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Monthly Lymes Cycle
Hi I was diagnosed with co infection of lymes (Erichilosis), and possibly lymes but in not enough titers in the UK to be taken seriously.
Anyway I had to have all my teeth removed because of devistating attack on my gums. I did this under sedation and afterwards had to have a heavy course of antibiotics tetrycycline. Since then about a year now I have had memory lapses, and every month i get lesions around the back near to the ribs which start with pain, and then itch, and also alongside I get burning urine really bad, and my leg symtpoms worsen and so does the fatigue. I was also diagnosed with MS.
I have been ill for 7 years now.
I was just wondering if this cycle is normal in Lymes or is it something else i should worry about.
Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless.
So that made me feel really depressed.
I have been having councelling now and feel a lot better in my head and can finally cope better with what is going on in my life.
anyway just wondered if this is normal for Lymes. Thanks guys. Maria who has come back from the dead so to speak.
Anyway I had to have all my teeth removed because of devistating attack on my gums. I did this under sedation and afterwards had to have a heavy course of antibiotics tetrycycline. Since then about a year now I have had memory lapses, and every month i get lesions around the back near to the ribs which start with pain, and then itch, and also alongside I get burning urine really bad, and my leg symtpoms worsen and so does the fatigue. I was also diagnosed with MS.
I have been ill for 7 years now.
I was just wondering if this cycle is normal in Lymes or is it something else i should worry about.
Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless.
So that made me feel really depressed.
I have been having councelling now and feel a lot better in my head and can finally cope better with what is going on in my life.
anyway just wondered if this is normal for Lymes. Thanks guys. Maria who has come back from the dead so to speak.
Hi hun, i am only back from the dead because i am having councelling.
I cant get any treatment in the NHS for Lymes, as the results came from Igenex.
I have had a new thing now with the lesions, kind of worried, seeing a new doctor on Thursday hopefull someone might help me. xx
I cant get any treatment in the NHS for Lymes, as the results came from Igenex.
I have had a new thing now with the lesions, kind of worried, seeing a new doctor on Thursday hopefull someone might help me. xx
Hi, Maria! So good to see you posting again! I've thought about you at times and wondered how you're doing. Have you been on antibiotics for the past year? You mention being back from the dead... are you feeling better overall? Given how sick you were with multiple infections, it could take you years to feel good again. Don't give up and don't accept that you have to stay miserable.
I'm still on treatment, two years in. I probably still have a year (or more) to go. It's been a slow process with a long delay in diagnosing Babesia and then a bad Bartonella relapse. But I am better and still optimistic.
The horrible IDSA/CDC (and NHS) position that Lyme is easy to treat and only a few people get "mild" ongoing symptoms called "Post Lyme Disease Treatment Syndrome" has resulted in a Wild West environment of varying opinions about Lyme and treatment for people with bad, late stage infections. I am appalled at the misinformation out there, which is just opinion and speculation, but is presented as if it were fact.
On your question about Lyme cycling... yes it does cycle about every 4 weeks. Different people experience different symptoms. For me, it's rib pain and shortness of breath and fatigue. Burning urine doesn't sound like a Lyme symptom, though. That sounds like a UTI. I encourage you to see a doc during that symptom to get a urinalysis. I got a surprising UTI last spring, so they can come out of nowhere. (Drink lots of water to help prevent them.)
I'm still on treatment, two years in. I probably still have a year (or more) to go. It's been a slow process with a long delay in diagnosing Babesia and then a bad Bartonella relapse. But I am better and still optimistic.
The horrible IDSA/CDC (and NHS) position that Lyme is easy to treat and only a few people get "mild" ongoing symptoms called "Post Lyme Disease Treatment Syndrome" has resulted in a Wild West environment of varying opinions about Lyme and treatment for people with bad, late stage infections. I am appalled at the misinformation out there, which is just opinion and speculation, but is presented as if it were fact.
On your question about Lyme cycling... yes it does cycle about every 4 weeks. Different people experience different symptoms. For me, it's rib pain and shortness of breath and fatigue. Burning urine doesn't sound like a Lyme symptom, though. That sounds like a UTI. I encourage you to see a doc during that symptom to get a urinalysis. I got a surprising UTI last spring, so they can come out of nowhere. (Drink lots of water to help prevent them.)
(hit the Enter key too soon)
.... that might be better positioned to find a doctor in the UK for you.
Keep us posted and best of luck.
.... that might be better positioned to find a doctor in the UK for you.
Keep us posted and best of luck.
Don't give up hope for a remission. Never.
The doctor you talked about:
"Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless."
There may be no 'cure' but there certainly are long term remissions that feel just as good as a cure. And they may stay that way although a few do relapse; then a short course of antibiotics usually gets them back to remission again.
It isn't hopeless. Do you have access to a GOOD Lyme doctor in the UK? Have you posted at a Yahoo group (with the name 'EuroLyme' in it's title) that might be better
The doctor you talked about:
"Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless."
There may be no 'cure' but there certainly are long term remissions that feel just as good as a cure. And they may stay that way although a few do relapse; then a short course of antibiotics usually gets them back to remission again.
It isn't hopeless. Do you have access to a GOOD Lyme doctor in the UK? Have you posted at a Yahoo group (with the name 'EuroLyme' in it's title) that might be better
Don't give up hope for a remission. Never.
The doctor you talked about:
"Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless."
There may be no 'cure' but there certainly are long term remissions that feel just as good as a cure.
The doctor you talked about:
"Also on our T.V. in the UK an expert on Lymes from Porton Down was saying that once you have lymes and it is in your there is no cure, and he was complaining about all the bogus treatments in the states and said they were useless."
There may be no 'cure' but there certainly are long term remissions that feel just as good as a cure.
I am sorry for what you are going through, it sounds like Bartonella because that causes lesions all over. Did they test for that! It can also cause nerve pain. If you have Bartonella, it would need different antibiotics.
BY THE WAY, there are many cures out there for Lyme. I know someone who went to Burascano when he was still practicing and she got well for 12 years. She was reinfected and is sick again but knows there is hope out there.
BY THE WAY, there are many cures out there for Lyme. I know someone who went to Burascano when he was still practicing and she got well for 12 years. She was reinfected and is sick again but knows there is hope out there.
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