posted
any thoughts, advice anything? I'm excited LOL
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
You are in good hands!! I go there as well!!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Does he use orals? Or is he big on piccs and IV's?
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 as the Drs. H's, J's and K's.
I hope I am making sense. Just kind of wondering if I'm doing myself a disservice by seeing someone closer to home rather than saying, "Screw it" and criss crossing the country to see someone well known.
Only wondering what it is they do differently and what is it they know that lesser known LLMD's don't.
I just wanna get well and get my life back Posts: 1142 | From South | Registered: Dec 2010
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Hambone
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posted
Geet....not implying you are criss crossing the country. I realize you are already close to him and I'm excited you get to see him.
I'm just thinking out loud about folks who I know who live in, say, California who fly to DC or NY when there are LLMD's closer.
Why? Does it really make a difference and can you get well faster? I'm ready to refinace my house and chuck all to the wind if I knew it would make a big difference.
Posts: 1142 | From South | Registered: Dec 2010
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Hambone
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Member # 29535
posted
Thanks Stillwater. Just wish I knew what these tricks-up-the-sleeve were so my closer-to-home doc can help me feel better faster.
I soooo wish I could see one of these guys.
Can't wait to hear about it, Geet.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Thanks guys!! I hope stillwater answered your question I dont know what makes them better but I've seen another "big wig" and didnt feel I got the right treatment. But I know this may sound silly but I think Dr. H is it for me and I know he is going to be the one to get me better :-)
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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Hambone
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by Geet3721: But I know this may sound silly but I think Dr. H is it for me and I know he is going to be the one to get me better :-)
Not silly at all. When you know, you know.
I think that's what has me uptight about my LLMD. Love him to pieces, but don't have that gut feeling he will be "the one" who raises me from the dead.
Posts: 1142 | From South | Registered: Dec 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My LLMD follows Dr. H's protocols and got me into remission in the same time.
If they go to ILADS seminars they get to hear the "big wigs" speak and tell of their tricks.
(Ha, I wrote ticks by mistake! See where my mind is!)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Have a clear idea in your head of your percentage of normal. Not so easy when you haven't felt normal in a long time!!! This is a benchmark for future appointments.
If it varies day to day than know your percentage of normal on good days and bad days. Be realistic. Don"t think because you got yourself there and can communicate that you are 90 percent like I usually do!!!
You will be very happy and feel well taken care of. good luck!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I went to Dr. H eleven years ago. 2000-2001 I flew out to see him from Montana at that time. Expensive.
I was good for maybe 8-9yrs after a-almost two year treatment with him.(he told my GP in MT how to treat me if I couldn't fly out at the end of treatment) Lots of strong drugs, IV's... lots of 'his' natural pills too.
We all have to find what works for our body. Best wishes for your first visit~
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
People go because he's super aggressive and not timid like other LLMDs. Some people need this to improve. Many LLMDs are fearful of medical boards and liability. Others don't seem to be. I'm guessing medical protection laws for Lyme treatment is a huge reason people go to docs far away.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I am considering Dr. H...could you please PM me your thoughts, if you have seen him. I am on my second LLMD and worse now than when I first started treatment...
Thanks in advance!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've got a call to potentially see Dr. H sometime this summer if I'm still plateaued by then.
I'm very loyal to my local LLMD. She diagnosed me and got me from almost having to stop work and go on disability to being 90-95% most days.
Problem is...I've been stuck here for 6 months now with no further progress.
So...it may be time to see what "the expert" has to say.
I'm not as bad off as some. But I feel / hope he should be able to get me back to a full 100% and in remission.
Night sweats, twitching calves, mild foot pain, mild vision weirdness, and tinnitus isn't normal folks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Sammi
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posted
Geet3721, how did your appointment go?
Please let us know!
Posts: 4681 | Registered: Oct 2000
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Hambone
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Member # 29535
posted
quote:Originally posted by Sammi: Geet3721, how did your appointment go?
Please let us know!
Geeeeeeeeeet .....we're waaaaaaiting
Hope it went greater than great.
Posts: 1142 | From South | Registered: Dec 2010
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posted
It went amazing!!!! Thanks for asking. L was great she took her time and really seemed to know her stuff, the staff was friendly and we were all kidding around!!! they are adding rifaphin (sp?) and some other supplements and taking me off some too! I also had an IV push of sorts and I think it made me feel alot better I mean I feel like I'm thinking clearer today.
I'll come back in a little and tell you more I'm at work and a lil busy right now :-) thank you all for all your best wishes and advice!!!
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
Ok sorry about that, so I'm staying on biaxin plaq combo stopping diflucan,
and a lot of the supplements I was taking, adding rimpafin (sp) adding a babs, Pekana drainage, sydetox, Nrf2, Cm Core, Inflammacore,
welbutrin to quit smoking, allegra and singular for chest congestion, keeping samento and pinella. Using burbur if I feel herxy.
Stopping culturelle probiotics and adding Theralac and VSL prescription.
Possibly doing medifast for a bit to drop some of this weight I've packed on (depends on if I can afford it or not) if not Lyme diet!
Xanax for anxiety upping my l-theanine to three times a day and low dose Naloxone ( I'm not really sure what thats for but I think its what they use to counteract narcotic overdoses).
Any thoughts would be appreciated!!!!!
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That all sounds pretty familiar. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
yup sounds alll very very familiar!!! )
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
:-) I just need to ackowledge something here. I don't know that if it wasn't for this website and the amazing people on it you know who you are lol I would never know what I know I would've never went to a llmd at all and I would be suffering and wonder what was going on. The fact that everyone here is so helpful in sharing there knowledge and educating others is really so selfless and amazing.
So I just want to say Thank you !!!! All of you ! I'm blessed and I love my lyme family :-)
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
TF very well said. With out a comprehensive integrative approach by an doctor who use the approach you described a patient with chronic lyme stands very little change of getting back on his or her feet.
An early detected and treated case of Lyme may not require this kind of approach, but sometimes will, but a late diagnosed case most certainly will.
If an LLMD is using a mainstream AMA approach to just dispense ABX and other meds it's not what lyme patients need. In general, I believe it's not what any patient needs no matter what the disease.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
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posted
Geet372, thanks for sharing your experience with us. I think you are on the right path.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
TF - How does a doc test to see that Mepron levels are adequate?
thx, racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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BackinStOlaf
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Member # 23725
posted
Racer, politely butting in: They test Mepron levels with a blood test
STILLWATER: would you mind telling us the oral protocol that got you better?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Well said, TF and Stillwater.
I have been to two LLMD's. The first one was a well known doctor in the Midwest. The second one is an upcoming LLMD in Illinois that I heard from this board and a poster.
The first LLMD got me so far, the second one got me to 90-95%, but I relapsed in April. She's helpimg me out of it. It seems Mycoplamsa Pneu. is an issue here, not the Lyme and Babs, which apparently are under control. All infections need to be tackled.
If you don't succeed, keep trying!
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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