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» LymeNet Flash » Questions and Discussion » General Support » Disappointing Dr. appointment today

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Author Topic: Disappointing Dr. appointment today
fred0
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Hi. Just thought to share my Dr.s appointment yesterday.

I know it's only from my side but I have to go by what I understand said to me.

In general I think this Dr. wanted to help but some things were confusing for me.

First, the app. was short because I went on general practioner hours, not on private Lyme patient hours.

There wasn't enough time to go through everything.

The Dr. wanted to see all my general and recent tests first (from different hospitals) and then I would come to a Lyme app. . (I know hard to understand).

This Dr. is an ILADS Dr..

Anyways, I asked the Dr. what would be the next step in fighting Lyme.

1. I was told, "you have to let go of this Lyme Disease". During further conversation I was starting to understand the Dr. saying something like it was in my head.

I asked if that was true. The Dr. said no, but that Lyme is not the main problem.

Yes, I understand being too focused on the problem of Lyme Disease.

I can understand that that Lyme can become too overblown and we see it in everything, from the slightest headache to when we sneeze.

I try not to be like that. All I know is that something is definitely wrong with me either, physically, psychologically or probably a mixture of both for over 30 years without the slightest help or idea what's going on.

I have been sick for many, many years. I was only diagnosed from a Westernblot last year as positive for borr. antibodies.

I've been in this condition much longer than when I was diagnosed.

Plus, I don't know what to call it, Lyme, mental illness, clinical anxiety, 'all in my head', or some unknown chronic jungle disease.

Whatever it is really, it has already destroyed a large portion of my life. There's been good despite but I can't deny that it's caused some huge hinderances and major loss in my life.

Anyways, the Dr. explained that I probably do have Lyme but that the main problem is the 'environment' of my body.

If my body was stronger and not weighed down with heavy metals (teeth fillings) etc.. that My BODY COULD HEAL ITSELF.

I agree that we need to help our bodies help itself. But....if that's true than why are we, mostly everyone reaching outside help?

The whole problem really started when the Dr. advised me to take a $600 blood test.

The blood test came back and said that I have no active Lyme Disease.

IN contrast I took a test at a Normal lab and it came back Westernblot POSITIVE.

This Dr. said forget about the Westernblot, it tell us nothing...

That's where all the confusion started and I started to lose trust. The Dr. I think also started to become likewise frustrated with me.

The Dr. said that I was a 'hard case'. That feels great when you've been looking for help so long.

Admittedly, after the goofy, ripoff blood test, I wasn't the most compliant patient.

My problem is...I AM HONESTLY SCARED TO TREAT DIRECTLY THE LYME DISEASE or whatever it is. Couple that with not trusting the money making field of Lyme and it's not easy.

It's been much more successful for me to treat symptoms.

When they treat the Lyme though, it SEEMS LIKE IT JUST MAKES THINGS EVEN WORSE.

I'm scared to get worse and again be trapped in a hole of severe anxiety. It is a genuine nightmare. I experienced it for years and I'd not like to ever again.

After I finished abx treatment, things just got worse on other fronts as well.

I got tendonitis in both arms (nightmare as a musician) and in 2 or 3 other places.

I've been an outpatient in the hospital since mid summer and they're still testing.

So, when the Dr. wants to try something and I feel the symptoms worsening, I get scared of falling back into the black hole.

That's how it is.

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Keebler
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If you went on the typical "GP appointment" time restriction, this is not an ILADS educated LLMD. If he is in with any clinic that requires such short appointments, he is not an ILADS educated LLMD. Typical GP appointment time slots are just not going to work, especially for the first appointments. No LLMD can do their job in that time frame.

Intellectual content is of greatest concern, though. So many of the things said by doctor are just not correct. Some assumptions you hold, too, that are not accurate.

Yes, it's very complex. Sadly, it sounds like you still need to find a true ILADS educated, ILADS practicing LLMD. A LL ND might really fit with you, too. Rife might be considered (as you are concerned about full on Rx protocol) but best guided by a LL ND.
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GretaM
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Hi Fred,

I would suggest finding a new doc.

My initial assessment for lyme and a complete neuro exam lasted 2 hours.

Most folks initial exams last that long or longer.

Also, "letting go of lyme" is like telling someone with syphillis to "let go of syphillis". "Treat heavy metals and take some supplements"

Absolute rubbish.

Lyme is a bacterial infection. Period.

The treatment itself needs to kill the bacteria. Period.

I suggest finding an LLMD or LLND that follows Dr. B's guidelines.

That doc saying you are a hard case was his way of telling you he has given up already.

Also, there are plenty of "hard cases" on here, making progress.

If you can't afford an LLMD, then an LLND may be a good option, or investing in a rife machine.

You won't get better if you don't treat.

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fred0
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Hi. This Dr. is really ILADS educated, has attended ILADS conferences, etc...

I would like to give more details as to why I know/believe this but it would give too much away.

This Dr. also uses some of the alternative methods associated with Rife or Bionic, and others.

Part of the reason I went to a GP app. first is because I decided to start it that way.

Firstly, as I stated, there had been some confusion as to what we were actually fighting.

For that reason, I was reluctant to go to him privately, not knowing what we were doing exactly.

Anyways, I've spent months now in Hospitals for tests and the Dr. wanted to see these tests which didn't necessarily need to be done in a private app.

Also, if this Dr. ,after the expensive test, was not really sure we're dealing with Lyme (because of a test) than I was also reluctant to pay privately for Lyme appointments.

I never really had assurance that it was clear who the enemy.

I think this Dr. is the only ILADS educated Dr. here.

I know I could also be in the wrong. I'm sure some of my assumptions could be wrong.

It's confusing and I've bascially had to self treat at times, learn on my own and sift through the controversy on my own.

Have to consider plan B,C,etc...

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lax mom
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fred0: there are Drs out there who have been to an ILADS conference and their name is on the ILADS membership list, however, they do not treat according to ILADS guidelines. This Dr is apparently one of them.

There has to be more ILADS Drs, real ILADS Drs, in CA. That's a huge state and there are plenty of LN members on here who are treating with LLMD's in your state.

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Judie
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RUN RUN RUN from this doctor!!!!! I wonder if you went to the same clinic as me since we're both in California.

I treated with a supposedly LL acupuncturist/PA like your doc since January 2013 who also said things like, "the main problem is the 'environment' of my body."

This acupuncturist I saw had gone to ILADS conferences too and trained under the doc I saw last year too, so I thought I was in good hands....WRONG.

I had a positive western blot in 2012 too and a bullseye rash.

After 8 months of this "blaming my body" and saying Lyme isn't the main problem, I got REINFECTED with Lyme in August of this year. I had the bulls-eye rash and everything.

I had FULL-BLOWN Lyme within a week of this happening (trouble walking, standing, horrid pain, headache and chest pressure).

The acupuncturist refused to give me antibiotics saying it was sinuses and asthma. She said just because you have a bulls-eye rash, doesn't mean you have Lyme.

Well, my health crumbled FAST. Couldn't drive, couldn't walk, couldn't talk, severe pain and pressure.

I started self-treating with my meds from last year.

I was able to get a ride to my old clinic that I went to last year too since I couldn't drive.

Within a couple week, EVERYTHING has turned around for the BETTER by being put on a combo of antibiotics.

Antibiotics can KICK this stuff out of your body and help you HEAL! They aren't the enemy, LYME is the enemy. You just need to find the right doctor.

Last year when I treated with antibiotics, the MENTAL ISSUES went AWAY after a couple months. It was better than any psych meds I could have been on.

My friend who's been bi-polar for 30 years has been declining. Psych meds have stopped working for her.

Well, she just had a positive Lyme test and has been in treatment. ALL HER PSYCH PROBLEMS WERE FROM LYME!

I went to my local support group and found out another woman went to this acupuncturist with a CDC positive Lyme test in her pocket. The acupuncturist, before the woman could show her the test, told her ALL her problems were IN HER HEAD and kicked her out of the office.

Don't waste your time with this clown you just saw.

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Judie
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By the way Lyme AND coinfections might be the problem.

The last count I had 13 infections. Not fun.

If you can get a doc to run the tests from Stanford's CFS requisition sheet, it can give you more information:

http://chronicfatigue.stanford.edu/docs/CFS-lab-outside.pdf

Also test for h. pylori and fibrin monomer (this is another indicator for infection).

Article on hypercoagulation:

http://drcharlescrist.net/Borreliosis/Hypercoagulation/

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Judie
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Sorry for the long posts, but I'm infuriated with the doctor you just saw.

YOU HAVE A POSITIVE WESTERN BLOT FOR LYME!!!!

Lyme IS the problem.

I already went through the hell of replacing amalgams. It caused MORE dental problems.

PLEASE get another opinion before you commit to a doctor. Try to find a support group in your area, there may be a doc you don't know about who you can get to.

I see an LLND who combines herbals and antibiotics. Any herx I have had has been MINIMAL.

Find a doc who will take you SERIOUSLY and not MINIMIZE the REAL issue which is LYME.

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ralphi
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Yes, I definitely agree that you should seek another doctor. You should not feel frustrated or put down at ANY doctor's appointment.
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fred0
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Thanks, just to qualify....This Dr. didn't say that, 'it's all in my head'.


It sounded that way a bit to me but the Dr. said he didn't mean that at all. Therefore I asked him what he meant.

He did say something to the effect that I shouldn't focus so much on Lyme and that it wasn't the main problem.--that being almagam feelings for one.


Basically I should 'let go' of lyme.... I suppose meaning, I should not allow it to be the center of my life. (which could be true)

Or that I should look at other possibilities.?

I don't think he intentionally meant to put me down either. I did come out feeling down but...

I just think he gave his opinion of my case and what he felt I need to do.

It was just more confusion for me though.

I understand it was all to short to talk about these things in a GP appointment.

Dr. then mentioned something about that 'I was my own healer'...meaning that my body has the power, when strong to self heal.

Which to a degree that is true.

I was just in general, actually like always, confused by the meeting but that can go both ways.
Perhaps also he is not or no more involved with ILADS as I thought he was. Who knows?
Thanks for the story Judie.

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Judie
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"Dr. then mentioned something about that 'I was my own healer'...meaning that my body has the power, when strong to self heal.

Which to a degree that is true. "

Not with Lyme, not with cancer and not with many other illnesses. I've been chronically ill with none-Lyme illnesses since 1999 (prior to even having Lyme).

I wasted the first 3 years of getting ill believing my body could heal itself and doing ALL the right things to support my body, working with a practitioner who firmly believed what you and this last doctor believe.

I wound up severely ill at the end of this and in the hospital.

It sounds like you've been sick a long time.

I just want you to get the care you deserve.

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Keebler
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This doctor is NOT ILADS educated. I don't care if they attended conferences or not, they are NOT ILADS educated. NOT a true LLMD.

You deserve better. And it will be necessary to specifically address lyme and any coinfections. They must - absolutely must - be addressed directly in a complex manner for long enough.

Now, there are various ways to do that but the key is to DIRECTLY addresses each infection with enough, long enough.

You've often posted of your hesitancy to incorporated a full Rx protocol (and also never had a doctor who was up to speed). But don't give up on that idea. With the right LLMD, the right protocol, Rx may work (along with support).

A rife machine may be one way but it's still essential to have direction from a truly educated LLMD &/or LL ND. Truly educated and able to understand, comprehend, "get it" and then do it.

Happy & "strong" thoughts (while a good thing) are not enough. Not.

Support measures, alone, are not enough. Not with tick-borne infections. Not.

This explains it so much better than I can:

http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_4244055.html

Huffington Post - today - interview with a two real LLMDs. And Dr. H's book is out now (or very soon). That seems a vital book to get ASAP.
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Keebler
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The article is important to read first. Here's the book referenced:

http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400/ref=sr_1_1?ie=UTF8&qid=1384038119&sr=8-1&keywords=Horowitz%2C+lyme

Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease - by Dr. R.H.

For Release on Nov. 12, 2013

After looking over that and before ordering, come back here to click onto the Amazon add to the left of screen. That way a little money is donated to LymeNet.
-

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GretaM
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The body is our own healer with things like sprained muscles, cold and flu, and scratches on the skin.

(when one has a functioning immune system).

The body will never ever ever heal itself from a spriochetal bacterial infection.

Ever.

Al Capone. Napoleon Bonaparte. (syphillis examples, but examples).

Oh if healing from lyme was as simple as eating healthy, getting enough fresh air, and focusing on something else...

Your doc sounds like a flake. A completely uneducated money grabbing flake.

I am sorry but I am very angry about his/her comments.

You should have left that appointment with a specific goal in mind (healing from lyme), a specific treatment plan, or options for treatment for you to think about, and hope for a future free from the symptoms that are plagueing you.

I sure hope you didn't pay a lot for that appointment.

And as far as amalgam fillings go...

I have never had a cavity in my life-filling and metal free.

And lyme has made me unbelievably ill.

I wonder what load of blarney that doc uses if a patient has NO amalgam fillings.

Please do your body and mind justice and find an LLMD.

I am sorry for my tone in this post, but docs like that make my blood boil.

My anger is not directed towards you. You did your best, and are trying hard to get well. I am so proud of you for asking your questions and speaking up for yourself at that appointment. [Smile]



[group hug]

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fred0
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Thanks everybody and thank you Greta:)
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lax mom
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fred: I had all of my amalgams removed right before I got sick.

I had my root canalled teeth removed over a year ago in hopes that they were the cause of my stalled progress. I was told by my then Dr that I was going to feel soooo much better once those teeth were removed.

Well, I'm still sick and I miss my 2 molars badly.

This is just crazy making to me. Like Greta said, Drs would never get away with telling a syphillis patient that they need to focus on something else, clean up the environment and allow their body to do the healing.

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Lymetoo
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quote:
Originally posted by Judie:

Sorry for the long posts, but I'm infuriated with the doctor you just saw.

YOU HAVE A POSITIVE WESTERN BLOT FOR LYME!!!!

Lyme IS the problem.


-
Exactly. You do not HAVE TO HAVE an ILADS Dr... you just need a GOOD DOCTOR .. a smart Dr. This one doesn't sound like one.

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Opinions, not medical advice!

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Carol in PA
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"Anyways, the Dr. explained that I probably do have Lyme but that the main problem is the 'environment' of my body."
Fred, I'm going to confuse things further by saying that this doctor may have a point.

A couple years ago, we had a visit by a physician who treated according to this premise.
He was not well received.


This guy really tried to share his knowledge.
Some of the LymeNet people thought he was someone pretending to be the well known Dr. B, and began arguing with him.

He was exasperated with the ignorance he encountered, and left.


However, there were some people who went to him for treatment and got better.
One of them was named John.
I knew a friend of John's who told me that he was not interested in trying to argue about this doctor's theories with nonbelievers at LymeNet, and so did not post about his recovery.


So, even though many esteemed members here are telling you not to trust this doctor, I think you might want to look into his treatment ideas.

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Keebler
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I operatte under the impression that a good LLMD does consider the "environment" of the body, along with direct treatment. Many (if not most) of the LLMD's presentations at ILADS conferences include that aspect.

Carol's point is well taken that it does matter but I wasted five full years of my life and thousands of dollars with a doctor who thought that addressing "environment" with herbs and diet and a good outlook could do it all.

He said he knew all about lyme but did not. He said the herbs would address lyme (but later found out they were not really very specific and far weaker than they needed to be, too basic). I just want help others avoid the same mistakes I've made

Still, even from that disaster, I did learn many things to carry with me about the body "environment". I just needed so much more & better expertise.

Can you talk to the folks in the area lyme support groups to see just who might have experience with this doctor? If you can find others, that can be a tremendous help (although no two cases are the same).
-

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MamaBear11
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I once saw an advertised ILADS-affiliated LLMD, but it turns out he was nothing of the sort.

Actions speak louder than words. And though you continue to defend him and understandably want him to be a good doctor for you, this doctor sounds like a dud. I personally wouldn't waste more of my time or money on him.

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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fred0
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Thanks all.

Keebler- as far as I know there are no support groups here.

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Keebler
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Fred,

Are you in California (many there) or back in Austria?
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Keebler
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On-line support (and to see what others' suggest) through www.LymeDisease.org

http://www.lymedisease.org/resources/referrals.html

Doctor Referrals

http://www.lymedisease.org/resources/support.html

On-line support for those in CALIFORNIA above, other states below.

http://health.groups.yahoo.com/group/YOURSTATENAMELyme

Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state.

Not sure about Europe. They may have online support there, too.
-

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Robin123
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Fred is not in California.
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Catgirl
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Fred, I was told not to get my amalgams out. I didn't and I got worse. Once they were out, I started to get better (no more off gassing mercury 24/7).

There is a really good book you should read: Accidental Cure, Dr. Simon Yu.

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