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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 66. This is the beginning of the thread.
Posted by Jeroen on March 12, 2018, at 8:25:44
Im getting myself retested for lyme disease tomorrow.
Since first test was positive, and i respond to minocycline, cipro only because of that im not just asking blood tests for my pleasure!
Posted by Phillipa on March 12, 2018, at 9:41:10
In reply to Im getting myself retested for lyme disease, posted by Jeroen on March 12, 2018, at 8:25:44
Jereoen did your doctor agree to test you again? Phillipa?
Posted by bleauberry on March 12, 2018, at 16:04:29
In reply to Im getting myself retested for lyme disease, posted by Jeroen on March 12, 2018, at 8:25:44
If you already had a positive test then you don't need another one. You already know you are sick. Lyme doesn't just decide to go away. You still have it.
Lab tests are the worst. They are wrong 50% of the time. You got lucky. That happens. You got a positive. That's actually awesome! Because that tells you that you are an infection patient NOT a psychiatric patient.
You actually already did the best testing there is and you did it all by yourself. You started Minocycline. You felt great pretty fast. And then you crashed really hard. THAT is as solid a diagnosis you can get. That is EXACTLY how the doctors who are experts do it. Some of them don't even bother with the testing. Instead they give you a week or two of antibiotics to "see what happens" - because if you have a tick born disease, you will experience the same pattern you described - great really fast, to horrible really fast.
I explained this in another post. It's called a Herxheimer reaction. It is diagnostic and super accurate.
> Im getting myself retested for lyme disease tomorrow.
>
> Since first test was positive, and i respond to minocycline, cipro only because of that im not just asking blood tests for my pleasure!
Posted by Jeroen on March 12, 2018, at 22:30:09
In reply to Re: Im getting myself retested for lyme disease, posted by bleauberry on March 12, 2018, at 16:04:29
Yes, you're right, i herxed pretty badly but then got cured in 3 days
but the die off was soo intense i should have been in a isolation room (not to harm people but to unable to function)
Will doxycycline help me i never tried it, i am resistant to minocycline after trying it for 4 times but it works after 3 days yeah!!!
Posted by Jeroen on March 13, 2018, at 8:11:06
In reply to bleauberry, posted by Jeroen on March 12, 2018, at 22:30:09
Re: bleauberry - had my blood drawn today
Posted by ed_uk2010 on March 17, 2018, at 14:26:17
In reply to Re: bleauberry - had my blood drawn today, posted by Jeroen on March 13, 2018, at 8:11:06
> Re: bleauberry - had my blood drawn today
Hi J,
When do you get your results?
Posted by Jeroen on March 17, 2018, at 15:07:07
In reply to Re: bleauberry - had my blood drawn today » Jeroen, posted by ed_uk2010 on March 17, 2018, at 14:26:17
Propably next week i hope, i had it done this tuesday morning
Posted by ed_uk2010 on March 18, 2018, at 6:26:18
In reply to Re: To Ed_Uk, posted by Jeroen on March 17, 2018, at 15:07:07
>Propably next week i hope, i had it done this tuesday morning
That's not long to wait then. How common is Lyme disease in your country? I only ever knew one person who had it here, but they got it abroad.
Posted by Jeroen on March 18, 2018, at 7:20:27
In reply to Re: To Ed_Uk » Jeroen, posted by ed_uk2010 on March 18, 2018, at 6:26:18
Hey Ed, im not exactly sure my little newphew got it on his eye a red spot, i had red spots on my head while i was sick and also i played lot in woods
if its positive what are my treatment options, any natural treatment?
if my test is positive i really will be shocked
Posted by ed_uk2010 on March 18, 2018, at 8:52:02
In reply to Re: To Ed_Uk, posted by Jeroen on March 18, 2018, at 7:20:27
Hi,
>i had red spots on my head while i was sick and also i played lot in woods
It is really difficult to say what this could have been now - we would need a photo! Lyme disease is considerably less common in Europe than in the US, so most red spots after playing in the woods would be due to insect bites.
>if its positive....
First, if it's negative, it means that your symptoms are extremely unlikely to be related to Lyme disease. This is because your possible exposure to Lyme disease was a long time ago, so you would have developed antibodies by now.
If it's positive, things are more complicated. In most cases, a positive test means that you have been exposed to the Lyme bacteria at some point in the past. Unless you have typical physical symptoms of Lyme disease, a positive test does not prove that you actually have Lyme disease at the moment.
>what are my treatment options....
I think you would need to see a doctor with more knowledge of Lyme disease first, because a positive test doesn't prove that you have Lyme disease now. It could have been a previous exposure. I think this is particularly relevant because you have taken antibiotics in the past (since the possible exposure).
The doctor would need to do a physical examination and possibly some more tests. Lyme disease affecting the brain can be diagnosed by a lumbar puncture. You'd only have a lumbar puncture if a specialist thought it was needed, however. The lumbar puncture tests for antibodies to Borrelia, and for white blood cells, amongst other things.
If you actually do have Lyme disease affecting the nervous system, this could be treated with doxycycline, which is taken by mouth for several weeks. Intravenous antibiotics are used for severe nervous system infection, but as far as I can tell you don't have signs of that (meningitis etc). European studies show than less severe forms of nervous system Lyme disease can be cured with doxycycline. Doxycycline should be taken with food. The dose used for Lyme is quite high and the course is long. Taking it without food can cause nausea.
Posted by Jeroen on March 18, 2018, at 9:05:24
In reply to Re: To Ed_Uk » Jeroen, posted by ed_uk2010 on March 18, 2018, at 8:52:02
Hey Ed, i am almost homebound, my daily functioning is not normal, the anti biotic minocycline 50 mg had a strong restoration effect on me i only took 4 doses and the effects lasted for several weeks with no even taking it
but minocycline was too strong and i am resistant to this anti biotic now, will i be resistant to doxycycline at the start if the doctor decides to prescribe it, in case my second test is positive.
I might get a herx heimer reaction like hallucinations, extreme paranoia, pannick attacks, i had from several exposures to minocycline, the first time i had only severe depression but after 3 days i was cured from all psychiatric illness and felt normal again...
Posted by Jeroen on March 18, 2018, at 9:13:38
In reply to Re: To Ed_Uk - I see, posted by Jeroen on March 18, 2018, at 9:05:24
even Clozapine didnt treat my psychosis it made it 10x worse, and i slept for 6 months :(
I tried over the past 10+ years,Seroquel (worked for 2 months then i relapsed you remember this from the year 2004 right?)
Clozapine (nope)
Zyprexa (nope)
Geodon (nope and TD)
Abilify (currently taking depot but it doesnt help good causes problems but treats psychosis)
Solian (nope)
Sulpiride (nope)
Risperidone (nope)
Invega (nope)the nopes made everything worse and never worked.
minocycline 50 mg 3 days exposure twice daily (cured)
cipro ear drops (psychosis gone for 2+ weeks only took it 3 days too)
but that cipro ear drops incident are all anti biotics
Posted by ed_uk2010 on March 18, 2018, at 10:58:49
In reply to Re: To Ed_Uk - I see, posted by Jeroen on March 18, 2018, at 9:05:24
Hi J,
>if the doctor decides to prescribe it, in case my second test is positive.
If your test was positive, I think they would probably still do more investigations before prescribing antibiotics. If you had typical physical symptoms of Lyme disease, they would start antibiotics straight away, but you don't. As a result, you might be referred to a specialist if you have a repeat positive test.
>i am resistant to this anti biotic now, will i be resistant to doxycycline at the start
With an infection, it's not about you being resistant, it's about the specific bacteria you want to kill... and whether or not they are resistant. It's not like a psychiatric med where you might say *you* were resistant to the drug. The antibiotic isn't really for you, it's for the bacteria! If that makes sense :)
Borrelia are not normally resistant to doxycycline, but a long course can sometimes be needed. I don't think you should worry about resistance.
>I might get a Herxheimer reaction like hallucinations, extreme paranoia...
Minocycline sometimes causes a strange dizzy feeling which can make people panic. Doxycycline does not cause dizziness. Most people can take doxycycline without a problem so long as they take it with meals.
A Herxheimer reaction is caused by endotoxins being released into the blood when certain types of bacteria are killed. Not everyone gets one. The symptoms are:
Sudden fever
Chills with shacking
Strong flu-like symptoms
Flushing
Muscle painAlthough Herxheimer reactions can cause anxiety, there would be physical symptoms as well.
........
If you do get doxycycline, the main side effects of are:
Feeling sick. To prevent this, take it with a meal.
Sensitivity to getting sunburn - avoid bright sunlight and sunbeds.
Posted by ed_uk2010 on March 18, 2018, at 11:04:22
In reply to Re: To Ed_Uk - tried every atypical anti psychotic, posted by Jeroen on March 18, 2018, at 9:13:38
>even Clozapine didnt treat my psychosis
So, at the moment you're on Abilify.
Psychosis generally means that you're having hallucinations such as hearing voices, delusions and often severe disorganisation of thinking.
Would you (or your doctor) say that you still have psychotic symptoms at the moment?
From what you said, it sounds like you're having anxiety, depression and some paranoid thoughts right now. What do you think? Perhaps Abilify is treating the psychosis part but you still have other symptoms going on.
Posted by Jeroen on March 18, 2018, at 12:04:56
In reply to Re: To Ed_Uk - tried every atypical anti psychotic » Jeroen, posted by ed_uk2010 on March 18, 2018, at 11:04:22
im in bad shape mental and trouble walking dizzyness negative symptoms, depression, but no hallucinations
all these symptoms are getting worse i dont know what to do except to wait for blood results
Posted by ed_uk2010 on March 18, 2018, at 14:51:01
In reply to Re: To Ed_Uk - tried every atypical anti psychotic, posted by Jeroen on March 18, 2018, at 12:04:56
Depression and negative symptoms I knew about.... but what is this dizziness and trouble walking?
Tell me about it. When it started and what it is like.
Posted by Jeroen on March 18, 2018, at 15:48:34
In reply to Re: To Ed_Uk - tried every atypical anti psychotic » Jeroen, posted by ed_uk2010 on March 18, 2018, at 14:51:01
since i started taking nobiten, a beta blocker for sinus tachyardia
Posted by ed_uk2010 on March 18, 2018, at 16:04:30
In reply to Re: To Ed_Uk - tried every atypical anti psychotic, posted by Jeroen on March 18, 2018, at 15:48:34
>since i started taking nobiten, a beta blocker for sinus tachycardia
Oh I see. That should be easy to solve then! As well as being a beta blocker, nebivolol (Nobiten) dilates blood vessels. This can cause dizziness which makes it more difficult to walk.
You could ask your doctor to stop nebivolol and switch to atenolol. Atenolol does not normally cause dizziness. The usual dose starting dose for sinus tachycardia is 25mg in the morning. This can be increased to 50mg if necessary.
Atenolol is an older beta blocker but it's a good one for sinus tachycardia because the side effects are usually mild.
If atenolol doesn't suit you either, there are other options, so don't worry.
Posted by Jeroen on March 18, 2018, at 17:05:57
In reply to Re: To Ed_Uk - tried every atypical anti psychotic » Jeroen, posted by ed_uk2010 on March 18, 2018, at 16:04:30
how to switch beta blocker? do i have to take 2 at the same time because i tried to cut down on this dangerous med once 1/4 a pill and 2 days later i almost got a heart attack
Posted by ed_uk2010 on March 18, 2018, at 17:07:53
In reply to Re: To Ed_Uk - how to switch beta blocker?, posted by Jeroen on March 18, 2018, at 17:05:57
> how to switch beta blocker? do i have to take 2 at the same time because i tried to cut down on this dangerous med once 1/4 a pill and 2 days later i almost got a heart attack
What dose of nebivolol are you on?
Posted by Jeroen on March 18, 2018, at 17:13:30
In reply to Re: To Ed_Uk - how to switch beta blocker? » Jeroen, posted by ed_uk2010 on March 18, 2018, at 17:07:53
half a pill of 5 mg
it caused headaches for months too and other side effects
Posted by Jeroen on March 18, 2018, at 17:13:57
In reply to Re: To Ed_Uk - how to switch beta blocker?, posted by Jeroen on March 18, 2018, at 17:13:30
the headaches part is better now
Posted by ed_uk2010 on March 18, 2018, at 17:23:23
In reply to Re: To Ed_Uk - how to switch beta blocker?, posted by Jeroen on March 18, 2018, at 17:13:57
>the headaches
Nebivolol is a bit unusual. The headache and dizziness are due to blood vessel dilation, not because it's a beta blocker.
Because you're on a low dose, you should be able to switch straight to atenolol 25mg the next day. It's worth asking your doc.
Nebivolol is a slightly unusual choice for sinus tachycardia, because the additional blood vessel dilation reduces blood pressure. It is more often used for high blood pressure. A more standard beta blocker is usually chosen for sinus tachycardia, unless you have high blood pressure too.
Posted by Jeroen on March 18, 2018, at 17:44:05
In reply to Re: To Ed_Uk - how to switch beta blocker? » Jeroen, posted by ed_uk2010 on March 18, 2018, at 17:23:23
no my BP is normal for years i think, never problem with it
Posted by Jeroen on March 18, 2018, at 17:45:41
In reply to Re: To Ed_Uk - how to switch beta blocker? » Jeroen, posted by ed_uk2010 on March 18, 2018, at 17:23:23
thanks Ed, i appreciate this. How are you holding up these days?
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