Aa
Newly Diagnosed
Good morning! I am a newly diagnosed lyme case. Couple of months ago, my left elbow had swollen pretty bad and I went to ER thinking maybe I had a spider bite The site was hot and extremely sore, about the size of a golf ball. ER doc told me it was bursitis and tapped the site. Test results came back as staph.
I still wasnt feeling well, sore and extremely achy in joints (hips and knees mostly). Anyway, my PCP did the lyme test and I was positive. Went through round one of antibiotic for 30 days. PCP thinks the diagnosis of bursitis was actually where I had been bit. Tested again and still have it. I am now on my 8th day of Biaxin.
Doc said I have a recent case of lyme.
Still very achy. Biaxin upsets the tummy and gives me a horrific headache. Really not feeling any better. I do go back to the PCP on the 19th and she will test again.
HAs anyone else had problems with Biaxin?
If the next test is positive, is the next step IV antibiotics?
Any thoughts will be appreciated.
Shari
I still wasnt feeling well, sore and extremely achy in joints (hips and knees mostly). Anyway, my PCP did the lyme test and I was positive. Went through round one of antibiotic for 30 days. PCP thinks the diagnosis of bursitis was actually where I had been bit. Tested again and still have it. I am now on my 8th day of Biaxin.
Doc said I have a recent case of lyme.
Still very achy. Biaxin upsets the tummy and gives me a horrific headache. Really not feeling any better. I do go back to the PCP on the 19th and she will test again.
HAs anyone else had problems with Biaxin?
If the next test is positive, is the next step IV antibiotics?
Any thoughts will be appreciated.
Shari
I am glad you tested positive! That makes it much easier to get treatment.
I took Biaxin for a few weeks before I had to stop all meds to give my kidneys a rest. It was paired with Plaquenil, which my doc said makes the Biaxin up to 40% more effective. (Plaquenil makes the body more alkaline, which makes it easier for the Biaxin to penetrate cells to get to the bacteria.) I didn't notice headaches specifically, but I always feel crummy for about a week on a new antibiotic as my body clears out all the newly killed bugs.
I have had low grades headaches with various drugs during my treatment. It is hard to tell sometimes if it is a result of the drug, or if it is a result of the die off. I found taking chlorella to be really helpful in clearing out toxins and helping me feel better overall.
Unless you have a lot of neurological symptoms or you have had Lyme for years, you probably won't need IV abx.
If you'd like the name of the LymeMD blogger, just send me a private message and I'll send it to you. He seems to know what he's doing. BTW, that is terrific that your regular doctor is willing to treat you beyond 30 days. An awful lot of doctors won't even do that.
Some doctors don't believe you ever fully get rid of Lyme. They believe that it sequesters itself somewhere that it can hide from the immune system, and that the immune system beats it back when it tries to send out new bugs elsewhere in the body. They think this because they have seen patients whom they treat aggressively with antibiotics; the patients get well and go back to their lives; years later or under significant stress, like surgery or divorce, they come back in with symptoms of Lyme again. I read one doctor who felt if you made it five years with no more Lyme symptoms, your odds of still having it hiding out somewhere are really low.
The professor at UC Davis who studies Borrelia in mice says it persists for the entire life of the mouse. But then, we're not mice.
Other doctors believe it can be cured, but your odds are lower if you've had steroids, have coinfections, or have had Lyme for a long time. My doc was quoted saying he has an easier time curing someone with just Lyme for 20 years than someone with Lyme and 2 coinfections for 5 years. I am somewhere in between. I had it 6 years before I was diagnosed, took a small amount of steroids (shot & orals 4 days and asthma inhalor for a month), and I have 1 coinfection of Bartonella. I am optimistic, though! I am sticking with treatment until I at least seem cured.
I took Biaxin for a few weeks before I had to stop all meds to give my kidneys a rest. It was paired with Plaquenil, which my doc said makes the Biaxin up to 40% more effective. (Plaquenil makes the body more alkaline, which makes it easier for the Biaxin to penetrate cells to get to the bacteria.) I didn't notice headaches specifically, but I always feel crummy for about a week on a new antibiotic as my body clears out all the newly killed bugs.
I have had low grades headaches with various drugs during my treatment. It is hard to tell sometimes if it is a result of the drug, or if it is a result of the die off. I found taking chlorella to be really helpful in clearing out toxins and helping me feel better overall.
Unless you have a lot of neurological symptoms or you have had Lyme for years, you probably won't need IV abx.
If you'd like the name of the LymeMD blogger, just send me a private message and I'll send it to you. He seems to know what he's doing. BTW, that is terrific that your regular doctor is willing to treat you beyond 30 days. An awful lot of doctors won't even do that.
Some doctors don't believe you ever fully get rid of Lyme. They believe that it sequesters itself somewhere that it can hide from the immune system, and that the immune system beats it back when it tries to send out new bugs elsewhere in the body. They think this because they have seen patients whom they treat aggressively with antibiotics; the patients get well and go back to their lives; years later or under significant stress, like surgery or divorce, they come back in with symptoms of Lyme again. I read one doctor who felt if you made it five years with no more Lyme symptoms, your odds of still having it hiding out somewhere are really low.
The professor at UC Davis who studies Borrelia in mice says it persists for the entire life of the mouse. But then, we're not mice.
Other doctors believe it can be cured, but your odds are lower if you've had steroids, have coinfections, or have had Lyme for a long time. My doc was quoted saying he has an easier time curing someone with just Lyme for 20 years than someone with Lyme and 2 coinfections for 5 years. I am somewhere in between. I had it 6 years before I was diagnosed, took a small amount of steroids (shot & orals 4 days and asthma inhalor for a month), and I have 1 coinfection of Bartonella. I am optimistic, though! I am sticking with treatment until I at least seem cured.
Thanks again! Yep, just starting the road but hoping that this med will get rid of it. Do you ever really get rid of Lymes?
I will keep posting and asking opinions. Went thru alot of that on the other board. It helps to know that there are other people going thru the same crap.
Thanks again for your responses and I am sure I will be talking to you soon!
I will keep posting and asking opinions. Went thru alot of that on the other board. It helps to know that there are other people going thru the same crap.
Thanks again for your responses and I am sure I will be talking to you soon!
I didn't have IV treatment, so others here who have can answer more specifically. To my understanding, IV antibiotics are an option when oral treatment is not progressing well, sometimes due to a particular mix of co-infections, or that the patient's immune system is having a hard time rallying. Some co-infections are harder to dislodge than others, it seems, but again it all depends on what strains of which infections a person has and how strong the individual's immune system is.
I have come to understand that part of the confusion in the medical community are the large number of variables at work in these infections -- docs and patients generally have come to expect a quick diagnosis, a specific treatment, and a quick cure with no problems. Lyme is none of those, due to the wily bacteria themselves, and unfortunately *politics* plays a large role in Lyme. There is a raging controversy in the medical community about how widespread Lyme is or isn't, how serious it is or isn't, how easy it is to treat and cure (or not), whether the existing tests are adequate, and just about every other aspect of an illness I can think of.
The entrenched view held by the IDSA (Infectious Disease Society of America) is that Lyme is rare, hard to get, and easy to cure, and there is much bitterness from the IDSA toward another group with a different view, ILADS (International Lyme and Associated Diseases Society). Rather than a friendly rivalry to see who can do the best research and develop the best diagnostic tests and treatments, ego has gotten in the way, and the IDSA tends to view ILADS docs as committing malpractice on a daily basis. IDSA formed its views several decades ago based on the earliest research done, and those same researchers are high up in IDSA still. Though those early investigators will retire soon, they have taught decades of MDs that the more progressive ILADS views are nonsense, and the original IDSA views are just fine, thankyouverymuch.
Thus treatment approaches and standards are all over the place, and we patients have to read and learn and make determinations about what diagnostic and treatment approaches we will take. It's a mess, but that's where were are, so dealing with it is all we can do ... hence the thousands of posts on this website and others.
I personally went through 20+ MDs before getting a proper diagnosis, and without that, I don't know where I would be today. So it's doable, but a lot of the effort is placed on the person who should be taken care of by the professionals!
Long story, but just wanted to lay it out in case you are just beginning to venture into Lymelands. Hang in there -- it's doable. I'm proof.
I have come to understand that part of the confusion in the medical community are the large number of variables at work in these infections -- docs and patients generally have come to expect a quick diagnosis, a specific treatment, and a quick cure with no problems. Lyme is none of those, due to the wily bacteria themselves, and unfortunately *politics* plays a large role in Lyme. There is a raging controversy in the medical community about how widespread Lyme is or isn't, how serious it is or isn't, how easy it is to treat and cure (or not), whether the existing tests are adequate, and just about every other aspect of an illness I can think of.
The entrenched view held by the IDSA (Infectious Disease Society of America) is that Lyme is rare, hard to get, and easy to cure, and there is much bitterness from the IDSA toward another group with a different view, ILADS (International Lyme and Associated Diseases Society). Rather than a friendly rivalry to see who can do the best research and develop the best diagnostic tests and treatments, ego has gotten in the way, and the IDSA tends to view ILADS docs as committing malpractice on a daily basis. IDSA formed its views several decades ago based on the earliest research done, and those same researchers are high up in IDSA still. Though those early investigators will retire soon, they have taught decades of MDs that the more progressive ILADS views are nonsense, and the original IDSA views are just fine, thankyouverymuch.
Thus treatment approaches and standards are all over the place, and we patients have to read and learn and make determinations about what diagnostic and treatment approaches we will take. It's a mess, but that's where were are, so dealing with it is all we can do ... hence the thousands of posts on this website and others.
I personally went through 20+ MDs before getting a proper diagnosis, and without that, I don't know where I would be today. So it's doable, but a lot of the effort is placed on the person who should be taken care of by the professionals!
Long story, but just wanted to lay it out in case you are just beginning to venture into Lymelands. Hang in there -- it's doable. I'm proof.
Yes, I have the printout that contains lots of components with either an absent, negative, present or positive in the "your value". I do not have a copy of the original bloodtest, I will get that when I go next Weds.
I also have a copy of the autoimmune disorder test she did. I can retrieve my results online through an account if they are posted by the provider.
Thanks for the info but yes, it is a bit overwhelming.
When do docs typically administer IV antibiotics?
I also have a copy of the autoimmune disorder test she did. I can retrieve my results online through an account if they are posted by the provider.
Thanks for the info but yes, it is a bit overwhelming.
When do docs typically administer IV antibiotics?
Did your doc give you the complete results on the test? It's not a yes/no kind of thing -- Lyme only comes in shades of grey, so the more detail you have (and copies of all test results) the better. Start a binder and keep all the test results you get as you go along. They can be hard to impossible to get later, since doc's office hate spending money on copier paper and toner.
I'm a little surprised that your doc called it a positive test with bands 23 and 41 showing as positive, but band 23 ONLY shows up in a Lyme infection, so good for the doc for being aggressive. Most docs aren't, hence my surprise ... but I'm NOT medically trained, so don't rely on me (or websites generally ... except as a good place to gather data for your own purposes and decisions).
Pasted below, copied from a website called truthaboutlymedisease *******, is a list of all the bands (meaning indicators) on a Lyme test, with the meaning, fwiw. Don't be overwhelmed by this, but it's useful if you are interested in the details either now or later.
Docs read these tests in different ways, because the results are subject to interpretation. Lyme specialists take a broader reading than nonLyme docs, and that's the source of much friction in the medical community. And the patients are, sadly, caught in the middle.
Terminology used below:
"Specific to Lyme" means that ONLY Lyme bacteria would cause a positive result on that band.
"Cross-reactive" means the band could be Lyme or could be something else.
"Borrelia burgdorferi" is the scientific name for the Lyme bacterium, sometimes abbreviated Bb.
===============================================
There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.
Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
(More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/pdfnew/2007_06.pdf
~~~~~~~~~~~~~~~~~~~~~~~
Igenex Western Blot Break Down by band
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain - Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
=========================================
Whew!
I'm a little surprised that your doc called it a positive test with bands 23 and 41 showing as positive, but band 23 ONLY shows up in a Lyme infection, so good for the doc for being aggressive. Most docs aren't, hence my surprise ... but I'm NOT medically trained, so don't rely on me (or websites generally ... except as a good place to gather data for your own purposes and decisions).
Pasted below, copied from a website called truthaboutlymedisease *******, is a list of all the bands (meaning indicators) on a Lyme test, with the meaning, fwiw. Don't be overwhelmed by this, but it's useful if you are interested in the details either now or later.
Docs read these tests in different ways, because the results are subject to interpretation. Lyme specialists take a broader reading than nonLyme docs, and that's the source of much friction in the medical community. And the patients are, sadly, caught in the middle.
Terminology used below:
"Specific to Lyme" means that ONLY Lyme bacteria would cause a positive result on that band.
"Cross-reactive" means the band could be Lyme or could be something else.
"Borrelia burgdorferi" is the scientific name for the Lyme bacterium, sometimes abbreviated Bb.
===============================================
There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.
Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
(More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/pdfnew/2007_06.pdf
~~~~~~~~~~~~~~~~~~~~~~~
Igenex Western Blot Break Down by band
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain - Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
=========================================
Whew!
Welcome to the Lyme group and so sorry you are here.
I agree 100% with Jackie and you need to find an LLMD soon.
I am from the DC metro area and know some doctors there. There is a website called lymemd blog spot, that doctor is from Germantown, MD. I can't remember his name but considering some people drive to different states for an LLMD, , Germantown isn't bad. I would be happy to give you other names but I think he is the closest to you, that is any good.
Keep us posted. Good luck.
I agree 100% with Jackie and you need to find an LLMD soon.
I am from the DC metro area and know some doctors there. There is a website called lymemd blog spot, that doctor is from Germantown, MD. I can't remember his name but considering some people drive to different states for an LLMD, , Germantown isn't bad. I would be happy to give you other names but I think he is the closest to you, that is any good.
Keep us posted. Good luck.
Thanks for your input Jackie it is very much appreciated as well as your welcome. I have been a member of medhelp for several years due to hepC treatment about 5 years ago.
I am glad I was one of the lucky ones that got diagnosed also as many do not. I JUST KNEW something wasnt right.
My second test (after the 30 day antibiotics) was as follows:
Western Blot
Everything was absent except for
IgM P41 Ab - Present
IgM P23 Ab Present
Lyme IgM Wb Positive
CAn you explain what those mean?
I will also take your advice and start my research on LLMD's in my area, I am on the Eastern Shore of Maryland.
Shari
I am glad I was one of the lucky ones that got diagnosed also as many do not. I JUST KNEW something wasnt right.
My second test (after the 30 day antibiotics) was as follows:
Western Blot
Everything was absent except for
IgM P41 Ab - Present
IgM P23 Ab Present
Lyme IgM Wb Positive
CAn you explain what those mean?
I will also take your advice and start my research on LLMD's in my area, I am on the Eastern Shore of Maryland.
Shari
Welcome -- sorry to hear you've joined the ever-growing ranks of Lyme patients, but glad you got a diagnosis!
Others will chime in here, but my best advice is to find a Lyme specialist for a consultation. You can get a referral from
contact [at] ilads [dot] org
ILADS is the main voluntary physician's group for those who think progressive thoughts about Lyme. There is a terrible split in the medical community on Lyme diagnosis and treatment, and unfortunately that causes delay in treatment. You will see the term "LLMD", which is patient slang for 'Lyme-literate MD', one who has a broader view of Lyme and its treatment.
"Still very achy" doesn't surprise me. Biaxin, esp alone, is not the usual treatment for Lyme. The Lyme bacterium is in the same family as the spirochete that causes syphilis, and can do terrible damage to the mind and body if not treated fully, and preferably treated *promptly.*
It sounds like you've caught the infection early, but you REALLY need to see a Lyme specialist and do it quickly. Others will chime in here with their experiences, but I can give you no more important advice than to get yourself to an LLMD, and do it fast.
Lyme is treated with a combination of two antibiotics: one to break open the slimy shields ('biofilms') the bacteria conceal themselves in and that protect them from the action of antibiotics, and one to actually kill the bacteria once the biofilms are breached.
The next step is not usually IV antibiotics -- those are usually reserved for those who have been long infected, and IV has certain risks of its own (infection of the IV line site). But time is important in treating Lyme to avoid the disease getting entrenched.
In your situation, I would not delay finding an LLMD, partly to be evaluated for other diseases that the Lyme ticks carry perhaps half the time. These diseases are separate from Lyme and need different diagnostic testing and often different antibiotics: babesiosis, bartonella, ehrlichia, and others ("co-infections").
If you do not already have copies of ALL your tests done that led to the Lyme diagnosis, I strongly suggest you get copies of all of them (both positive and negative tests; whatever was done) and always keeps copies of ALL test results -- it is not uncommon to change docs during treatment, simply because Lyme and its co-infections are sometimes difficult to tease out, and the testing is far from precise. It takes a doc who is wise to the mysteries of Lyme to be alert to these possibilities and to be nimble enough to change tactics and treatment if needed.
This is prime Lyme diagnosis season, since the ticks are everywhere in the summer, so you're right in that window. I'm not a crank, I'm very much a believer in mainstream medicine, but Lyme is a special case: it is life through the medical looking-glass.
Find an LLMD is the MOST important advice I can offer. Please don't delay!
Others will chime in here, but my best advice is to find a Lyme specialist for a consultation. You can get a referral from
contact [at] ilads [dot] org
ILADS is the main voluntary physician's group for those who think progressive thoughts about Lyme. There is a terrible split in the medical community on Lyme diagnosis and treatment, and unfortunately that causes delay in treatment. You will see the term "LLMD", which is patient slang for 'Lyme-literate MD', one who has a broader view of Lyme and its treatment.
"Still very achy" doesn't surprise me. Biaxin, esp alone, is not the usual treatment for Lyme. The Lyme bacterium is in the same family as the spirochete that causes syphilis, and can do terrible damage to the mind and body if not treated fully, and preferably treated *promptly.*
It sounds like you've caught the infection early, but you REALLY need to see a Lyme specialist and do it quickly. Others will chime in here with their experiences, but I can give you no more important advice than to get yourself to an LLMD, and do it fast.
Lyme is treated with a combination of two antibiotics: one to break open the slimy shields ('biofilms') the bacteria conceal themselves in and that protect them from the action of antibiotics, and one to actually kill the bacteria once the biofilms are breached.
The next step is not usually IV antibiotics -- those are usually reserved for those who have been long infected, and IV has certain risks of its own (infection of the IV line site). But time is important in treating Lyme to avoid the disease getting entrenched.
In your situation, I would not delay finding an LLMD, partly to be evaluated for other diseases that the Lyme ticks carry perhaps half the time. These diseases are separate from Lyme and need different diagnostic testing and often different antibiotics: babesiosis, bartonella, ehrlichia, and others ("co-infections").
If you do not already have copies of ALL your tests done that led to the Lyme diagnosis, I strongly suggest you get copies of all of them (both positive and negative tests; whatever was done) and always keeps copies of ALL test results -- it is not uncommon to change docs during treatment, simply because Lyme and its co-infections are sometimes difficult to tease out, and the testing is far from precise. It takes a doc who is wise to the mysteries of Lyme to be alert to these possibilities and to be nimble enough to change tactics and treatment if needed.
This is prime Lyme diagnosis season, since the ticks are everywhere in the summer, so you're right in that window. I'm not a crank, I'm very much a believer in mainstream medicine, but Lyme is a special case: it is life through the medical looking-glass.
Find an LLMD is the MOST important advice I can offer. Please don't delay!
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