Aa
Anybody being treated with antibiotics
I was diagnosed with MS, and recently diagnosed as having Lyme disease (positive western blot).
Is anyone being treated with antibiotics, IV or oral treatments for Lyme and/or MS?
And also if you are being treated with antibiotics, which doctor do you have - Neurologist, Lyme Doctor, General Practitioner?
Also, is your treatment covered by your Insurance?
Please let me know and thanks for your help,
Rob
Is anyone being treated with antibiotics, IV or oral treatments for Lyme and/or MS?
And also if you are being treated with antibiotics, which doctor do you have - Neurologist, Lyme Doctor, General Practitioner?
Also, is your treatment covered by your Insurance?
Please let me know and thanks for your help,
Rob
On a lighter note, I'm on antibiotics for a kidney infection. Does that count?
I'm just play'in with you a little bit, Rob.
Carol
I'm just play'in with you a little bit, Rob.
Carol
Have you run into one of the great frustrations of Lyme patients? that they need longterm antibiotics and insurance won't cover it? It has been the sybject of much activism and lobbying before Congress. The med (Rocephin) he ordered for you is considered one of the best to start on, but it is EXPENSIVE - at least it used to be.
Quix
Quix
Quix,
The Lyme doctor told me that my insurance would cover the Rocephin treatment bacause of the results of western blot. So far they have paid for everything but I am waiting to see if they will reimburse me for the IgeneX Western Blot test. Also, according to several people on LymeNet that are seing LLMD's, their treatments are covered by insurance also. I believe it really depends on your diagnosis of Lyme Disease, I fortunately tested really positive.
But, the LLMD seems to be pushing supplements, detox diet, and homeopathic medicines on me (which I am reluctant to do/take), I do not know if this is typical with Lyme doctors or the Lyme disease treatment in general, or can it be just treated with the antibiotics. It seems some people do a lot of different things including detox diet, supplements etc.... To me this diet seems horrible due to the fact you do not eat any normal things and the supplements are hundreds of dallors. But I am hearing that it is good to do.
Also, unlike the MS steroid IV treatment that was no cost, I am paying a copay every time I go in for this IV Rocephin treatment which calculates out to another 320.00 a month. I know it might not seem like a lot to some, but it is huge for me.
For me, its just everything is so complicated!
Any thoughts
The Lyme doctor told me that my insurance would cover the Rocephin treatment bacause of the results of western blot. So far they have paid for everything but I am waiting to see if they will reimburse me for the IgeneX Western Blot test. Also, according to several people on LymeNet that are seing LLMD's, their treatments are covered by insurance also. I believe it really depends on your diagnosis of Lyme Disease, I fortunately tested really positive.
But, the LLMD seems to be pushing supplements, detox diet, and homeopathic medicines on me (which I am reluctant to do/take), I do not know if this is typical with Lyme doctors or the Lyme disease treatment in general, or can it be just treated with the antibiotics. It seems some people do a lot of different things including detox diet, supplements etc.... To me this diet seems horrible due to the fact you do not eat any normal things and the supplements are hundreds of dallors. But I am hearing that it is good to do.
Also, unlike the MS steroid IV treatment that was no cost, I am paying a copay every time I go in for this IV Rocephin treatment which calculates out to another 320.00 a month. I know it might not seem like a lot to some, but it is huge for me.
For me, its just everything is so complicated!
Any thoughts
Enter: Stage left - The Cynic.... I don't believe the "detox" has any scientific validity. I suspect if you google "detoxification" you will find dozens of methods guaranteed to make you fell better. The supplments, agian, are of dubious value, though through my opwn reseach I take a number which have shown promise in Evidence-based medicine.
People who do it say they feel better. At $100's of they had better feel good.
I gather you are getting the treatments at his office. That is what the hospital infusion centers are for. Outpatient infusions of whatever, steroids, antibiotics, chemo. My insurance has no copay for the infusion center ,but it would if I had the procedure in the Dr's office. If the LLMD even drops in on you he can charge an office visit to the insurance and then a copay from you. This guy should have hospital privileges somewhere, but, even if not, he should be able to write a prescription for "So much Rocephin, IV over such a length of time and how often". An extra $320 per month is huge, especially if there is a way around it. The doc should have ZERO problem having you do it at a close by Infusion Center.
That's my take. Do what you can, look hard at the "extras," and make your insurance work in your favor. If the doc has problems with this, ask him why.
Good Luck
Quix
People who do it say they feel better. At $100's of they had better feel good.
I gather you are getting the treatments at his office. That is what the hospital infusion centers are for. Outpatient infusions of whatever, steroids, antibiotics, chemo. My insurance has no copay for the infusion center ,but it would if I had the procedure in the Dr's office. If the LLMD even drops in on you he can charge an office visit to the insurance and then a copay from you. This guy should have hospital privileges somewhere, but, even if not, he should be able to write a prescription for "So much Rocephin, IV over such a length of time and how often". An extra $320 per month is huge, especially if there is a way around it. The doc should have ZERO problem having you do it at a close by Infusion Center.
That's my take. Do what you can, look hard at the "extras," and make your insurance work in your favor. If the doc has problems with this, ask him why.
Good Luck
Quix
Hey Rob,
Sorry lyme treatment isn't yet mainstream, and all this confusion is pretty normal.
Each doctor is different. For instance, my doc, an Internist doesn't get involved with vits or detoxing etc..He says he didn't learn about those things in Med school.
He did mention CoQ10 being beneficial and he does recommend getting my B12 way up..(which I do). Methylcobalamin of course. The reason for so many with LD to talk about vitamins and minerals is simple: Our immune systems are weak and we look to these over the counter miracles to lend a hand..
Do they work? don't know, I take Magnesium, B12 -Methylcobalamin 15mgs a day, NAC, Vit C CoQ10 Vit E and lastly Carlson's Fish Oil.
Seems like a lot, but not as much as some.
My doc is Very Conservative....but very good.
If he doesn't have solid research to back things up he sides steps things.
I detox, but only for reasons to get rid of the "die-off".. I use Chlorella, and take Epson Salt Baths. Both of these are NOT harmful, and not expensive.
If I were you, I would take a deep breath, start the IV and ask more questions about the need to do the metal detoxing at this point...
Will treatment take care of these "metals"? maybe,,,
and I say maybe because I never walked down that road...and I'm improving.
Eliminating sugar, yeast from your diet is always a good thing while in treatment; especially IF you started out with a yeast problem....
I don't follow that strick a diet, but I don't have yeast problems; and this is after being in treatment for a year now..
I have only been on oral abx:
Combos like Minocycline, Diflucan, Rifamphin, Tindamax, Azithromycian, Tetracycline, Plaquenil, Biaxin.
My lesions are lighter, non have enhanced, don't have new lesions, TN is soooo much better, numbness, tingles are better, L'Hermittes better, haven't had any new ON.
It comes down to your relationship with this doctor. If you're comfortable with him; give him a chance..
If not, there are others out there. Most of us travel "hours" to see our docs.
Glad you have a diagnosis; that of course is the most important thing of all.
the best,
tory
Sorry lyme treatment isn't yet mainstream, and all this confusion is pretty normal.
Each doctor is different. For instance, my doc, an Internist doesn't get involved with vits or detoxing etc..He says he didn't learn about those things in Med school.
He did mention CoQ10 being beneficial and he does recommend getting my B12 way up..(which I do). Methylcobalamin of course. The reason for so many with LD to talk about vitamins and minerals is simple: Our immune systems are weak and we look to these over the counter miracles to lend a hand..
Do they work? don't know, I take Magnesium, B12 -Methylcobalamin 15mgs a day, NAC, Vit C CoQ10 Vit E and lastly Carlson's Fish Oil.
Seems like a lot, but not as much as some.
My doc is Very Conservative....but very good.
If he doesn't have solid research to back things up he sides steps things.
I detox, but only for reasons to get rid of the "die-off".. I use Chlorella, and take Epson Salt Baths. Both of these are NOT harmful, and not expensive.
If I were you, I would take a deep breath, start the IV and ask more questions about the need to do the metal detoxing at this point...
Will treatment take care of these "metals"? maybe,,,
and I say maybe because I never walked down that road...and I'm improving.
Eliminating sugar, yeast from your diet is always a good thing while in treatment; especially IF you started out with a yeast problem....
I don't follow that strick a diet, but I don't have yeast problems; and this is after being in treatment for a year now..
I have only been on oral abx:
Combos like Minocycline, Diflucan, Rifamphin, Tindamax, Azithromycian, Tetracycline, Plaquenil, Biaxin.
My lesions are lighter, non have enhanced, don't have new lesions, TN is soooo much better, numbness, tingles are better, L'Hermittes better, haven't had any new ON.
It comes down to your relationship with this doctor. If you're comfortable with him; give him a chance..
If not, there are others out there. Most of us travel "hours" to see our docs.
Glad you have a diagnosis; that of course is the most important thing of all.
the best,
tory
Okay, I know this really is not the place to ask about treatment for Lymes but there are a few questions I have got to ask.
1. Detoxing with epsom salt baths. Just how is this detoxing. Prolonged exposue to epsom salts will result in magnesium sulfate being absorbed into the skin. This may promote a temproary feeling of relief for inflammation but also puts people with heart conditions and electrolyte imbalances at risk. so, if you are also taking a magnesium supplement (which BTW is great for helping ease muscle pain) you are putting yourself at risk for hypermagnesia by doing both.
2. Chlorella. Interesting little source of anti-oxidents, but you really need to buy from sources that can verify it was harvested from coliform bacteria free waters, unfortunately there is usually no way to tell based on the labels. Plus it must be cracked hull chlorella or it passes through human digestive tracts undigested. (we don't have the natural flora to break down the hulls)
3. Detoxing to get rid of the "die off" requires more than just taking a pill. Research has shown that the free radicals formed are bound to the antioxidents and pass through from our bodies as sweat. (same can be said for some "die off" as you put it) Further more this must take effect within two hours. So, in order to get benefit from your chlorella (and vitamin C can do the same thing) you must exercise vigoursly enough to sweat for twenty minutes within two hours of taking it.
4. CoQ10 in some people may produce the side effects of dizziness, irritability, headache, fatigue, heartburn, and visual sensitivity to light. Could be confusing for folks who already have these as symptoms of their disease. Is it the supplement or the disease?????????????????????
5. "Will treatment take care of these "metals"? maybe,,, " What metals are we talking about? I din't know that the little critters responsible for Lymes aided and abetted unwanted metals from hanging out in my body.
6. 99% of the time you put someone on long term antibiotic therapy you will have a person with a yeast problem. That's a fact, plain and simple. Our bodies are a battle zone of bacterias vs yeast. antibiotics kill bacteria and the yeast get a foothold.
Sorry Tory, I am by profession a health care provider, by religion a healer who would prefer using herbals and other natural sources for healing but by practicality (and a strong background in medical microbiology and epidemiology) I'm someone who delves deep into ANY treatment recommended by my (or anyone else's) doctors before trying it.
Moeck
1. Detoxing with epsom salt baths. Just how is this detoxing. Prolonged exposue to epsom salts will result in magnesium sulfate being absorbed into the skin. This may promote a temproary feeling of relief for inflammation but also puts people with heart conditions and electrolyte imbalances at risk. so, if you are also taking a magnesium supplement (which BTW is great for helping ease muscle pain) you are putting yourself at risk for hypermagnesia by doing both.
2. Chlorella. Interesting little source of anti-oxidents, but you really need to buy from sources that can verify it was harvested from coliform bacteria free waters, unfortunately there is usually no way to tell based on the labels. Plus it must be cracked hull chlorella or it passes through human digestive tracts undigested. (we don't have the natural flora to break down the hulls)
3. Detoxing to get rid of the "die off" requires more than just taking a pill. Research has shown that the free radicals formed are bound to the antioxidents and pass through from our bodies as sweat. (same can be said for some "die off" as you put it) Further more this must take effect within two hours. So, in order to get benefit from your chlorella (and vitamin C can do the same thing) you must exercise vigoursly enough to sweat for twenty minutes within two hours of taking it.
4. CoQ10 in some people may produce the side effects of dizziness, irritability, headache, fatigue, heartburn, and visual sensitivity to light. Could be confusing for folks who already have these as symptoms of their disease. Is it the supplement or the disease?????????????????????
5. "Will treatment take care of these "metals"? maybe,,, " What metals are we talking about? I din't know that the little critters responsible for Lymes aided and abetted unwanted metals from hanging out in my body.
6. 99% of the time you put someone on long term antibiotic therapy you will have a person with a yeast problem. That's a fact, plain and simple. Our bodies are a battle zone of bacterias vs yeast. antibiotics kill bacteria and the yeast get a foothold.
Sorry Tory, I am by profession a health care provider, by religion a healer who would prefer using herbals and other natural sources for healing but by practicality (and a strong background in medical microbiology and epidemiology) I'm someone who delves deep into ANY treatment recommended by my (or anyone else's) doctors before trying it.
Moeck
Thanks for your opinion. I think it's responses by you that make these boards worthwhile.
Like you I don't take my illness lightly, and I have chosen a path that has research behind it...to back it up.
I won't get into the whole detoxing thing cause I already did. Most importantly was my doctors point of view on things...which he doesn't have. Other than long term antibioitcs for people like me..
The issue behind "an infectious cause" is a serious one. And with each day, it's coming to the forefront and more doctors are learning about it.
I can only say, with my latest MRI's in 20+ years I have never had a lesion lighten. For me, enough said, it's my proof. and then of course how much BETTER I feel each day.
btw, I've had 2 colds in the past year while on antibiotics.
Sorry Moeck,
I think you need to do more reading.
Peace
Like you I don't take my illness lightly, and I have chosen a path that has research behind it...to back it up.
I won't get into the whole detoxing thing cause I already did. Most importantly was my doctors point of view on things...which he doesn't have. Other than long term antibioitcs for people like me..
The issue behind "an infectious cause" is a serious one. And with each day, it's coming to the forefront and more doctors are learning about it.
I can only say, with my latest MRI's in 20+ years I have never had a lesion lighten. For me, enough said, it's my proof. and then of course how much BETTER I feel each day.
btw, I've had 2 colds in the past year while on antibiotics.
Sorry Moeck,
I think you need to do more reading.
Peace
"The issue behind "an infectious cause" is a serious one. And with each day, it's coming to the forefront and more doctors are learning about it. "
An infectious cause of what????????????????????????????????????
I was living an hour from Lyme, CT when this bug was isolated and named. I have a friend who lived in Lyme and was among the first diagnosed and is now (20 or so years later) in a wheel chair.
I have read the idea that all neuro disorders are caused by neuro toxins that are accumulating in our livers and must be "banned" from our bodies by detoxification. I have been to the Lyme sites and frankly found it frustrating to navigate some of them to actually read the clinical trials and medical abstracts. You did tell me to read more. Actually right now I am reading "Stiff" by Mary Roach, great book about what is done to our bodies after death from cannabilism to car crash testing.
Moeck
An infectious cause of what????????????????????????????????????
I was living an hour from Lyme, CT when this bug was isolated and named. I have a friend who lived in Lyme and was among the first diagnosed and is now (20 or so years later) in a wheel chair.
I have read the idea that all neuro disorders are caused by neuro toxins that are accumulating in our livers and must be "banned" from our bodies by detoxification. I have been to the Lyme sites and frankly found it frustrating to navigate some of them to actually read the clinical trials and medical abstracts. You did tell me to read more. Actually right now I am reading "Stiff" by Mary Roach, great book about what is done to our bodies after death from cannabilism to car crash testing.
Moeck
I think you confused me..
I don't want to fight with you or your thoughts on things--ok?
Having "thoughts" or opinions are healthy and belong to ourselves..
But, I'm now talking about facts! and they are out there..Not being able to navigate on a site???
You sound way too intelligent.
You lived in Lyme, CT you say it was isolated?
I say migrating birds.....
Your friend who now is in a wheelchair? so sorry
I bet he was treated using the IDSA guidelines? 6 wks and done. they-
IDSA don't recognize "Chronic Lyme"
You might want to try The Widening Circle by Polly Murray
a very good read.
I don't want to fight with you or your thoughts on things--ok?
Having "thoughts" or opinions are healthy and belong to ourselves..
But, I'm now talking about facts! and they are out there..Not being able to navigate on a site???
You sound way too intelligent.
You lived in Lyme, CT you say it was isolated?
I say migrating birds.....
Your friend who now is in a wheelchair? so sorry
I bet he was treated using the IDSA guidelines? 6 wks and done. they-
IDSA don't recognize "Chronic Lyme"
You might want to try The Widening Circle by Polly Murray
a very good read.
Okay I agree that arguments do nothing but create bad will between folks. BTW, I have a husband, two grown kids, two cats and a dog :-).
I'm not saying it was isolated, just that Lyme, CT is considered the epicenter, and where the first cases were diagnosed, of what is now a world wide problem.
It is a tick bourne disease, BUT, like other diseases it is possible for birds to be infected by tick bites, carry the disease without being ill themselves, and then pass it on to the next tick that bites them.
I lived an hour from Lyme but my friend actually lived there and was one of the first diagnosed cases. I'm sure that treatment protocols have changed for the better in the long, long years since she became ill.
I am personally concerned because the radiologist report from my brain mri stated demylenating disease or Lymes. I'm leapfrogging from my "weanie" neuro to Johns Hopkins for further testing.
My problem with the web site is I could find no links to take me directly to treatment protocols and recommendations. I may be intelligent :-) but that doesn't mean I can navigate. Just ask my husband.
Moeck
I'm not saying it was isolated, just that Lyme, CT is considered the epicenter, and where the first cases were diagnosed, of what is now a world wide problem.
It is a tick bourne disease, BUT, like other diseases it is possible for birds to be infected by tick bites, carry the disease without being ill themselves, and then pass it on to the next tick that bites them.
I lived an hour from Lyme but my friend actually lived there and was one of the first diagnosed cases. I'm sure that treatment protocols have changed for the better in the long, long years since she became ill.
I am personally concerned because the radiologist report from my brain mri stated demylenating disease or Lymes. I'm leapfrogging from my "weanie" neuro to Johns Hopkins for further testing.
My problem with the web site is I could find no links to take me directly to treatment protocols and recommendations. I may be intelligent :-) but that doesn't mean I can navigate. Just ask my husband.
Moeck
Dont worry Tory I do understand you and thanks for the Help.
I had a talk with my Lyme Doc today and he said the Medication is for my problems Lyme, Candida etc... And he said the detox, diet and supplements are just to help get your system back up and in shape, how much you take and do (diet, detox) will help you that much more. He said he does not require it but highly recommends it. Thats it!
He also changed my Lyme treatment and now I will be on Amoxicillin, Flagyl and Florastor.
He recommended I take Lymph Drainage and Bacteria (homeopathic) and Rutozym Supplements.
I may take the supplements after I get on these new meds and see how I do (feel).
Thanks,
Rob
I had a talk with my Lyme Doc today and he said the Medication is for my problems Lyme, Candida etc... And he said the detox, diet and supplements are just to help get your system back up and in shape, how much you take and do (diet, detox) will help you that much more. He said he does not require it but highly recommends it. Thats it!
He also changed my Lyme treatment and now I will be on Amoxicillin, Flagyl and Florastor.
He recommended I take Lymph Drainage and Bacteria (homeopathic) and Rutozym Supplements.
I may take the supplements after I get on these new meds and see how I do (feel).
Thanks,
Rob
I am about to bow out of this discussion as my interest is in MS and, in Rob's case, this seems to have been settled.
However, Rob, I can't leave without a final word on your new doctor's "treatment" of you. I have been reading and reading the controversy between the Advocates of Long-Term Lyme therapy and the Amercian Acadamy of Infectious Disease and the American Academy of Neurology. The deeper I go into the foray the more interesting it gets.
Now, I have to preface this with the statement that the American Academy of Infectious Diseases declared last year that there were NO compelling evidence in 100+ research studies to justify a prolonged course of antibiotics even in Late-Stage Lyme - This prompted an uproar among patients and doctors alike over the it's implications for "Standards of Care" (and corresponding malpractice against doctors choosing the longer treatment options for their patients) and for insurance coverage. A review was ordered of the guidelines posted by the official Infectious Disease group and I don't know the results. Another review of 120 evidence-based studies was recently completed by the Amercian Academy of Neurology and found the same thing. These two groups are referred to by the Lyme people as Lyme-Deniars.
Okay - I haven't a strong opinion on THAT topic, because there is some compelling data on treatment failures in short term Lyme treatment, especially of long-standing infection. I just wanted you all to know that I am aware of the controversy and the attitude between the two groups and did NOT want to air the whole controversy here - "a forum on Multiple Sclerosis."
HOWEVER, I do have a great deal of respect for the field of Infectious Diseases in their assessment of what antibiotics, in what strengths, are effective against which organisms and how to monitor for this. I looked up the recommendations for treatment of Neuroborreliosis (the proper term for Lyme which has invaded the nervous system). The Infectious Disease people are quite clear that once there is evidence of INVASION OF THE CENTRAL NERVOUS SYSTEM - as opposed to the peripheral nervous system which is very, very common with the Lyme spirochete - the antibiotics that are recommended CHANGE from those recommended for early disease. Specifically they change from oral to intravenous!
I think I garbled that last sentence. Simply stated - Early disease can be treated by oral antibiotics, with doxycycline being the favored drug.
BUT...
Once the CNS has been invaded and there is evidence of lesions in the brain, the recommendations are very clear. To treat effectively the patient needs to receive an antibiotic that can cross the blood brain barrier (because not all can) and "in doses that WILL cross the blood-brain barrier." The recommendation is to use 14 - 28 days of IV ANTIOBIOTICS preferably a 3rd generation cephalosporin such as ceftriaxone (Rocephin) of cefotaxime (Claforan), followed by some weeks of an oral antibiotic (okay - I don't care here - several months/years of an oral antibiotic).
This jibes with all I had read and learned about treating infection of the CNS. Rob, when your LLMD told you your MS was Lyme he was telling you that you have a meningo-encephalitis of the Lyme spirochete. Okay, but the recommendations of everyone I found, including the Lyme experts, recommend IV (intravenous) treatment for a minimum of 2 weeks up to a month to properly initiate therapy. So, when you told me that this guy I didn't trust, had chosen to give you Rocephin IV, I was pleased that at least he was giving you effective therapy.
To hear that now he has changed his mind and is giving you oral amoxicillin (which cannot be given in a way to achieve high enough concentrations to penetrate into the brain) I was dismayed and aghast. Amoxicillin isn't even the preferred oral drug unless you are allergic to tetracyclines. Who IS this guy you are trusting your life and health to? What? Doesn't he have hospital privileges or something? Whatever would cause him to downgrade your treatment to a level that may very well not reach your brain???? In treating brain abcesses we even use Flagyl IV! If he told you this new regime would do as good a job.......then he is either stupid or he lied.
Rob, from everything I read, you need IV antibiotics and lots of them! You have got to find someone else to get another opinion from!
I am done here. I have to be able to sleep at night. Quix
However, Rob, I can't leave without a final word on your new doctor's "treatment" of you. I have been reading and reading the controversy between the Advocates of Long-Term Lyme therapy and the Amercian Acadamy of Infectious Disease and the American Academy of Neurology. The deeper I go into the foray the more interesting it gets.
Now, I have to preface this with the statement that the American Academy of Infectious Diseases declared last year that there were NO compelling evidence in 100+ research studies to justify a prolonged course of antibiotics even in Late-Stage Lyme - This prompted an uproar among patients and doctors alike over the it's implications for "Standards of Care" (and corresponding malpractice against doctors choosing the longer treatment options for their patients) and for insurance coverage. A review was ordered of the guidelines posted by the official Infectious Disease group and I don't know the results. Another review of 120 evidence-based studies was recently completed by the Amercian Academy of Neurology and found the same thing. These two groups are referred to by the Lyme people as Lyme-Deniars.
Okay - I haven't a strong opinion on THAT topic, because there is some compelling data on treatment failures in short term Lyme treatment, especially of long-standing infection. I just wanted you all to know that I am aware of the controversy and the attitude between the two groups and did NOT want to air the whole controversy here - "a forum on Multiple Sclerosis."
HOWEVER, I do have a great deal of respect for the field of Infectious Diseases in their assessment of what antibiotics, in what strengths, are effective against which organisms and how to monitor for this. I looked up the recommendations for treatment of Neuroborreliosis (the proper term for Lyme which has invaded the nervous system). The Infectious Disease people are quite clear that once there is evidence of INVASION OF THE CENTRAL NERVOUS SYSTEM - as opposed to the peripheral nervous system which is very, very common with the Lyme spirochete - the antibiotics that are recommended CHANGE from those recommended for early disease. Specifically they change from oral to intravenous!
I think I garbled that last sentence. Simply stated - Early disease can be treated by oral antibiotics, with doxycycline being the favored drug.
BUT...
Once the CNS has been invaded and there is evidence of lesions in the brain, the recommendations are very clear. To treat effectively the patient needs to receive an antibiotic that can cross the blood brain barrier (because not all can) and "in doses that WILL cross the blood-brain barrier." The recommendation is to use 14 - 28 days of IV ANTIOBIOTICS preferably a 3rd generation cephalosporin such as ceftriaxone (Rocephin) of cefotaxime (Claforan), followed by some weeks of an oral antibiotic (okay - I don't care here - several months/years of an oral antibiotic).
This jibes with all I had read and learned about treating infection of the CNS. Rob, when your LLMD told you your MS was Lyme he was telling you that you have a meningo-encephalitis of the Lyme spirochete. Okay, but the recommendations of everyone I found, including the Lyme experts, recommend IV (intravenous) treatment for a minimum of 2 weeks up to a month to properly initiate therapy. So, when you told me that this guy I didn't trust, had chosen to give you Rocephin IV, I was pleased that at least he was giving you effective therapy.
To hear that now he has changed his mind and is giving you oral amoxicillin (which cannot be given in a way to achieve high enough concentrations to penetrate into the brain) I was dismayed and aghast. Amoxicillin isn't even the preferred oral drug unless you are allergic to tetracyclines. Who IS this guy you are trusting your life and health to? What? Doesn't he have hospital privileges or something? Whatever would cause him to downgrade your treatment to a level that may very well not reach your brain???? In treating brain abcesses we even use Flagyl IV! If he told you this new regime would do as good a job.......then he is either stupid or he lied.
Rob, from everything I read, you need IV antibiotics and lots of them! You have got to find someone else to get another opinion from!
I am done here. I have to be able to sleep at night. Quix
Quix,
I had treatment 3 times with IV Rocephin and ever sense the second treatment I have been getting progressive nausea and diarrhea. I mentioned this to him at today's treatment and he said he needs to take me off and he then prescribed the other treatment.
You appear to know a lot about Lyme and the treatment, but in my case every time I go through a step or something changes, you spend your time badgering this doctor so negatively. You know what I have been through and how I got here. I just dont get you.
Give me some advice - what would you prescribe if I cannot take IV Rocephin, since it obviously would not be Amoxicillin, Flagyl and Florastor which he prescribed.
Are you a doctor or what?
Rob
I had treatment 3 times with IV Rocephin and ever sense the second treatment I have been getting progressive nausea and diarrhea. I mentioned this to him at today's treatment and he said he needs to take me off and he then prescribed the other treatment.
You appear to know a lot about Lyme and the treatment, but in my case every time I go through a step or something changes, you spend your time badgering this doctor so negatively. You know what I have been through and how I got here. I just dont get you.
Give me some advice - what would you prescribe if I cannot take IV Rocephin, since it obviously would not be Amoxicillin, Flagyl and Florastor which he prescribed.
Are you a doctor or what?
Rob
If you feel that Quix is giving you bad advise, why do you keep coming back tp her??? Shame on you for being so ignorant to someone who tried to help you when YOU asked her for help. If you like your doc and agree with the treatment, then why continue to ask Quix?? Ask your wonderful doctor. Quix has always prefaced responses with the fact that she is retired and that neurology is not her specialty, but she will help as she can. She has never tried to represent herself as something she is not. She has done alot of reading to help answer your questions, and you insult her. There really are lyme forums, you know. I'm really tired of Quix being badgered by people who are only trying to set her up.
Penn
Penn
Well, Obviously you missed my point and you do not understand me at all. I am clearly, clearly seeking her advice and everybody including her knows this. I am trying to get through to that and understand her at these certain points. We have been here before.
I have never ever once insulted her at all. But, it is nice of you to step in this post at this point.
Thanks,
Rob
I have never ever once insulted her at all. But, it is nice of you to step in this post at this point.
Thanks,
Rob
I totally agree with Penn. Why do you keep coming back to Quix if your only going to disagree with what she is trying to tell you? She is and has done extensive study just for you and you still seem to only want to argue with what she has found out for you.
Quix is only after you best interest, as we all are. We all are here to help each other, not fight. Everyone here wants you to get better the same as they would want me to get better. Can you not just listen to what she is telling you and ask you doctor about it? Is that to hard?
Rob, I wish only the best for you but you seem to enjoy this little game your playing with Quix, and I for one wish it would stop. She does not need the added stress in her life.
I'll be praying for you,
Carol
Quix is only after you best interest, as we all are. We all are here to help each other, not fight. Everyone here wants you to get better the same as they would want me to get better. Can you not just listen to what she is telling you and ask you doctor about it? Is that to hard?
Rob, I wish only the best for you but you seem to enjoy this little game your playing with Quix, and I for one wish it would stop. She does not need the added stress in her life.
I'll be praying for you,
Carol
I think you both do not know what the hell your talking about. Try reading my posts and you tell me how I have been out of line at all. You guys are nuts.
Again, I have never ever once insulted her at all or have intensions of arguing just clarifying and trying to understand this. For the record Quix has in fact insulted me and appologized for it, not me insulting her. Again, try reading my posts and you tell me how I have been out of line at all. You guys are nuts.
Quix knows I respect her and very much appreciate her help.
WOW!!!!!
Again, I have never ever once insulted her at all or have intensions of arguing just clarifying and trying to understand this. For the record Quix has in fact insulted me and appologized for it, not me insulting her. Again, try reading my posts and you tell me how I have been out of line at all. You guys are nuts.
Quix knows I respect her and very much appreciate her help.
WOW!!!!!
"Are you a doctor or what?" WOW!!!!!
No, not insulting whatsoever.
We are all reading your posts carefully with great interest. We are concerned about your health and want to learn more about Lyme. It's crazy how, when the subject of Lyme comes up, the boxing gloves come on.
Quix is giving you excellent information. You do not have to listen to her. She is NOT your doctor. She is one of the members of our forum here who deserves some respect. Just like you do. She is doing her best to in form and help you. She did, in her passion, once, insult you, as you said. She apologized, as you said. Grown-ups do that.
You have insulted her. Own up to that. We can get past it. We are a family here. Family members sometimes squabble. If you don't want to get past it, we don't have to. Grown-ups sometimes choose that, too.
You called Penn and Carol 'nuts.' Not nice. Cool off. We all want good health for you. That's why we're here.
Feel well. Let's move forward and onward.
Chris
No, not insulting whatsoever.
We are all reading your posts carefully with great interest. We are concerned about your health and want to learn more about Lyme. It's crazy how, when the subject of Lyme comes up, the boxing gloves come on.
Quix is giving you excellent information. You do not have to listen to her. She is NOT your doctor. She is one of the members of our forum here who deserves some respect. Just like you do. She is doing her best to in form and help you. She did, in her passion, once, insult you, as you said. She apologized, as you said. Grown-ups do that.
You have insulted her. Own up to that. We can get past it. We are a family here. Family members sometimes squabble. If you don't want to get past it, we don't have to. Grown-ups sometimes choose that, too.
You called Penn and Carol 'nuts.' Not nice. Cool off. We all want good health for you. That's why we're here.
Feel well. Let's move forward and onward.
Chris
Please, if you will ready my post again I never said that you insulted Quix, I said that you seem to always want to argue with what she has to say.
Chris is right in that we are all grown ups here, lets act like it. I'll go first,:
I am very sorry if I have offended you or anyone else. Sometimes I let my emotions speak for me and maybe I should'nt. Please lets all be one big happy family and move past this. I hope that you will except my apology for possibly offending you. I still think you want desperately to prove Quix wrong on all of this but that is my opinion so please do not take it personal.
I'll be praying,
Carol
Chris is right in that we are all grown ups here, lets act like it. I'll go first,:
I am very sorry if I have offended you or anyone else. Sometimes I let my emotions speak for me and maybe I should'nt. Please lets all be one big happy family and move past this. I hope that you will except my apology for possibly offending you. I still think you want desperately to prove Quix wrong on all of this but that is my opinion so please do not take it personal.
I'll be praying,
Carol
I hope you know I respect you and very much appreciate your help. I chose to cumminicate with you as you have had sound logical advice. I really wanted to know if you are a doctor as it would not surprise me. Please understand me as things are getting very mixed up here and I cannot believe I am getting defensive, this truly is not my way or my intension. I am a simple person not knowledge on either subject at all.
If I have offended or insulted you Quix, I am very sorry!!!
I also appologize to Penn, grannyhotwheels, and Momzilla. Sorry if I have offended any of you!!!
Thanks,
Rob
If I have offended or insulted you Quix, I am very sorry!!!
I also appologize to Penn, grannyhotwheels, and Momzilla. Sorry if I have offended any of you!!!
Thanks,
Rob
I've been away since early posts yesterday...I started with a reply and the doorbell rang.
Then, the above couple of posts came in..
Can I please say this:
Rob, like myself is confused and scared! He now has 2 diagnoses...A neuro said it's MS and a Lyme doc says it Lyme..well the CDC even agrees with that,,,anyway
I don't find Rob asking for an opinion from Quix to be rude, nor did I read Rob stating her advice was bad. Rob is doing what we in the Lyme community want him to do...ask questions, check things out,,and ask some more.
Rob and I also a part of this community; whether you like it or not--and no fault of our own....so please do be nice; we didn't diagnose us with MS..ok?
This whole disease (lyme) is a tough one..
There are 2 very different approaches to treatment.
One is the IDSA
The other is ILADS.
Quix stated above correctly according to the IDSA guidelines....
Rob however will be treated and has begun his treatment with a doctor who will use the ILADS guidelines.
The IDSA doesn't recognize " chronic Lyme". and only treats for 6 weeks. re-treats later if nec,,See Quix's remarks)
ILADS treats until symptom free: they do use abx that crosses the BBB - they treat lyme in it's cyst form.
So, Rob expect to get a point of view from Quix that reflects the IDSA guidelines. And she's correct when she says that IV is the drug to use for early infection..
you however are past early infection;
So, an ILADS doctor will interprete your treatment differently.
This is why LP's don't do a good job in detecting spirochetes; they change into a cyst form quickly.
I don't think this is the place to discuss all of this; so I will say this to Rob
With Lyme disease the reality is you the patient should read and understand all that you can about this political disease.
Getting back to your change in meds:
imo, this change might be simply because you have a yeast problem,,,,,and you were also on steroids? You obviously reacted to the IV so your doc changed your meds..Very common. there's another gal with a MS diagnosis ( now has Lyme) and her Lyme doc wouldn't start her on any abx because of her yeast problem,,,,a bad yeast problem. She needs to clear that up first....then she'll begin treatment. IV I think...I didn't start with IV, but again each of us is different, and lyme docs treat us differently.
You Rob have both yeast and just got off steroids...The amoxy, flagyl and probiotic is a nice easy way to get you on tract.
Thanks Quix for your research and time, but Rob you need to understand that is only 1 point of view.
Then, the above couple of posts came in..
Can I please say this:
Rob, like myself is confused and scared! He now has 2 diagnoses...A neuro said it's MS and a Lyme doc says it Lyme..well the CDC even agrees with that,,,anyway
I don't find Rob asking for an opinion from Quix to be rude, nor did I read Rob stating her advice was bad. Rob is doing what we in the Lyme community want him to do...ask questions, check things out,,and ask some more.
Rob and I also a part of this community; whether you like it or not--and no fault of our own....so please do be nice; we didn't diagnose us with MS..ok?
This whole disease (lyme) is a tough one..
There are 2 very different approaches to treatment.
One is the IDSA
The other is ILADS.
Quix stated above correctly according to the IDSA guidelines....
Rob however will be treated and has begun his treatment with a doctor who will use the ILADS guidelines.
The IDSA doesn't recognize " chronic Lyme". and only treats for 6 weeks. re-treats later if nec,,See Quix's remarks)
ILADS treats until symptom free: they do use abx that crosses the BBB - they treat lyme in it's cyst form.
So, Rob expect to get a point of view from Quix that reflects the IDSA guidelines. And she's correct when she says that IV is the drug to use for early infection..
you however are past early infection;
So, an ILADS doctor will interprete your treatment differently.
This is why LP's don't do a good job in detecting spirochetes; they change into a cyst form quickly.
I don't think this is the place to discuss all of this; so I will say this to Rob
With Lyme disease the reality is you the patient should read and understand all that you can about this political disease.
Getting back to your change in meds:
imo, this change might be simply because you have a yeast problem,,,,,and you were also on steroids? You obviously reacted to the IV so your doc changed your meds..Very common. there's another gal with a MS diagnosis ( now has Lyme) and her Lyme doc wouldn't start her on any abx because of her yeast problem,,,,a bad yeast problem. She needs to clear that up first....then she'll begin treatment. IV I think...I didn't start with IV, but again each of us is different, and lyme docs treat us differently.
You Rob have both yeast and just got off steroids...The amoxy, flagyl and probiotic is a nice easy way to get you on tract.
Thanks Quix for your research and time, but Rob you need to understand that is only 1 point of view.
Hi Tory,
As you know Quix has helped me a lot through my MS and Lyme problems. But you are right I do need to broaden my investigating at this point and get more information and opinions.
Thanks,
Rob
As you know Quix has helped me a lot through my MS and Lyme problems. But you are right I do need to broaden my investigating at this point and get more information and opinions.
Thanks,
Rob
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