posted
I'm new here and I really need help! I am a 42 yr. old woman who was diagnosed with lyme 13 yrs. ago. If it weren't for my PCP at the time, I probably would have gone untreated. I had developed the bulls-eye rash, full body rash and it was over the weekend.
My PCP put me on Doxy immediately. By the time I saw an infectious disease doctor I had been on doxy for sometime. My test came back negative. I was extremely sick for months. I remember being so bad that all I could do was lay in a recliner. I didn't even want to read a book because I had no strength in my arms. I developed Bells Palsy which eventually went away but the infectious disease dr was no help.
A few years later(3), I was pregnant with my son and developed viral meningitis (they hospitalized me because they thought it was bacterial because I had been on antibiotics). I also became very fatigued and sore and had to go on reduced hours during my pregnancy. At the time my PCP said that it could be my lyme being "triggered". I was never treated; I just lived thru the symptoms.
Well, I have been very ill for the past 7 months. Back in November 09, I had gotten a seasonal flu shot. The nurse gave it to me in the wrong part of my arm and I ended up developing cellulitis.
Shortly thereafter, I developed the flu. After that, I developed strep throat. (Put on Keflex)
Over the holidays, I developed an abscess on the same arm as the cellulitis. We were in FL at the time. When I got home, the sore wouldn't heal so I went to the drs. They told me it was MRSA. They put me on Bactrim. The sore wasn't getting better so a few days later they doubled the dosage. I was taking 1600 mg a day.
I ended up in the hospital with a severe allergic reaction to Bactrim. I developed an entire full-body rash, even in my pupils, it attacked my pancreas, liver, lungs and gallbladder. I ended up having my gallbladder removed. I was in the hospital for 15 days.
When I finally got home, I developed a salivary gland infection. I finally returned to my teaching position for two days after winter vacation in Feb. By the second day, however, I had to go back to the doctors because I thought I had an ingrown toenail. Turned out to be another staph aureus infection in my big toe. I was put on more antiobiotics - first clindamyicin which was resistant so they switched me to Levaquin. After finishing the Levaquin, I just couldn't shake the feelings of fatigue, stiff neck and sore muscles.
I have been to "MANY" doctors - specialists - infectious disease, rheumatologists, etc. and many blood tests. They haven't found anything. They cannot explain my flu-like symptoms. My husband was the one that finally said you know these symptoms you are experiencing are just like when you had the lyme 13 years ago.
Within the past three months, I have gotten so bad that I now can't even walk 100 ft without getting completely fatigued and shaky. I carry a grocery bag into the house and feel like I've torn every muscle in my shoulder. It's now affecting my "brain". I'm dizzy, lightheaded, can't recall words, etc. Is it possible that after everything my body has been thru that I have developed a relapse from the lyme disease?
We have come right out and asked infectious disease doctors and they've said NO it can't happen and then I explain my last pregnancy 9 yrs ago and they're all of a sudden referring me to a lyme specialist or a neurologist.
I thought it couldn't happen??? I have been referred to Dr. H in Longmeadow but she can't see me until October 20th. I've booked the appointment but she also gave me a name of Dr. M in Springfield and said she might be able to help me sooner. I see her this Friday and am praying that I get some answers.
I saw an endocrinologist this past Friday and he said my thyroid was enlarged and hard. I also had low cortisol levels. I read where lyme can affect the thyroid and adrenal glands. Is this what's happening to me????
Please someone help! I can't take this much longer. Even my therapist of 15 yrs is concerned about my PHYSICAL symptoms and yet I've seen so many doctors that want to diagnose it as fibromyalgia or that it's psychological. Well it's neither!
They also want to point that I'm overweight - hello I've been inactive for months! What would happen to you if you weren't able to walk???? I haven't increased my appetite either. Just a note . . . I've run two marathons within the past few years. I'm normally a strong, vibrant, active person who loves life. Why can't anyone help me????
Why are the doctors so resistant to say it's Lyme? If anyone's out there that can help, I'd REALLY appreciate it. Thank you! Posts: 3 | From Massachusetts | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Could you please break up your post for many of us who have neuro Lyme. It will be a lot easier to read and then we can try and help you.
Just go to the top and hit the icon with the pencil
Thank You very much.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
oh dear. we cannot read large paragraphs. They muyst be shorter. I broke it up for ya
-------------------------------------------------------------------------------- I'm new here and I really need help! I am a 42 yr. old woman who was diagnosed with lyme 13 yrs. ago. If it weren't for my PCP at the time, I probably would have gone untreated.
I had developed the bulls-eye rash, full body rash and it was over the weekend. My PCP put me on Doxy immediately. By the time I saw an infectious disease doctor I had been on doxy for sometime.
My test came back negative. I was extremely sick for months. I remember being so bad that all I could do was lay in a recliner. I didn't even want to read a book because I had no strength in my arms.
I developed Bells Palsy which eventually went away but the infectious disease dr was no help. A few years later, I was pregnant with my son and developed viral meningitis (they hospitalized me because they thought it was bacterial because I had been on antibiotics).
I also became very fatigued and sore and had to go on reduced hours during my pregnancy. At the time my PCP said that it could be my lyme being "triggered". I was never treated; I just lived thru the symptoms.
Well, I have been very ill for the past 7 months. Back in November 09, I had gotten a seasonal flu shot. The nurse gave it to me in the wrong part of my arm and I ended up developing cellulitis. Shortly thereafter, I developed the flu.
After that, I developed strep throat. Over the holidays, I developed an abscess on the same arm as the cellulitis. We were in FL at the time. When I got home, the sore wouldn't heal so I went to the drs.
They told me it was MRSA. They put me on Bactrim. The sore wasn't getting better so a few days later they doubled the dosage. I was taking 1600 mg a day.
I ended up in the hospital with a severe allergic reaction to Bactrim. I developed an entire full-body rash, even in my pupils, it attacked my pancreas, liver, lungs and gallbladder. I ended up having my gallbladder removed.
I was in the hospital for 15 days. When I finally got home, I developed a salivary gland infection. I finally returned to my teaching position for two days after winter vacation in Feb.
By the second day, however, I had to go back to the doctors because I thought I had an ingrown toenail. Turned out to be another staph aureus infection in my big toe. I was put on more antiobiotics - first clindamyicin which was resistant so they switched me to Levaquin.
After finishing the Levaquin, I just couldn't shake the feelings of fatigue, stiff neck and sore muscles. I have been to "MANY" doctors - specialists - infectious disease, rheumatologists, etc. and many blood tests. They haven't found anything.
They cannot explain my flu-like symptoms. My husband was the one that finally said you know these symptoms you are experiencing are just like when you had the lyme 13 years ago. Within the past three months, I have gotten so bad that I now can't even walk 100 ft without getting completely fatigued and shaky.
I carry a grocery bag into the house and feel like I've torn every muscle in my shoulder. It's now affecting my "brain". I'm dizzy, lightheaded, can't recall words, etc. Is it possible that after everything my body has been thru that I have developed a relapse from the lyme disease?
We have come right out and asked infectious disease doctors and they've said NO it can't happen and then I explain my last pregnancy 9 yrs ago and they're all of a sudden referring me to a lyme specialist or a neurologist. I thought it couldn't happen???
I have been referred to Dr. H in Longmeadow but she can't see me until October 20th. I've booked the appointment but she also gave me a name of Dr. M in Springfield and said she might be able to help me sooner.
I see her this Friday and am praying that I get some answers. I saw an endocrinologist this past Friday and he said my thyroid was enlarged and hard.
I also had low cortisol levels. I read where lyme can affect the thyroid and adrenal glands. Is this what's happening to me???? Please someone help! I can't take this much longer.
Even my therapist of 15 yrs is concerned about my PHYSICAL symptoms and yet I've seen so many doctors that want to diagnose it as fibromyalgia or that it's psychological.
Well it's neither! They also want to point that I'm overweight - hello I've been inactive for months! What would happen to you if you weren't able to walk????
I haven't increased my appetite either. Just a note . . . I've run two marathons within the past few years. I'm normally a strong, vibrant, active person who loves life.
Why can't anyone help me???? Why are the doctors so resistant to say it's Lyme? If anyone's out there that can help, I'd REALLY appreciate it. Thank you!
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Like I said, I'm new! Sorry! It's ironic because I was even having a hard time reading it. My eyes aren't the same.
Posts: 3 | From Massachusetts | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Frist print out green booklrt from http://lympa.org great primer
yes you can relapse or even get reinfected...you do not build immunity
There are other llmds. post in "seeking a doctor" so someone can send you a private message with a list.
contact a local support group even froim surrounding states
don't freak out about "not be able to walk" There are worse things...Cancer, paralysis, amputation, death of your child, death of your spouse, death of a friend or family member.
There things now in perspective, so stop stressing
You're gonna get =proper help & proper treatment.
You'll learn so much you'll be teaching your therapist so she won't miss it in her other patients & be able to help them.
Blessings to you.
BTW I'll PM (send) you my CT list of llmds
Posts: 2675 | From ct, usa | Registered: Jan 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sorry you are going through so much. In order to get dx and treated properly you have to go to a LLMD. Not sure if the docs you were referred to are Lyme literate because usually mainstream docs don't know real LLMDs.
Go to the seeking a doctor section so you can get referred to an LLMD that's on the list. There are very supportive and knowledgeable people here to help you. Hope this is a start.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Sorry to hear what you have gone through. It definitely sounds like Lyme. It can be very hard to get rid of completely, particularly if the first treatment wasn't long enough. Pregnancy triggered my Lyme symptoms, and even more after delivery. If you still had symmptoms after antibiotics, then you did not get rid of it. You need to treat until you are symptom free, and then for 3 months after that.
I would get yourself to a lyme literate medical doctor (LLMD) ASAP. We travel to a wonderful doc in Hyde Park, NY. If you want his name, just send me a private message.
I also might add that if you did have lyme prior to your pregnancy, you could have passed it on to your child. I don't want to worry you, but if you are seeing any of the following: behavior problems, hyperactivity, attention issues, headaches, random pains, frequent fevers, night sweats, insonmia, OCD, neuro problems or fatigue...then I would get your child checked as well.
Don't waste time with infectious disease doctors...they don't believe in chronic lyme. I would go to an LLMD who is a member of ILADS.
You have found one of the best resources in this site and can learn a ton. Just keep reading as much as possible. It is so important to educate yourself with this disease. You can get back to running marathons, but you have to finish the Lyme marathon first!
Best of luck to you,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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It's ironic because I was even having a hard time reading it. My eyes aren't the same.
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