pressure is everywhere; the comment you made: 'It's almost like my brain knows what I want to say but it gets lost before it gets to my mouth, if that makes sense.'--that strikes so much home for me, it is why I had to stop working --it is called aphasia--the center in your brain that helps translate stuff from concept to understandable language (spoken or written) is being affected. I finally figured out that is why my reports for work were gettting slower, slower, then impossible to do. I then was reminded of aphasia--expressive aphasia. Where I have the concept I wish to impart in my brain but *for the life of me* I could not get it onto paper, in to written language. But don't let it scare you--for me at least it comes and goes...which means it's not permanent. It is better now, with treatment, though I still feel awful most days.
I have Lyme and two co-infections: babesia and bartonella. My doc and I surmised currently it is the bartonella that is causing more problems. essentially they say if you have more neurological probs than muskuloskeletal overall, you may have bartonella. The signature pain=shin pain. Ouch, does it hurt!
I hope you find an answer soon. I keep consoling myself--at least I know what it is.....
Posted 1/28/2011 2:36 PM (GMT 0)
Jeannie,
Another thing you could do is to start a new thread. Put Donjoe's name in the subject line, that way he/she will be sure to see it.

I hope this helps.
Posted 1/28/2011 3:25 PM (GMT 0)
http://www.prweb.com/releases/2010/02/prweb3542194.htm


maybe this is helpful??
Posted 2/2/2011 1:59 AM (GMT 0)
JeanieM, I sent you an e-mail about the docs in PA. Did you get it?

Also sorry about posting the docs name. I will be sure to do it differently next time.
Posted 2/2/2011 12:50 PM (GMT 0)
Thank you Donjoe,
we just need to help protect our docs.
Posted 2/2/2011 2:44 PM (GMT 0)
Traveler, should I delete my post?
Posted 2/2/2011 4:03 PM (GMT 0)
Yes, I got the list, thank you very much. In the process of going through it and deciding who I want to try.
Posted 2/2/2011 5:46 PM (GMT 0)
JeannieM, My West Chester doc takes insurance.
Posted 2/2/2011 5:52 PM (GMT 0)
It was not necessary to delete your post, Donjoe, but thanks for understanding.
Posted 2/2/2011 6:29 PM (GMT 0)
Jeannie,
Thinking of ya, ya okay today?

Hi Trav! We got massive ice on sidewalks! Took dog out for his business and he slid all the way up the hill to the main road, NOT!!!!! Ha !

Husband home sick yesterday and today.

How ya feel Trav? Better? You were ill, right? Heck, I read so much mail from sites I am getting people mixed up. Love that you email me though, I appreciate what you do for all of us and I think you are special for this, God Bless ya Trav!
✚ New Topic ✚ Reply