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Who can I be referred to for Lyme Disease test?
I am a 55 year old female who was tested negative for Lyme Disease in 2007. I, along with my son had been cutting back bracken in a horse field. My son came down with a rash on his leg typical of Lyme Disease and I had the same rash on my face. My son tested positive and was treated with antibiotics. I tested negative but I always knew I had, had Lyme Disease. I just thought back then that it was something that went away on its own.
Seven years on I have gone from being fit and healthy to being bed ridden and I am being tested for auto immune disorders. I have all the symptoms of Lymme Disease. I am under an Neurologist and a Cardiologist. Neither have taken any interest in the possibility of Lyme Disease.
I would like to go privately to a Lyme Specialist but don't know how to find one. Could you please help with this?
Seven years on I have gone from being fit and healthy to being bed ridden and I am being tested for auto immune disorders. I have all the symptoms of Lymme Disease. I am under an Neurologist and a Cardiologist. Neither have taken any interest in the possibility of Lyme Disease.
I would like to go privately to a Lyme Specialist but don't know how to find one. Could you please help with this?
My Lyme doc insisted that patients take probiotics while on antibiotic treatment, for the reason you mention: to repopulate the gut.
To my understanding, there are two basic kinds:
-- yeast-based probiotics such as Saccharomyces boulardii [brand name Florastor], which can be taken at the same time as antibiotics; and
-- bacteria-based probiotics such as acidophilus.
I did not do well on Florastor, and likely had some allergy or sensitivity to the yeast, not sure. My doc said he had never seen that happen, so perhaps it is indeed rare.
The other approach, taking acidophilus, requires carefully spacing the times at which the probiotics are taken away from taking the antibiotics, so that the ANTIbiotics don't kill the PRObiotics. I don't recall exactly how far apart is recommended, but an hour may do (?). A pharmacist might be able to say, if your MD does not know.
To my understanding, there are two basic kinds:
-- yeast-based probiotics such as Saccharomyces boulardii [brand name Florastor], which can be taken at the same time as antibiotics; and
-- bacteria-based probiotics such as acidophilus.
I did not do well on Florastor, and likely had some allergy or sensitivity to the yeast, not sure. My doc said he had never seen that happen, so perhaps it is indeed rare.
The other approach, taking acidophilus, requires carefully spacing the times at which the probiotics are taken away from taking the antibiotics, so that the ANTIbiotics don't kill the PRObiotics. I don't recall exactly how far apart is recommended, but an hour may do (?). A pharmacist might be able to say, if your MD does not know.
My main problem here is working with the NHS system. My consultant seems keen and helpful but lost some enthusiasm when I suggested he wasn't an expert.
Do I take the Doxy for 12 days, which is sounding more and more like a waste of time, or do I stop now, see how my blood test turns out and if it comes back negative, dip in my pocket and pay to be properly investigated?. I'm not a big fan of antibiotics because they strip the gut flora but I will take them if I think they will sort something out. Feels like I'm stripping my gut for nothing here.
Thanks Ricobord.... you have been a great help and I really do appreciate it.
Do I take the Doxy for 12 days, which is sounding more and more like a waste of time, or do I stop now, see how my blood test turns out and if it comes back negative, dip in my pocket and pay to be properly investigated?. I'm not a big fan of antibiotics because they strip the gut flora but I will take them if I think they will sort something out. Feels like I'm stripping my gut for nothing here.
Thanks Ricobord.... you have been a great help and I really do appreciate it.
I'm surprised the Doxy didn't say to take with food. Nausea and even vomitting are very common side effects, so I thought that would be a standard warning. Also, calcium absorbs it, so you don't want to have high calcium foods or supplements at the same time as a dose, especially dairy products.
I'm also surprised you only got 12 days of Doxy. The "official" guidelines here say 2-3 weeks (usually 3) for early Lyme and 4 weeks for late Lyme. ILADS guidelines say to take it a bare minimum of 4 weeks as Lyme bacteria have a 4 week cycle. Many will treat even longer as there are treatment failures even at 4 weeks. For late stage Lyme, a patient usually needs months or even years of treatment. Twelve days is probably just enough to stir up the bugs and make them mad.
Some people do switch from positive to negative tests after taking a few weeks of antibiotics. It can take the body a month to produce enough antibodies to show on the standard tests. For some people, it takes a few months. It depends on how suppressed the immune system is and how long it takes it to start cranking out antibodies at a higher level. There's no simple answer. My doctor's P.A. told me they have patients that never test positive, but they have the signs and symptoms and they get better with the antibiotic regimen, so they treat them.
You might consider taking Vitamin C and zinc supplements to help your immune system. Also magnesium. Lyme can result in shortages of all of them.
Unfortunately for patients, modern medicine is moving in the direction of not treating unless the doctor knows exactly what the patient has. The stunning recommendations of the IDSA and CDC here in the U.S. is that even if the patient gets better on antibiotics and worse when they're stopped, don't treat longer. They say, "It must not be Lyme or you'd be cured. It must be something else." It's really hard to comprehend, especially with so many people getting well on the "non-standard" long term antibiotics.
Woe to those who get emerging and/or poorly understood diseases if this philosophy continues.
I'm also surprised you only got 12 days of Doxy. The "official" guidelines here say 2-3 weeks (usually 3) for early Lyme and 4 weeks for late Lyme. ILADS guidelines say to take it a bare minimum of 4 weeks as Lyme bacteria have a 4 week cycle. Many will treat even longer as there are treatment failures even at 4 weeks. For late stage Lyme, a patient usually needs months or even years of treatment. Twelve days is probably just enough to stir up the bugs and make them mad.
Some people do switch from positive to negative tests after taking a few weeks of antibiotics. It can take the body a month to produce enough antibodies to show on the standard tests. For some people, it takes a few months. It depends on how suppressed the immune system is and how long it takes it to start cranking out antibodies at a higher level. There's no simple answer. My doctor's P.A. told me they have patients that never test positive, but they have the signs and symptoms and they get better with the antibiotic regimen, so they treat them.
You might consider taking Vitamin C and zinc supplements to help your immune system. Also magnesium. Lyme can result in shortages of all of them.
Unfortunately for patients, modern medicine is moving in the direction of not treating unless the doctor knows exactly what the patient has. The stunning recommendations of the IDSA and CDC here in the U.S. is that even if the patient gets better on antibiotics and worse when they're stopped, don't treat longer. They say, "It must not be Lyme or you'd be cured. It must be something else." It's really hard to comprehend, especially with so many people getting well on the "non-standard" long term antibiotics.
Woe to those who get emerging and/or poorly understood diseases if this philosophy continues.
The Doxy instructions said to take it any time and so I didn't take it during or after food. I'm going to have a decent breakfast and then take it. Hopefully it won't make me feel so dreadful. Interesting about Herxheimer reaction, I didn't know about that and will certainly read up on it.
I only have 12 days worth of Doxycycline. You mention three weeks Ricobord?
Is Lymme more likely to show up on a test after taking Doxycycline?
I only have 12 days worth of Doxycycline. You mention three weeks Ricobord?
Is Lymme more likely to show up on a test after taking Doxycycline?
Doxy has to be taken with plenty of food. It's infamous for causing stomach upset. I found I had to eat half a meal, take the Doxy, and then eat the other half of the meal to make sure the Doxy was surrounded by food. If I took it before or at the end of the meal, my stomach got upset.
The headache could very well be the beginning of the die-off. Even if you've been infected for years, Doxy will help. It's good at killing active spirochetes in the blood, which can also perk up your immune system to start making more antibodies. I've heard a lot of examples of people who didn't test "positive" until after they had already taken a few weeks of Doxy.
I encourage you to stick with it. Look up Lyme and Herxheimer reactions (also know as a "herx") so you're familiar with them. They usually get better in a few days, although for some severely ill people it can take weeks.
If your first test is "negative", ask for another one after you've finished the Doxy he gave you. It's unlikely that 3 weeks of Doxy will cure an entrenched infection, but at least it's a start.
The headache could very well be the beginning of the die-off. Even if you've been infected for years, Doxy will help. It's good at killing active spirochetes in the blood, which can also perk up your immune system to start making more antibodies. I've heard a lot of examples of people who didn't test "positive" until after they had already taken a few weeks of Doxy.
I encourage you to stick with it. Look up Lyme and Herxheimer reactions (also know as a "herx") so you're familiar with them. They usually get better in a few days, although for some severely ill people it can take weeks.
If your first test is "negative", ask for another one after you've finished the Doxy he gave you. It's unlikely that 3 weeks of Doxy will cure an entrenched infection, but at least it's a start.
You should not stop taking the medication without your MD's approval. Call his/her office and ring through to the doctor's service, who will get a message to him/her about whether to stop or keep going.
The reaction you had may be a sign that the medication is WORKING. A Herxheimer reaction is when you feel worse for a while after taking medication, because the bacteria are dying and releasing some toxins into your body. If you stop, the bacteria that were not killed but only weakened will survive, and they may become resistant to the doxy, which may not kill those bacteria any more. That is not good for you personally or for the rest of the planet either, because if drug-resistant bacteria spread, we will have no medications at all that work.
Whether to pursue another MD is a separate question.
The reaction you had may be a sign that the medication is WORKING. A Herxheimer reaction is when you feel worse for a while after taking medication, because the bacteria are dying and releasing some toxins into your body. If you stop, the bacteria that were not killed but only weakened will survive, and they may become resistant to the doxy, which may not kill those bacteria any more. That is not good for you personally or for the rest of the planet either, because if drug-resistant bacteria spread, we will have no medications at all that work.
Whether to pursue another MD is a separate question.
Thanks Jackie,
sounds like its pointless taking Doxycycline. I have only taken one and I was physically sick within an hour of swallowing it and now have a thumping headache.
Its all very depressing. If I get a negative result I'm just not going to believe it. I think I really do need to go to a specialist in Lyme and be prepared to fork out some money.
sounds like its pointless taking Doxycycline. I have only taken one and I was physically sick within an hour of swallowing it and now have a thumping headache.
Its all very depressing. If I get a negative result I'm just not going to believe it. I think I really do need to go to a specialist in Lyme and be prepared to fork out some money.
Well, syphilis and Lyme *are* in the same bacterial family!
It's good that your MD is willing to learn about Lyme ... but be aware that he will still likely have blind spots that he is unaware of. Testing and diagnosis is the first hurdle. The 'Lyme' ticks often carry one or more other infections (up to 3 or 4 perhaps), and it takes an experienced MD to understand the subtle symptoms each disease has and to figure out what infection might be hiding behind another.
Doxycycline is effective only in the earliest stages of a Lyme infection, before the Lyme bacteria conceal themselves in areas of the body (like joints and cartilage) and in slimy shields the bacteria create (called bio-films') where the immune system cannot easily detect or reach.
'Doxy' is also not effective against all the tickborne infections, which require different testing and medication.
If your doc is willing to learn and do some reading, then that's good, but many MDs will go by the diagnostic and treatment standards of the IDSA (Infectious Disease Society of America), which (from what I read) are very strict and limited and have not kept up with more recent research.
That is why having a Lyme specialist is so important: MDs who do not understand Lyme nevertheless think that they do, and there lies the real problem -- that you may not be properly diagnosed and fully treated. Lyme, like syphilis, will not go away by itself or without the proper treatment.
Let us know how you do, okay?
It's good that your MD is willing to learn about Lyme ... but be aware that he will still likely have blind spots that he is unaware of. Testing and diagnosis is the first hurdle. The 'Lyme' ticks often carry one or more other infections (up to 3 or 4 perhaps), and it takes an experienced MD to understand the subtle symptoms each disease has and to figure out what infection might be hiding behind another.
Doxycycline is effective only in the earliest stages of a Lyme infection, before the Lyme bacteria conceal themselves in areas of the body (like joints and cartilage) and in slimy shields the bacteria create (called bio-films') where the immune system cannot easily detect or reach.
'Doxy' is also not effective against all the tickborne infections, which require different testing and medication.
If your doc is willing to learn and do some reading, then that's good, but many MDs will go by the diagnostic and treatment standards of the IDSA (Infectious Disease Society of America), which (from what I read) are very strict and limited and have not kept up with more recent research.
That is why having a Lyme specialist is so important: MDs who do not understand Lyme nevertheless think that they do, and there lies the real problem -- that you may not be properly diagnosed and fully treated. Lyme, like syphilis, will not go away by itself or without the proper treatment.
Let us know how you do, okay?
The antibiotics are called Doxycycline Hyclate. Apparently the same drug for treating syphilis!.
I want to thank you for such informative information. With that info I called my consultant this morning and he has agreed to do a PCR test. He did initially tell me that Lyme Disease is very rare and he wasn't sure what test to do until I read out your post Jackie. He wants to start me on antibiotics straight away. He didn't seem too offended when I reminded him that this wasn't his department and said I would send him the link for Lyme Disease UK.
I go for the blood test and prescription today. What antibiotics should I be taking ( just in case he gives me some duff prescription?)
I go for the blood test and prescription today. What antibiotics should I be taking ( just in case he gives me some duff prescription?)
PS -- You say above: "I tested negative but I always knew I had, had Lyme Disease."
The tests most physicians use (and probably use in the UK too) look for your immune system's reaction to a Lyme infection. That works reasonably well for most bacterial infections (of which Lyme is one), but Lyme has a special trick -- it can suppress your immune system, so that you are not producing the antibodies against the infection, and so the test will see no antibodies and thus no indication that you have Lyme. The physicians look at the test with no antibodies and say 'No Lyme.'
There is another test that most MDs do not use, called a PCR test, short for 'polymerase chain reaction' test. That test does not rely on your immune system's reaction, but instead looks for the DNA of the Lyme bacteria. This is a direct indicator of infection rather than an indirect indicator, like the difference between seeing a burglar's footprints in your house (immune system reaction -- indirect evidence) vs seeing the burglar himself (PCR -- direct evidence).
The PCR test is offered by IgeneX Laboratories. My Lyme MD and many others use it, but MDs who are not Lyme specialists often see no need for it and will not order it.
The tests most physicians use (and probably use in the UK too) look for your immune system's reaction to a Lyme infection. That works reasonably well for most bacterial infections (of which Lyme is one), but Lyme has a special trick -- it can suppress your immune system, so that you are not producing the antibodies against the infection, and so the test will see no antibodies and thus no indication that you have Lyme. The physicians look at the test with no antibodies and say 'No Lyme.'
There is another test that most MDs do not use, called a PCR test, short for 'polymerase chain reaction' test. That test does not rely on your immune system's reaction, but instead looks for the DNA of the Lyme bacteria. This is a direct indicator of infection rather than an indirect indicator, like the difference between seeing a burglar's footprints in your house (immune system reaction -- indirect evidence) vs seeing the burglar himself (PCR -- direct evidence).
The PCR test is offered by IgeneX Laboratories. My Lyme MD and many others use it, but MDs who are not Lyme specialists often see no need for it and will not order it.
Welcome to MedHelp Lyme --
We don't have many posting here from England, so I'm not familiar with the process of finding a Lyme specialist there, so did this search online:
-- "lyme disease" ipswich uk --
with the quotation marks around 'lyme disease' as shown.
Results: many promising links! We cannot generally post URLs here on the site (against the rules), but if you do the search above, as written (but without the leading and concluding -- hyphens -- ) you will likely find some helpful leads.
If going directly to a particular clinic or physician you find online isn't working (that is, if you need a referral from a more general physician), then some slightly creative searching should find that too, given how many results my initial search got.
As you have experienced, there is a real blind spot for many physicians when it comes to all aspects of Lyme: how serious it is, how widespread, how important it is to treat fully, how significant co-infections carried by the same tick are, and so on.
All good wishes to you -- if you need more ideas on finding a Lyme specialist, please let us know, and also let us know how you progress. We love happy endings, and will do our best to help you arrive at yours quickly. :)
We don't have many posting here from England, so I'm not familiar with the process of finding a Lyme specialist there, so did this search online:
-- "lyme disease" ipswich uk --
with the quotation marks around 'lyme disease' as shown.
Results: many promising links! We cannot generally post URLs here on the site (against the rules), but if you do the search above, as written (but without the leading and concluding -- hyphens -- ) you will likely find some helpful leads.
If going directly to a particular clinic or physician you find online isn't working (that is, if you need a referral from a more general physician), then some slightly creative searching should find that too, given how many results my initial search got.
As you have experienced, there is a real blind spot for many physicians when it comes to all aspects of Lyme: how serious it is, how widespread, how important it is to treat fully, how significant co-infections carried by the same tick are, and so on.
All good wishes to you -- if you need more ideas on finding a Lyme specialist, please let us know, and also let us know how you progress. We love happy endings, and will do our best to help you arrive at yours quickly. :)
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