This forum is quite scary reading and I really feel for people who have had undiagnosed chronic Lyme Disease for many years.
I had a tick bite at the end of June this year in France and it looks like I have caught Lyme Disease although the blood tests keep coming back equivocal.
I have had over 4 weeks antibiotics and the consultant tells me he is pretty sure the bacteria is dead now. However I continue to suffer with aches and a poisoned feeling, as well as being very tired. He said that this is normal but as I don't know anyone who has had Lyme Disease it would be really helpful to hear from people who have got better. Especially if you have also struggled with feeling so unwell!
Many thanks
Sarah
Posts: 1 | From England | Registered: Nov 2006
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have you been to eurolyme? It is an yahoo-forum worth visiting, with lots of people from europe, especially england.
This forum scared me real good the first time visiting. It was a great shock to me how ill one can get from Lyme disease. I was real worried about how ill I would get. Now I am more relaxed, having understood how "my" Lyme is acting.
I think we all get it in different severities. Also, the european strains of Borrelia seems to be different than the US-strains. But then, there are coinfections etc.
Anyway, you are definetively not the only one in England with Lyme! 4 weeks of abx is usually just the beginning: how much and what kind of abx did you get? how long after the bite were you treated?
There are some good Lyme Literate doctors in England worth seeing if your consultant won't give you any more help.
Hope some of this helps?
hugs - sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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Although Lyme and other associated tick borne diseases are sometimes difficult to treat many people have successfully recovered from these horrible diseases.
posted
Hi there! I was misdiagnosed for MANY years and am now doing great! You can get there too. Your biggest hurdle will be to find a dr who believes in treatment past 4 wks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Welcome Sarah! Glad you found another European to visit with so promptly and she told you about Eurolyme as well.
I'll send you some newbie links/advise.
I've had for 36+ years, 34 years MISDIAGNOSED, and 2 years into lyme treatment.
You need LONGER TIME on antibiotics; you want to kill ALL the spirochetes in your body so you don't end up like us! Bettyg
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi Sarah-
I think I got bit in 1999 or 2000. It took a long time, three years of too low antibiotic for not enough time to start with.
After three years of good treatment, I believe I'm well. You won't feel tired or poisoned when you are healed.
This forum is quite scary reading and I really feel for people who have had undiagnosed chronic Lyme Disease for many years.
I had a tick bite at the end of June this year in France and it looks like I have caught Lyme Disease although the blood tests keep coming back equivocal.
I have had over 4 weeks antibiotics and the consultant tells me he is pretty sure the bacteria is dead now. However I continue to suffer with aches and a poisoned feeling, as well as being very tired. He said that this is normal but as I don't know anyone who has had Lyme Disease it would be really helpful to hear from people who have got better. Especially if you have also struggled with feeling so unwell!
Many thanks
Sarah
Hi Sarah, I am new to this site and hope that I am using this site correctly. I am not very good on the computer. I was diagnosed with fibromyaglia 13 years ago and struggled with that diagnosis until I finally accepted it. I would go thru periods of muscle aches, joint pain, numbness, fatigue, etc. 3 years ago I went to my primary care doc with extreme fatigue, had mono. Since then the epstein bar virus becomes active mostley in the fall and winter. My problem is what do I really have? Lyme disease (which I am being treated for now), fybromyalgia, chronic fatique, epstein bar virus. I am so frustrated and depressed. I don't know where to turn. I have three children to take care of. 14,9, and 6. My middle boy has down syndrome. Let's just say, I need to feel better to be a good mom. My husband is supportive, but I don't think anyone can understand until they feel the way all of us do with Lyme or whatever we have. Does anyone wish to share their story with me? Thanks of much. karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
My children and I were diagnosed with lyme 2 yrs ago, after being misdiagnosed for 4yrs prior.
We are MUCH better, and see that our initial slow recovery has picked up over the weeks and months.
You can get better!
Many folks who post here quit posting when they get better because they return to their previous activities and no longer are in need of so much support.
So you have to keep in mind that support chats are a bit scewed toward the more ill folks.
I love this site, not knocking it.
The beginning of the lyme recovery journey is a real confusing hard time. Make sure you have a doctor who knows how to treat lyme and you will be ok.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
My children and I were diagnosed with lyme 2 yrs ago, after being misdiagnosed for 4yrs prior.
We are MUCH better, and see that our initial slow recovery has picked up over the weeks and months.
You can get better!
Many folks who post here quit posting when they get better because they return to their previous activities and no longer are in need of so much support.
So you have to keep in mind that support chats are a bit scewed toward the more ill folks.
I love this site, not knocking it.
The beginning of the lyme recovery journey is a real confusing hard time. Make sure you have a doctor who knows how to treat lyme and you will be ok.
posted
I am recovering from my second bout of Lyme (the first was in 2000). We are 3 Lyme patients out of four people in my family. I never had it as bad as most people but my second attack (starting Nov. '05) was worse than the first and I didn't get a diagnosis until going through my primary, an orthopedist, a neurologist and finally a LLMD, plus several MRI's and a spect scan. Only the LLMD (actually, two) had any idea it was Lyme again. I never did test very positive and the symptoms were all over the place, even for Lyme. Good thing my wife is very Lyme literate or I'd be in a wheel chair by now. Main symptoms: strange headaches (more like a pressure in the head), severe neck and shoulder pain from a pinched cervical nerve (orthopedist said I have a severely arthritic neck in 3 places) , tiredness, chest pain, hip soreness, bronchitis - symptoms did not start at the same time but were progressive. As I was previously very healthy and never on any meds (except for the 1st bout of Lyme), this was a strange set of symptoms and different from the first time.
ABX (Ceftin) for 3+ months, Cat's Claw, Olive Leaf, and Zeolite (for de-tox) plus a handful of vitamin and mineral supplements, and trying to get more sleep than usual. The symptoms are now almost completely gone and I feel greatly improved. No significant neck, shoulder or hip pain. No bronchitis, no chest pain. Better energy.
I know its still there, lurking, but I've got it on the run for now. Maybe it'll keep down for a few years or until some new meds are developed.
I wish the rest in my family were doing as well but we're working on it.
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