misdiagnosed writer wrote article about his lyme journey

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Simela
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   Posted 8/8/2010 4:19 AM (GMT -6)   

GWB
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   Posted 8/8/2010 8:05 AM (GMT -6)   
Great article! Thanks for posting it.

Gary

springsjean
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   Posted 8/8/2010 8:45 AM (GMT -6)   
Great article but just wish he had mentioned that most insurance companies deny IV rocefin treatment, even with positive diagnosis.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Simela
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   Posted 8/8/2010 8:47 AM (GMT -6)   
You're welcome, Gary! 

I think we should help each other in any way we can, and even though I don't have much to add now, I will gladly share my journey.  You have helped me already sooooooooooooo much!

THanks again for everything!  I guess my options are not many.  Since I can't detox, I am afraid I will get sick from the ax.  THis is getting harder than I thought...  I will keep you posted...

Deejavu
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   Posted 8/8/2010 9:08 AM (GMT -6)   
Thanks for posting this article Simela!  I wonder how this guy Bruce is doing now?  I noticed the date of the article is 2001, hope he is doing well..  I may send him an e-mail..   cool
 
Funny, I went to Stony Brook Hospital here on Long Island and asked the doctor I saw to test me for Ehrlichiosis (after doing extensive research my symptoms matched ehrlichiosis) and he said to me "If you had ehrlichiosis, you would be dead right now" and refused to test me for that..  Nice huh?   Well, years later I found out I did have ehrlichiosis (CDC positive yet) and last time I looked, I believe I'm very much alive, LOL!   smilewinkgrin
 
And wow, I almost saw Dr. Coyle but my GP refused to give me a reference to see her because he didn't believe I had lyme...  Imagine the course my life would have gone if I did see her?  I would have had IV Rocephin because I wouldn't have known any better back then, would have been sicker then I already was from the IV and the list goes on..  Whewww, am I happy that someone told me about Dr. Jernigan!   Knowing what I know now, I truly believe antibiotics are NOT the answer for chronic lyme for a variety of reasons..  Put poisons in my body to get rid of the other poisons not to mention the side effects?  Makes no sense to me..   
 
Denise 
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

OneWearyChick
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Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 9:09 AM (GMT -6)   
Simela,
 
I really liked this article; it made me think of several similar ones I have read through the years. One in particular was given to me by my accupuncturist that was in Psychology Today. I went back to look that one up to add but instead came up with quite a few - here is the link to those if anyone is interested http://www.psychologytoday.com/search/query?keys=lyme+disease
 
One thing that has repeatedly resonated with me in many of these stories is how effective one round (usually 30 but rarely more than 60 days) of antibiotics it has taken for those lyme sufferers to recover, fully recover, not the multiple rounds of multiple antibiotics that are now suggested by most LLMDs. And those people who have effectively healed are not buying and taking other products (vitamins, supplements, hormone replacements, etc, even after years of suffering). One has to wonder why or how that is or can be, but it happens, however, seemingly not as much as it should anymore.
 
Note, the article you posted was over nine years old as many similar ones are. It is only in recent years ILADS has suggested such guidelines that it has. Unfortunately too many read those and believe it is the only way to go, when it isn't and often is even more harmful to the patient/lyme sufferer.

Deejavu
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   Posted 8/8/2010 9:12 AM (GMT -6)   
No comment at the moment to OneWearyChick except for are you going through Menopause right now?  Hellooooooo???  
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/8/2010 9:19 AM (GMT -6)   
Denise:
I was thinking the same thing:  HOW is he NOW?  THe article was written in 2001!!!  If you have better searching internet skills, I would like or one of us could email him?  I have found out a lot of his work on line, he writes for Vanity Fair, Screen plays, etc.  HOW CAN I FIND HIS EMAIL?  It seems he has a very poorly done site, and asks to contact the editor--not even an email!  Maybe you guys are better at this then me.

LONG ISLAND?  Someone I have met a few years ago, had Lyme and many other illnesses.  HE IS in a wheelchair!  He was on so much medication!  I have emailed him, but I haven't got a response--I HOPE he is Ok.  Guess where he was from?  LONG ISLAND!  I didn't know anything about Lyme, back then!  It had completely destroyed his life!  He was making $70,000/yr, and then one day he ended up in the wheelchair! 

He said to me:  "I have lyme, cholera (sort of, I don't know what he called it, but he said is some sort of cholera) etc ect etc

He said:  "for everyone out there who gets it, don't expect drs to help you"

I have thought about him so many times, and I couldn't remember how I could get in touch with him.  I feel so sorry for him, because we didn't know what to say.  Neither of us had it, and had no clue what it was.  I kind of didn't say anything, we're just talking politics for a while.  I've never met him in person bec he is in Long Island and I am in PA. 

OneWearyChick
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Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 9:20 AM (GMT -6)   
No, I'm not even close to menopause. I have no clue why you would ask that from my post. (?)

Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 8/8/2010 9:23 AM (GMT -6)   
OneWearyChick said...
Simela,
 
"I really liked this article; it made me think of several similar ones I have read through the years. One in particular was given to me by my accupuncturist that was in Psychology Today. I went back to look that one up to add but instead came up with quite a few - here is the link to those if anyone is interested http://www.psychologytoday.com/search/query?keys=lyme+disease
 
One thing that has repeatedly resonated with me in many of these stories is how effective one round (usually 30 but rarely more than 60 days) of antibiotics it has taken for those lyme sufferers to recover, fully recover, not the multiple rounds of multiple antibiotics that are now suggested by most LLMDs. And those people who have effectively healed are not buying and taking other products (vitamins, supplements, hormone replacements, etc, even after years of suffering). One has to wonder why or how that is or can be, but it happens, however, seemingly not as much as it should anymore.
 
Note, the article you posted was over nine years old as many similar ones are. It is only in recent years ILADS has suggested such guidelines that it has. Unfortunately too many read those and believe it is the only way to go, when it isn't and often is even more harmful to the patient/lyme sufferer."
 
OneWearyChick, your mentioned hormone replacements and I am taking natural hormone replacement supplements which is helping me greatly as I was suffering from hot flashes, insomnia, etc.    And Supplements keep my immune system strong as well as daily detoxing...
 
Denise

It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 8/8/2010 9:26 AM (GMT -6)   
Hi Simela,
 
I'm working on sending this Bruce guy an e-mail..  
 
Anyway, I really feel bad for your friend who is in a wheelchair, the antibiotics that were probably given to him probably made him worse..    If you can find his e-mail address, let me know as I would like to talk with him...   That's so sad...
 
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

OneWearyChick
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Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 9:28 AM (GMT -6)   
Okay, I think you misread or mis interpretted my post. I'm not looking to start anything, simply to point out somethings I have noted.

I also take supplements, detox and do some hormone replacement because I do feel to treat properly you have to treat it all if there is the need. But ....................I have noticed there are others who have 'healed' who do not and I do ask why not, why is there no need for them, but for you and I. (?)

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/8/2010 9:33 AM (GMT -6)   
VIEW IMAGE
OneWearyChick:

WE DO NOT KNOW how these people are now, I would sure like to find out--and that is why I have posted this!  Maybe they are doing long term abx BECAUSE those people that were THOUGHT to be success stories relapsed since then?

I did 3 weeks of ax and my symptoms COMPLETELY dissapeared for almost a year...  Why do you think I am here?  I trusted my doc that 3 wks of ax were enough...  THEY WERE NOT!  I have days that I can't open the bathroom door and my 5 and 6 year old are helping me!  It is a very easy door to open, if your finger bones do not hurt!

Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 8/8/2010 9:36 AM (GMT -6)   
OneWearyChick,
 
No, I didn't misread your post, I don't understand how you can speak for others who are healed from lyme such as myself.   I know many who are healed and buy supplements to keep them healthy.  
 
I don't know where you get your information from?
 
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 9:47 AM (GMT -6)   
Denise,

Clearly you have misinterpetted my intention/my post. I am entitled to my opinion(s) and ideas, I am sorry you find them so offensive.

My understanding is that you healed from lyme using alternative treatments; why then do you find my post so offensive? I did not attack anyone or anything in my post; why must you always feel the need to attack me when I do post?

As for my information sources, they are plenty and well rounded and from experience and although you may not agree with them for whatever reason, they are what they are and have suited me quite well in my own experience.

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/8/2010 9:57 AM (GMT -6)   
Denise,
I used to post on a political thread before I had my baby. Just for a few months. We were discussing different things, I have never met the guy in person. I don't see him posting anything recently. I have contacted him this morning, but he did now respond yet. I am worried, but I am hoping he will respond soon and hoping he is ok! I haven't talked to him in about 1 year. I just feel bad for him, because I know what I feel is pitty compared to what he was enduring... And I didn't say anything to him to make him feel better... :(

I will let you know if I find him!

lylaso
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Date Joined Jan 2010
Total Posts : 57
   Posted 8/8/2010 11:12 AM (GMT -6)   
OneWearyChick,

I find myself wondering the same things. I know people cured of Babesia and Bartonella who did not go to LLMDs. It's a complex issue. I'm sending my blood to a researcher in NC, to determine what type of Bartonella species I have. I'm sick of treating "something" and not getting anywhere.

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 8/8/2010 12:15 PM (GMT -6)   
I read that artifcle with interest and a little skepticism. Maybe I didn't understand it. It seemed to me that the conclusions were that Lyme is difficult to get, easy to cure if caught early, and, even in the case of the writer who had it in his brain and nervous system, fairly easy to cure since after a month of IV he was reportedly better. In my visits to forums, my personal experience with local Lyme friends, and from what I've read in the Lyme books I have, I have not encountered the phenomenon of recovery after a month of IV and nothing else. I hope information will come in from that author about how he is doing now. That would be interesting.

For the 10 years or so that I was actively sick with this, my symptoms would disappear sometimes for a couple of years at a time. I sure thought I was cured of the mystery malady that plagued me. But I always got sick again. I think it's important to follow up to find out if the cure is persistant, or if, like it was for me, it's just part of the disease syndrome.

The other thing I'd really like to confirm is the doctor's assertion that most people who think they have Lyme really don't have it. I'm wondering what the scientific basis for that statement was, and if it is still considered valid.

Rose
I have Lyme; it doesn't have me.

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/8/2010 12:30 PM (GMT -6)   
WE DO NOT KNOW if the writer is cured or not, do we? He wrote this article 10 years ago... Everyone is different. And for people that you think got cured without an LLMD, maybe they did FOR NOW, even the writer is skeptic in the end, if you read carefully, he is not sure he was cured or not, he never ssaid he is sure he will not relapse. I WOULD LIKE to know what happened to him. Also, you are missing the part that germs HAVE GOT MUCH STRONGER, AND that's what the dr. warns about THEN. I am quite sure treatement was different--probably more limited and he does not even mention detox...

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 1:05 PM (GMT -6)   
Regarding treatments: It should seem pretty obvious to us. Some people die of the flu. Most get well on their own. Some people survive cancer, many do not. Some can survive chemo and some can't. Before abx Rocky Mt Spotted Fever killed nearly 50% of its victims. How did 50% survive? None of us are just like others. All of our immune systems are different, added to the fact that w/ Lyme, our immune systems vary even more.

As little as conventional medicine knows about Lyme and ESP the co-infections, we are all guinea pigs. Some of us will get better and some of us won't. Since we don't even yet know or understand ALL of the ramifications of these infections, it is no wonder that there is so much mystery and controversy.

I don't know yet how I feel about long term abx. I do know that 60 days of high doses relieved many of my worst symptoms, tho not all. Even the LLMD cannot say if the abx caused the Bb to morph into cell form, go into hiding, or if most were killed and it just took awhile for what was left to reproduce enough to make me sick again.

He is a leading Lyme, Aids, MS, CFS Dr in my area, and for Lyme he treats w/ abx. For life, if necessary. I don't yet know how I feel about this. All I know is that he maintains his patients get well. (I know, I know, how can they be well if they need abx?)

Denise, I am very interested in your protocol and will be looking at it more closely soon. I had just come to such a helpless and hopeless feeling state that I wanted to at least start w/ abx to get some relief and a little more strength. I also HAD to find a Dr covered by my insurance and this one is.

btw, I am preparing to ask him about LDN. I've brought it up before and haven't ever seen much on here about LDN. It's on the MS board some. This sounds to me pretty much like a wonder drug.

In the article posted on this thread, he mentioned 'a rapid test-a finger stick to be used right in the doctor's office-that he says
is more accurate than lab tests and should be available later this year'. And that was 2001. Whatever became of this?

I was pretty suspicious when his Dr said '"Our research shows that 75 percent of the people who think they have the disease actually don't," he continued. "They may have some vague illness, but it's not Lyme."

What made this Dr so sure that he was able to diagnose every case of Lyme? In that 75% who did not receive a positive diagnosis OF ANY KIND, I wonder how many actually DID have Lyme and this Dr's test missed it, for all the reasons that we already know about?

Too much unknown. We've gotta find ways to hash this out and get somewhere. I believe the time is coming that we may all be kicked to the curb. When our own President says stuff like many people may have to accept pain pills instead of having procedures done, I believe that some of us will be the first to fall by the wayside.

I don't mean or want to have a political discussion, but this was an actual statement that was made that concerns me. Esp as it may concern us.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 1:46 PM (GMT -6)   

VIEW IMAGE
OneWearyChick:

WE DO NOT KNOW how these people are now, I would sure like to find out--and that is why I have posted this!  Maybe they are doing long term abx BECAUSE those people that were THOUGHT to be success stories relapsed since then?

I did 3 weeks of ax and my symptoms COMPLETELY dissapeared for almost a year...  Why do you think I am here?  I trusted my doc that 3 wks of ax were enough...  THEY WERE NOT!  I have days that I can't open the bathroom door and my 5 and 6 year old are helping me!  It is a very easy door to open, if your finger bones do not hurt!

Simela, I understand your frustration; you may have had a relapse, but you could also be experiencing other issues (that may or may not be lyme related) such as viral infections or hormone or nutrient deficiencies. Have you ever had your viral loads checked or your hormone and / or nutrient levels? I'm not downplaying your situation, but just want to give you another angle to look from (especially if the one you are currently using, isn't working)

And, yes, maybe this writer, Bruce Feirstein, relapsed, but maybe not. I agree with +Lyme, we are all different and individual and some do quite well on a simple (or seemingly simple) treatment plan and some do not. My belief is that we shouldn't always assume our only options for full  recovery is the toughtest treatment, but that is me and this has been my own experience.

I hope you find relief however you can. I know it can be tough to be so ill with children.

 

 

 


OneWearyChick
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Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 1:51 PM (GMT -6)   
OneWearyChick,

I find myself wondering the same things. I know people cured of Babesia and Bartonella who did not go to LLMDs. It's a complex issue. I'm sending my blood to a researcher in NC, to determine what type of Bartonella species I have. I'm sick of treating "something" and not getting anywhere
 
lylaso ~ have you been tested for viral infections (ebv, Fifths' Disease, all the herpes (no I don't mean the genital ones either necessarily either) etc.) ? If not you may want to include that with your tests.
 
I agree whole heartedly if what you are doing isn't helping, it is time to re-evaluate. I hope you post your results, I will be interested in them and hope they give you some answers (and some help)

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 1:55 PM (GMT -6)   
The other thing I'd really like to confirm is the doctor's assertion that most people who think they have Lyme really don't have it. I'm wondering what the scientific basis for that statement was, and if it is still considered valid.
 
Rose, I think the doctor meant that maybe those people suffer from other ailments, other viral and/or bacteria infections. For expample, if you have ever spoken to an adult with Fifths Disease/Parvo (human form) it is exactly symptomatic of lyme disease. Being a doctor who specialized in lyme treatment and research (and he still has a good MD/patient rating), I would say he is a good doctor - not trying to down play lyme at all.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2010 2:02 PM (GMT -6)   
OneWearyChick: You'll probably note that I started a new thread asking some of these types of questions. You can see in my signature the virals for which I was positive (altho my new LLMD thinks Parvo and HHV6 may not be high enough to be active, altho EBV is too high and he diagnosed chronic mono).

It seems a LOT Of us here DO have these viral infections. My first LLMD tested me for all these. Why? When they came back high, he diagnosed Lyme. (based also on western blot and CD57)

I think it's pretty obvious that all these things are related, and they are related to Lyme in many of our cases. But no one's figured out the relationship or which came first, etc.

My LLMD recently published a research paper on HHV6 and it's relationship w/ CFS. Too difficult for me to understand, but clearly this is still a mystery and a question. When someone on here tests positive for some of the virals, it certainly does not rule out Lyme. In fact, it seems that may lend weight to a Lyme diagnosis.

My other post asks questions about this stuff.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 8/8/2010 2:05:50 PM (GMT-6)


OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 8/8/2010 2:05 PM (GMT -6)   
Regarding treatments: It should seem pretty obvious to us. Some people die of the flu. Most get well on their own. Some people survive cancer, many do not. Some can survive chemo and some can't. Before abx Rocky Mt Spotted Fever killed nearly 50% of its victims. How did 50% survive? None of us are just like others. All of our immune systems are different, added to the fact that w/ Lyme, our immune systems vary even more.

As little as conventional medicine knows about Lyme and ESP the co-infections, we are all guinea pigs. Some of us will get better and some of us won't. Since we don't even yet know or understand ALL of the ramifications of these infections, it is no wonder that there is so much mystery and controversy.

I don't know yet how I feel about long term abx. I do know that 60 days of high doses relieved many of my worst symptoms, tho not all. Even the LLMD cannot say if the abx caused the Bb to morph into cell form, go into hiding, or if most were killed and it just took awhile for what was left to reproduce enough to make me sick again.

He is a leading Lyme, Aids, MS, CFS Dr in my area, and for Lyme he treats w/ abx. For life, if necessary. I don't yet know how I feel about this. All I know is that he maintains his patients get well. (I know, I know, how can they be well if they need abx?)

Denise, I am very interested in your protocol and will be looking at it more closely soon. I had just come to such a helpless and hopeless feeling state that I wanted to at least start w/ abx to get some relief and a little more strength. I also HAD to find a Dr covered by my insurance and this one is.

btw, I am preparing to ask him about LDN. I've brought it up before and haven't ever seen much on here about LDN. It's on the MS board some. This sounds to me pretty much like a wonder drug.

In the article posted on this thread, he mentioned 'a rapid test-a finger stick to be used right in the doctor's office-that he says
is more accurate than lab tests and should be available later this year'. And that was 2001. Whatever became of this?

I was pretty suspicious when his Dr said '"Our research shows that 75 percent of the people who think they have the disease actually don't," he continued. "They may have some vague illness, but it's not Lyme."

What made this Dr so sure that he was able to diagnose every case of Lyme? In that 75% who did not receive a positive diagnosis OF ANY KIND, I wonder how many actually DID have Lyme and this Dr's test missed it, for all the reasons that we already know about?

Too much unknown. We've gotta find ways to hash this out and get somewhere. I believe the time is coming that we may all be kicked to the curb. When our own President says stuff like many people may have to accept pain pills instead of having procedures done, I believe that some of us will be the first to fall by the wayside.

I don't mean or want to have a political discussion, but this was an actual statement that was made that concerns me. Esp as it may concern us.
 
+Lyme
 
You have made some very valid points. ( I wondered about that rapid test/finger stick mentioned also.............) As for the medical  changes coming down the pike, I agree, it is frightening for many of us. I am still trying to understand how or if it will effect treatment options we currently pay out of pocket for.
 
I have heard good things (and some bad) about LDN. My llmd was not a supporter of it, maybe yours will be. I have read of other lyme patients having success with it. To me it makes sense that it would be beneficial. One thing to keep in mind, if you are gluten free, some sources are not.
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