Aa
Opinions, please?
The doctor I saw yesterday seemed competent and seemed to listen and process my list of symptoms. But I am wondering about his treatment plan after reading some of your responses in meggie1972's "Antibiotic Treatment Question" thread and after thinking about it this morning.
I know that this Dx is largely clinical, but does it seem odd that he is willing to start my ABx treatment plan before my Igenex test results are back. I really don't want to wait the 3-4 weeks for the results but still, this surprises me. Is this normal or should I consider it a red flag?
Also, he prescribed an initial 2 months of antibiotics, saying that I would be on one of them for the entire 2 months along with one of them for month 1, and changing to another supplemental for month 2. They were all sent to a mail order pharmacy and I don't know which is which. All I can access through the online pharmacy is the names, but no directions. They include: Cefdinir, Doxycycline, and Azithromycin along with Nystatin and probiotics to help combat the side effects of the antibiotics. Is this outdated to prescribe the Doxy at this stage? If I have it, I've had it for at least 6 months (my first really horrible go round) but more likely up to 10 years (when I first started having mild to moderate symptoms and running a fever most of the time).
He did want me to supplement this Rx plan with some herbal type supplements, also. Cat's Claw and some other things that are antiviral and antifungal, and some detox things. He had all of these supplements for sale, which I know some of you have mentioned as a red flag, but he didn't seem upset that I declined to buy them when I told him that I already have the same or similar things at home. I would not be opposed to trying his regime once I run out of my own supply and I can't help but think that would be just as advisable as periodically switching up the antibiotics. My reluctance to buy any of his supplements at this point was probably somewhat of a test.
The Cat's Claw concerns me a bit because I was taking it before and at the beginning of my worst episode, trying to combat the cold/flu bugs I tend to get so frequently when working my 24/7 schedule. I quit taking it thinking that I was overstimulating my immune system, which would be bad IF I really do have MS, but he thinks I was bringing on a Herx by using that in combination with some other similar acting herbs. If Herxing is THAT bad, it is definitely going to be worse than I thought! I am a bit uncomfortable w/ that because he was pretty insistent that Cat's Claw is more of a natural antibiotic than an immunity booster, but I've looked it up in all of my books this morning and the consensus of opinion is that it is both.
I'm not usually indecisive, but this journey of trying to figure out what is causing my health issues had definitely felt like a maze lately and I will admit to doubting my sense of direction after all the dead ends and wrong paths!
I know that this Dx is largely clinical, but does it seem odd that he is willing to start my ABx treatment plan before my Igenex test results are back. I really don't want to wait the 3-4 weeks for the results but still, this surprises me. Is this normal or should I consider it a red flag?
Also, he prescribed an initial 2 months of antibiotics, saying that I would be on one of them for the entire 2 months along with one of them for month 1, and changing to another supplemental for month 2. They were all sent to a mail order pharmacy and I don't know which is which. All I can access through the online pharmacy is the names, but no directions. They include: Cefdinir, Doxycycline, and Azithromycin along with Nystatin and probiotics to help combat the side effects of the antibiotics. Is this outdated to prescribe the Doxy at this stage? If I have it, I've had it for at least 6 months (my first really horrible go round) but more likely up to 10 years (when I first started having mild to moderate symptoms and running a fever most of the time).
He did want me to supplement this Rx plan with some herbal type supplements, also. Cat's Claw and some other things that are antiviral and antifungal, and some detox things. He had all of these supplements for sale, which I know some of you have mentioned as a red flag, but he didn't seem upset that I declined to buy them when I told him that I already have the same or similar things at home. I would not be opposed to trying his regime once I run out of my own supply and I can't help but think that would be just as advisable as periodically switching up the antibiotics. My reluctance to buy any of his supplements at this point was probably somewhat of a test.
The Cat's Claw concerns me a bit because I was taking it before and at the beginning of my worst episode, trying to combat the cold/flu bugs I tend to get so frequently when working my 24/7 schedule. I quit taking it thinking that I was overstimulating my immune system, which would be bad IF I really do have MS, but he thinks I was bringing on a Herx by using that in combination with some other similar acting herbs. If Herxing is THAT bad, it is definitely going to be worse than I thought! I am a bit uncomfortable w/ that because he was pretty insistent that Cat's Claw is more of a natural antibiotic than an immunity booster, but I've looked it up in all of my books this morning and the consensus of opinion is that it is both.
I'm not usually indecisive, but this journey of trying to figure out what is causing my health issues had definitely felt like a maze lately and I will admit to doubting my sense of direction after all the dead ends and wrong paths!
I remember the same feeling of doubt after my consultation. The whole thing just felt like we were sneaking around behind the back of the medical establishment. I am totally over that, now.
My husband was especially annoyed at buying supplements from the doctor. My first batch of 3 supplements cost well over $200. We talked it through and decided that I would try everything they recommended and if I could tell that it helped, I would continue it. I have since gone back to two supplements that I missed once I ran out. I have also added supplements on my own based on the GI analysis that showed problems in my gut.
Oh, yeah, and I will be taking Meriva Curcumin for a while, even if I can't tell it's helping or not. It is a known antinflammatory and In places with a lot of curcumin in the diet, Alzheimer's rates are much lower. I am hoping it will reduce inflammation in my brain.
Another reason is if they felt strongly I should be on it...specifically the anti-Babesia herbals I took to see if I had a herx or not. (I don't...my shortness of breath seems to be an unusually bad symptom of Lyme.)
The other decision was to buy nothing from the doctor's office. They don't push their inventory, they just carry it as a convenience for some people who don't want to order it online. Now, I ask if they recommend a particular brand, and then I go find it for the cheapest price I can, usually about 20-25% cheaper than the doctor's price.
We feel that having a policy not to buy anything from the doctor's office removes any incentive for them, conscious or not, to recommend something because of the profit margin. I truly believe they don't do this because so many of the patients are paying their own way and are very cost conscious. But if someone seems irritated that you want to buy your supplements elsewhere, that would be a concern to me.
I have learned that just as we all have our own unique story of Lyme and its progression, we all have a unique journey through treatment. Herx? No herx? Drug tolerance and reactions, pace of improvement, etc.
It has taken me awhile to stop creating expectations for myself about what will happen. I like to know what's coming, but in reality, nobody can tell me to the level of detail that I want. I have to accept what comes as it comes, and just be a "good" patient and do what my doctor asks me to. My LLMD and PA have earned my trust. I think some initial skepticism is a good thing... It makes us less likely to get ripped off.
My husband was especially annoyed at buying supplements from the doctor. My first batch of 3 supplements cost well over $200. We talked it through and decided that I would try everything they recommended and if I could tell that it helped, I would continue it. I have since gone back to two supplements that I missed once I ran out. I have also added supplements on my own based on the GI analysis that showed problems in my gut.
Oh, yeah, and I will be taking Meriva Curcumin for a while, even if I can't tell it's helping or not. It is a known antinflammatory and In places with a lot of curcumin in the diet, Alzheimer's rates are much lower. I am hoping it will reduce inflammation in my brain.
Another reason is if they felt strongly I should be on it...specifically the anti-Babesia herbals I took to see if I had a herx or not. (I don't...my shortness of breath seems to be an unusually bad symptom of Lyme.)
The other decision was to buy nothing from the doctor's office. They don't push their inventory, they just carry it as a convenience for some people who don't want to order it online. Now, I ask if they recommend a particular brand, and then I go find it for the cheapest price I can, usually about 20-25% cheaper than the doctor's price.
We feel that having a policy not to buy anything from the doctor's office removes any incentive for them, conscious or not, to recommend something because of the profit margin. I truly believe they don't do this because so many of the patients are paying their own way and are very cost conscious. But if someone seems irritated that you want to buy your supplements elsewhere, that would be a concern to me.
I have learned that just as we all have our own unique story of Lyme and its progression, we all have a unique journey through treatment. Herx? No herx? Drug tolerance and reactions, pace of improvement, etc.
It has taken me awhile to stop creating expectations for myself about what will happen. I like to know what's coming, but in reality, nobody can tell me to the level of detail that I want. I have to accept what comes as it comes, and just be a "good" patient and do what my doctor asks me to. My LLMD and PA have earned my trust. I think some initial skepticism is a good thing... It makes us less likely to get ripped off.
Hi Valkyrie,
I understand you feel worried about embarking on a long course of antibiotic tretment without a specific blood test, but most good lyme docs do treat some of their patients based on symptoms alone because the blood tests are so unreliable.
There is nothing in the treatment plan you described that is raising alarm bells for me - it all sounds fairly standard.
Doxy is definitely used a lot including in late lyme, along with other abx.
Adding in herbs is a good idea in my opinion. The fact your doc sells them is not necessarily a sign if shiftines - my doc has an agreement with a gym next to his office that they stock all the herbs he prescribes, which is convenient and also you know you are getting brands he has checked out as good quality.
I woiuld suggest it might be a good idea for you to have a follow up appointment with your doc to talk about your past reaction to cats claw and any other queries about what he is prescribing you, and ask what support he will give you to help you through any herx that may occur.
eg. my doc gets patients to email him, so that wherever he is he can always answer emergency messages the same day. As sson as you get a herx, he tells you exactly what to do, what lower to dose to go onto, what painkillers you can take to help you bear it, etc.
I understand you feel worried about embarking on a long course of antibiotic tretment without a specific blood test, but most good lyme docs do treat some of their patients based on symptoms alone because the blood tests are so unreliable.
There is nothing in the treatment plan you described that is raising alarm bells for me - it all sounds fairly standard.
Doxy is definitely used a lot including in late lyme, along with other abx.
Adding in herbs is a good idea in my opinion. The fact your doc sells them is not necessarily a sign if shiftines - my doc has an agreement with a gym next to his office that they stock all the herbs he prescribes, which is convenient and also you know you are getting brands he has checked out as good quality.
I woiuld suggest it might be a good idea for you to have a follow up appointment with your doc to talk about your past reaction to cats claw and any other queries about what he is prescribing you, and ask what support he will give you to help you through any herx that may occur.
eg. my doc gets patients to email him, so that wherever he is he can always answer emergency messages the same day. As sson as you get a herx, he tells you exactly what to do, what lower to dose to go onto, what painkillers you can take to help you bear it, etc.
I know from many people on my different support groups and in my own case that most LLMD's will start you on antibiotics based on your symptoms before getting test results back. I was one of the lucky ones, my IgenX co-infection test, when it came back did show positives the first time around but many people I know including one good friend, none of her tests showed positive for years so in those cases the good LLMD will treat you based on symptoms alone.
Well, I don't really have solid answers for you, but if knowing that you aren't alone in your doubts, concerns, questions and yet sort of feel like you should do it anyway because it not only "might" be Lyme it sounds more like it is all the time--that I can help you with.
I didn't go all the way back to read your whole story, so I'm not sure how "not sure" you are about your Lyme diagnosis--but is your gut talking to you at all? Mine did/does--to the point that I was having dreams that my mother, who has been dead for years now, came to talk with me and sat me down and said, now look Hon, you have Lyme, and it's a tough nut to crack, but you've got to do SOMETHING. I think it was a dream--an all out dream--not necessarily divine intervention or a message or anything, but I was struggling with these weird symptoms and no answers and this constant niggling wonder about whether or not it could be Lyme and then I had that dream and finally I called and found myself an LLMD.
Not the end of the story though. I never had a rash, I don't remember a tick, though I live in a BRIGHT RED SPOT on the Lyme infestation map and we camp and hike all the time--so my risk factors are super high. My husband shoots at least one deer per year and we are avid venison eaters, so, yeah, I'm around ticks--but I don't remember HAVING a tick since the 90's. Every one of my 4 dogs tests positive for Lyme disease. I myself tested Serum positive for Lyme disease about 6 years ago, but when they did the Western Blot they said--not Lyme--and I have no idea what that "meant." And it was so long ago that the record of the test is long gone--other than a note saying "not Lyme."
But, I don't have "arthritis" and like I said, I never had a "rash." I have a vague fogginess and constant dizzyness and awhile back I was having severe issues with fatigue etc, and I've had palpitations over the past few years as well. Also--scary as heck--I've had serius anisocoria--one pupil bigger than the other--I thought I had a brain tumor--but the MRI was fine. BOTH OF THEM.
The LLMD gave me ABX to take before my tests came back too--and I took them for about 10 days, but it didn't "feel right." I didn't have classic symptoms and it just felt like she was giving me meds because I came to her office. And wouldn't you know it...the serum test and western blot came back negative and I threw my hands up--not lyme. Great! Now what.
Well. One more test. They tested for specific Lyme protiens and cytokines that react to specific Lyme markers and I tested so positive that they called me before my appointment to come in early.
Yet--I still wonder. Am I "really" positive? Is it "really" lyme? I haven't seen a lot about this test out there. But this LLMD was a skeptic pre-her own diagnosis and she actually poo poos the naturapathic stuff--though her partner doesn't. She says "maybe" but she doesn't see the "proof" that it does much. And I ask her point blank--do you think I "really" have Lyme? And she answers--point blank--"I don't know for sure--but it is acting weird enough to be Lyme and you have a lot of the clinical characteristics of Lyme and some of the classically positive tests for Lyme and I feel more comfortable treating you for Lyme than not treating you." And I guess that answer made me feel--totally and completely non-confident in modern medicine and very confident in the honesty and well meaning efforts of my doctor. SO--we are fighting whatever this is together in the only way we know how to, and we continue to monitor for other posibilities along the way.
It's all you CAN do in this currently wacky and unknown world of Lyme as far as I can tell.
Good luck!!!
I didn't go all the way back to read your whole story, so I'm not sure how "not sure" you are about your Lyme diagnosis--but is your gut talking to you at all? Mine did/does--to the point that I was having dreams that my mother, who has been dead for years now, came to talk with me and sat me down and said, now look Hon, you have Lyme, and it's a tough nut to crack, but you've got to do SOMETHING. I think it was a dream--an all out dream--not necessarily divine intervention or a message or anything, but I was struggling with these weird symptoms and no answers and this constant niggling wonder about whether or not it could be Lyme and then I had that dream and finally I called and found myself an LLMD.
Not the end of the story though. I never had a rash, I don't remember a tick, though I live in a BRIGHT RED SPOT on the Lyme infestation map and we camp and hike all the time--so my risk factors are super high. My husband shoots at least one deer per year and we are avid venison eaters, so, yeah, I'm around ticks--but I don't remember HAVING a tick since the 90's. Every one of my 4 dogs tests positive for Lyme disease. I myself tested Serum positive for Lyme disease about 6 years ago, but when they did the Western Blot they said--not Lyme--and I have no idea what that "meant." And it was so long ago that the record of the test is long gone--other than a note saying "not Lyme."
But, I don't have "arthritis" and like I said, I never had a "rash." I have a vague fogginess and constant dizzyness and awhile back I was having severe issues with fatigue etc, and I've had palpitations over the past few years as well. Also--scary as heck--I've had serius anisocoria--one pupil bigger than the other--I thought I had a brain tumor--but the MRI was fine. BOTH OF THEM.
The LLMD gave me ABX to take before my tests came back too--and I took them for about 10 days, but it didn't "feel right." I didn't have classic symptoms and it just felt like she was giving me meds because I came to her office. And wouldn't you know it...the serum test and western blot came back negative and I threw my hands up--not lyme. Great! Now what.
Well. One more test. They tested for specific Lyme protiens and cytokines that react to specific Lyme markers and I tested so positive that they called me before my appointment to come in early.
Yet--I still wonder. Am I "really" positive? Is it "really" lyme? I haven't seen a lot about this test out there. But this LLMD was a skeptic pre-her own diagnosis and she actually poo poos the naturapathic stuff--though her partner doesn't. She says "maybe" but she doesn't see the "proof" that it does much. And I ask her point blank--do you think I "really" have Lyme? And she answers--point blank--"I don't know for sure--but it is acting weird enough to be Lyme and you have a lot of the clinical characteristics of Lyme and some of the classically positive tests for Lyme and I feel more comfortable treating you for Lyme than not treating you." And I guess that answer made me feel--totally and completely non-confident in modern medicine and very confident in the honesty and well meaning efforts of my doctor. SO--we are fighting whatever this is together in the only way we know how to, and we continue to monitor for other posibilities along the way.
It's all you CAN do in this currently wacky and unknown world of Lyme as far as I can tell.
Good luck!!!
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