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LLMD's more often hinder than help

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Posted 9/14/2013 6:29 AM (GMT -7)
Hi everyone

Some of you know me here and some don't. I have been a member here for a while and also had chronic/severe Lyme many years back, but I am also now (3 yrs) a Lyme Literate Naturopath.

When I got ill, I went to see an LLMD who prescribed me so many abx, I was not only housebound for 8 months, I was bound to my toilet. She didn't talk to me about detox, herxing or teach me about my body. She gave me 5 different abx and told me to go home. $1000 later, I was more sick after I saw her.
Now as a LLNP, ALL of my patients who come to me have been through the ringer with an LLMD and not only are they still sick, they are broke.

LLMD's are MD's and most (unless they went off to take course after graduating from med school) are not schooled in nutrition for chronic illness nor are they taught about detox and the procedures on how to detox.

I recall my first herx, I was so ill, I thought I was dying. I called my LLMD and she said "it's normal, drink lots of water". Umm ok! I didn't know back then to realize it was not normal to herx like that.
But what I did know is getting that sick from a herx was just not right. Taking all these toxic horrible abx was not doing anything for me.
Anyway, it's a whole other story on how I got well, but I did and I have been in full remission for 6 yrs. Getting rid of my LLMD and educating myself on my own body did wonders.

I don't want to be harsh with all LLMD's, because some of them are actually interested in proper healing, but don't be fooled. LLMD's know Lyme is big business and put the LL in from of their names and know little about how to heal from this illness.

Because you hire an LLMD or even someone like me an LLNP doesn't mean they are school is the art of healing. Ask a lot of questions, Ask to speak to their other patients, ask how they plan on working on your gut, detoxing and how they plan on supporting you through the healing process.



Jen

Post Edited (peacesoul) : 9/14/2013 7:32:58 AM (GMT-6)

Posted 9/14/2013 6:41 AM (GMT -7)
Hi Jen,

I have known you for years and I thank you for posting this!  I agree totally with everything you wrote because it's the honest truth! 

What I need to accept is many people are not capable of educating themselves or even wanting to learn why antibiotics do not work but only cause them problems.   A perfect example of this type of person is my own Mom.  Yes, whatever her doctors tell her (she does not have lyme but just suffers from other ailments being 87 years old), she does what her doctors tell her or takes whatever prescription medicine they hand out to her.

Then my Mom calls me after she has a bad reaction to her medicine and asks me to research it for her.  Sadly this is the mindset of most including my older brother who takes over 20 pills daily (not for lyme) and he wonders  why he can't sleep, can't function, etc.   Yet he eats tons of sugar, is overweight, depressed,  is now diabetic, etc.

Most LLMD's do not know about detoxing, why is that and how can they even call themselves Lyme Literate when they don't address the toxins?  

Again, thanks for posting this, I admire you so much as you walked a long, long road in your healing process and then became a Lyme Literate Naturopath, good for you!

Hugs,

Denise

Posted 9/14/2013 6:51 AM (GMT -7)
Denise, I also admire your work and dedication to your own healing and educating of others

Now for those who listen to the words of MD's who are clueless to true healing; all I can say is (and I have seen this over and over) people are comfortable in their pain lots of the time. If they get well, they need to be accountable for life. Of course, no one wants to be sick, but many don't even realize, they have all the power in their hands to get well. Those are some big shoes to fill.
How can we have all that power? right
Well you know what's tougher than being sick daily? Change! Change is a kick in the teeth.

What do you mean I need to change my diet? I can't do that

Most people cannot even fathom that they are responsible for their own illness and ultimately, their own healing.
And they will fight this theory over and over and defend it, but those who have truly healed from any illness know this is truth.
For years my wonderful MD told me my stress was causing all my issues. I was so angry at him for saying that.
I said "No I have Lyme" .......ugh I shiver when I think of how closed minded I was. I just wanted "the cure"
When I wasn't getting the "cure" and had no choice but to go deep and change.

Everyone comes to their own realization in their own time. Healing is about change, period!
Posted 9/14/2013 7:10 AM (GMT -7)
Hi Jen,

Yes, I agree that most people don't like change..  People get too comfortable living in their own patterns.. 

And what I am going to say next is really crazy but I do think this sometimes:  I think that some people don't even want to get well because they get attention from being sick.   Perhaps by staying sick is the only way they can get attention...   There are hypochondriacs who actually enjoy being sick.   I don't understand it but I have met these  type of people in real life.   They are not happy unless they are complaining. 

I don't know if people will eventually learn to think outside of the box..  Everyone is different.   I wanted to get well so bad and I did because I researched for endless hours only to read articles and in the end I compared all the different articles I compiled.   I bought books such as Dr. J's book "Beating Lyme" and Buhner's book "Healing Lyme"..   I am a very curious person and wanted to know what these people had to say about lyme disease but that's me.

And once again I agree with you that MD's who call themselves Lyme Literate are NOT.. 

Getting better takes work and I wanted to do the work as well as you did and other's I know.   I wanted CHANGE in a big way.. Hey, I even moved to a different state just to eliminate the stressors in my life.   Now that's change, LOL!!

Denise

Posted 9/14/2013 7:29 AM (GMT -7)
Do you not agree though, that if a person with these infections is going to use Allopathic medicine that using a LLMD is much better?

As you know, I healed using only herbs - but that does not mean that healing can not be attained with the use of abx....if the patient does their own research and is sure to use supportive therapies.

We sure don't want to discourage those that don't have enough faith in naturals to turn away from the only doctors that can help them!
Posted 9/14/2013 7:49 AM (GMT -7)
Yes of course, if one wants abx, they need to seen an LLMD or an ND who is allowed to prescribe abx.
I do not ever discourage any of my pt's from getting off abx, I work around their choices, but if they are or want to be on abx, I always work on their detox pathways, teach them how to eat for illness and work on their emotional healing.

My point of this was for anyone who is looking for an LLMD, to make sure they know what they're doing. Most of them actually do not
Posted 9/14/2013 7:53 AM (GMT -7)
Denise

Everyone takes a different path and does things that their souls say. If they are "happier" sick, then they feel that's part of their survival. I have pt's (not lyme clients), who no matter how I direct them to healing, they take the alternate route.

It's really mostly about fear. Those who don't want to change often, deep down, truly do want to feel well, but fear the path.
Everyone finds their way. If they stay the same, then that is their way.

It's frustrating because you and I put the hard work in to change, but we need to keep the focus on our teaching and hope for the best.
Posted 9/14/2013 7:59 AM (GMT -7)
WWJ: I so agree. When I first got sick, I was scrambling and my head was about to pop off on which direction I should be going with my healing.
My first contact with Lyme people when I got sick (from another board) was "Find an LLMD" and get on abx stat. Of course that's what I did.
The women who was "guiding" me was sick 20 yrs, on abx for 6 yrs, in a wheelchair and had no life besides meds and dr's appt's. Oh GOD that scared me.
I knew she was not someone I should be listening to. She started a Lyme group where everyone in the group was either on IV, or meds, not working, etc. It was a nightmare.
I knew enough that this was not a sign of "getting well"

I detached from those people pretty fast.

All I can say is someone needs to go through the gamut of MD's, LLMD's etc until they find what works for them. I made this thread because so many of my pt's all said "I have the worst LLMD" and I thought the same with my LLMD and not because she was not a great person, but because she pushed drugs on me and knew nothing else.
Granted there was not much know about dx and healing from Lyme then and I hear she tries to use some naturals now, but I often get her pt's who are just no getting well.
Posted 9/14/2013 8:01 AM (GMT -7)
I agree in many ways. I will say that my ND is far more knowledgeable than both my MD and neurologist about Lyme.

The sticking point is access to the abx. Even my ND believes strongly that they are helpful, in conjunction with her remedies, yet she cannot prescribe them. LLMD's agree with more progressive/long term/higher dose abx, but they charge ungodly amounts to be seen. Traditionally trained MD's act like abx are crack, and meter them out in tiny doses, making you beg for more.

The average person can't win in this system! We all must become Lyme experts and our own advocates in order to have a fighting chance. It's exhausting and frustrating.
Posted 9/14/2013 8:13 AM (GMT -7)
Yes, fear does play a role... Some need a doctor to hold their hand because they are too afraid to read a book or do their own research, or learn about protocols on their own, I get that.  

WWJD, I was very sick and desperate especially when I went from doctor to doctor over a period of 5 years or longer wanting one of them to tell me what was wrong with me (I didn't know I had lyme back then even though I had a rash).

I was so desperate that I would have accepted if one of those doctors told me I had cancer because then I would have had a "label" for was wrong with me and why I was feeling so horrible and lost the use of my legs, crawling around on the floor in my house.  I could not go buy food because I couldn't walk unless I used the crutches one doctor prescribed for me.  I used to put a robe over my nightgown and buy eggs and bread through one of the drive-in places so I wouldn't have to get out of my car.   Just getting to my car in my driveway took forever. 

I had no support from my family that lived around the corner, they just said to me that I was depressed.  They didn't believe that I was honestly very, very sick.

The only support system I had was the internet.  I couldn't find any more doctors to see so I said to myself "the h*** with this", I'll research my own symptoms myself.   And that's when I found everything I read kept saying Lyme.   The rest is history.   I actually diagnosed myself using the internet and found an ID doctor who sent my blood to IgeneX and sure enough I was 3 ++++'s positive for lyme and ehrlichia, yep, CDC positive.   Yes, I took the ID's doctor doxy for months only to get sick from that but back then my thinking was I had bad bacteria and only antiobiotics can kill them.

But I was not getting better so once again I turned to my own friend the internet and joined a lyme forum where members talked about detoxing and then another member talked about a new book that came out by Dr. Jernigan.  I bought that book and started to read...  The rest is history.

Thus I was one of those desperate and very sick people looking for help. 

Denise

Posted 9/14/2013 8:17 AM (GMT -7)
I too was very sick and desperate when I found this forum. I had to turn to abx as that was the standard at that point in time and I was much too ill and had major cognitive issues to be able to do much of anything on my own. I don't even believe that the abx helped me, but harmed me instead - but this isn't about that, as people need to feel the freedom to choose their own healing path.


This is about allowing this forum to stay abx friendly, just as much as it is herb/natural treatments friendly.
Posted 9/14/2013 8:40 AM (GMT -7)
Just to be clear to readers and mods, this is not a thread against the use of ABX, They certainly have their place.
The thread is to just inform others that LLMD's are not the end all to this crazy illness and "buyer beware"
Posted 9/14/2013 9:14 AM (GMT -7)
I believe in homeopathic treatments but I am taking antibiotics. I have neurological involvement which doctors are calling post lyme syndrome. I just spoke to a woman whose husband was recently diagnosed. She also told me her friend died of spinal meningitis due to Lyme.
Posted 9/14/2013 12:09 PM (GMT -7)
Yes and I will voice in here and say that I became almost asymptomatic on antibiotics BEFORE taking herbs/homeopathy. I would have been unable to work without abx for sure. I believe in all three but antibiotics for sure, helped me personally. I am off antibiotics almost 3 weeks now and doing okay. Actually off herbs too but I am going to add some back in since I bought them anyway and they don't hurt.
Posted 9/14/2013 5:44 PM (GMT -7)
My husband Toby was fortunate because we were already wary of what the doctors had to say due to many medical issues within our extended families that caused some deaths and other physical problems. We also knew people who who had late stage cancer and were healed using Rife machines. This led me to research autoimmune diseases online and find that Lyme mimics many, many medical conditions. In turn, that led to being tested through Igenex Lab. We definitely have to be advocates for our own health. We are also fortunate because the doctor we chose to help with the ALS symptoms is a chiropractor who isn't trying to make a large profit. He charges very little and obviously really cares about healing people who are sick. After the non-invasive treatment, Toby could do things he couldn't do before and is slowly healing. We have not spent much so we are lucky in that respect. I hate hearing about people having to spend thousands of dollars to heal. It just isn't right. I would try other protocols like herbs and other natural methods first before I spent so much money. However, as with Toby, PALS need to take an aggressive approach because of it's life threatening nature. I believe too that our minds play an important role in healing. We need to stay positive and believe that we can help heal our own bodies.
Thank you for your views on antibiotics. Toby tried Doxycycline for one month and it seemed to set him back so he didn't want to continue another month of it. I have always liked healthier approaches to healing, but people need to decide for themselves what is best for them. Also, what might work for one person may not be so good for someone else. If it doesn't work, then try something else. One thing I am sure we all would agree is that detoxification is also key to healing.
Posted 9/14/2013 5:57 PM (GMT -7)
To those that have posted......have you seen members get well using just antibiotics?  It seems to me that with all the members that have posted over the years and then not being on here anymore have healed.

Patty

 

Posted 9/14/2013 7:38 PM (GMT -7)
I'm lucky to have a doc that is both a MD and ND. He gets to know his patients and will offer suggestions and if someone wants to be on antibiotics, he will prescribe them. He uses herbals and supplements a lot, plus talks to his patients about detoxing. But he doesn't do classical homeopathy, so I have to go to a naturopath who is one. Naturopaths learn about it in their schooling, but only a few go on to specialize in it.

I feel that some doctors get trained to be lyme literate to make more money off people and others go into it because they truly want to help. I hope that's the majority.
Posted 9/14/2013 8:09 PM (GMT -7)
All LLMDs are not the same and all patients do not respond to the same treatments the same way. So we can't generalize here because Lyme disease as we all know affects us all differently and we all respond to treatments differently as well. Maybe some benefit from antibiotics and maybe some get more results from natural approaches. I agree that some LLMD's might push antibiotics without considering the "whole" body approach and that is not always the best when a person is this sick. I think that there are a lot of LLMD's that have done a lot of good for people as well. A lyme patient needs to go with their "gut" when picking a doctor and do what feels like the most comfortable approach. I think seeing only one doctor is a mistake and two different opinions are better because you can get an idea of which approach or style best suits your needs.
Posted 9/14/2013 8:20 PM (GMT -7)
LLMDs saved my life.

Just my $0.02.
Posted 9/14/2013 9:44 PM (GMT -7)
I can see Peacesoul’s point of view, and would like to add that it is not only LLMDs but also doctors in all sorts of specialties. I base my comment on my personal experience dealing with all sorts of medical specialists while seeking help in identifying my illness.

Before getting sick, I idolized doctors and in my youth, I wanted to be one. After getting sick, I have lost my respect for the medical profession because most of the doctors that I have dealt with have seemed uninterested in helping me or were not inclined to find the underlying cause of my illness. Most (I have HMO insurance) only gave me a maximum of 15 minutes to explain my problem, and in these 15 minutes I was examined and a decision was made of what was wrong with me. More than once I had to follow a doctor from my exam room into his next appointment’s exam room because my time had expired but I still had things to tell him/her. I guess I was desperate for help and wasn’t getting any.

This is when I started to help myself by self-diagnosing my illness. I think this made it worse because now I knew what I was talking about and begun to argue with my doctors. I found out real quick that doctors don’t like it when the patient knows more than them or when they are challenged in their diagnosis.

LLMD’s serve a purpose, and just like in any profession, there are good ones and there are bad ones. To those who seek initial treatment, I think that they are a good starting point because the odds are that they at least have some sort of an idea on how to get you on your way to recovery. The good ones will tell you about detoxing,will use a combination of antibiotics and natural supplements, and will show a genuine interest in helping you. The bad ones...well we know about them right?

It is unfortunate that Lyme and its co-infections are such debilitating illnesses that many people don’t have the mind, energy, or knowledge to seek help outside of a medical professional. The illness, the depression, the social isolation, the headaches, pains, and the uncertainty of knowing what is wrong can be overwhelming. Many just hide under the covers and wish/hope to die. Others, they grab themselves by the straps and fight back.

It is scary that I have done so much research seeking answers that now I find myself reading medical journals and publications and are able to comprehend most of the article, and what I don’t understand I look up. A 10 minute article might take me an hour to read from looking up all those "funny words".
Posted 9/15/2013 7:03 AM (GMT -7)
Opugirl just posted that " I became almost asymptomatic on antibiotics BEFORE taking herbs/homeopathy" - so we have a current member that has stated healing due to abx.

One thing to keep in mind here - both herbal and abx therapy are discussed on this forum and will be allowed.. No one gets to push one or the other on another member for any reason. Treatment protocols are a very personal choice and needs to remain this way on this forum. Personally, I could argue for both sides, even though I healed on herbals only and abx made me quite ill.

There are many reasons why someone couldn't heal on abx or herbals alone. Let's be very careful to not attack anyone for their choice of treatment here!
Posted 9/15/2013 7:51 AM (GMT -7)

BarnGurl said...
I believe in homeopathic treatments but I am taking antibiotics. I have neurological involvement which doctors are calling post lyme syndrome. I just spoke to a woman whose husband was recently diagnosed. She also told me her friend died of spinal meningitis due to Lyme.


Again to be clear, I am not against taking abx. This thread was about LLMD's. Also I do not practice or am very familiar in Homeopathy. I'm a Naturopath
Posted 9/15/2013 8:07 AM (GMT -7)

bbrian said...
LLMD's saved my life when traditional docs couldn't help due to constraints placed on them. When your ill you cant think or actively participate in researching your illness and choose between different avenues of treatment. Abx is the way to go as you cant hope and guess the herbal you choose in a disoriented state will turn you around. Abx kill the disease.
I believe that if tick borne infections are not stopped right away you need to attack it from many angles simultaneously. Abx's, herbal remedies, nutrition, supplements, exercise and alternative therapies all play a significant role in this approach to effective treatment. You have to change your life completely once you accept the fact that your battling for return of the active life you once knew. With that said, I am much better but still working hard at getting over this 14 months after the bite. I guess I must be doing something wrong as everyone else seems to clear it quickly. Which leads me to another thought.

What do we have in common that others who heal quickly don't? Is it the MTHFR mutation? A common history of vaccinations, genetically modified foods, infection type? The people who are ill for extended times have got to have some commonality. The one thing I know for sure is that we are not a bunch of hypochondriacs. If you tested positive for multiple infections as most of us have its just a matter of eliminating them. In my opinion it will take time, sometimes years and major life altering changes in the way you eat, think and live.

Yes LLMD's are great when abx are needed for a new Lyme infection, but for any infection that's gone into chronic phase, abx won't work. And that's because the organism is too infection. The terrain too polluted and there is no room to heal.
By this point, a person has become so physically and emotionally spent, there has to be an entire body healing, which the majority of LLMD's don't do.

I can't say why you would not be healing like others. Could be a MTHFR mutation, but then that means you just need to work harder on your emunctories (detox pathways) and probably really change your diet and find the correct detox program for you.

There are many good MD's (LLMD) out there, but there are more LLMD's out there working more for profit than to aid a Lyme patient. If a MD's free goes from $150 an hr to $900, they not in the business to help. My fee is way below that and I never increased it due to high volumes of people sick with Lyme. Lyme is becoming HUGE business and the people who suffer are the sick.
I'm irked only because i ran the gamut of seeing an LLMD and stayed sick after 1000's of dollars in. And now my patients come to me as sick as before and they are broke. I mean of course I don't hear of the success stories with LLMD's since they see me once they can't get help from them, so it's nice to hear some LLMD's are working for their patients.

Many good ones out there I'm sure, just be vigilant checking out an MD before u hire them.

Again, I am not against abx when used correctly.
Posted 9/15/2013 8:11 AM (GMT -7)

Traveler said...
Opugirl just posted that " I became almost asymptomatic on antibiotics BEFORE taking herbs/homeopathy" - so we have a current member that has stated healing due to abx.

One thing to keep in mind here - both herbal and abx therapy are discussed on this forum and will be allowed.. No one gets to push one or the other on another member for any reason. Treatment protocols are a very personal choice and needs to remain this way on this forum. Personally, I could argue for both sides, even though I healed on herbals only and abx made me quite ill.

There are many reasons why someone couldn't heal on abx or herbals alone. Let's be very careful to not attack anyone for their choice of treatment here!

This thread is not about abx vs herbal use. My opinion on abx varies and I would never advise a patient to get off or get on them. That is their choice and I work around it. My personal and professional opinion is abx does not heal lyme in chronic stages.
Posted 9/15/2013 8:15 AM (GMT -7)
"I don't know if your referring to me or not with the comment with this latest post of yours but I will guess you are. You deleted one of the greatest advocates for herbals because you couldn't handle his opinions. He was an independent thinker and valuable poster the likes of which we have never seen. Its assumed you threw him off because you were pushing your herbal concoction and he called you on it. We all have opinions and we should be able to be heard without threat. You are an incredibly valuable asset to this forum but so was he and you eliminated that voice by deleting all his posts after he suggested you were pushing product which you still promote in each and every post."

"I am still disgusted that magoo / shoobie was deleted because he was unlike anyone else I have read here. He took each and every one of those protocols apart and studied each component in them. Then gave us his analysis of each for our review. He worked out the individual herbs that were most effective in each protocol for each type of infection. The work on his part to get well was herculean and lost forever to this forum."

First of all, it wasn't my decision to ban either Shoobie or Magoo (I don't possess that power) - I presented the thread to Admin and they choose to ban Magoo - Shoobie couldn't stand the heat in the kitchen I guess.

Secondly, the reason I presented threads from Magoo is because they clearly broke the rules. Everyone here must follow those rules....including myself and the other Moderators here. No one is exempt.

As for who's to blame, why am I being held accountable for someone else's actions? Those that are still posting here are doing so because they have followed the rules - their choice. The Moderators are held to an even higher standard. So essentially Magoo & Shoobie choose to be booted out because they choose to not follow the rules. Plain and simple. It was never a 'my opinion against theirs' and has never been for me. Don't believe me? Check out all of my posts going back to 2007 when I joined this forum.
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