Aa
help reading lab test
I had a bulls eye on my back 1 yr ago with flu symptoms. I thought it was a spider bite but did take a picture. Awful pain came and went all year with the latest being numbing in arms and legs, knee and foot pain. Lyme Ab IgG, IgM = 6.76 positive, but Lyme IgG by WB was Negative by CDC guidelines. My GP started me on 1 month of Doxy but Now I'm wondering if I actually have Lyme with the Neg WB. Is it possible? Labs were done in Spokane, Wa. My symptoms have gotten worse since starting Doxy and would rather not continue med if it's not Lyme.
Many of the psychiatrists who specialize, also, in Lyme disease MAY offer mood altering drugs (which I would not agree to, myself) but there are many that know that Lyme does 'wondrous' things to our brains and that antibiotics will take away the 'mental illness' aspect of a person infected with Lyme.
One of them is Dr. Robt. Bransfield (not in your area, sadly) and another is Dr. Brian Fallon, also not near you.
One of the articles written by Dr. Bransfield is called Microbes and Mental Illness
http://www.mentalhealthandillness.com/Articles/MicrobesAndMentalIllness.htm
I was fortunate to be invited to become one of the people who could read and post on his MMI 'blog' (before the word blog was invented).
Doctors, researchers and patients had intelligent discussions. Dr. Bransfield was more interested in the treatment of Lyme via antibiotics, although he did suggest 'mind altering' drugs, per his training, at rare times.
Of course we all know who Dr. Brain Fallon is----- or those who read on the Internet about Lyme studies, treatments etc certainly do.
One of them is Dr. Robt. Bransfield (not in your area, sadly) and another is Dr. Brian Fallon, also not near you.
One of the articles written by Dr. Bransfield is called Microbes and Mental Illness
http://www.mentalhealthandillness.com/Articles/MicrobesAndMentalIllness.htm
I was fortunate to be invited to become one of the people who could read and post on his MMI 'blog' (before the word blog was invented).
Doctors, researchers and patients had intelligent discussions. Dr. Bransfield was more interested in the treatment of Lyme via antibiotics, although he did suggest 'mind altering' drugs, per his training, at rare times.
Of course we all know who Dr. Brain Fallon is----- or those who read on the Internet about Lyme studies, treatments etc certainly do.
Psychiatrists are MDs, so they are licensed to prescribe ... tho I suspect many of them focus on mood-moderating meds rather than those for infectious disease. If you don't like any of those on the list, ask ILADS for some more names.
Yes, psychiatrists can write prescriptions for antibiotics. And no, you're not crazy! lol
Would you PM me those names and I'll see what I can find out about them.
To PM---- hover your mouse over my name and you'll see 'send a message'.
Would you PM me those names and I'll see what I can find out about them.
To PM---- hover your mouse over my name and you'll see 'send a message'.
I heard back from ILADS They gave me 3 names. One MD psychiatrist, 2 ND's one which cave76 found. Huh do psychiatrists write scripts for antibiotics? As crazy as I'm feeling maybe this could be one stop shopping:)
No. This is a private group and the folder with the names in it are for group members only.
"They usually keep a list of LLMD names there with comments from lymies who used them."
They mention Lyme doctors in public? Just curious.
They mention Lyme doctors in public? Just curious.
Ditto what Jackie said. You have Lyme.
As I mentioned above more then likely yahoo groups and Facebook has Lyme support groups in your state. They usually keep a list of LLMD names there with comments from lymies who used them. Of course in addition to ILADS.org.
As I mentioned above more then likely yahoo groups and Facebook has Lyme support groups in your state. They usually keep a list of LLMD names there with comments from lymies who used them. Of course in addition to ILADS.org.
"Doc said since my WB was neg CDC would not consider it lyme."
The CDC standards were designed long ago to track the spread of epidemics, so the standards for diagnosis set by the CDC are very very high, in order to exclude illnesses that might be Lyme but are not clearly, absolutely Lyme -- the reason is to keep the surveillance data pure in a scientific way.
Unfortunately, the tests are not very accurate and so there are lots of less than '100% YES IT'S LYME' results, but the CDC is fine with that because their purpose is to track the spread of Lyme, not to diagnose individuals like you.
Therefore you can have a screaming case of Lyme but be negative by CDC standards, and that could well be what has happened to you.
My best suggestion, and what I would do myself, is find a Lyme specialist who tests through IGeneX. Those tests are structured completely differently from the CDC/Western blot test and are far more accurate.
In your situation, I would not rule out having Lyme unless and until a Lyme specialist runs IGeneX testing and says it's negative.
As to finding a doc, I would send an email to
contact [at] ILADS [dot] org
and tell them where you are located (Seattle area) and how far you can reasonably travel. They will send you one or more names -- not sure, since I didn't use ILADS to find a doc. If the first name(s) they send don't work out, ask for more, and remind them who they sent you to already.
I just searched online for
seattle lyme disease association
and got quite a few leads. Check the patient boards looking for comments, and see what people say. Not a foolproof way to pick a doc, but better than no options at all. Once you find a name that seems useful, then googlesearch that name and see what people say.
Unless someone has been a patient of a particular doc, it would be hard for them to comment meaningfully, I would think, so do the best you can and give it a try. Once you zero in on a likely doc, then search his/her name and see what you get online.
Lyme is cutting edge medicine, and the docs are all over the place, so there is not a foolproof way to get to the right doc. But don't be discouraged -- like they say, when going through h*ll, keep on going.
Hang on! You're making progress even if it doesn't feel like it. Keep us posted.
The CDC standards were designed long ago to track the spread of epidemics, so the standards for diagnosis set by the CDC are very very high, in order to exclude illnesses that might be Lyme but are not clearly, absolutely Lyme -- the reason is to keep the surveillance data pure in a scientific way.
Unfortunately, the tests are not very accurate and so there are lots of less than '100% YES IT'S LYME' results, but the CDC is fine with that because their purpose is to track the spread of Lyme, not to diagnose individuals like you.
Therefore you can have a screaming case of Lyme but be negative by CDC standards, and that could well be what has happened to you.
My best suggestion, and what I would do myself, is find a Lyme specialist who tests through IGeneX. Those tests are structured completely differently from the CDC/Western blot test and are far more accurate.
In your situation, I would not rule out having Lyme unless and until a Lyme specialist runs IGeneX testing and says it's negative.
As to finding a doc, I would send an email to
contact [at] ILADS [dot] org
and tell them where you are located (Seattle area) and how far you can reasonably travel. They will send you one or more names -- not sure, since I didn't use ILADS to find a doc. If the first name(s) they send don't work out, ask for more, and remind them who they sent you to already.
I just searched online for
seattle lyme disease association
and got quite a few leads. Check the patient boards looking for comments, and see what people say. Not a foolproof way to pick a doc, but better than no options at all. Once you find a name that seems useful, then googlesearch that name and see what people say.
Unless someone has been a patient of a particular doc, it would be hard for them to comment meaningfully, I would think, so do the best you can and give it a try. Once you zero in on a likely doc, then search his/her name and see what you get online.
Lyme is cutting edge medicine, and the docs are all over the place, so there is not a foolproof way to get to the right doc. But don't be discouraged -- like they say, when going through h*ll, keep on going.
Hang on! You're making progress even if it doesn't feel like it. Keep us posted.
"I'm back to doubting Lyme. Doc said since my WB was neg CDC would not consider it lyme. My IgG and IgM came out positive plus a picture of the bulls eye on my back."
That's too bad that your doctor has got you doubting you have Lyme.
I know a hundred people who wish that they had the positive marker for Lyme disease as you do:
Bulls eye rash----- bingo!
I don't know how she can say that!
Even the CDC on its web site states:
"Signs and Symptoms of Lyme Disease
Red, expanding rash called erythema migrans (EM)"
Having a bulls-eye rash is the ONLY one sure sign that a person has Lyme that is accepted by everyone, even the CDC.
Too bad that your doctor hadn't seen that bulls eye rash in person. Having a picture is great! But.......
If she had and started treating you then then the pitiful low dose of doxy would have probably put Lyme into a life long remission and we would have never met you.
Wish I'd had a bulls eye rash and/or pos. blood tests. I might have been in good health now.
That's too bad that your doctor has got you doubting you have Lyme.
I know a hundred people who wish that they had the positive marker for Lyme disease as you do:
Bulls eye rash----- bingo!
I don't know how she can say that!
Even the CDC on its web site states:
"Signs and Symptoms of Lyme Disease
Red, expanding rash called erythema migrans (EM)"
Having a bulls-eye rash is the ONLY one sure sign that a person has Lyme that is accepted by everyone, even the CDC.
Too bad that your doctor hadn't seen that bulls eye rash in person. Having a picture is great! But.......
If she had and started treating you then then the pitiful low dose of doxy would have probably put Lyme into a life long remission and we would have never met you.
Wish I'd had a bulls eye rash and/or pos. blood tests. I might have been in good health now.
Thanks. I'm a 54 year old female living near Seattle, Wa.
(My lab tests were sent to Spokane Wa.) I took magnesium yesterday which seemed to help. I slept well but keep waking up so early. I never thought I'd be a morning person. I'm back to doubting Lyme. Doc said since my WB was neg CDC would not consider it lyme. My IgG and IgM came out positive plus a picture of the bulls eye on my back. Anyway, I'll continue with doxy and would like help picking a doc in this area. Thanks.
(My lab tests were sent to Spokane Wa.) I took magnesium yesterday which seemed to help. I slept well but keep waking up so early. I never thought I'd be a morning person. I'm back to doubting Lyme. Doc said since my WB was neg CDC would not consider it lyme. My IgG and IgM came out positive plus a picture of the bulls eye on my back. Anyway, I'll continue with doxy and would like help picking a doc in this area. Thanks.
That's too bad (understatement) that your doctor wouldn't even consider treating you at higher or longer doses. But it's what I expected, after reading between the lines---- even though I said (in the spirit of staying hopeful) that maybe she might be one of the few in WA state that might.
I will also stay hopeful that you'll respond in a positive way to the low dose of doxy she has you on. There ARE miracles happening out there, so I hear.
I don't know what your insurance plan is---- but some won't pay for naturopaths. Check into that before you go to one (Dr. Susan Marra is an ND, as you know). But read what I write a couple of paragraphs down about the good possibility of you getting reimbursed (at least partly, depending on your ins.) for a visit to a ND. But, unfortunately she isn't also an MD, which some NDs are.
So it all depends on your ins. plan and whether they'll pay for NDs or not.
Then, will your insurance pay for long term treatment? Another unknown. That's not a question you can ask of the people who manage your ins----- for they can't know that beforehand and won't tell you yay or nay.
There's hardly any good llmd who will accept ins. That's because then they're free from the constraints that the insurance company might (and usually does) put on treatments. That's just a fact that we all had to get used to, not that we like it.
****But those doctors will usually give us an invoice that we can then send ourselves to our insurance company. Did you ask, at Dr Marra's office, if that's indeed what they do? It's very IMPORTANT that you do----- so on Monday morning, please call that office again, ask that question and then report back to us/me what you were told. I'd like to know for all the other Lymies that I help.****
And if your ins. won't pay for an ND, then I'll try to find an ND in WA state that's also an MD who will tx Lyme as required. I may not be able to, so Rico's suggestion to get in touch with a Lyme support group near you (or anywhere in WA state) and see if they have recommendations. But be aware that many people go to sort of off-the-wall doctors who treat by off-the-wall treatments. There's no lack of shysters in the medical field and WA and OR have their full share--- maybe even more! :)
Please be aware that I don't know if Dr. Marra will be able to help you or not just because I mention her as being willing to tx Lyme. That's my disclaimer.
You've just been caught between the rock and the hard place like so many of us have! It's not fun!!!
I will also stay hopeful that you'll respond in a positive way to the low dose of doxy she has you on. There ARE miracles happening out there, so I hear.
I don't know what your insurance plan is---- but some won't pay for naturopaths. Check into that before you go to one (Dr. Susan Marra is an ND, as you know). But read what I write a couple of paragraphs down about the good possibility of you getting reimbursed (at least partly, depending on your ins.) for a visit to a ND. But, unfortunately she isn't also an MD, which some NDs are.
So it all depends on your ins. plan and whether they'll pay for NDs or not.
Then, will your insurance pay for long term treatment? Another unknown. That's not a question you can ask of the people who manage your ins----- for they can't know that beforehand and won't tell you yay or nay.
There's hardly any good llmd who will accept ins. That's because then they're free from the constraints that the insurance company might (and usually does) put on treatments. That's just a fact that we all had to get used to, not that we like it.
****But those doctors will usually give us an invoice that we can then send ourselves to our insurance company. Did you ask, at Dr Marra's office, if that's indeed what they do? It's very IMPORTANT that you do----- so on Monday morning, please call that office again, ask that question and then report back to us/me what you were told. I'd like to know for all the other Lymies that I help.****
And if your ins. won't pay for an ND, then I'll try to find an ND in WA state that's also an MD who will tx Lyme as required. I may not be able to, so Rico's suggestion to get in touch with a Lyme support group near you (or anywhere in WA state) and see if they have recommendations. But be aware that many people go to sort of off-the-wall doctors who treat by off-the-wall treatments. There's no lack of shysters in the medical field and WA and OR have their full share--- maybe even more! :)
Please be aware that I don't know if Dr. Marra will be able to help you or not just because I mention her as being willing to tx Lyme. That's my disclaimer.
You've just been caught between the rock and the hard place like so many of us have! It's not fun!!!
You wrote:
" But when I went back to the ILADS guidelines as per your earlier post I noticed it was written in 2004? "
Perhaps that's because the information contained it is as good today as it was in 2004? :) There is precious little funding for Lyme so 'new' research is in short supply.
Plus we're dealing with one of the craftiest critters around in terms of how to evade detection/ treatment/ and what to do about it.
I'll give you a couple of words about what Bb is capable of:
Pleomorphism
Antigenitic variation
But I know that "all' you want is to know how to get better and words like that aren't interesting to you. I sure wish it was that easy. :)
" But when I went back to the ILADS guidelines as per your earlier post I noticed it was written in 2004? "
Perhaps that's because the information contained it is as good today as it was in 2004? :) There is precious little funding for Lyme so 'new' research is in short supply.
Plus we're dealing with one of the craftiest critters around in terms of how to evade detection/ treatment/ and what to do about it.
I'll give you a couple of words about what Bb is capable of:
Pleomorphism
Antigenitic variation
But I know that "all' you want is to know how to get better and words like that aren't interesting to you. I sure wish it was that easy. :)
My doctor rotates abx when something is obviously not working we change abx.
I know that Facebook has many Lyme support groups and some by state you can look that up and they can give you a list of doctors. My FL group has a list of Dr's across the state.
I know that Facebook has many Lyme support groups and some by state you can look that up and they can give you a list of doctors. My FL group has a list of Dr's across the state.
I know someone with late stage Lyme who went to a doctor willing to treat her long term and he just gave her Doxy for 3 years. It got her about 50% better in the first year, and then nothing in years 2-3. I'm surprised she and her doctor stuck with it so long when it was no longer helping.
My doc rotates abx when one seems to stop helping. Lyme bacteria are masters at adapting and dodging the immune system and antibiotics, so often a single oral antibiotic is insufficient.
It is disappointing that your doc is falling back on the CDC guidelines. This is where the rigidity of the IDSA and CDC hurts patients. For many other diseases, doctors feel no fear in treating as they see fit, which is appropriate.
But in the case of Lyme, there is very unfortunate intimidation of doctors to follow the "guidelines". I've heard other stories like yours, where a doctor unfamiliar with Lyme is initially open to exploring treatment possibilities, but then changes their mind once they start doing the research and revert to the strict guideliness for fear of being reported to the medical board.
You're probably beginning to understand why there are so many frustrated and/or angry Lyme patients out there. My personal suggestion is to take whatever she'll give you, and then find a doc who will treat you until you're well. Travel if necessary. People come from all over the country (and even overseas) to see my doc. Do what it takes to get treated as soon as possible. If you let it drag out, or repeatedly start and stop treatment, you're less likely to experience a full recovery.
You might contact a local Lyme support group. I was pleasantly surprised when my local group sent me a list of area docs willing to diagnose and treat Lyme. There was one in my insurance plan (treating under the radar) willing to treat long term with oral abx as needed. Some medications cost more than those pricey office visits to an LLMD, and seeing an in-network doc can make a huge difference in out of pocket costs. Depending on how your insurance plan works, find a doc like this could make a world of difference for you.
You need to do whatever it takes to treat it now.
My doc rotates abx when one seems to stop helping. Lyme bacteria are masters at adapting and dodging the immune system and antibiotics, so often a single oral antibiotic is insufficient.
It is disappointing that your doc is falling back on the CDC guidelines. This is where the rigidity of the IDSA and CDC hurts patients. For many other diseases, doctors feel no fear in treating as they see fit, which is appropriate.
But in the case of Lyme, there is very unfortunate intimidation of doctors to follow the "guidelines". I've heard other stories like yours, where a doctor unfamiliar with Lyme is initially open to exploring treatment possibilities, but then changes their mind once they start doing the research and revert to the strict guideliness for fear of being reported to the medical board.
You're probably beginning to understand why there are so many frustrated and/or angry Lyme patients out there. My personal suggestion is to take whatever she'll give you, and then find a doc who will treat you until you're well. Travel if necessary. People come from all over the country (and even overseas) to see my doc. Do what it takes to get treated as soon as possible. If you let it drag out, or repeatedly start and stop treatment, you're less likely to experience a full recovery.
You might contact a local Lyme support group. I was pleasantly surprised when my local group sent me a list of area docs willing to diagnose and treat Lyme. There was one in my insurance plan (treating under the radar) willing to treat long term with oral abx as needed. Some medications cost more than those pricey office visits to an LLMD, and seeing an in-network doc can make a huge difference in out of pocket costs. Depending on how your insurance plan works, find a doc like this could make a world of difference for you.
You need to do whatever it takes to treat it now.
Aggh, one more:
If you have not already done so, email to
[contact] at ILADS [dot] org
and tell them where you are (Spokane WA?) and how far you can travel.
ILADS can send you one or more member names. They may or may not work out, but it's a place to start, and often does work.
If you have not already done so, email to
[contact] at ILADS [dot] org
and tell them where you are (Spokane WA?) and how far you can travel.
ILADS can send you one or more member names. They may or may not work out, but it's a place to start, and often does work.
Reading back to your earlier posts, it looks like you might be in or near Spokane.
I just searched online for
LLMD spokane
and got a bunch of hits. Some states are huffy about Lyme disease and the LLMDs have to keep a low profile, but they are usually findable with a little caution. That is why we do NOT post LLMD's names in the open here. Just because someone else has carelessly named an LLMD in public is no reason to compound the problem by posting it again.
So check it out, and see what you can find out about the various options within travelling distance for you. Once the diagnosis is established (Lyme plus whatever coinfections), the time between appointments can be a month, so it's not like you'll be there every week. Closer is always better, but not necessary.
Okay, it's late. Get some sleep, try not to worry. Tally ho.
I just searched online for
LLMD spokane
and got a bunch of hits. Some states are huffy about Lyme disease and the LLMDs have to keep a low profile, but they are usually findable with a little caution. That is why we do NOT post LLMD's names in the open here. Just because someone else has carelessly named an LLMD in public is no reason to compound the problem by posting it again.
So check it out, and see what you can find out about the various options within travelling distance for you. Once the diagnosis is established (Lyme plus whatever coinfections), the time between appointments can be a month, so it's not like you'll be there every week. Closer is always better, but not necessary.
Okay, it's late. Get some sleep, try not to worry. Tally ho.
And your first step tomorrow:
If you do not have copies of ALL your medical tests from your most recent doc, call the office tomorrow and say you would like copies of ALL your tests and records, not just some, but ALL. EVERYTHING.
From what I have read, I believe you are legally entitled to have copies of your tests ... you paid for them, so you get copies. Of ALL of the tests.
This is the first step. Go for it!
If you do not have copies of ALL your medical tests from your most recent doc, call the office tomorrow and say you would like copies of ALL your tests and records, not just some, but ALL. EVERYTHING.
From what I have read, I believe you are legally entitled to have copies of your tests ... you paid for them, so you get copies. Of ALL of the tests.
This is the first step. Go for it!
Remind me what part of the country you live in -- like 'near Indianapolis' or whatever.
For what comfort it's worth, your doc's reaction is not out of the so-called mainstream.
You are encountering the split in the medical community about Lyme, how to test for it, how to diagnose it, how widespread it is (or rather isn't), how to treat it with what meds and for how long, and whether to test for co-infections.
Other than dealing with the illness itself, the hardest part about Lyme for a patient is to come to grips with the medical profession's failure in dealing with Lyme -- all the way from how far it has spread and how common it is to how to test, diagnose and treat it and its co-infections.
imo, this is a huge scandal in the medical community, and when it finally blows up, it will be something to behold. In the meantime, we cope and find a doc who is wiser than the CDC-type docs.
Now that you have encountered Lyme denial in full flower, take a deep breath and know that there are options. Your doc is taking the full, 100% CDC approach, which many otherwise good docs do, because they either can't imagine there could be such perfidy going on in the medical profession, or because they are afraid to believe the CDC and the Infectious Disease Society of America is wrong (and worse, that the IDSA is ignorant AND stupid).
The alternative is ILADS and its members and followers. ILADS knows that doxy too often does not do the trick, and also that doxy is not effective against many of the co-infections that the Lyme ticks carry about half the time, along with Lyme.
Your doc is following the IDSA approach, and out of ignorance, willfulness and/or fear for her professional standing, she will likely not be persuaded by anything you might say or try to tell her. I went through 20 MDs of all specialities and no specialities at all, and none of them had a diagnosis for me. Only one of the 20 had the honesty to say "I know you are ill, but I do not know what you have." The rest of them denied or weasled about me even being ill. I've assumed you are male (your profile says so, but sometimes those don't get filled in properly), and it's my general impression that females get tagged with the 'head case' diagnosis a lot more often than males do ... but we feel just as abandoned and rejected as you may be feeling now.
Do not despair. There are docs out there who understand Lyme and who can and will help. All we need to do is help you find a doc you are comfy with, now that your initial docs have flunked Lyme 101. Lyme is real, its coinfections are real, and a doc who doesn't keep his/her head where the sun don't shine will be able to help.
It's not always an easy path to getting the diagnosis, even with a knowlegeable doc, because Lyme is so tricky. If you read mojogal's posts here, you can see how complex her situation is. Most of us do not have that level of difficulty in gaining diagnosis and treatment, but just know that it can and has been done, and you can do it too.
As a great man said, 'Be not afraid'. Have a good night's sleep if you can (magnesium supplements!), and then tomorrow we yank up our collective socks and find you a Lyme doc. We're here, and we're not going away.
'Be not afraid.' Once on the road to sorting things out, you'll feel better, physically and emotionally. Okay? I would not say this if I have not lived it and seen it happen to others. Hang on. Tomorrow we re-group. Now get some sleep if you can. Magnesium supplements may help with sleep, or failing that, a glass of milk, which is already loaded with magnesium.
Take heart. Sleep well. Talk with you tomorrow. Ok?
You are encountering the split in the medical community about Lyme, how to test for it, how to diagnose it, how widespread it is (or rather isn't), how to treat it with what meds and for how long, and whether to test for co-infections.
Other than dealing with the illness itself, the hardest part about Lyme for a patient is to come to grips with the medical profession's failure in dealing with Lyme -- all the way from how far it has spread and how common it is to how to test, diagnose and treat it and its co-infections.
imo, this is a huge scandal in the medical community, and when it finally blows up, it will be something to behold. In the meantime, we cope and find a doc who is wiser than the CDC-type docs.
Now that you have encountered Lyme denial in full flower, take a deep breath and know that there are options. Your doc is taking the full, 100% CDC approach, which many otherwise good docs do, because they either can't imagine there could be such perfidy going on in the medical profession, or because they are afraid to believe the CDC and the Infectious Disease Society of America is wrong (and worse, that the IDSA is ignorant AND stupid).
The alternative is ILADS and its members and followers. ILADS knows that doxy too often does not do the trick, and also that doxy is not effective against many of the co-infections that the Lyme ticks carry about half the time, along with Lyme.
Your doc is following the IDSA approach, and out of ignorance, willfulness and/or fear for her professional standing, she will likely not be persuaded by anything you might say or try to tell her. I went through 20 MDs of all specialities and no specialities at all, and none of them had a diagnosis for me. Only one of the 20 had the honesty to say "I know you are ill, but I do not know what you have." The rest of them denied or weasled about me even being ill. I've assumed you are male (your profile says so, but sometimes those don't get filled in properly), and it's my general impression that females get tagged with the 'head case' diagnosis a lot more often than males do ... but we feel just as abandoned and rejected as you may be feeling now.
Do not despair. There are docs out there who understand Lyme and who can and will help. All we need to do is help you find a doc you are comfy with, now that your initial docs have flunked Lyme 101. Lyme is real, its coinfections are real, and a doc who doesn't keep his/her head where the sun don't shine will be able to help.
It's not always an easy path to getting the diagnosis, even with a knowlegeable doc, because Lyme is so tricky. If you read mojogal's posts here, you can see how complex her situation is. Most of us do not have that level of difficulty in gaining diagnosis and treatment, but just know that it can and has been done, and you can do it too.
As a great man said, 'Be not afraid'. Have a good night's sleep if you can (magnesium supplements!), and then tomorrow we yank up our collective socks and find you a Lyme doc. We're here, and we're not going away.
'Be not afraid.' Once on the road to sorting things out, you'll feel better, physically and emotionally. Okay? I would not say this if I have not lived it and seen it happen to others. Hang on. Tomorrow we re-group. Now get some sleep if you can. Magnesium supplements may help with sleep, or failing that, a glass of milk, which is already loaded with magnesium.
Take heart. Sleep well. Talk with you tomorrow. Ok?
Feeling totally discouraged. My Doc called back last night at 8:30 saying I should go to the CDC for 2nd opinion. She thinks Doxy dosage is fine, take it for another month and come back and see her. Feeling depressed, anxious, and kind of crazy. Who knows I may be one of the lucky ones and this will work!
" oral doses of 200 mg bid [twice daily] is more effective than 100 mg qid [four times daily]. "
That's what I was prescribed by the LLMDs that I saw. I wonder why 400 mg wasn't rx'd to be given in one dose.---- maybe it was too harsh on the stomach?
IV doxy wouldn't have affected the stomach that much---- but I do remember reading that people who received IV doxy had it administered by a 'pump' through a picc line (or an IV drip) which delivered it slowly.
Which, back to bdonahue----- 400 mg oral doxy in two doses of 200mg each. That seems to be the norm---- unless you're seeing a doctor who doesn't know that much about Lyme. That's not MY medical advice---- just reporting what experts and hundreds of Lymies have done.
That's what I was prescribed by the LLMDs that I saw. I wonder why 400 mg wasn't rx'd to be given in one dose.---- maybe it was too harsh on the stomach?
IV doxy wouldn't have affected the stomach that much---- but I do remember reading that people who received IV doxy had it administered by a 'pump' through a picc line (or an IV drip) which delivered it slowly.
Which, back to bdonahue----- 400 mg oral doxy in two doses of 200mg each. That seems to be the norm---- unless you're seeing a doctor who doesn't know that much about Lyme. That's not MY medical advice---- just reporting what experts and hundreds of Lymies have done.
From Burrascano's 2008 treatment guidelines posted on the ILADS website currently:
-------------------------------------------------
ANTIBIOTICS
There are four types of antibiotics in general use for Bb treatment [and one of these types are the tetracyclines].
The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic [meaning they stop bacterial reproduction, but do not kill the bacteria] unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate.
For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration [such as by IV or injection]. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid [twice daily] is more effective than 100 mg qid [four times daily]. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen."
I have read no indication that this statement is out of date, although now 5 years ago.
-------------------------------------------------
ANTIBIOTICS
There are four types of antibiotics in general use for Bb treatment [and one of these types are the tetracyclines].
The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic [meaning they stop bacterial reproduction, but do not kill the bacteria] unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate.
For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration [such as by IV or injection]. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid [twice daily] is more effective than 100 mg qid [four times daily]. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen."
I have read no indication that this statement is out of date, although now 5 years ago.
If you're looking for a quick success story, I'm not the one to talk to. (grin)
I took many years of many different antibiotics with improvement but no real remission----- until I start Bicillin LA injections.
I stayed on those for maybe 4 years and achieved a nice remission that lastd almost that long.
But I started out sub-zero compared to what you're describing. I won't go into dreary detail----- but I was almost totally debilitated. This isn't a pi**ing contest but I believe that, because your symptoms are fairly mild (comparatively), and for that reason you'll probably (I'm guessing) get better in a fairly short time, Lymely speaking. Plus I had Bartonella, which I think is a real basturd of a co-infection---- but no one knew I had it because it hadn't been discovered yet when I first got sick.
This also isn't a recommendation for YOU to start Bicillin LA----(grin). Although since it does have pretty good track record with Lyme with fewer bad herxes---- I can't figure out why doctors don't give it sooner to more people. All I know is that if close friend of mine got Lyme I'd move heaven and earth, as much as I could, to get him/her treated with it.
There are ways to move heaven and earth and the only reason I'm not doing that for me, now, for bicillin injections, is because in the meantime I developed pulmonary emboli and because I'm taking Coumadin the 2-3 x a week injections MIGHT cause bleeding that can't be stopped!
If it ain't one darned thing, it's another! Sigh.
Oh, and yes---- the 400 mg/day doxy was one of the drugs that brought about some improvement, in the beginning. I sense you're not sure of your dose (and you may have no control of it because of your doctors short-sighted viewpoint). I won't tell you that you SHOULD take doxy at that high a dose, but if you'd read as many patient's stories and I have over the last couple of decades----- you'd find out that 400 mg IS very common---- more than common--- almost the norm. It's just been since fairly recently that good Lyme doctors are only giving the 200 mg/day for shorter times. I guess the IDSA scared them!
Good luck with whatever dose you take.
I took many years of many different antibiotics with improvement but no real remission----- until I start Bicillin LA injections.
I stayed on those for maybe 4 years and achieved a nice remission that lastd almost that long.
But I started out sub-zero compared to what you're describing. I won't go into dreary detail----- but I was almost totally debilitated. This isn't a pi**ing contest but I believe that, because your symptoms are fairly mild (comparatively), and for that reason you'll probably (I'm guessing) get better in a fairly short time, Lymely speaking. Plus I had Bartonella, which I think is a real basturd of a co-infection---- but no one knew I had it because it hadn't been discovered yet when I first got sick.
This also isn't a recommendation for YOU to start Bicillin LA----(grin). Although since it does have pretty good track record with Lyme with fewer bad herxes---- I can't figure out why doctors don't give it sooner to more people. All I know is that if close friend of mine got Lyme I'd move heaven and earth, as much as I could, to get him/her treated with it.
There are ways to move heaven and earth and the only reason I'm not doing that for me, now, for bicillin injections, is because in the meantime I developed pulmonary emboli and because I'm taking Coumadin the 2-3 x a week injections MIGHT cause bleeding that can't be stopped!
If it ain't one darned thing, it's another! Sigh.
Oh, and yes---- the 400 mg/day doxy was one of the drugs that brought about some improvement, in the beginning. I sense you're not sure of your dose (and you may have no control of it because of your doctors short-sighted viewpoint). I won't tell you that you SHOULD take doxy at that high a dose, but if you'd read as many patient's stories and I have over the last couple of decades----- you'd find out that 400 mg IS very common---- more than common--- almost the norm. It's just been since fairly recently that good Lyme doctors are only giving the 200 mg/day for shorter times. I guess the IDSA scared them!
Good luck with whatever dose you take.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
