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Posted by TF (Member # 14183) on :
Lately I have seen a number of posts where the person asks if it is worth the money to travel to see a top notch doctor.

People need to know what distinguishes the "men" from the "boys" when it comes to lyme treatment. Then, they will see that it is worth the money.

Also, this is something to think about for those who want to save the money and self treat along with the help of a willing doctor.

I am reposting here a response I wrote to someone almost a year ago. Here is their post and mine. The thread is also listed below.

The question was:

I'd like to know what these big wig LLMD's do that is different than the lesser knowns. Like, why do people travel across the country to go see someone well known, if there is someone closer who is an LLMD but not as well known

My old post:

Hambone, I believe there are a few things that make certain doctors, like Dr. H, more successful.

From what others have told me, Dr. H. leaves no stone unturned at the first appt. He seems to be very good at discovering the cause of why the lyme patient is still ill in spite of previous therapy.

He searches into things that the lesser doctors don't look into. For example, through his questioning, he can uncover if heavy metals may be an issue for the patient, or mold. Few lyme doctors go there. He asks about childhood exposure to chemicals and various types of factories or plants that were near the person growing up as a way of gauging whether metals are causing the problem. Then, he follows his suspicions with appropriate tests.

It is a real skill for a person to uncover what is preventing a patient from getting well. Dr. H. seems to have that skill based on reports others have given to me.

It takes a very broad knowledge of everything that can hold back a lyme patient to be able to discover the cause of prior treatment failures.

It takes a lot of experience with patients to figure out what is likely going on with a particular patient.

Then, a great doctor orders tests that other lesser doctors don't order. Again, the broader knowledge of the great doctor.

A top notch doctor also knows a lot more medications that can treat any particular illness. A lesser doc knows one or maybe two possible treatments. If the patient can't take a necessary med, the lesser doctor may often not know of any possible alternative. A top notch doc knows a number of alternatives.

A top notch doc will have more complex treatment plans. He/she knows what meds can be combined and what med does not have to be taken daily. So, that doc can devise treatment plans that attack more than one disease at a time. Saves the patient time in getting to healthy.

Other tricks that top notch doctors have are things like knowing that a certain medication must be ramped up slowly or side effects will likely force the patient to have to stop the therapy. Or, knowing to add in artimesinin later after babs treatment is underway for a while rather than right at the start because that way art is more effective. These are just 2 examples.

These kinds of things aren't published anywhere. This type of knowledge comes from experience and perhaps experimenting over years of treating lyme patients. That's how Burrascano came up with his successful treatment protocol.

A top notch doc knows the possible side effects of a med, even the ones that are not published. So, for example, a third rate lyme doc will not know that Mepron can cause depression in some people and, because of this lack of knowlege, will ignore the patient's report of making plans to commit suicide while on Mepron, never realizing that the Mepron must be stopped. They will tell the patient to see a psychiatrist instead.

Lesser docs won't realize that even steroid nasal sprays should not be used by a lyme patient.

Lesser lyme docs don't realize the importance of diet and exercise to recovery from this disease. So, their patients suffer. Lesser doctors don't believe supplements are important, so they don't prescribe them. Or, they have just a very rudimentary knowledge of supplements and herbs and how they can assist the lyme patient to alleviate various symptoms that are presented.

Lesser doctors don't know much about yeast or which probiotics are the best.

Lesser docs don't know how to boost a person's immune system so that the person is less likely to relapse.

Lesser docs don't even know how to test Mepron levels to ensure they are adequate.

It all comes down to more knowledge of a wide variety of related subjects, more experience that has given more knowledge, more skill at finding the cause of the person's problems, maybe better listening skills, and the ability to tailor treatment to the particular person's allergies and reactions.

I believe it takes at least 10 years of treating this disease to develop this kind of expertise.

I also think that a doc who actually had lyme himself is in a better position in many ways to treat this disease compared to a doc who never had it. Maybe it makes the doctor take the patient's reports more seriously, or gives him understanding about the anxiety this disease causes, or understanding of herxes and flares, etc. I don't know.

I have never heard of a doctor spending as much time as the patient needs at the first appt. But, this is what I have been told about Dr. H. by his patients. A 3 1/2 hour initial appointment! That is the kind of thing that makes one doctor outstanding while another is applying a cookie cutter approach to the same problem.

Just some of my thoughts based on hearing experiences from lyme patients for many, many years.

Hope this helps you guys understand the types of things that distinguish the top lyme docs. This illness is not simple to treat.

Many doctors treat it, but only a few know how to get rid of it for a person.

That said, still some cases of lyme are rather simple, and a local doctor may be successful with these cases. More complex cases, he will not be able to get the person to wellness. The most complex cases definitely require a top notch doctor if the person is ever to get well.

The key is for the patient to figure out whether or not his/her doctor knows enough to get them well. That takes a well educated patient.

You can't just sit back and wait for the magic to happen with this disease. If you do, it may never happen. So, learn all you can about lyme treatment and evaluate your doctor's skill and the complexity of your own case. Then, find a doctor who is able to do it for you. There is a learning curve. Most don't start out with the doc who is the best for them. Be willing to change docs, as scary as that can be at first.

[end of old post]

This post appeared in the following thread:

As I get more and more patient reports, I see more and more skills that the best lyme doctors have. For example, knowing how to get a patient who cannot tolerate high doses of antibiotics to be able tolerate high doses.

All of these things can make the difference between getting rid of lyme and never getting rid of it in a particular person's case.

Hope this helps folks to decide to go to the very best lyme doctor they can afford.

[ 02-22-2012, 02:06 PM: Message edited by: TF ]
Posted by Lymetoo (Member # 743) on :
Very helpful. I'll add it to the thread in Seeking about why you need an LLMD.

I'll also add it to the Quick Links to Popular Topics.

Thanks!! [Smile]
Posted by Razzle (Member # 30398) on :
Do any of the "top notch" LLMD's take insurance?
Posted by fflutterby (Member # 28081) on :
Very well said, bravo. I am one of the ones who thought my "not so top notch" Doc could do it for me. 18 months later and I am in awe by my first appointment with my "top notch" Doc.

The good ones may not but if you have out of network benefits, you may get some of it covered.

Thats what I meant to say [Wink]

[ 02-25-2012, 12:33 PM: Message edited by: fflutterby ]
Posted by Lymetoo (Member # 743) on :
Originally posted by Razzle:
Do any of the "top notch" LLMD's take insurance?

I doubt it, but your insurance may reimburse you part of the cost.
Posted by skies (Member # 28064) on :
Well said, a great reminder.
Posted by nefferdun (Member # 20157) on :
If ONLY I had seen THAT doctor!! I thought I was seeing a great doctor. I traveled 2000 miles each way. He was a "guru", well respected in the lyme literate community, had even come up with one of the universal test used by all LLMDs. Isn't that "Top Notch"? He was expensive; $650 an hour and we did not go over that hour. He was very careful about that!

Despite the brilliant reputation, he gave me the no brainer treatment; mepron and zithro. That's it. Period. He took me off all supplements saying they were a waste of time. He refused to talk about long term treatment or the other infections he was not addressing.

He did a lot of tests to rule out auto immune disease such as RA, even though I told him I did not have joint pain. After seeing my blood mercury was normal, he told me heavy metals were not a problem. He never mentioned any genetic mutations that might affect my ability to detox or weaken my immune system.

He refused to treat any infection that did not have a positive test result. He said I did not have bartonella even though I had responded to Levaquin. He said even though IGENEX did not test for Bart quintana, I could not have it because the test for bart henselae would cover it.

He basically shrugged his shoulders when I said I had trouble tolerating drugs. He gave me aseroquel, a drug for mental illness, to address my insomnia. It was months before I realized it was putting me to sleep but I could not wake up.

At the three month consultation, her refused to alter treatment or discuss any future options. More of the same.

I went back to treating myself and THAT is when I made progress! So that is another reason why we do not always go with the top notch doctor. It isn't always because we are cheap or broke and want/need to save money. It is because we can't find him!
Posted by Marcie (Member # 10070) on :
Thanks for taking the time to post this. Lots of good information.
Posted by Keebler (Member # 12673) on :
TF, very well said.

Adding for newcomers:

Diagnosing Lyme Disease (&/or whatever else is going on)


(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.

[ 02-23-2012, 08:14 PM: Message edited by: Keebler ]
Posted by aperture (Member # 34822) on :
That's also why Lyme is the disease for the wealthy.

If you can afford the best Dr's and best treatment protocols, you have a better chance at getting your life back.

If Lyme has destroyed your livelihood, when you were just starting out in life and don't yet have a nest egg, and you don't come from a wealthy family...what then?

In this case, I scrimp, save, borrow, sell everything possible and get my family to a great ILADS educated LLMD who is knowledgeable and thorough, even if his or her name isn't Dr K, Dr J or Dr H.

(I thought I had a great Lyme Dr at the time, but after suffering the consequences of having an inexperienced, although well-intentioned, LLMD, I know I was wrong and naive when I posted this...I have since changed my tune and my LLMD)

[ 04-03-2012, 11:06 PM: Message edited by: aperture ]
Posted by desertwind (Member # 25256) on :
Great post. I agree with aperture.I am not wealthy and my credit cards keep going up and up. But I cannot imagine a life of tick borne infections.

I spent 7 years back and forth between the not so top notch LLMD and could only achieve remission.

And just kept getting worse with each flare-up.

NOT ONE LLMD I saw ever tested me for Q-Fever. Dr. H. did and it came up high positive.

I am only 3 weeks into treatment with him but am feeling, at times, better then I have in years.

Why? Becasue he is treating agressively and smart and taking all other health factors into consideration. I am on 4 different meds and tons of supp.'s.

With my back against the wall I had no choice - it was the top - notch guy or continued treatment failures.

Way too soon to tell if the tx. will be effective long term but I feel that I am in the best hands possible.
Posted by lymeboy (Member # 24769) on :
Part of the reason the attitude towards LLMD's can be negative is that many of them are INCREDIBLY overpriced, and just not getting anyone well. After being "robbed" by one or two mediocre/ bad/ charlatan LLMD's, one begins to think the whole thing is a racket and lose faith in healthcare altogether (for good reason).

There are a few good Lyme docs out there. Literally. This is why people travel far and wide to see certain docs. If you deal with this disease long enough, you learn this. I wish it were not the case, but sadly it is.

As a poor person, I have spent plenty of time cursing the high prices. Especially when I was paying for care that wasn't going anywhere. But I finally got to someone that is helping me, and I am dealing with the money issue. For the most part, it is that initial 2 visits that wipe you out.

In a perfect world, Burrascano and Dr. H. would be sitting on government boards, and ALL docs would know what Dr. H. knows. But.... well you know the rest.
Posted by aperture (Member # 34822) on :
Wow desertwind. I had never even heard of Q-fever before.

That is wonderful that you are making obvious progress.
Posted by seekhelp (Member # 15067) on :
I feel willingness to spend TIME with a patient is key. Very few do this. They are all thinking about where they need to be next. I understand it's just business, but This is getting worse and worse in medicine. It's getting old fast.

Also, way too much guessing and not enough fact-finding.
Posted by Lymetoo (Member # 743) on :
Why don't LLMD's take insurance??? ( some do )

The reason .. HERE:

Posted by hopeful4 (Member # 8486) on :
Thank you for this post. Great info. Food for thought.
Posted by Razzle (Member # 30398) on :
Ok so apparently some LLMD's DO take insurance and are decent doctors. Can someone PM me with these doctors contact info? I cannot afford to not have insurance coverage of doctor visits...I don't even have enough money for food, never mind treatment, but my DH makes too much money to qualify for any kind of assistance (we don't have kids, which rules us out for just about everything assistance-wise where we live).
Posted by Robin123 (Member # 9197) on :
Some LLMDS do take insurance. Thank goodness for them. We need more, so people can access them.
Posted by Catgirl (Member # 31149) on :
TF, I know you're cured, but thank you so much for coming back to help all of us (you're such a kind soul). Even if some of us can't afford a top notch doc, you still provide great advice that we all can use (love your posts). You rock, girlfriend!
Posted by faithful777 (Member # 22872) on :
I find it odd that two of the "top notch" doctors said that using Nasonex is perfectly fine.
Posted by TF (Member # 14183) on :
I agree with you.

I have heard many regular doctors tell patients that these sprays are fine to use the rest of their lives. I am really surprised to hear doctors say this and also say that THEY themselves are using these sprays daily.

I got rid of lyme 7 years ago, and when I used Nasonex daily for 3 months last year as per my primary care doc, I began catching every illness that came down the pike. I didn't know it was a steroid at the time.

I concluded that it weakened my immune system. I read the websites on both of the steroid sprays (Flonase and Nasonex) and it clearly said it does this.

So, I don't think it is fine for anybody with a compromised immune system (every lyme and babs patient) to use it regularly.

My reading of Burrascano is that he says not to use steroids in any form unless absolutely necessary and you are already on high-dose antibiotics.

I think that it would be foolish to say that steroid nasal sprays are NOT included in Burrascano's warning regarding steroids.
Posted by trubeee (Member # 34030) on :
I agree with nefferdun 100%. When I did see a 'top-notch' doctor it was no different than what others were offering. In fact when I couldn't tolerate the 'normal' doses (my symptoms would go beserk to the point of going to the ER) they were initially great then lost interest in me.

"They don't leave a stone unturned". Not true at all. I asked for many tests I had heard about here and not once did they give any importance to them. Don't believe in anti-virals, parasite treatment, etc. and push their own ridiculous supplements and I was absolutely no better, only poorer.

They may be good for those with insurance and a very large pocketbook and the more 'recently' affected, ie: not severely ill for very long. I realize like any other doctors they're always watching their back. But their dedication to those who CAN tolerate meds and make headway quickly is amazing.

I know of many, many people who have been helped by them. just not me.
Posted by Keebler (Member # 12673) on :
Trubee, as for the laundry statement, I hope you told the MD in the office of the PA's error.

Not all who say that are LLMDs are actually top notch.

faithful777, you are correct: it is NOT okay to use any steroid nasal sprays. It's "Lyme 101" to know that - and exceptions.

The first step to finding a top notch doctor (but there are steps after that, too):

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
Posted by Keebler (Member # 12673) on :
A few posts above discuss steroids. So many of us came too late to the "rule" that they are not to be used for lyme & co.

Here are the articles that explain why (and what is needed for the rare exception to that "rule"):

Topic: what do STEROIDS actually do to us?
Posted by aperture (Member # 34822) on :
Hindsight is absolutely 20/20, TF.

On 2/23/12 (when I posted my original comment on this thread) I thought I was being treated by a great LLMD. He/she was knowledgeable, well-intentioned and thorough. He/she was "trained by the best". I thought, since I cannot afford to go to NY or WA, at least I am getting the same care that those patients would receive....wrong.

It hurts to have to give such an honest review of the regular LLMD's out there...but I feel that I have to.

Lyme took everything from me, my health, my ability to work, my husband's health and tried to take my baby's health. I was and am broke beyond belief.

My family has been seeing an LLMD since Nov. My husband and son were making great progress, but I kept getting sicker and sicker. My husband and I were on the same exact protocol, even though our bodies/symptoms/genes are very different.

My LLMD finally thought I had a biotoxin illness so he/she started Cholestyramine while waiting on Dr S' DVD's to arrive. I had a horrific reaction after 5 days...was stuck in a cytokine storm. At that point I was told by the LLMD "I wonder if Cholestyramine pulls toxins out of the whole body and not just the gastrointestinal tract?"

At that point, I was floored. I realized that I was a guinea pig. The knowledge that I was experiencing my Dr's learning curve was scary.

My husband was so terrified that he called the best of the best and begged for him/her to see me. They scheduled the appt, but where on Earth would we find that kind of $?

My family is broke. My relatives on my side of the family are paycheck to paycheck folks. My husband's family had reached their limit and did not want to even humor the idea of my going to NY for some Lyme Dr.

However, when it came down to life and death, my 80 year old dad who lives in a nursing home emptied his bank account..a whole $400 to help. My 72 year old mom who still has to work FT to make ends meet did the same.

The absolute worst point in my life came when my husband and I pawned our wedding rings on the way to the airport. Nothing else matters if you don't have your health.

We had a one way plane ticket and rode Greyhound for 25 hours back (both of us sick with Lyme, me carrying my bag full of supplements and heavy metal test kit the whole way).

However, it was the best decision I ever made. Of course I am not well...far from it. But I realized that my former LLMD could never have gotten me well. I had too many complicating factors.

I also learned that "being trained by" Dr.* only means they had a 2 week preceptorship...not that they had an internship or trained for months under the guidance of Dr.*

I now only have to worry about following the Dr's orders. I know I am being cared for by the best of the best. If he/she cannot get me well, no one can. I can finally exhale and have some breathing room. I don't have to spend my days researching, wondering whether I'm on the right protocol or not. I just take the medication and supplements that were prescribed and save my little bit of energy for my kids.

I know this entire post is TMI, but I wanted to let everyone know that Lyme is not a disease where only the rich can have a shot at a cure.

TF was spot on with this thread. I only wish I hadn't been so quick to dismiss it.

(BTW, all of this just happened 3 weeks ago, and now my former LLMD now posts on his/her website that he/she treats Biotoxin illness...that worries me)

[ 04-04-2012, 10:39 AM: Message edited by: aperture ]
Posted by Kudzuslipper (Member # 31915) on :
This is so great!!! thanks for the info TF.
Posted by poppy (Member # 5355) on :
Although there is a tier of lyme docs, and some are more experienced than others, it worries me that this kind of thread makes people think if they just get the right doctor, they will be cured. Chronic lyme exists, in spite of the best doctoring available.

One doctor explained to me that he could treat early and middle difficulty patients, but that third tier docs did the worst, longest running, complicated cases.

And it would help if people remembered these doctors are just mortals, like the rest of us. They get tired, burnt out, find some patients more likable than others, etc, etc.
Posted by faithful777 (Member # 22872) on :
Funny, Dr. J said topical steroids are okay.
Posted by canefan17 (Member # 22149) on :
I like the ones who follow a Burrascano type approach.

Combo abxs, long-term if necessary, useful supplements, anaerobic exercise, etc.
Posted by annxyzz (Member # 20404) on :
I have read too many articles by LLMDs about high relapse rates for patients who are not DXed early to think that spending your last dollar is a good idea . Most of them concur that the relapse rate is extremely high and there is no cure in sight.

The people I know with lyme who have seen LLMds have not improved significantly after spending a lot of money . I am not being negative - just stating fact .
I do not think years of drugs and drugs will cure me personally . I did 3 years of ABX and became free of nerve and muscle pain , but was still very ill. I could not see risking superinfection , ABX resistance , or kidney and liver issues with taking drugs forever and then relapsing after stopping the drugs .
It is hard to face the fact that there is no cure for many of us with longterm lyme even with the "best " LLMD who will gladly take our money knowing he can not make a huge difference .

I am forced to self treat because of lack of insurance, but the truth is I am probably no worse off than if I had a LLMD . In my opinion ,
there are MANY MANY potent plant medicines that are less likely to destroy my kidneys or liver and that help keep the pathogen load down . I have read a zillion posts here over 8 years about people taking mepron and a host of other drugs for years and never improve , or who improve only to relapse .

Everything with this disease (!) is experimental , and it is a save yourself condition. The top rated docs can help those diagnosed early , but they all admit that the long term patients all relapse when drugs are removed . Does not make me want to fry my liver on expensive drugs with no tangible results except poverty .
Posted by TF (Member # 14183) on :
I went undiagnosed for at least 10 years before a doctor figured out that I had lyme disease.

Still, I recovered. And, I know others who had the fibro diagnosis for over 30 years and it was lyme. I know at least 2 like this and they got rid of lyme.

We are all different. So, don't assume there is no hope for you just because you have had lyme for years.
Posted by baileypup (Member # 22824) on :
aperture, that is a great testament to the best-of-the-best LLMD's, and there are only a handful, if that.

I see a doctor who follows Burrascano guidelines as well as the best LLMD in the country today Dr. H., who I assume is your doctor. I am 80-90% well, but my case was not complicated and treatment, aside from antibiotics, was through learning from these doctors, sites like lymenet and energy and electrodermal testing.

This illness has become so complicated that unless a doctor is on the leading edge or uses energy testing to determine what to treat and what your body needs, then it's just trial and error, and you are the guinea pig.

[ 06-21-2012, 01:15 PM: Message edited by: baileypup ]
Posted by seekhelp (Member # 15067) on :
annxyzz, your post sure makes sense.
Posted by Haley (Member # 22008) on :
I think that one of the key points made by TF is that a good doc will not leave one stone unturned. That is a good doc in any field.

I have been treating for 3 years. I am not with a top LLMD but I have seen some of the best over the years. I agree with annyxx, that it is mostly experimental, but as we experiment we do find new answers such as parasites which was not considered a big factor in the past and seems to be much more important now.

I personally have come to the conclusion that this is almost like treating and entirely different disease for each person. That's why I like the term MCIDS (hope I got that right). Each tick carries a plethora of pathogens and we really don't know what they are or how they interact with each other. we can identify some of them and treat those and hope that will be enough but it often is not enough.
Posted by Keebler (Member # 12673) on :
Some LLMDs will work along with a LL ND (naturopathic doctor) in various ways. How to find the best in that area, too:

When considering herbal / nutritional / adjunct methods . . .

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: )

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.


How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc.

Be aware that integrative doctors can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first. Some have learned on their own from experts in the field. There are many ways to acquire knowledge and most are eager to share basic details about their training. You want someone with a deep knowledge.

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.


BODY WORK links with safety tailored to lyme patients, etc.
Posted by Robin123 (Member # 9197) on :
I think top docs know a lot. They know what to check for. They do bloodtesting to see what our blood chemistry is like, and then often treat accordingly.

They listen very well and pick up clues from our history and our responses to anything. They know alot about products. They can tell whether we can handle a lot of treatment or not. They discover whether we can detox easily or not.

And they care. And it's great when they have good staff who returns calls promptly!

Put all that together and it's a good experience! If they take insurance, that's a plus, but many don't because they don't get paid by insurance.
Posted by Anthropologista (Member # 35483) on :
TF, I wish I'd read your post a LONG time ago! We're leaving my husband's LLMD and changing to Dr H for all the reasons you describe.

His former LLMD is a well-intentioned doctor who helps a lot of people with earlier, more straightforward cases of Lyme & co. But my husband (R), with late-stage neurological Lyme, kept deteriorating.

His LLMD seemed out of her depth. She told him that her other patients were getting better, but that he was getting worse. And she started backing away from his Lyme diagnosis--despite his +ve PCR. She suggested he go back to a regular neurologist to get tested for other diseases. Again! We'd already been through all that before he was diagnosed with Lyme.

He asked her, "Do you think I could have dementia?" His greatest fear. She replied, "Yes, that's what I'm concerned about."

So we trailed back to Mass General and the big shot neurologist we'd seen before. The one surrounded by adoring medical students who smirked dismissively when R mentioned Lyme disease. All the tests came back negative. Again. Big shot neurologist told R that he probably had depression. "I should be depressed," he replied, "but I'm not."

R was too debilitated to get up from the couch. He started hallucinating. He felt his LLMD had given up on him. He wanted to give up too. 2 years of oral antibiotics had been torture, and he'd only got worse. He told friends that it looked as if he had dementia.

What saved us was an excerpt from Pamela Weintraub's Cure Unknown in Psychology Today, on the web. Then I started reading other articles on the web by the specialists in neuropsychiatric Lyme she wrote about.

ALL of R's symptoms--the ones that had freaked out his LLMD and led her to suggest it wasn't Lyme--were in these articles as common neuropsychiatric symptoms of Lyme & co. Every one. How come she hadn't known this, I wondered?

When I quoted the article to R's LLMD, she suggested we go to NJ to see the specialist (Dr. B) for a 2nd opinion. She cared--but she just wasn't very widely read. So in NJ, after a 2-hr exam that turned into 3 hrs, Dr. B told R that he did indeed have late-stage tick-borne infections.

...And that he had neither dementia nor psychosis. His Lyme and co had caused (wait for it) a sleep disorder! That was the cause of his hallucinations. He was going into REM sleep while awake because he didn't get enough while asleep. I've never felt so grateful to a doctor!

R says this was the 1st time in 6 years that a doctor made him feel better. With better sleep, all his neuropsychiatric symptoms have gone.

If a reasonably common complication of Lyme & co like a sleep disorder could throw R's former LLMD so badly, we have to find someone with a grasp of the "unified field theory" of Lyme, CO, and everything else that piles in there and synergizes with the infections. That seems to be Dr H. There should be more Dr Hs and Dr Bs.

And I'm angry that Lyme is "the disease for the wealthy." Aperture, what you and your husband and your parents had to go through to get you proper treatment is so wrong I don't have the words for it. Sending healing vibes your way.

Sorry for the long post. And thank you, everyone, for this thread and this site.
Posted by marypart (Member # 27012) on :
We were lucky to have an excellent doctor for my son, a LLMD rheumatologist who never gives up until she finds the reason for being sick. Being an integrative medicine doctor really helps, meaning like Dr. H in NY using prescription meds, alternative treatments, herbals and other supplements. Considering mold and toxins, all that stuff.

That said, I am THANKFUL to ANY DOCTOR who is willing to put his or her career in jeopardy to treat Lyme and/or Chronic Lyme.
Posted by lax mom (Member # 38743) on :
Posted by Abxnomore (Member # 18936) on :
Too bad there's only about three of them in the whole country, all unaffordable for most. And even with the best their success rate is still not that high.
Posted by lax mom (Member # 38743) on :
My husband is living proof.

He would be dead without his LLMD but he's out working a double shift cooking on his feet all day today.

I am grateful.
Posted by Ellen101 (Member # 35432) on :
I don't know I'm not 100% sold on a lot of these LLMD' manyhave seen those that are considered top notch and are still not well, or there are those that are convinced they are we'll because they saw the best, well who know maybe they would have gotten well anyway.

I for one was horrified when I saw the long list of supplements Dr H claims you need to take to get well. There is no way someone could possibly take that large of an amount and not have issues. It would be impossible to tell what was reacting with me this is a large money maker for someone...
Posted by Abxnomore (Member # 18936) on :
It is possible to take all of the supplements Dr. H suggests. I did it years ago and continue to take many supplements till this day.

The real question is who are the LLMD's who are getting people back to functioning? We all know they are few and far between after all these years.

Too many who call themselves LLMD's are not using protocols that get results and even the very best ones still don't get a high percentage of people back on their feet.
Posted by surprise (Member # 34987) on :
If you've ever done a search in the past on this board, there are hundreds if not thousands of people who are no longer here,

and how many more never came to Lymenet?

You get improvements, you get better, you go on with your life.
Sometimes it's hard to stay and relive the trauma you went through, too,

so you don't stay on the Internet.
I think many take their improved health and move on.
Posted by Abxnomore (Member # 18936) on :
I didn't say no one moved on. I've been well since 2003, since using an experimental treatment.

What I said is that there are few LLMD's that are getting high percentages of people back on their feet and even fewer LLMD's that are using the most current and effective protocols.

Yes, many have moved on but also many have been on this site for years. I've been part of the Lyme community since 1998. I would have liked to see easier access to treatment and better treatment by now.

But certainly, I understand all that stands in the way.

[ 02-18-2014, 06:57 PM: Message edited by: Abxnomore ]
Posted by desertwind (Member # 25256) on :
I consider myself to be in partial remission. When I hit a year abx. free/symptom free I may claim full remission. I am back to work and back to exercise and doing the things I love. My body may always be weakened by what it has gone through but I am back to feeling like me again. Very sick for 10 years.

I do not come on here as much as I use to because I am busy with life but I still feel a part of the lyme community and want to continue checking in every now and then. It does feel like a sense of family...

I had seem 4 LLMD's before seeing Dr. H. I saw him at my worst about a year after brain surgery and 4 months of Dexamethasone steroids. Did he alone bring me back to life? Well pretty much yes.

Without his aggressive protocol I would not be back to my life again. BUT,I also modified the protocol to better fit my individual constitution. I feel that I am able to communicate well with him in terms of what I can and cannot do, what my body can and cannot do.

I like that he listens closely to my bodies response and my interpretation of my bodily cues.

I like that he tested me for things no other LLMD ever did (Q-Fever) and considers the load of environmental toxins that I have and continue to be exposed to. It is not ALL about TBI's with him and he considers much more when looking at your symptoms.

I like that he never got discouraged if I did not show improvement or never minimized my symptoms to something psychological (I'm a psychologist so good luck doing that!) or never gave up trying yet a different protocol.

Always addressing yeast and parasites. Advocated for me to get back to running once we felt my body could handle it - and that was one of my big turning points. I feel he was/is able to understand what my body needs to heal even if it is not part of some famous guideline that says no cardio.

This goes for both Dr. H. and his NP.
Posted by Abxnomore (Member # 18936) on :
Certainly, Dr. H is one of the LLMD's that are included in that handful that uses a good protocol and has a good percentage of getting results.

I'm happy to hear that you had a good experience and are doing so much better. It's also great when others share information like this.
Posted by surprise (Member # 34987) on :
I am also doing better, sustained improvements
(knock knock knock)

and have been off LLMD antibiotics for over a year
(did try some again this last summer for UTI, stomach issues,
for a little bit)

and off Lyme treatment herbs, working on trying to get my gut in shape now. I treated parasites last year for a long time, too.
(and before last year)

My memory is much better/ improved, I exercise daily, rarely a debilitating headache anymore, more peaceful.
Some days are better than others, yes,
and I've got work left to do on my gut health.

I worked with 2 LLMD's, the 2nd one we did more of a
Burrascano type approach.
Posted by beaches (Member # 38251) on :
desertwind, I am happy for you. Without going into detail, our experience with this doctor was the polar opposite of yours. I am glad we moved on.
Posted by coffee71 (Member # 17467) on :
I just want to say THANK YOU TF.

Back in September 2008 I contacted you with the same question and you were so kind and patient to answer all my questions about finding the best LLMD.
Without your advice my road to recovery would be much different.

Within first eight months of getting severely ill I saw 5 different LLMDs in my area.

Honestly speaking, all of them were good doctors, very knowledgeable, and ready to treat me, but I was slipping backwards in my neurological symptoms so fast that I knew I needed the most aggressive treatment I could possibly get at that point. These doctors were not offering it.

In april 2009 I found 6th LLMD and I stayed with this MD until this day. The reason why-He was the first LLMD how recognize how seriously sick I was. During first appointment my instincts were telling me that he was a doctor who would not give up on me.

And I am glad I listened to my inner voice.

TF, once again thank You for your help in 2008 and God bless.
Posted by desertwind (Member # 25256) on :
beaches; Sorry to hear your experience was much different then mine. Someone's "best" llmd could be the next persons "worse". While he did help me I can certainly see how his approach may not work for everyone. Best DW
Posted by map1131 (Member # 2022) on :
Wow old thread....I wish I could turn back time. I would have made an appt. with the best in US from the onset.

Money to fly and for hotel room etc would have been worth every dime, if a LLMD could have turned my illness around.

But I can't turn back time. I do know that the journey does serve a purpose in my life. What I thought was going to be my life, wasn't close to the journey that I've endured.

But I've truly been blessed along the way. I've had many angels from day 10. I've had 15 years of great healers and people, the rest of my angels that have become part of my journey.

So I'm just thankful for blessings.

Posted by skies (Member # 28064) on :
I'm with beaches, unfortunately. Polar opposite experience is all I'll say as well, I don't want to get in trouble for saying too much, but it was a horrible experience. Very disappointing. The "best" isn't the best for everyone. We're all so different.
Posted by map1131 (Member # 2022) on :
That we are. For sure! It is not understood exactly why.

A very smart LLMD told me 10 yrs ago... until they get to the very cellular level of what truly happens with these bacteria(s), will they even begin to find the cure for all.

Not just 75-90% that the numbers say are "cured" or go into remission.

Posted by Pony (Member # 32559) on :
Add me to the list beaches and skies are on...

Sooooo overrated and disappointing
Posted by beaches (Member # 38251) on :
A top-notch doctor treats his/her patients with respect and dignity. A top-notch doctor does not yell at his patients. A top-notch doctor does not have a very ill person take 60 pills a day--all at max doses.
Posted by Abxnomore (Member # 18936) on :
It's way more than that. He has to understand the illness on every level, leave no stone unturned and use aggressive protocols that attack all forms of the spirochete. Every issue must be addressed, not just the spirochete and he has to be current and willing to work outside the box. Supplements and herb play a big role for many in recovery.

It's about bringing the entire body back to homeostasis.

Most LLMD's are not doing the above.
Posted by randibear (Member # 11290) on :
Beaches, so true so true. A good llmd does not yell at his patients, does not say cruel things, etc.

They're kind, courteous and above all understanding.

Ive been to some real lemons and several times ive left offices completely in tears.

Good ones are hard to come by.

One dr told me as I was leaving, in front of other patients no less, "well I never thought you were sick in the first place". How unprofessional and downright rude....
Posted by Keebler (Member # 12673) on :
A Top Notch LLMD or LL ND would also be familiar with all presenters and topics on the "radar" currently -- and continue to be active in educational opportunities.


Lyme & Tick-Borne Disease Conferences

Thanks to Tincup who just posted this in another thread. Some excellent presentations for our continuing education. Most are ILADS "minded" as is to the benefit of those seeking truth.

Re: the link for "Infectious Disease and CME Conferences" -- an important list but not limited to ILADS educated professionals -- and not limited to lyme or TBD, still relevant topics.

A top notch LLMD or LL ND would know who is truly lyme educated and who is not. They would know what pieces of wisdom might be able to be extracted from anyone in any connected topic, though, and also what pieces are to be challenged or may not apply to those with lyme / TBD.
Posted by beaches (Member # 38251) on :
Keebler, I can guarantee you there's at least one "top-notch" famous LLMD who has authored a book and has done exactly what I stated above.

My kids are now seeing a great doctor who has gotten them to a much higher level of functioning (attending school, driving, going out, doing errands and light chores and even exercising sometimes) than any of the other 4, yes 4! LLMDs they've collectively been to. They still have a long way to go, but seeing progress has been wonderful after seeing them suffer so much for so long.

The difference with this guy is that he truly listens, he thinks outside the box, he has an actual dialogue with me, he asks my children excellent questions and he keeps up with current research. He is very respectful.

He understands that eventhough I am not a medical professional, I do my homework and have acquired a vast amount of knowledge over the years. This is quite a big difference from a famous LLMD who admonished me by saying "be quiet mother." Yeah, you don't get to say that to me, a mother of sick kids who is coating your pockets with plenty of money.

Any time I have asked this doc a question, he is aware of what I am referring to (for instance when I mentioned parasites, he mentioned Dr. K.'s protocol and offered his opinion) As a bonus, he has a lovely staff. Not once have I gotten an attitude from any of them, which is quite refreshing, having dealt with "difficult" staff in other offices.

Randi, sorry to hear you've encountered a few lemons yourself. There is just no reason for rude, unprofessional behavior.
Posted by skies (Member # 28064) on :
Beaches, I hear you loud and clear.. My experience is very similar! Glad you've moved on to someone more respectful that is also helping you and your family. There's no excuse for such arrogant behavior. I don't care who you are and if you're the "best" of the best. Show some respect and compassion for sick patients that are lining your pockets, very thickly, I might add.
Posted by beaches (Member # 38251) on :
Yes skies! We are on the same page for sure. Thanks and I hope you are on a good path with someone else.
Posted by Abxnomore (Member # 18936) on :
Personal experiences and discussions such as this provide much more usable information for members. We need real conversation and discussion taking place here.
Posted by Keebler (Member # 12673) on :

I'm not sure why my recent posts (book & conference links) seem to conflict with anything you said above. They don't.

I'm simply saying that a top notch LL doctor keeps up with education and has a broad range of vision with the ability to zero on on ALL points that matter.

That tendency / those attributes would not be the only criteria, of course. It's just one consideration of many. The best base of knowledge possible.

I think you are saying that there may be one who others think is top notch, even authored a book but is not really a good doctor (at least to all at all times). That's too bad. And that can happen. Sadly.

So, there are many points to consider as one does research from all points before selecting a doctor and also knows when to turn the ship around and find another one.

Still, when we must turn away for whatever reasons, it's important to grasp what knowledge or insight we might that is helpful in our journey

(whether from conversation, articles or a book -- but also know they likely got detail from others so look to the primary sources, too) . . .

and leave the rest behind as we seek out someone better suited to the vital task ahead in all matters and in a manner fitting someone who really can be called "top notch" for all the right reasons.
Posted by beaches (Member # 38251) on :
Keebler, I just tried to PM you but I am on your "ignore list"

Anyway, I understand and appreciate what you are saying. I think you're missing my point to an extent, but that's OK.

Like I've said, my kids are on LLMD #5. I will soon see LLMD #4 (after not seeing anyone for a few years). I think I know what to look for and expect in a doctor.

The most important thing of all though is that a patient makes progress in his/her health.
Posted by Keebler (Member # 12673) on :
Sorry, my PM function is off. But still, some have said they get the "on ignore list" reply.

I think you are saying that just because someone writes a book that does not make them top-notch? If so, true. And / or that even the most brilliant and well educated doctor may not actually be top notch. That can be true, too.

It is sad that even once we all figure out we need someone is is an expert in subspecialty with so few experts, that it still takes a while to find not just a top notch doctor but one who is well suited for the unique challenges of each person.

And disappointments in character, even in staff, can sure hit harder when our hopes and their reputation falter.

Posted by beaches (Member # 38251) on :
Actually, I forgot to include the LLND. So that brings the total docs my kids have seen to 6 and mine to 5!

I promised them when they first got sick that I would get them better if it was the last thing I did and I told myself I would go to the ends of the earth to achieve that goal.

The biggest lesson I've learned is to give a doctor a fair amount of time and give different protocols a chance. My mistake was staying with a couple of them for way too long.
Posted by Keebler (Member # 12673) on :
Yeah, a lesson I always learn too late . . . when to move on, realize when they don't know all they think they do or all that I need them to know.

I stayed with an otherwise good ND (with an otherwise great reputation) for 5 years because no other choice at that time but also he told me he knew all about lyme.

Turns out he only thought he did and then blamed me for wanting to be ill on some deep level when it turned out he knew nearly nothing about lyme, had not really even addressed it. Just thought basic herbs should do the trick.

At least now, ILADS has an education program that did not exist then. At that time, Google had not even started yet so we did not have the web to search.

"Ya gotta know when to hold 'em, know when to fold 'em . . . "

"The Gambler" (written by Don Schlitz).
Posted by beaches (Member # 38251) on :
LOL Keebler, good to know I'm not on your ignore list.

And yes, just because a doctor is a famous author and held in high esteem by some as the "expert", doesn't necessarily make him a great doc.

It's unfortunate there are so few docs out there for us. I could tolerate an unpleasant, rude staff if the doctor was excellent and getting my kids better (and how sad that I'd be willing to tolerate that at all!) However, I will never again tolerate a rude, arrogant doctor whose pockets I am lining with very hard-earned money.
Posted by randibear (Member # 11290) on :
Know when to walk away and know when to run....

Yeah ive run fro some toooo
Posted by Lymetoo (Member # 743) on :
Keebler .. you might want to open your PM's and send one to beaches or skies .. or to me.
Posted by beaches (Member # 38251) on :
Keebler, so sorry to hear about your experience with that LLND. How awful for him to blame you for your own illness.

I think some do that to hide their own inadequacies from themselves....they don't know, so it's easier to just blame the patient.

I think it's great that ILADS has that program. We've actually met a couple of the docs who were doing preceptorships. I hope they can continue this program.

And goodness yes, what would we do without google? It gives us all a great opportunity to do research for ourselves.

"Ya gotta know when to hold 'em, know when to fold 'em . . . " So true!
Posted by Keebler (Member # 12673) on :
He was not an LL ND after all, just a regular ND who vastly overstated his ability. And that is why I try so hard to help others avoid the same situation . . . and to share the best from the naturopathic world as it specifically can apply (and where it can't) to those with TBD.

Yes, indeed, so glad to have ILADS, the web and LymeNet . . . and all who help make this a strong component in our education since it's been dropped right into our laps to figure out so much on our own.

I have learned so much here from others so willing to share their experiences and links to articles, books, lectures, etc.
Posted by Lymetoo (Member # 743) on :
And keep in mind that we DO HAVE good LLMD's who are NOT members of ILADS.

Some prefer to fly under the radar.
Posted by beaches (Member # 38251) on :
This is true LT.
Posted by nefferdun (Member # 20157) on :
Here i am having just seen my 4th LLMD/ND yesterday. I am cautiously optimistic. However I do not believe she/he has all the answers. I believe I need to find the answers. It would be wonderful to be proven wrong.

This one agreed with my diagnosis and treatment, just like 3 of the last ones did. After spending 7K to confirm my diagnosis, I am taking the same drug I ordered from India two weeks ago. In addition I am taking a huge amount of supplements. I thought I had the right supplements. Maybe I was missing something. It depends on which expert you are talking to.

For instance, the published LLMD, Dr. S, says boluoke does not work on biofilm because bioriflm is not a protein. The expert Dr. K says Cistus is the most powerful biofilm buster. I was on boluoke for two years until Sept 2013 when my blood showed "substantial biofilm". I am on it again but this time taking more of it more often. At $154 a bottle, I will give it a month. I am going to follow this exactly as directed and see what happens.

I will also take MY protocol, which is cistus, liposomal EDTA, Lipo vitamin C and glutathione, proactol and methyl cycle supplements. Why in the world are doctors still handing out tinctures and pills when everything can be made 1000 times more effective with liposomal technology?

This LLNP gave me N Acetyl Cysteine, which I am not supposed to be taking - being homozygous for CBS. I found it in the bag and shelved it for the time being. I was also given melatonin, which quit working for me years ago and gives me headaches but maybe this time will be different. And I was given L theanine, which I tried before and it made me nervous. Maybe this time, it won't.

As far as these doctor discovering anything - I knew when I had bartonella and suggested my own treatment. Same thing with babesia. When things did not work, I went to the GP and told him what I needed. I got better. I got worse. I told the GP to test me for PR and I was positive. I took horse wormer, started the diet and got better. I can't see GP any more as he is now a marijuana doctor. I ordered my own methyl cycle mutations test and had it analyzed. I requested heavy metals and environmental testing.

Dr. H by the way has very little to say about protomyxzoa. If PR is real, that is a very big stone he is not willing to turn over. Even if he wanted to address it, he can't because the state he lives in will not allow testing at that lab.

I would like to believe Dr. F is full of it because I don't particularly like him, having traveled thousands of miles to see what I thought was the best, only to be told he would/could not treat me. Even though I would like to believe PR is ridiculous, I have to say it is real. If your Best LLMD is not addressing it, having you tested and putting you on the diet, you won't get well.

I believe that WE are the ones getting each other well, more so than any doctor. I found out what and how much to take from kind people trying to help me on this site. i learned about everything here. I shared everything I know with you. We are the cutting edge of lyme research. We pick the brains of all the best doctors and share the information. We decide what works and what doesn't.

It would be heavenly to find "the guru of lyme", the one I can completely trust to get me well. I have struggled and worked so long and so hard, trying to keep on top of things with half a brain.

I am still trying to be optimistic.
Posted by beaches (Member # 38251) on :
nefferdun, that was an excellent post!
Posted by Keebler (Member # 12673) on :
Still, a top notch LLMD would know the science of lyme, the detail that the ILADS researchers / presenters are talking about., even if not a member.

It's hard to say exactly what is meant by "ILADS educated" but I will try. Going through the ILADS physician training program is great, of course. But there is more to it.

Being ILADS "educated" is not an exact check list but that they have that scope -- they may not need to be a member or up front at meetings -- just backed up with the basics and up to date with as much knowledge as possible.

The education level is so very important. It can't have stopped when they graduated from medical college (as they barely get any lyme education there).

That knowledge about lyme / TBD can't be built on the CDC or IDSA or NIH, either.

It's also about knowing that every person with lyme is unique and they likely have far more going on than just lyme, far more. But no two are alike yet so much can be learned from all of their patients, and the group as a whole for what they face, etc.

just my take on it. I've never had access to a LL doctor for more than two visits, though from what I've read, ILADS conference presentations veiwed and what I need in a doctor (if I could afford one) . . . just my thoughts.

Respect for each patient and really being willing to "go there" with them, whatever it takes, how ever many changes or how much thought for what ELSE might work . . . through all this, should also be at the top. Can't have a good doctor without that.
Posted by beaches (Member # 38251) on :
Well hopefully no doctor's education stopped once he/she graduated medical school.

I believe the vast majority of LLMDs (ILADS or not) have learned a great deal from their patients (at least the ones whose ears aren't plugged up with their own arrogance).

We are a unique bunch of patients. What other group of patients do you know who have had to take matters into their own hands and demand better testing, appropriate treatment, insurance coverage and legislation? It sure ain't the cancer patients.
Posted by beaches (Member # 38251) on :
Actually, come to think of it, AIDS patients had to do what we're doing now.
Posted by LisaK (Member # 41384) on :
my new llmd takes no insurance for the testing which was about $100. Treatments are around $80 every 18 weeks. That is it.

I rate my new guy a 9.9 compared to the previous one that wanted to put me on steroids, hormones, and everything else under the sun- and I felt terrible when I was with him

Plus he (old guy) listened to me, but HE was the Dr so HE knew best of course and wouldn't really budge from his protocol.

The new guy is insistant too, but the results are in the pudding. .... I am gettting better WAY faster with new dr than the other who was a more traditional LLMD type following what most of them follow.
Posted by Lymetoo (Member # 743) on :
I agree that the good LLMD's should keep up with conferences and education. You can attend conferences without being a member!!!

A "good" LLMD is just that .. someone who learns from his/her patients and other doctors and is very educated on treating Lyme and coinfections.
Posted by nefferdun (Member # 20157) on :
Thanks beaches.

There is no argument about the benefits of seeing an ILADS educated doctor versus mainstream but Lyme treatment is not standard even among LLMDs. They have different opinions and different methods.

That is why it is important for us to keep up with the latest information. For instance, many of us have spent hundreds of dollars on methyl cycle mutation testing and analysis. This stuff is hard to understand.

When you hand your new LLMD your methylation results, he probably does not even look at it because it is too difficult for even him to grasp. He just hands you his recipe supplements for success without any regard for what your body needs or can tolerate.

I need a test and I need drugs so I am not going to argue. I just shelf the stuff I know I can't tolerate and continue to take what I know I can.

Most of us have a library of books on Lyme Disease. I sure do.
Even these doctors that are supposed to be the best bash each other's theories and treatments.

Have you read Dr. S' book on bartonella? No one but him knows how to treat bart. It is a secret he does not share. You must go to see him. If you want you can pay $500 for a conference call but he won't tell you the secret because he can't advise you about drugs on the telephone. From what I have gathered from other's who paid for that call, HH2 in massive doses will help but the cure is sill his treasure and you need to see him personally for that.

Sure you should see the best LLMD you can afford but should you send yourself and your family into a financial crisis seeking that doctor when chances are it won't be the first one you visit? Sometimes you have to read and study and then trust your own intellect and gut to make the right decision for yourself.

Is there really a LLMD guru that leads all the others in the field, that cares mores, is better educated and up to date on every single aspect of all the latest technology and treatment? If there is, you and I won't be able to see him because when the word gets out there will be hundreds of thousands of people in line waiting to see him.
Posted by lax mom (Member # 38743) on :
Originally posted by Abxnomore:
Too bad there's only about three of them in the whole country, all unaffordable for most. And even with the best their success rate is still not that high.

Case in point. A counterpoint did not hinder the flow of the thread Abxnomore. It just added to the conversation.
Posted by GretaM (Member # 40917) on :
A good LL is tenacious. Open minded. Good humoured. Eager to learn from others in the lyme community-doctors, nutritionists, patients etc.

Is willing to push the boundaries if necessary, and always always observes and listens to the patient.

I thank god every day for my LL.
Posted by nomoremuscles (Member # 9560) on :
A money-back guarantee!
Posted by lax mom (Member # 38743) on :
Well, if you scroll back to the first page, you will read the story of "aperture".

That is me.

The top notch Dr H saved my husband's life. An LLMD brought my little son back from autism traits to typically developing.

My family has truly lost EVERYTHING to treat with the best. I wouldn't change that for anything. I am so grateful knowing that I do not have to rely on nameless, faceless strangers to give me a protocol that could harm me...or heal me...who knows?

That's why I am so adament about being treated by a the best Dr you can scrape together...not taking advice from a stranger.

I may not have a full set of kitchen chairs, more than 1 outfit, but my husband is healed and my son is well.

Lyme is supposedly the disease for the rich...don't allow it to be...I didn't...even if that meant pawning my wedding rings to get to the best.

I am in the midst of being banned for those who have supported me...Hugs.
Posted by seibertneurolyme (Member # 6416) on :
Had not read this thread for quite awhile.

Lots of divergent viewpoints. But there are quite a few things no one has brought up.

If I counted correctly hubby saw 11 different docs who would be called LLMD's during his 12 year illness. 3 of those were LLMD neurologists and he also saw the Dr B for awhile. And I am not counting all the alternative and ACAM docs he saw.

Anyway -- one major point that is very important to someone considering traveling to see an LLMD -- there are many restrictions placed on docs who see out of state patients.

Some docs will not prescribe meds over the phone -- every new med requires an in person office visit. That can become cost prohibitive if the patient has adverse reactions or intolerable side effects and needs to change meds in between appointments.

Also many of the big name docs have P.A.'s -- while they have training most do NOT have anywhere near the knowledge of the actual doc. And if you only see the big name doc every 3rd appointment or so treatment can get seriously off track.

And almost every doc hubby saw had a list of meds they were unwilling to prescribe due to potential side effects. Hubby had some of the best results with the more problematic meds -- quinine and clindamycin and levaquin and flagyl for example. Unless you know enough to ask -- the doc may not be willing to use all possible meds to try to treat your specific infections.

Someone did mention that Dr H because he is in New York cannot order tests from Fry Lab. But it goes beyond that -- he cannot order tests from Galaxy Lab either. No New York doc can.

Yes there are some labs that are better than others, but without Clongen and Fry bloodslides hubby would have never known he had such a severe babesia infection. And it was 10 years before anyone thought to test for babesia duncani (WA-1).

In my book a good doc will order a test from an unknown lab if the patient requests it and is willing to pay for it as most such tests frequently require payment up front even though eventually insurance may provide partial reimbursement. Tests from new and different labs provide learning opportunities for the doc as well as the patient.

The doc that hubby had the best relationship with both personally and medically was not one of the big name ones. The difference in the doc was that they did not watch the clock. They listened to the patient and were willing to try just about any med.

This doc was the first one who was willing to try malarone in 10 years since we never knew for certain if hubby's previous reaction to mepron was an actual drug allergy.

Not many docs give patients their personal cell phone number or will call hospitalized tickborne persons who are not even their patients. And not many docs will accept payment plans or barter with patients for their fees -- this doc has accepted artwork and even vegetables from patients in the past.

There are still some real compassionate docs who are in it for the patients. This doc probably does not have a super high success rate simply because many of their patients cannot afford the necessary meds or supplements to actually get them well. But the doc has not abandoned them or given up trying.

Bea Seibert

[ 02-27-2014, 11:05 PM: Message edited by: seibertneurolyme ]
Posted by desertwind (Member # 25256) on :
I also believe that a top notch llmd is willing to look outside of the Lyme box and consider additional conditions that could account for symptoms. My extreme pressure headaches were not all related to Lyme and babs. My llmd knew enough to order an MRI to rule out differential diagnosis. Glad he did because we found a rare and serious brain condition that required numerous surgeries.

A top notch is also open and willing to speak with with other treating doctors so everyone is on the same page. No hiding lyme needed. My current brain surgeon and llmd work together to ensure best treatment.

I appreciate my llmd's assertive presence and see that as reflective of his willingness to speak loud and have a voice in the muffled world of lyme
disease. He has always shown humility and compassion in his own sense of humanness. But...he is not the cure all for everyone.

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