Update on Lyme... Feeling worse

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psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 7/10/2010 4:05 PM (GMT -6)   
Hi everyone,
I was on here and have not been in a while. My Lyme has gotten worse. I now have been having tons of muscle and bone pain, tons of fatigue, and for the past month tons of low to high grade fevers between 99.4 to 101.2. The fevers are usually at night or after dinner. The fevers are accompanied by heavy feelings in my eyes, headaches, severe fatigue, and a lot of time diarrhea(though I have other G.I. issues that contribute to this). I was supposed to get hooked up with IV medications, but the Lyme clinic here at Rhode Island Hospital back in April only made recommendations that for it, and it was up to my PCP to set it up. Yet, when the PCP tried her hardest(even til this day), she never got a response back and they have been playing phone tag like crazy. The saddest part is that my summer is not going as planned. I wanted to do so much and have even planned a trip to Martha's Vineyard for the end of this month, but I fear that due to my constant weakness, I may not get anything that I wanted out of it. I wanted to go to the beach everyday and do fun activities, but due to this I only been to the beach a few times, which really causes me to become severely fatigued the next day. I have been literally living on excitement and motivation. This is how I was able to go to the beach, move into my new apartment, and will use it to go to the vineyard. Plus, having Asperger's helps with this "motivation": sad to say that Asperger's is helping me be able to live life and without it I would be lying in a bed all day. Unfortunately, I find myself lying in a bed or in my house constantly napping all day even more. I also have been struggling with constant neck pain, to a point where today I was in the E.R. because it was that bad. The E.R. doctor, who was so nice, said it was from the Lyme. But the hospital that I went to was not the one that has the Lyme clinic : cry, which sucks. Now, I must wait again for ever, but I am going back to the doctor and calling her this week. I just hope it gets straightened out soon. Well, I hope everyone is enjoying their summer.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/10/2010 4:18 PM (GMT -6)   
I understand about things not going as planned. Seems to be the story of my life for the past year. Things will work out.

Hopefully you will get your antibiotics soon:)

Regards,

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 7/10/2010 4:54 PM (GMT -6)   
Thanks 3 whiteroses. I hope so. It seems that doctors and everyone thinks that Lyme is something new, but it has been around for so many years. I live in Rhode Island and it was considered a major health crisis since the early 1990's, and yet, there still is not enough information and/or help. Yet, the state has a site dedicated to Lyme disease. Good luck with everything. I hope everything works out for you too.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 7/11/2010 8:13 PM (GMT -6)   
pysygirl6...hi am from ri also and if you looking for a different dr i can let you know who i go to...he has a walk in clinic and he is a lym litereate dr and he also has had lyme for 10 years so he has expirenced it ans knows how awful it is to fight this diseease...he is hard to get new patience but its worth a shot to call him up..if ytour interested email me...jennyie48@aol.com......good luck with you and i hope you feel better.....i had server kneck pain as well and it was from my lyme. the dr put me on new meds and i feel so much better.my lyme attacks my spine and knees and makes me very fatigue all the time....

goos luck
"I will not let Lyme controll my life i will controll my own life"
lyme since June 08
meds-zithromax 500mg one a day/ 1  month // Plaquenil 200mg twice a day/ 1 month
starting 10/3 doxy100mg // omnicef 300mg
 
ADHD/anxiety/depression// celexa 20mg

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