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Symptoms, Diagnosis, Please Help.
Hi,
My main question at this point, Can a sinus infection (that apparently I had on and off for a long time) cause this auto immune problem which could be diagnosed as MS?
Some history:
It started in march of this year (2007), I got some numb like feeling in tongue, lip, chin. Ended up on blood pressure meds and monitoring blood pressure for next month. I then got numbness in my hands and feet, then trunk. I ended up at the hospital as I was worried something serious was going on. They told me to get off the medication I was on and if it continued to see a Neurologist. I talked with a Pharmacist who told me the meds should be out of my system after 10 days. So I waited about 3 weeks and still had same symptoms, so I got a refferal to a local Neurologist and had to wait another 3 weeks for an appointment. During the wait I started a new symptom which gives me a shocking feeling down to my feet and hands when I bend my neck.
Went for MRI of brain and spine in which they found lesions and inflamation. Did lumbar puncture a week later and 3 days of steroid IV treatment at hospital. After the results of the lumbar puncture I was told I had MS and have been doing IV treatment once a month ever since.
I was told by my sister's doctor back in Massachusetts where I lived all my life (I now live in Michigan 7 years), that I need to rule out Lyme disease if I was diagnosed with MS. I then asked what test were done to rule out Lyme and was told nothing, but he said we will do an antibodies blood test which came back negative. During this time I was talking with the Michigan Lyme Disease association and they told me that the antidodies test was junk and that it is void as I am on steroids. They told me to see a Lyme Literate doctor to rule out Lyme. So I have just seen this Lyme Literate doctor and I am now getting a Lyme disease test through some iGenex lab in California as this Lyme Literate doctor said they are the best. As all my records were sent to him, he looked everything over and also checked me out and talked with me for a long time which I really found nice for once since this all started. Anyway, this doctor found a big sinus infection and asked me if I had sinus problems, that is when I told him I had minor problems on and off for a very long time. He also said I had high liver enzymes. He put me on 2 - 500 milligram antibiotics twice a day (2000 milligrams Total a day) for 30 days. He also recommended me not to do the steroid IV treatment. I will soon get my results for Lyme test. Also, he set me up on Sept 18th for a Bio-Meridian health analysis.
I am sorry for this huge story but I have not talked to anyone about this really besides family and I wanted you guys to hear my whole story.
Any input, direction, help etc.... would be much appreciated, Thanks you so much for your time.
Rob
My main question at this point, Can a sinus infection (that apparently I had on and off for a long time) cause this auto immune problem which could be diagnosed as MS?
Some history:
It started in march of this year (2007), I got some numb like feeling in tongue, lip, chin. Ended up on blood pressure meds and monitoring blood pressure for next month. I then got numbness in my hands and feet, then trunk. I ended up at the hospital as I was worried something serious was going on. They told me to get off the medication I was on and if it continued to see a Neurologist. I talked with a Pharmacist who told me the meds should be out of my system after 10 days. So I waited about 3 weeks and still had same symptoms, so I got a refferal to a local Neurologist and had to wait another 3 weeks for an appointment. During the wait I started a new symptom which gives me a shocking feeling down to my feet and hands when I bend my neck.
Went for MRI of brain and spine in which they found lesions and inflamation. Did lumbar puncture a week later and 3 days of steroid IV treatment at hospital. After the results of the lumbar puncture I was told I had MS and have been doing IV treatment once a month ever since.
I was told by my sister's doctor back in Massachusetts where I lived all my life (I now live in Michigan 7 years), that I need to rule out Lyme disease if I was diagnosed with MS. I then asked what test were done to rule out Lyme and was told nothing, but he said we will do an antibodies blood test which came back negative. During this time I was talking with the Michigan Lyme Disease association and they told me that the antidodies test was junk and that it is void as I am on steroids. They told me to see a Lyme Literate doctor to rule out Lyme. So I have just seen this Lyme Literate doctor and I am now getting a Lyme disease test through some iGenex lab in California as this Lyme Literate doctor said they are the best. As all my records were sent to him, he looked everything over and also checked me out and talked with me for a long time which I really found nice for once since this all started. Anyway, this doctor found a big sinus infection and asked me if I had sinus problems, that is when I told him I had minor problems on and off for a very long time. He also said I had high liver enzymes. He put me on 2 - 500 milligram antibiotics twice a day (2000 milligrams Total a day) for 30 days. He also recommended me not to do the steroid IV treatment. I will soon get my results for Lyme test. Also, he set me up on Sept 18th for a Bio-Meridian health analysis.
I am sorry for this huge story but I have not talked to anyone about this really besides family and I wanted you guys to hear my whole story.
Any input, direction, help etc.... would be much appreciated, Thanks you so much for your time.
Rob
I know I am very new to this but I feel I must explain both sides of my story as sort of a summary:
As you know I seeked 2 Neurologist opinions as my symptoms were neurological and this was the advice of 3 ER Doctors and my family Doctor. Both Neurologist say I have MS and they have similar treatment plans. Also, both say I should start treatment soon as I could end up in a wheel chair. I am doing IV steroid treatment once a month and have been told to do it until 12/07. I have not started any other treatment as of yet.
My previous family doctor back in Massachusetts advised me to rule out Lyme Disease if I was diagnosed with MS. I now live in Michigan - about 7 years. Being Lyme Disease is endemic in Massachusetts and also known here in Michigan, the advice makes sense to me. My next step was contacting the Michigan Lyme Disease Association and asking for advice. The recommendation to me was to see one of two Lyme Litterate Doctors here in Michigan. I did hear a first hand story while talking with them: This person was diagnosed with MS and for 6 years declining and ending up in a wheel chair, then finding out she had Lyme Disease and after several months of treatment was up and walking and getting better. Now she is lession free, roller blading and feeling great, she says I have my life back. That is a great story and I feel for her. With my previous Doctors advice and this one story I heard, I felt I absolutely need to rule out Lyme as I do not think I can accept the MS diagnosis without it.
Again, I know I am very new to this, but I do not see why both Neurologist and Lyme Doctors along with this iGeneX Lab cannot work together to simply rule this out as most patients like me would be happy to do so.
I really want to Thank everybody for their time and input from both sides. I will be sure to follow up with a post once I find out more,
Thanks again,
Rob
As you know I seeked 2 Neurologist opinions as my symptoms were neurological and this was the advice of 3 ER Doctors and my family Doctor. Both Neurologist say I have MS and they have similar treatment plans. Also, both say I should start treatment soon as I could end up in a wheel chair. I am doing IV steroid treatment once a month and have been told to do it until 12/07. I have not started any other treatment as of yet.
My previous family doctor back in Massachusetts advised me to rule out Lyme Disease if I was diagnosed with MS. I now live in Michigan - about 7 years. Being Lyme Disease is endemic in Massachusetts and also known here in Michigan, the advice makes sense to me. My next step was contacting the Michigan Lyme Disease Association and asking for advice. The recommendation to me was to see one of two Lyme Litterate Doctors here in Michigan. I did hear a first hand story while talking with them: This person was diagnosed with MS and for 6 years declining and ending up in a wheel chair, then finding out she had Lyme Disease and after several months of treatment was up and walking and getting better. Now she is lession free, roller blading and feeling great, she says I have my life back. That is a great story and I feel for her. With my previous Doctors advice and this one story I heard, I felt I absolutely need to rule out Lyme as I do not think I can accept the MS diagnosis without it.
Again, I know I am very new to this, but I do not see why both Neurologist and Lyme Doctors along with this iGeneX Lab cannot work together to simply rule this out as most patients like me would be happy to do so.
I really want to Thank everybody for their time and input from both sides. I will be sure to follow up with a post once I find out more,
Thanks again,
Rob
hmm, yes I did read the posts but quickly,,,I'm losing my dsl connection for days now..problem not solved!
yes, I saw your recommendation for a probiotic; but when you speak of C-diff and how it can be very serious- of course you're right, but how many out there weren't taking a probiotic along with extended use of an antibiotic?
I was on antibiotics years ago for a long time and my doc Never mentioned a probiotic....not even yogurt.
There's another gal who has been on Amoxy for an ear and sinus infection off and on for months...she now has a big yeast problem,,,and no her current doc never talked about probiotics.
as for the Balanced view on a lyme forum. Can't really say much other than is a "lightening" rod of a topic.
I do my best to help anyone with this disease get tested correctly when it comes to LD!
My doc sees a lot of MS patients, but is also very open to us sticking with our Neuros and remaining on a DMD if that's what we want. He really wants to educate these docs.
I will visit my neuro ---very soon with my new MRI's this year and lots of info in hand.
and lastly, RMSF is a co-infection to Bb so is Ehrlicia, Mycoplasma, Bartonella, Babesia,etc. I can't say which "one" of these or if all of these cause lesions because testing for co-infections isn't very reliable either...I can state that "something" caused my lesions! and it was my neuros in 1990 that clinically diagnosed my MS with MRI results in hand.
I also tire of this: I hope Quix that we can continue to share/offer help anyone asking questions. I stress "my opinion" when speaking about " auto-immune" etc. I, like you am allowed a personal opinion.
I'm an easy to get along with person as you seem to be, I don't come here to "prove" anything, I only offer a different approach for anyone asking...
although we tend to agree to disagree I feel everything is worth listening to; it's how I put my puzzle together.
yes, I saw your recommendation for a probiotic; but when you speak of C-diff and how it can be very serious- of course you're right, but how many out there weren't taking a probiotic along with extended use of an antibiotic?
I was on antibiotics years ago for a long time and my doc Never mentioned a probiotic....not even yogurt.
There's another gal who has been on Amoxy for an ear and sinus infection off and on for months...she now has a big yeast problem,,,and no her current doc never talked about probiotics.
as for the Balanced view on a lyme forum. Can't really say much other than is a "lightening" rod of a topic.
I do my best to help anyone with this disease get tested correctly when it comes to LD!
My doc sees a lot of MS patients, but is also very open to us sticking with our Neuros and remaining on a DMD if that's what we want. He really wants to educate these docs.
I will visit my neuro ---very soon with my new MRI's this year and lots of info in hand.
and lastly, RMSF is a co-infection to Bb so is Ehrlicia, Mycoplasma, Bartonella, Babesia,etc. I can't say which "one" of these or if all of these cause lesions because testing for co-infections isn't very reliable either...I can state that "something" caused my lesions! and it was my neuros in 1990 that clinically diagnosed my MS with MRI results in hand.
I also tire of this: I hope Quix that we can continue to share/offer help anyone asking questions. I stress "my opinion" when speaking about " auto-immune" etc. I, like you am allowed a personal opinion.
I'm an easy to get along with person as you seem to be, I don't come here to "prove" anything, I only offer a different approach for anyone asking...
although we tend to agree to disagree I feel everything is worth listening to; it's how I put my puzzle together.
I think it is odd that one would post on different forums with different screen names. Of the few that I post on I use the same name.....just seems easier.
Do share where you post, I have never visited such a one sided forum. It could be fun and not so exhausting for a change ;)
Do share where you post, I have never visited such a one sided forum. It could be fun and not so exhausting for a change ;)
I tire of this. I'm sure you have a great anecdotal story for every instance. Please give me the reference that demonstrates demyelinating plaques in the brain and spine with RMSF.
Did you note my (mainstream MD) recommendation to Rob for a probiotic????? You really should read what you are responding to carefully. I do. Rob's "LLMD" placed him on high dose amoxicillin for a month. We should ask him if this wonderful, careful, "better doctor than mainstream" advised him to take a probiotic. I did, as I was taught in "mainstream" medicine. It was my first thought when I heard of his treatment.
BTW - I have been posting in a Lyme forum (under a different name) and haven't yet gotten a "balanced" view of MS. No one has even suggested that it could be non-infection related, but have rushed to tell me how I am being misled by "mainstream" medicine. They actually make wilder claims than you and are uniformly insulting about all doctors, except the "Enlightened Ones."
Quix
Did you note my (mainstream MD) recommendation to Rob for a probiotic????? You really should read what you are responding to carefully. I do. Rob's "LLMD" placed him on high dose amoxicillin for a month. We should ask him if this wonderful, careful, "better doctor than mainstream" advised him to take a probiotic. I did, as I was taught in "mainstream" medicine. It was my first thought when I heard of his treatment.
BTW - I have been posting in a Lyme forum (under a different name) and haven't yet gotten a "balanced" view of MS. No one has even suggested that it could be non-infection related, but have rushed to tell me how I am being misled by "mainstream" medicine. They actually make wilder claims than you and are uniformly insulting about all doctors, except the "Enlightened Ones."
Quix
regarding Rocky Mountain Spotted Fever:
My 32 yr old nephew took his mom to Finally consult a LLMD! She's had Sjogren's (an auto-inmmune disease) Fibromyalgia, IBS, and RA for 25 yrs.
This after her Neurologist tested her for Lyme Disease using a conventional lab and ELISA. It came back CDC negative. Her Neuro and then her Rhuemy in disgusted voices told her: See you don't have Lyme and to stay off the internet,,, it's filled with Fanatics and lots of untruth and snake oil.
Her new Lyme Literate Doctor sent off an IgeneX test along with bloodwork for co-infections and a full blood work up including her Sed Rate,,,etc to Quest Labs.
She tested Negative through IgeneX with these bands positive: IgG 25 IND, 30 + 34 IND, 39+, 41++
IgM 18++, 39 IND, 41 IND 58+
but with Quest Labs she tested Positive for Babesia. and the CDC called her!
hmmm, what would her 2 docs for 25 yrs say about her Quest test? and of course testing for co-infections aren't very reliable either.
Months later her son, decided to also get tested. He has had a sore throat he'd call a nuisance off and on for yrs,,tonsiles he was supposed to have removed, and a sore knee,,again off and on.
He tested positive for Rocky Mountain Spotted Fever!---again through Quest Labs and has high liver enzymes....he doesn't drink, or smoke, and wasn't on any meds for anything ---ever! He takes lots of supplements and was considered a "health" nut! The local Health Dept called him, asked what his symptoms are; when he said none that he knows of they told him he doesn't Have RMSF.
Could this be Ehrlicia?
don't know, but at least he has a doctor who is educated in co-infections!
as for C-diff,,,a very serious condition to have,,,when taking antibiotics you must take probioitcs to replenish the good bacteria.
I've been in treatment 11 mts take a good probiotic also make Kefir and I haven't had a bit of a problem with yeast.
Do mainstream docs offer a probiotic when on antibiotics?
They do however have scripts to write when "yeast" becomes a problem.
My 32 yr old nephew took his mom to Finally consult a LLMD! She's had Sjogren's (an auto-inmmune disease) Fibromyalgia, IBS, and RA for 25 yrs.
This after her Neurologist tested her for Lyme Disease using a conventional lab and ELISA. It came back CDC negative. Her Neuro and then her Rhuemy in disgusted voices told her: See you don't have Lyme and to stay off the internet,,, it's filled with Fanatics and lots of untruth and snake oil.
Her new Lyme Literate Doctor sent off an IgeneX test along with bloodwork for co-infections and a full blood work up including her Sed Rate,,,etc to Quest Labs.
She tested Negative through IgeneX with these bands positive: IgG 25 IND, 30 + 34 IND, 39+, 41++
IgM 18++, 39 IND, 41 IND 58+
but with Quest Labs she tested Positive for Babesia. and the CDC called her!
hmmm, what would her 2 docs for 25 yrs say about her Quest test? and of course testing for co-infections aren't very reliable either.
Months later her son, decided to also get tested. He has had a sore throat he'd call a nuisance off and on for yrs,,tonsiles he was supposed to have removed, and a sore knee,,again off and on.
He tested positive for Rocky Mountain Spotted Fever!---again through Quest Labs and has high liver enzymes....he doesn't drink, or smoke, and wasn't on any meds for anything ---ever! He takes lots of supplements and was considered a "health" nut! The local Health Dept called him, asked what his symptoms are; when he said none that he knows of they told him he doesn't Have RMSF.
Could this be Ehrlicia?
don't know, but at least he has a doctor who is educated in co-infections!
as for C-diff,,,a very serious condition to have,,,when taking antibiotics you must take probioitcs to replenish the good bacteria.
I've been in treatment 11 mts take a good probiotic also make Kefir and I haven't had a bit of a problem with yeast.
Do mainstream docs offer a probiotic when on antibiotics?
They do however have scripts to write when "yeast" becomes a problem.
Hi,
I am only a caregiver but I do understand how confusing this can all be and how terrible this is to go through.
As Qiux said I do think you should read the thread from Momzilla to Tory. Not only because you will find my husband's story but because of the other good info, too.
Here is my quick and dirty advice---take it for what it is worth.
1. An MS diagnosis is for life....period-- This alone can have far reaching consequences-insurance, occupation,etc. Of course, I'm not saying a diagnosis is a bad thing if you actually have MS...but don't rush it.
2. You got very good advice on ruling out lyme.
3. I don't think your doc who talked about yeast with you is shady....Actually, he sounds pretty thorough. Fairly recently research has shown a connection between fungi and chronic sinus infections, so treating you for yeast (although I know most main stream docs wouldn't) could be a very good idea. Furthermore the implication that the llmd will find "something" to treat you for is below the belt. If I know one thing about lyme docs it is that they are busy! They are not trolling for new patients, they have enough of those already.
The one thing I have found out about most lyme docs is that it is usually personal experience that lead them to treat lyme. Before they or a family member or friend became ill, they had the same views as the rest of the medical community---lyme is easy to diagnose and treat. When they witnessed the manifestations of the disease themselves their views changed and they educated themselves and now help others.
4. If it turns out that your Igenex test points to possible lyme---treat it. Unlike some inflammatory statements above that would lead you to believe that you will immediately be pumped full of HIGH DOSE abx....this is usually not the case. Most docs start you out slowly, gage your reactions, pull full blood chemistries often and monitor your progress.
5. If you really want to hedge your bets, begin treatment with a DMD and start lyme treatment, too. Copaxone or Avonex. This is not unheard of and can give you comfort that you are covering all your bases. My husband's lyme doc treats many MS patients and he NEVER ever tells them to stop their DMDs. In my husband's case, he intended to stay on the Avonex along with abx, but his reactions so early on along with early improvement pointed us away from MS, he was happy to jetison his injectable and never looked back.
A couple more comments.
1. As to your original question about sinus infections and autoimmune connections: I know of no research that relates the two although I do know that pwms for some reason have a higher incidence of sinus trouble. In my view this really speaks to a suppressed immune function.
2.. You are not really being presented with both sides here. Most on this board believe that MS is autoimmune and that lyme causing their MS is a bunch of malarki. Quix herself admits that she does not believe that lyme causes MS.
3. You are doing the right thing......covering all your bases.
4. Good luck and best wishes.
I am only a caregiver but I do understand how confusing this can all be and how terrible this is to go through.
As Qiux said I do think you should read the thread from Momzilla to Tory. Not only because you will find my husband's story but because of the other good info, too.
Here is my quick and dirty advice---take it for what it is worth.
1. An MS diagnosis is for life....period-- This alone can have far reaching consequences-insurance, occupation,etc. Of course, I'm not saying a diagnosis is a bad thing if you actually have MS...but don't rush it.
2. You got very good advice on ruling out lyme.
3. I don't think your doc who talked about yeast with you is shady....Actually, he sounds pretty thorough. Fairly recently research has shown a connection between fungi and chronic sinus infections, so treating you for yeast (although I know most main stream docs wouldn't) could be a very good idea. Furthermore the implication that the llmd will find "something" to treat you for is below the belt. If I know one thing about lyme docs it is that they are busy! They are not trolling for new patients, they have enough of those already.
The one thing I have found out about most lyme docs is that it is usually personal experience that lead them to treat lyme. Before they or a family member or friend became ill, they had the same views as the rest of the medical community---lyme is easy to diagnose and treat. When they witnessed the manifestations of the disease themselves their views changed and they educated themselves and now help others.
4. If it turns out that your Igenex test points to possible lyme---treat it. Unlike some inflammatory statements above that would lead you to believe that you will immediately be pumped full of HIGH DOSE abx....this is usually not the case. Most docs start you out slowly, gage your reactions, pull full blood chemistries often and monitor your progress.
5. If you really want to hedge your bets, begin treatment with a DMD and start lyme treatment, too. Copaxone or Avonex. This is not unheard of and can give you comfort that you are covering all your bases. My husband's lyme doc treats many MS patients and he NEVER ever tells them to stop their DMDs. In my husband's case, he intended to stay on the Avonex along with abx, but his reactions so early on along with early improvement pointed us away from MS, he was happy to jetison his injectable and never looked back.
A couple more comments.
1. As to your original question about sinus infections and autoimmune connections: I know of no research that relates the two although I do know that pwms for some reason have a higher incidence of sinus trouble. In my view this really speaks to a suppressed immune function.
2.. You are not really being presented with both sides here. Most on this board believe that MS is autoimmune and that lyme causing their MS is a bunch of malarki. Quix herself admits that she does not believe that lyme causes MS.
3. You are doing the right thing......covering all your bases.
4. Good luck and best wishes.
Apparently the two approaches are NOT mutually exclusive I read in Tory's other post. Well, now I've heard it both ways. Quix
As I predicted, you would hear from the other camp.
Tory says, "Don't allow any ONE not even a doctor convince you on ANYTHING! " I suppose that means don't let ANY LLMD to convince you of anything either! Let's not be ridiculous. Simple virues like the flu can cause elevated liver enzymes. The most common cause in regular people is acetaminophen. I'm not going to fill the page with unlikely possibilities. (You don't have ANY of the symptoms of Rocky Mountain Spotted Fever!!!!!!!! Sheeeeeesh!!, Tory, at least stick to reality and mind your own "scare tactics)
Back to what you originally asked:
There is no scientific evidence that a chronic sinus infection causes MS. You have all the findings of MS. The only disease that mimics MS very closely - and is really a possibility for you - is Lyme Disease. The new doctor that you are seeing registered HIMSELF with the Michigan Lyme Associaton as an "expert" in Lyme Disease. There is no test nor qualification for this. They refer doctors who have volunteered the information that they treat Lyme Disease.
My concern for you is that this LLMD is "discarding" the established diagnosis and findings of MS and looking at a bunch of other things that do not cause the MS picture of neurologic deficits, positive spinal fluid findings and CNS lesions, like yeast, heavy metals, chemical toxins. If he were focusing on making the clinical diagnosis of Lyme and backing it up I would be more comfortable with what you have told us.
I disagree that LLMD's are all "blessings" as has been claimed. Some of them, like some in EVERY FIELD of human endeavor, are in it for the money only. Quacks have existed from the beginning of time. From what you have shared about this guy, I think you found one. I think he will try to convince you that you have everything under the sun, including Lyme disease. And you will pay money for his workup of irrelevant things also. I would urge you to get another LLMD opinion.
You obtained two neurology opinions. That was prudent. Now be as prudent in the other field. But, don't let someone remake the wheel and start looking for all the things that can make us feel ill. You have definable abnormalities on tests and on exam. Look at what causes those things. Yeast and Rocky Mountain Spotted Fever are not among those causes. Keep the focus where it belongs.
With the depth of the questioning you have posed here you are going to have to get some self-education, both on Multiple Sclerosis and on Lyme Disease. As you learn more you will be more able to tell when the doctor talking to you knows what he is talking about. Tory believes what she advocates, but in her zeal to convince you she says bizarre things and uses her own scare tactics. Eventually you are going to have to trust "a doctor of some sort" to take you through treatment.
You are the only one who can chose which direction to take. You can't follow both schools of thought at the same time. And at any time after you chose that direction, as you learn more, you can switch. From here on out I will discuss MS from the established point of view.
Quix
Tory says, "Don't allow any ONE not even a doctor convince you on ANYTHING! " I suppose that means don't let ANY LLMD to convince you of anything either! Let's not be ridiculous. Simple virues like the flu can cause elevated liver enzymes. The most common cause in regular people is acetaminophen. I'm not going to fill the page with unlikely possibilities. (You don't have ANY of the symptoms of Rocky Mountain Spotted Fever!!!!!!!! Sheeeeeesh!!, Tory, at least stick to reality and mind your own "scare tactics)
Back to what you originally asked:
There is no scientific evidence that a chronic sinus infection causes MS. You have all the findings of MS. The only disease that mimics MS very closely - and is really a possibility for you - is Lyme Disease. The new doctor that you are seeing registered HIMSELF with the Michigan Lyme Associaton as an "expert" in Lyme Disease. There is no test nor qualification for this. They refer doctors who have volunteered the information that they treat Lyme Disease.
My concern for you is that this LLMD is "discarding" the established diagnosis and findings of MS and looking at a bunch of other things that do not cause the MS picture of neurologic deficits, positive spinal fluid findings and CNS lesions, like yeast, heavy metals, chemical toxins. If he were focusing on making the clinical diagnosis of Lyme and backing it up I would be more comfortable with what you have told us.
I disagree that LLMD's are all "blessings" as has been claimed. Some of them, like some in EVERY FIELD of human endeavor, are in it for the money only. Quacks have existed from the beginning of time. From what you have shared about this guy, I think you found one. I think he will try to convince you that you have everything under the sun, including Lyme disease. And you will pay money for his workup of irrelevant things also. I would urge you to get another LLMD opinion.
You obtained two neurology opinions. That was prudent. Now be as prudent in the other field. But, don't let someone remake the wheel and start looking for all the things that can make us feel ill. You have definable abnormalities on tests and on exam. Look at what causes those things. Yeast and Rocky Mountain Spotted Fever are not among those causes. Keep the focus where it belongs.
With the depth of the questioning you have posed here you are going to have to get some self-education, both on Multiple Sclerosis and on Lyme Disease. As you learn more you will be more able to tell when the doctor talking to you knows what he is talking about. Tory believes what she advocates, but in her zeal to convince you she says bizarre things and uses her own scare tactics. Eventually you are going to have to trust "a doctor of some sort" to take you through treatment.
You are the only one who can chose which direction to take. You can't follow both schools of thought at the same time. And at any time after you chose that direction, as you learn more, you can switch. From here on out I will discuss MS from the established point of view.
Quix
Hey Rob,
I now treat my MS with antibiotics. Yes, I have Lyme disease!
I can only suggest you become your own advocate! READ all you can about MS and Lyme Disease!
Don't allow any ONE not even a doctor convince you on ANYTHING!
There's very solid research regarding Lyme Disease....actually this research goes back to the late 1890's.
Too many that don't understand LD only offer scare tactics from a point of view of NO CURE!
Studies and research are being done all the time on the spirochete that IS found in autopies of MS patients....
Read all you can, become your own advocate
oh yes, regarding high liver enzymes:
lots of things can cause it
like, DMD's
I was checked every six months when On my DMD
any drug can cause high liver enzymes........and antibiotics certainly aren't an execption!
Rocky Mountain Spotted Fever can also cause High liver enzymes! and this can be fatal!
wishing you answers and on a road to recovery,
tory
I now treat my MS with antibiotics. Yes, I have Lyme disease!
I can only suggest you become your own advocate! READ all you can about MS and Lyme Disease!
Don't allow any ONE not even a doctor convince you on ANYTHING!
There's very solid research regarding Lyme Disease....actually this research goes back to the late 1890's.
Too many that don't understand LD only offer scare tactics from a point of view of NO CURE!
Studies and research are being done all the time on the spirochete that IS found in autopies of MS patients....
Read all you can, become your own advocate
oh yes, regarding high liver enzymes:
lots of things can cause it
like, DMD's
I was checked every six months when On my DMD
any drug can cause high liver enzymes........and antibiotics certainly aren't an execption!
Rocky Mountain Spotted Fever can also cause High liver enzymes! and this can be fatal!
wishing you answers and on a road to recovery,
tory
I have to say after having to see for myself I do agree with Quix. I tried one of the so called wonder cures (low dose naltrexone) and it almost killed me. I'm not sure that it is still not causing me problems now. Go ahead and check out both theorys. That's what some of us have to do to satisfy our minds, but please be careful in what you do. Don't be their clinical trial. Let someone else play that role. Wait until more studies and proof have been aquired before going down that road.
It's like Quix said they are going to have answers for everything we ask but then they use phrases that we really don't have a clue what it means but they sure make it sound good.
Best of luck and I hope you make the right choices,
Carol
It's like Quix said they are going to have answers for everything we ask but then they use phrases that we really don't have a clue what it means but they sure make it sound good.
Best of luck and I hope you make the right choices,
Carol
I would like your opinion as if I was your brother. I actually think it is a good thing that I am seeing both doctors at this time.
I do need to rule out Lyme because of where I am from and the possibility. Is this going to be questionable or will I get a yes or no answer? Do you think I will be told it is something else from any of this testing this Lyme Doctor is doing or spin off into another direction? Please let me know your thoughts.
The way I see it I either have MS or Lyme with MS waying in much more at this point. My symptoms are very distinct to MS and I have 2 Neurologists diagnosis with very similar treatment plans in front of me. This side of it is very clear to me but if I do have something else it will have to be proven and clear to me also.
Since I am very new to this MS / Lyme thing I want to explore and be open to information, but I am very logical with my decisions. I feel I am heading in the right direction by seeing the correct doctors but I see with this subject not everyone is on the same page, so to speak. But not everyone's MS is the same either. WOW!
Please let me know.
Rob
I do need to rule out Lyme because of where I am from and the possibility. Is this going to be questionable or will I get a yes or no answer? Do you think I will be told it is something else from any of this testing this Lyme Doctor is doing or spin off into another direction? Please let me know your thoughts.
The way I see it I either have MS or Lyme with MS waying in much more at this point. My symptoms are very distinct to MS and I have 2 Neurologists diagnosis with very similar treatment plans in front of me. This side of it is very clear to me but if I do have something else it will have to be proven and clear to me also.
Since I am very new to this MS / Lyme thing I want to explore and be open to information, but I am very logical with my decisions. I feel I am heading in the right direction by seeing the correct doctors but I see with this subject not everyone is on the same page, so to speak. But not everyone's MS is the same either. WOW!
Please let me know.
Rob
Thanks for your answers. You don't want me to comment on the "detoxification therapy." I've been watching various twists on this and the Candida thing since I did my Immunology fellowship 22 years ago. I'm glad that they have had great success on all these diseases that have baffled the rest of the world. That abstract sounds exactly like the remarkable claims made by Low Dose Naltrexone which also treat those conditons and at least 25 more.
The words they use in the abstract sound very exotic and scientific and I do understand them. What they are implying by saying the "the" bilipid cell membrane" needs to be healed is ridiculous. If the "bilipid cell membrane" thoughout the body was damaged you would not be alive.
They were curing similar things in the early 80's with sheep red blood cell infusions and coffee ground enemas. I'm sorry. I am tired and feeling very cynical. Every 5 years or so there is a new way to detoxify the body and cure the worst diseases known to man. So this doctor is willing to give you therapy that will do all these things (treat infection - what kind of infection? all?, reduce heavy metal burden, oh, is that your problem?, clear your system of Candida (systemic candida is usually fatal) and remove "chemicals" (what kind of chemicals,? organophosphates? benzene? PCBs? or Just "Everything bad??")) The ABSTRACT (which is the term for the "summary" of a scientific paper), pretty much promises medical Nirvana.
I do believe the American medical establishment is often closed to new ideas and scoffs at forward-thinkers. I try not to be like that, but I do have a large amount of knowledge about the conditions these people claim to be treating. Some things make some sense and some are not based on good science. Some are merely the thowing together of "buzz" words to gather in the gullible. That Abstract in my eyes falls into this category. The doctor doesn't even have your tests back, but he is already priming you for his pet cure-all therapy. If you were my brother and I saw you entering into this kind of "treatment" I would be in tears.
The reality is (or one reality is) that you have all the time you want to take to rule out the things that need ruling out. There is urgency to begin any therapy which will improve your status. That's why the neurologist wants to be aggressive at treating your MS. But you certainly can wait until you get some of the tests back. I don't think there is a single chance that this LLMD doctor will find something he can't "treat." At least check with the State Medical Board and make sure he isn't under any kind of disciplinary actions or hasn't had multiple complaints.
Last comment, 2 grams of Amoxicillin per day will give you yeast overgrowth in your bowel. When he does the yeast test it will most certainly be there! Actually it is rare not to find yeast in the bowel in anyone. I've certainly looked at 1000's of stool samples under the microscope myself. Yeast is ubiquitous. If you were my patient I would recommend that you take a probiotic (like lactobacillus GG) to prevent the mayhem that will happen in your bowels on that dose for a month.
Again, I have to say that you are between two diametrically opposed camps. If you come here with what you have brought, you get what I have written and what anyone else wants to add or counter with. If you go to Lymenet.org you will see an entirely different reality. It depends on you.
One last thing and I won't bug you further. In the Lyme Literature itself I found several statement that lesions, such as they found in your brain and spine, are not common in Lyme disease. They do happen, but it is unusual. The Lyme "people" say different, but their "researchers" say it is uncommon.
The best of luck to you. Quix
The words they use in the abstract sound very exotic and scientific and I do understand them. What they are implying by saying the "the" bilipid cell membrane" needs to be healed is ridiculous. If the "bilipid cell membrane" thoughout the body was damaged you would not be alive.
They were curing similar things in the early 80's with sheep red blood cell infusions and coffee ground enemas. I'm sorry. I am tired and feeling very cynical. Every 5 years or so there is a new way to detoxify the body and cure the worst diseases known to man. So this doctor is willing to give you therapy that will do all these things (treat infection - what kind of infection? all?, reduce heavy metal burden, oh, is that your problem?, clear your system of Candida (systemic candida is usually fatal) and remove "chemicals" (what kind of chemicals,? organophosphates? benzene? PCBs? or Just "Everything bad??")) The ABSTRACT (which is the term for the "summary" of a scientific paper), pretty much promises medical Nirvana.
I do believe the American medical establishment is often closed to new ideas and scoffs at forward-thinkers. I try not to be like that, but I do have a large amount of knowledge about the conditions these people claim to be treating. Some things make some sense and some are not based on good science. Some are merely the thowing together of "buzz" words to gather in the gullible. That Abstract in my eyes falls into this category. The doctor doesn't even have your tests back, but he is already priming you for his pet cure-all therapy. If you were my brother and I saw you entering into this kind of "treatment" I would be in tears.
The reality is (or one reality is) that you have all the time you want to take to rule out the things that need ruling out. There is urgency to begin any therapy which will improve your status. That's why the neurologist wants to be aggressive at treating your MS. But you certainly can wait until you get some of the tests back. I don't think there is a single chance that this LLMD doctor will find something he can't "treat." At least check with the State Medical Board and make sure he isn't under any kind of disciplinary actions or hasn't had multiple complaints.
Last comment, 2 grams of Amoxicillin per day will give you yeast overgrowth in your bowel. When he does the yeast test it will most certainly be there! Actually it is rare not to find yeast in the bowel in anyone. I've certainly looked at 1000's of stool samples under the microscope myself. Yeast is ubiquitous. If you were my patient I would recommend that you take a probiotic (like lactobacillus GG) to prevent the mayhem that will happen in your bowels on that dose for a month.
Again, I have to say that you are between two diametrically opposed camps. If you come here with what you have brought, you get what I have written and what anyone else wants to add or counter with. If you go to Lymenet.org you will see an entirely different reality. It depends on you.
One last thing and I won't bug you further. In the Lyme Literature itself I found several statement that lesions, such as they found in your brain and spine, are not common in Lyme disease. They do happen, but it is unusual. The Lyme "people" say different, but their "researchers" say it is uncommon.
The best of luck to you. Quix
Hi Quix,
Thank you for your input and your time it is much appreciated. See below for the answers to your questions and some other information. If you have any questions, please let me know.
My Neurologist wants me to start either Copaxone, Rebif or Betaseron injectable very soon. I am currently doing Steroid IV Treatment once a month. I am still seeing my Neurologist as I am not sure at this point what direction I am going in. I will be seeing my Neurologist again on Sept 4 for the results of my second brain and spine MRI, he will be showing me the comparison from the first one. Note: I did get a second opinion from another Neurologist which agreed with the MS diagnosis.
Let me clarify on the Liver enzymes test, this result was from a previous blood test my family doctor did. On 3/8/07 when I ended up at my family doctor due to numb like feeling in tongue, lip, chin and they found high blood pressure, I was put on Altace 5 mg, Lasix 20 mg and Lipitor 40 mg. The next morning 3/9/07 I went and gave blood for test. The results from this test are what the elevated liver enzymes were from, and my family doctor at the time said we will have to watch and maybe change medication, but I thought to myself I had only taken one of each pill the night before. This was not from a test the Lyme doctor performed. Note: I in fact do not have high blood pressure as I have monitored my blood pressure at home for many months and it always is 120/80 or less. I found out when getting my lumbar puncture that my reading before the procedure were same as on 3/8/07, 150 over 119 and I was lying in bed reading a magazine relaxing. When the procedure was over my numbers were back down to normal and the nurses said that I have anxiety.
The Lyme doctor looked in my mouth and throat and said I have drainage, he did an x-ray of my head and said I had a big sinus infection. I do believe this because I have had on and off problems with my sinus on right side only, discoloration sometimes when blowing and pressure, pain which was not major pain but I do know this has been going on for a long time (well over a year) but this would come and go a few days with problems then nothing for a month and so on. All I can say now is, it seemed to be no big deal, but now I wonder and feel maybe I should have addressed this, but I have never been the type to go running to the doctor with every little problem. This doctor did in fact talk about Lyme and Co-infections. He prescribed Imoxicillin 500 mg which I take 2 pills twice a day. He also said he was doing a Yeast test ???. I have an appointment on Sept. 10 for the results of these tests.
I am worried due to the fact that my Neurologist wants me to do Steroid IV Treatment and also wants me to start either Copaxone, Rebif or Betaseron injectable very soon. Now the other doctor seems to be against these but at least he will be able to rule out other possibilities as I went to him to rule out Lyme. I am not sure what he would do if it ends up just being MS and nothing else as he seems to have a different angle from the Neurologist. But I just hope things don't get worst for me in the meantime.
The Lyme Doctor did give me a paper labeled ABSTRACT about detoxification of neurotoxins from infection and heavy metal burden which says: Oral detoxification with a Liver Flush with phsphalidylcholine (PC) and using IV therapy with the Essential form of phosphatidylcholine in an IV Lipid Exchange followed by a fast push with high dose Glutathione. We can approach infection, toxicity (mold, chemicals) and heavy metal burdens by healing the bilipid cell membrane and cleansing the liver/biliary tree /cardiovascular system with lipid therapy. Case studies of our patients with Parkinson’s, ALS, MS, Alzheimer’s, Lyme, and Autism will be presented who have a variety of health disorders and have been responsive to this remarkable therapy. I have no idea at this point what this is or means, but figured it is their form of treatment for my situation.
Thanks again,
Rob
Thank you for your input and your time it is much appreciated. See below for the answers to your questions and some other information. If you have any questions, please let me know.
My Neurologist wants me to start either Copaxone, Rebif or Betaseron injectable very soon. I am currently doing Steroid IV Treatment once a month. I am still seeing my Neurologist as I am not sure at this point what direction I am going in. I will be seeing my Neurologist again on Sept 4 for the results of my second brain and spine MRI, he will be showing me the comparison from the first one. Note: I did get a second opinion from another Neurologist which agreed with the MS diagnosis.
Let me clarify on the Liver enzymes test, this result was from a previous blood test my family doctor did. On 3/8/07 when I ended up at my family doctor due to numb like feeling in tongue, lip, chin and they found high blood pressure, I was put on Altace 5 mg, Lasix 20 mg and Lipitor 40 mg. The next morning 3/9/07 I went and gave blood for test. The results from this test are what the elevated liver enzymes were from, and my family doctor at the time said we will have to watch and maybe change medication, but I thought to myself I had only taken one of each pill the night before. This was not from a test the Lyme doctor performed. Note: I in fact do not have high blood pressure as I have monitored my blood pressure at home for many months and it always is 120/80 or less. I found out when getting my lumbar puncture that my reading before the procedure were same as on 3/8/07, 150 over 119 and I was lying in bed reading a magazine relaxing. When the procedure was over my numbers were back down to normal and the nurses said that I have anxiety.
The Lyme doctor looked in my mouth and throat and said I have drainage, he did an x-ray of my head and said I had a big sinus infection. I do believe this because I have had on and off problems with my sinus on right side only, discoloration sometimes when blowing and pressure, pain which was not major pain but I do know this has been going on for a long time (well over a year) but this would come and go a few days with problems then nothing for a month and so on. All I can say now is, it seemed to be no big deal, but now I wonder and feel maybe I should have addressed this, but I have never been the type to go running to the doctor with every little problem. This doctor did in fact talk about Lyme and Co-infections. He prescribed Imoxicillin 500 mg which I take 2 pills twice a day. He also said he was doing a Yeast test ???. I have an appointment on Sept. 10 for the results of these tests.
I am worried due to the fact that my Neurologist wants me to do Steroid IV Treatment and also wants me to start either Copaxone, Rebif or Betaseron injectable very soon. Now the other doctor seems to be against these but at least he will be able to rule out other possibilities as I went to him to rule out Lyme. I am not sure what he would do if it ends up just being MS and nothing else as he seems to have a different angle from the Neurologist. But I just hope things don't get worst for me in the meantime.
The Lyme Doctor did give me a paper labeled ABSTRACT about detoxification of neurotoxins from infection and heavy metal burden which says: Oral detoxification with a Liver Flush with phsphalidylcholine (PC) and using IV therapy with the Essential form of phosphatidylcholine in an IV Lipid Exchange followed by a fast push with high dose Glutathione. We can approach infection, toxicity (mold, chemicals) and heavy metal burdens by healing the bilipid cell membrane and cleansing the liver/biliary tree /cardiovascular system with lipid therapy. Case studies of our patients with Parkinson’s, ALS, MS, Alzheimer’s, Lyme, and Autism will be presented who have a variety of health disorders and have been responsive to this remarkable therapy. I have no idea at this point what this is or means, but figured it is their form of treatment for my situation.
Thanks again,
Rob
Glad you came on board and brought your concerns here. I know you have alot to think about but you came to the right forum and to sound advice.
GOD Bless,
Frann
GOD Bless,
Frann
(con't)
I practiced medicine for 23 years and I have seen antibiotics themselves cause death on several occasions. Putting aside sudden development of severe allergy, the usual cause is liver or renal damage or causing a life-threatening secondary infection. The best example is "pseudomembranous colitis." This is an over-infection of the bowel with a bacterium called Clostridia dificile - which is a member of the gas gangrene family. It is most often a result of the most common antibiotics, but has been seen with all broad-spectrum antibiotics. I have seen several cases of this. It is treatable (usually) if it is caught soon enough. I've seen three people die with it.
Someone yesterday passed a glib comment that antibiotics were a lot safer than the DMD's of MS which "kill people."!!!! The data on fatalities from the DMD's pale when put against the more numerous deaths from antibiotics. I'll be doing a review of the serious side effect of the Disease Modifying Drugs of MS soon.
If you read that thread, you'll see the comment, "I have no antibiotic resistance because I still have infection." I don't know what that means, but it is a riduculous thing to say.
Now, one approach would be to have a separate doctor, an ENT specialist, verify this big sinus infection with a CT scan. My unverified suspicion is that this will be called some sort of co-infection and used as evidence that your problem is indeed Lyme.
You could also put your faith in the Lyme doctor and treat for Lyme for a few years. If you are cured, then, great! Marvelous! Fabulous! If not, you could return to the first plan and resume treatment for MS as it is viewed by the first doctors you saw. If Lyme was not the answer, your only loss would be whatever damage might have continued to occur in the brain and spinal cord.
I did some reading about the Bio-Meridian Health Analysis. My OPINION only - sounds like one of those tests that the interpreter can use to "diagnose" whatever they wish to treat. I am not a Naturopathic believer (so it sounds like snake oil to me) and I am not the person to ask about it.
On a personal note, I am a physician, disabled by two "autoimmune diseases" one of which is MS. I have chosen the path that makes the most sense to me, but I am reading ever more and more on the alternative theories and treatments for MS. You are going to have to educate yourself and find who you believe in.
Quix
I practiced medicine for 23 years and I have seen antibiotics themselves cause death on several occasions. Putting aside sudden development of severe allergy, the usual cause is liver or renal damage or causing a life-threatening secondary infection. The best example is "pseudomembranous colitis." This is an over-infection of the bowel with a bacterium called Clostridia dificile - which is a member of the gas gangrene family. It is most often a result of the most common antibiotics, but has been seen with all broad-spectrum antibiotics. I have seen several cases of this. It is treatable (usually) if it is caught soon enough. I've seen three people die with it.
Someone yesterday passed a glib comment that antibiotics were a lot safer than the DMD's of MS which "kill people."!!!! The data on fatalities from the DMD's pale when put against the more numerous deaths from antibiotics. I'll be doing a review of the serious side effect of the Disease Modifying Drugs of MS soon.
If you read that thread, you'll see the comment, "I have no antibiotic resistance because I still have infection." I don't know what that means, but it is a riduculous thing to say.
Now, one approach would be to have a separate doctor, an ENT specialist, verify this big sinus infection with a CT scan. My unverified suspicion is that this will be called some sort of co-infection and used as evidence that your problem is indeed Lyme.
You could also put your faith in the Lyme doctor and treat for Lyme for a few years. If you are cured, then, great! Marvelous! Fabulous! If not, you could return to the first plan and resume treatment for MS as it is viewed by the first doctors you saw. If Lyme was not the answer, your only loss would be whatever damage might have continued to occur in the brain and spinal cord.
I did some reading about the Bio-Meridian Health Analysis. My OPINION only - sounds like one of those tests that the interpreter can use to "diagnose" whatever they wish to treat. I am not a Naturopathic believer (so it sounds like snake oil to me) and I am not the person to ask about it.
On a personal note, I am a physician, disabled by two "autoimmune diseases" one of which is MS. I have chosen the path that makes the most sense to me, but I am reading ever more and more on the alternative theories and treatments for MS. You are going to have to educate yourself and find who you believe in.
Quix
You have found yourself caught between two contradictory groups in medicine regarding the nature and causes of MS. This board erupted yesterday in a small debate over this very issue. I cannot answer your questions to my satisfaction and definitely not to the satisfaction of the Lyme Literate group you are now participating with.
I have a few comments, some of them left over from unsubstantiated things that were said yesterday, and some from my own reading and knowledge. The western medical establishment has devised a group of criteria to diagnose MS. You met those critieria and were placed on a treatment. I know that many MS doctors on the East Coast use monthly pulses of steroids in treating the disease. Are (were ) you also on a Disease Modifying Drug, such as Rebif, Copaxone, Avonex, or Betaseron?
Midstream, your family and friends alerted you to the possiblility that this is actuality a deep, systemic infection by the Lyme spirochete. This can cause an illness strikingly similar to what is traditionally known as Multiple Sclerosis. There is a growing group that believes that all/most of the diseases we now view as autoimmune are actually deep infections by one thing or another. They advocate treating your disorder with high-dose, long-term antibiotics.
You are in the process of being tested for the Lyme infection using the best tool available and from one of the best labs that does it. This is good.
You need to get results of all the testing and the reports that anyone has done on you for this illness. Having all of this in your possession will help begin to educated you and allow you to be the best advocate for your health you can. This new LLMD has found elevated liver enzymes. How high are they? If you can get the results and the normal ranges for your lab, we can see.
How did this doctor diagnose this big sinus infection, that you "apparently have had on and off for a long time?" The diagnosis of a sinus infection is a difficult one to make clinically. The Gold Standard for demonstrating a true infection of the sinuses is by CAT (CT) scan. Did this doctor say something about Lyme and Co-infections? What antibiotic did he prescibe? Some antibiotics elevate the liver enzymes and in high dose could do more harm.
The two groups disagree about the function of the immune system in the disease one calls MS and the other calls Lyme. That they are one and the same thing is NOT readily accepted by all medical professionals. Regular medicine calls the Lyme group "Fringe" and "Fanatics" and the Lyme group accuses the established medical group of being blinded by avarice, ignorance, bigotry, narrowmindedness and by the money of the big pharmaceutical companies who make an OBSCENE (emphasis mine) profit on the meds used for treating MS.
You rather have to make a choice which way you are going to go. I would be willing to lay money down that this LLMD will assess that you indeed do have the Lyme infection and recommend long-term antibiotics. I am a bit cynical about this, but it is true you are in an extraordinarily high-risk area. The two treatment approaches are mutually exclusive.
If you go with Established Medicine - the diagnosis of Multiple Sclerosis, they will not be offering you a cure, but rather hope of slowing down the progression of the disease, and the hope of delaying the development of disability. You likely have - in their view - Relapsing Remitting MS (Did they tell you what form they thaought you have?) The course of RRMS is one of waves of symptoms followed by complete or partial improvement. No one knows in the beginning if they will have many relapses and a lot of disability or a minor relapse every five years or so, or something in between. There is a huge amount of research on the side of this approach.
If you decide to follow the most current path with the Lyme doctor, you will be offered the hope of cure, of becoming symptom and disease-free, with antibiotics for as long as needed (sometimes years) until the symptoms and, perhaps the lesions, are gone. It certainly sounds like a better deal. I have only met about half a dozen people who were diagnosed with MS, then convinced that it was Lyme Disease, and who are on antibiotics. All of them (that I have met) have been on treatment for less than two years and all report remarkable improvement. This is wonderful.
But many , people I know with the diagnosis of MS and on the more traditional therapy, have also reported improvement (some total improvement) as their disease remitted.
I can't tell you which group is right.
I have the following caution from concerns left over from the "debate" yesterday. (By the way you might want to read it: it is on the thread titled "Q's for Tory," posted by Momzilla.)
Two claims were made that I consider false or misleading.
1) The first was that antibiotics are far safer and less expensive than the MS drugs. Longterm use of hefty dose antibiotics is not completely safe! While you are treating the Lyme spirochete (which has not shown much propensity for antibiotic resistance) you are also profoundly altering the other bacterial populations in your body. These can become and are becoming resistant to multiple antibiotics, thus you are putting yourself at greater risk of developing an infection (unrelated to Lyme) that might not respond to treatment.
New studies in children have shown, just this summer, that longterm use of antibiotics for chronic ear infections do indeed lead to resistant bacteria in the same child. It had always been said that the general population pool became resistant, not the individual child. Both are true.
I have a few comments, some of them left over from unsubstantiated things that were said yesterday, and some from my own reading and knowledge. The western medical establishment has devised a group of criteria to diagnose MS. You met those critieria and were placed on a treatment. I know that many MS doctors on the East Coast use monthly pulses of steroids in treating the disease. Are (were ) you also on a Disease Modifying Drug, such as Rebif, Copaxone, Avonex, or Betaseron?
Midstream, your family and friends alerted you to the possiblility that this is actuality a deep, systemic infection by the Lyme spirochete. This can cause an illness strikingly similar to what is traditionally known as Multiple Sclerosis. There is a growing group that believes that all/most of the diseases we now view as autoimmune are actually deep infections by one thing or another. They advocate treating your disorder with high-dose, long-term antibiotics.
You are in the process of being tested for the Lyme infection using the best tool available and from one of the best labs that does it. This is good.
You need to get results of all the testing and the reports that anyone has done on you for this illness. Having all of this in your possession will help begin to educated you and allow you to be the best advocate for your health you can. This new LLMD has found elevated liver enzymes. How high are they? If you can get the results and the normal ranges for your lab, we can see.
How did this doctor diagnose this big sinus infection, that you "apparently have had on and off for a long time?" The diagnosis of a sinus infection is a difficult one to make clinically. The Gold Standard for demonstrating a true infection of the sinuses is by CAT (CT) scan. Did this doctor say something about Lyme and Co-infections? What antibiotic did he prescibe? Some antibiotics elevate the liver enzymes and in high dose could do more harm.
The two groups disagree about the function of the immune system in the disease one calls MS and the other calls Lyme. That they are one and the same thing is NOT readily accepted by all medical professionals. Regular medicine calls the Lyme group "Fringe" and "Fanatics" and the Lyme group accuses the established medical group of being blinded by avarice, ignorance, bigotry, narrowmindedness and by the money of the big pharmaceutical companies who make an OBSCENE (emphasis mine) profit on the meds used for treating MS.
You rather have to make a choice which way you are going to go. I would be willing to lay money down that this LLMD will assess that you indeed do have the Lyme infection and recommend long-term antibiotics. I am a bit cynical about this, but it is true you are in an extraordinarily high-risk area. The two treatment approaches are mutually exclusive.
If you go with Established Medicine - the diagnosis of Multiple Sclerosis, they will not be offering you a cure, but rather hope of slowing down the progression of the disease, and the hope of delaying the development of disability. You likely have - in their view - Relapsing Remitting MS (Did they tell you what form they thaought you have?) The course of RRMS is one of waves of symptoms followed by complete or partial improvement. No one knows in the beginning if they will have many relapses and a lot of disability or a minor relapse every five years or so, or something in between. There is a huge amount of research on the side of this approach.
If you decide to follow the most current path with the Lyme doctor, you will be offered the hope of cure, of becoming symptom and disease-free, with antibiotics for as long as needed (sometimes years) until the symptoms and, perhaps the lesions, are gone. It certainly sounds like a better deal. I have only met about half a dozen people who were diagnosed with MS, then convinced that it was Lyme Disease, and who are on antibiotics. All of them (that I have met) have been on treatment for less than two years and all report remarkable improvement. This is wonderful.
But many , people I know with the diagnosis of MS and on the more traditional therapy, have also reported improvement (some total improvement) as their disease remitted.
I can't tell you which group is right.
I have the following caution from concerns left over from the "debate" yesterday. (By the way you might want to read it: it is on the thread titled "Q's for Tory," posted by Momzilla.)
Two claims were made that I consider false or misleading.
1) The first was that antibiotics are far safer and less expensive than the MS drugs. Longterm use of hefty dose antibiotics is not completely safe! While you are treating the Lyme spirochete (which has not shown much propensity for antibiotic resistance) you are also profoundly altering the other bacterial populations in your body. These can become and are becoming resistant to multiple antibiotics, thus you are putting yourself at greater risk of developing an infection (unrelated to Lyme) that might not respond to treatment.
New studies in children have shown, just this summer, that longterm use of antibiotics for chronic ear infections do indeed lead to resistant bacteria in the same child. It had always been said that the general population pool became resistant, not the individual child. Both are true.
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