Stopped doing well... - Lyme Disease Message Board

ncgirl88 · 08-23-2004, 08:02 PM

Well,

I woke up feeling great, fixed myself pancakes, took my doxy with breakfast - no dairy - no supplements...then we went out at 1 pm for lunch and I started having the feeling that someone had put a rubber band around my right bicep. It was unnerving and my Mom took me to the er. There more blood was drawn, stats taken and that was it. They said I have Parathesias...which is disconcerting in that it can be related to MS and all of the other neuroligically degenerative diseases. I am exhausted, mentally beat up, and just want to roll up in a ball and cry. My muscles are twitching. One thing I have had for a few weeks while all of this has been going on is I will have an itch and go to scratch it but in the wrong place...have any of you experienced this?

I know this could be dibosis (sp?) or whatever it is called, or in lyme terms hexing...but god I feel like my whole nervous system is shutting down. My stomach was great this morning - no acid reflux or pain then Whamo! I am taking the doxy with meals.

At this point I am just so scared. I know my nervous system has always been a bit wacked out with migraine w/ aura. I don't know.

I have always suspected some kind of bacterial infection though in the gut. They only tested me for two.

My legs are bruising and I am getting red spots around the bruises that look like chiggers....weird.

Oh there finally were flags on my blood work but the claim it is not a big deal - Seg, Automated 9.4 points high on their scale, Lymph automated 5% points low, and EOS - read .4 while their scale said it should be between 1-3%. Can anyone translate? I know these are blood cells that deal with immunity.

So I am stuck at my Mom's ready to go home. My husband isn't flying in until Saturday...
Sorry for the long post.

-ncgirl88

Komondor · 08-23-2004, 11:17 PM

Hi ncgirl88,
I cannot translate your blood work but I can tell you I have had the same symptoms and it is very scarey. Have you been tested for co-infections like Babesia or other tick borne diseases? Doxy will not do much if you have certain co-infections.

Try not to worry about MS. I seriously doubt you have it. That was my biggest fear before I was diagnosed. Well that and the fear it was some horrible cancer they were missing and I would die before they figured it out.

My moms friends daughter was diagnosed with MS a few months ago and Mayo clinic backed it up. Nope she has lyme disease and is responding very well to antiobotics.

I also know a lady in NJ that was diagnosed with MS back in 99. Nope she has Lyme disease and Bartonella. She too is doing very well with treatment.

Are you seeing a Lyme Literate Medical Doctor (LLMD)? What are you doing eating pancakes? Many doctors advise not to eat sugar... Has your doctor mentioned this to you?

I am sorry you are feeling so badly and hope it gets better very soon.

ncgirl88 · 08-24-2004, 07:36 AM

Hi Komodor,

Thanks for the info.

I feel so much better in the morning and then by 12 blah.
I am trying to eat whatever I can since my appetite is bad. I had really good healthy multigrain mix with a little bit of syrup. I am just so sick of eggs even though I love them.

I am going to see the Jemsek clinic in the middle of September - I wished it was earlier so I could get tested for these coinfections. I have seen an ob/gyn who said lower left quadrant pain? everything looks good from this angle don't worry about it...then I saw a gp who gave me nexium and ordered some labwork for parasites and a couple bacteria and then never called me back, handed me to his nurse practitioner who gave me nexium and then got mad that I didn't take it even though I didn't have reflux at the time...then on to a gastro who did a colonoscopy and barium ct scan that landed me in the er (a six hour visit) with rectal bleeding because I was not informed after the ct scan that I had a internal hemmroid which I never knew I had - didn't have until all this...

Anyway, I have been to so many doctors and they are CLUELESS about this. It doesn't help that I just moved and am not seeing a doctor who has known me for awhile and knows it is not normal for me to lose 15 lbs. in three weeks. I got the doxy from a vet I will not mention and got the referral to the Jemsek clinic from another vet I know in NC. I am just going to start seeing a vet instead of all these mds. I emailed the bloodwork from yesterday to my vet and he said that it shows an opportunistic viral infection is taking hold. My insurance company has paid out close to 10,000 dollars for all these tests and here I sit miserable and unable to drive home on my own.

I am MAD!!!! I have missed two weddings this summer due to this.

Anyway thanks for your reply. I will cut out the sugar. Any other dietary restrictions and suggestions would be most welcome - I will try searching the board and see if there are already some there.

All My Best,
Gretchen

ncgirl88 · 08-24-2004, 08:50 AM

Well good news....a infectious disease doctor can see me on a walk in basis tomorrow....God how good it was to hear a friendly voice on the phone say "we absolutely can see you tomorrow" When I heard the word absolutely I figured she was going to say "absolutely not"...He comes recommended from a friend of my Mom's who had been diagnosed with MS and sick for 5+ years and this doctor fixed her all up and found the Lymes...so thank god. I will let you all know how it goes. I asked the assistant if we would be testing for coinfections too and she said yes.

Thanks for all your support here on the list. It was invaluable to me.

-ncgirl88

Komondor · 08-24-2004, 10:55 AM

Hi Gretchen,
I also had the female stuff. When I first got real sick I had an ovarian cyst rupture and the pain never stopped. They kept telling me the leg pain and nausea was from the cyst but this went on for a year... The pain in my ovarian area was bad too and I had weird gurgling noises in the area all the time. I had alot of breast pain also.

I can relate to the driving problems. My mind and body was not in any shape to drive. I had a hard time with traffic lights as it did not register fast enough when the light changed to red. Plus my legs were not working right and it was even hard to turn the steering wheel because my arms were so weak.

I am so glad you know vets that know about lyme... Many vets are not up to par so you are fortunate to know a couple. All the years I was sick with lyme I was fortunate that my mom always had amoxy on hand for her dogs/farm animal and I ate them like candy. I knew they helped me but did not know why.

Funny you should mention the rectal bleeding. I have had it for years and it went away with treatment. Is your twitching constant? Mine had gotten to the point that it was like fireworks going off in my body. It did not hurt but was very aggrivating. I only have an occasional twitch now. Magnesium helps with the twitching as well as treatment.

Lots of water helps with nausea somewhat. As far as diet many doctors say no sugar, no caffine, no alcohol, no flour, white rice. Basically if it is white it ain't right. I have talked to a couple of people who have not been told my their LLMD to avoid sugars... but my doctor feels otherwise and if I cheat, I pay... Also, be careful with certain fruits like peaches, plums, melons. Berries are good and so are apples. Basically high fiber fruits are ok.

Hope your appointment with the ID doc goes well. Just make sure you read all you can, get proper testing from a proper lab and are treated long term. Are you still keeping the appointment with Dr. J? I hear he is very good.

Oh, I meant to ask what part of Maryland are you stranded in? I read your other post after I answered this one... I live in Southern Maryland...
Stacey