METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
So, I'm seeing a new physician, Dr H in New York. I'm expected to perform a number of activities within one month, and I'm facing some obstacles.
My first concern is that I'm not sure exactly how much I was prescribed of certain supplements. If other patients of Dr. H read this, please PM me, I'd like to ask some questions.
My appointment was 4 hours long, and while I pride myself on being able to recall auditory details (I have no idea why), I got lost a lot!
Tests were ordered that I've never even thought of. I knew all the labs: MDL, Clonogen, Igenex, Quest, etc, but more than 30 vials of blood were taken.
I originally was a patient of another LLMD and let me tell you. You get what you pay for. He is a nice guy who is too conservative and only now beginning to consider even using treatments beyond the standard two monotherapy protocols.
You see him once every 6 or 12 months, and he doesn't require you to keep in touch unless you wish. He expects you to work through your primary for just about everything.
Dr. H on the other hand expects to see you constantly, with good reason, as a consequence of aggressive therapy which will change rapidly based on response. It is certainly extremely far from mono-therapy. We're talking 10 prescriptions or more.
I saw Dr H's PA. who I already knew from meeting her a number of times. I felt most comfortable setting the appt up with her.
She is incredibly competent. I told her to slow her pace for me at the start of the appointment. She did slow down to the best of her ability, but it was still a relatively faster pace than I would have liked.
At the end of the appointment, the last 15-30 mins was spent with Dr. H -- which is "perfectly" fine for me, because Dr. H and I, while we get along, we have entirely different styles.
I'm a very strong willed and well organized patient who has played doctor for 22 years of my life as a consequence of being born into this illness, and being abandoned and betrayed by many people and most of my physicians, while he's a strong willed doctor who has played, er..... Is a doctor, for more than 22 years of his life and has "not" abandoned or betrayed his patients!
So rather than a mutual exchange, it tended to be a lecture such as you'd receive in college, a monologue, rather than a dialogue.
This is perfectly fine as I can appreciate it given the accuracy of information and no-nonsense facts. No matter how complicated my questions, both the PA and Dr H immediately had a strong answer that I knew was correct for the purpose of how they were applying a concept
I saw the PA first so I could really get deep into the material I'd presented. It paved the way to being able to tie up loose ends by listening, with only one or two questions on my part to Dr. H.
For those who want to see what happened in the appointment, PM me and I'll link you to my blog. I recorded what I could recall.
For those even considering seeing Dr. H's office, you absolutely need to bring a tape recorder if you do a consult. 4 hours of information processing at rapid speed is far too intense and overwhelming for most patients.
I have to perform the saliva testing, stool analysis, and Toxic Metal Urinalysis testing. These are a pain! I start them tomorrow.
I am now having a massive problem with my insurance. They're saying they will not cover any of the prescriptions since they are out of state in New York.
They told me Medicare "might" pick up some of the tab for some of the medications, but that is simply not enough, we're talking about thousands upon thousands of dollars of medications. I'm just a lowly patient making less than 13K a year!
I was in a panic yesterday over how I'll manage to straighten out a new course of payment. I talked with some family, my girl, and sent an e-mail to my primary pleading for her to write the same prescriptions from Massachusetts.
I hope she'll do this, because I don't know of any of my other doctors who will.
Anyway this is a summary of what happened.
[ 01-28-2009, 12:46 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Mike,
I am VERY interested in hearing more details on this visit as I've considered several NY LLMDs. I would like to get more details about the visit, tests required, cost of visit, follow-up expectations, etc. Anything would be greatly appreciated.
Also, I hope something can be done to get your medications covered. How sad. That's always my fear too if I go out of state.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Mike you are from Mass as well... Is there anyway you can get MAsshealth or NHP??? They covered SOME of my meds even though it was a NY prescription.... The thing is they don't cover a lot and cover things you wouldnt expect like Mepron, yet gave you a hard tim about zith... lol
I hope you get it figured out!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
If I was you I would review your other options! I see Dr. R in Manhattan and he is wonderful! 5 hours with him the entire time! You may call around and ask oter Dr's precedures etc...... I have not heard good things from him and even from other Dr's there were commentsthat he runs test that are not necessary to get you well!!!!
Please to his current patients I meant no disrespect!!! Please do not get upset with me! This is just my opinion!
I guess it is all really what you like and expect!
Best of luck with your new treamet!!!
Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Mike,
I take the opposite view of onmyway (no offense at all to omy)
My doctor runs many tests frequently. Early on, I accused her of healing me by bloodletting and calling it blood testing.
However, those tests have been invaluable. To know your enemy is the first step in conquering your enemy. And, because of the positive test results, my insurance company never balks at paying for any of the standard medical prescriptions and treatments. They do not cover the alternative treatments. They pay for all the tests.
I have a PPO and crossing the state line has never been an issue yet.
As for the "I must be in control" thing.....I have the exact same nature. I can tell you firsthand that when Jesus said "I will set you free", one of the things he sets you free from is the incredible strain of running your own show.
We aren't really in control of anything. Nothing. And the more we try to be in control, the more stressed out we become.
Find a doctor you feel comfortable with and then allow him/her to help you the way they think best.
Think of it like the military. If the soldier constantly questions each command and balks at following the commands, the soldier will soon die, right? Can't fight a battle that way.
That does not mean you just blindly follow along. Study, learn about each treatment. In fact, the more you understand how the treatment is supposed to work, the more your mind will visualize it working and the better you will respond to the treatment.
If at any point, you no longer feel this doctor is helping you, move on. If, from the very onset, you feel the doctor is not going down the treatment path you want to follow, leave right away and find another doctor.
Just don't try to control the doctor. They do have more training than we and they are seeing many patients with similar problems and have the experience of what works most of the time.
You need a doctor who has a plan of action and can stick to that plan.
This sounds like just such a doctor.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Dr. H does get flack from other LLMD's regarding his treating more than just Lyme and for treating with herbs/supps. However, some of us are looking for that.
Fortunately, my insurance didn't care that the scripts were from NY .... how would they even KNOW?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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At my husband's first visit with a different well-respected LLMD (his third), much blood flowed, and we were sent home with a bewildering array of home test kits, too. This turned out to be a positive turning point. We found out about many as-yet uncovered issues (metals, yeast, etc.) that have been important in his healing.
But it can be overwhelming!
The part I want to address is trying to coordinate the various home test kits. Be sure to read through the instructions several times. Some require that you temporarily stop meds and supplements. Some may require that you not eat certain foods prior and during. Some must be done within a time window.
I actually typed out a separate set of instructions, instead of trying to go back and forth between all the individual inserts.
If by any chance you are doing any of the following tests, I saved my instructions. They are in a word file, so if it would be helpful, PM me with your e-mail address or your blog link, and I'll be happy to send them on.
The tests we did simultaneously were: Sanesco HPA profile Diagnos-Teks GI Health US Biotek Urinary Metabolic Profile Doctor's Data DMSA challenge Heavy Metals
I remember wanting to get started on all of them right away, but being glad that we waited till I was clear on how to coordinate all of them.
Just our experience....
It sounds like a great new beginning to me.
Best to you, viva
Posts: 532 | From southeast US | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey..
Glad you got to see some of the best in the business.
It had to be OW for sure! (OW-overwhelming)
Here is a thought to consider.
He, like the others, is just a doctor.
You get what you can from the appointment... go home and consider the options and see how it can be done (this can take a month or more)... and then do what you feel is best for YOU from his suggestions.
Example- I was immediately told to take Questran at one appointment. BAD NEWS and a big NO NO NO for me. I did badly on it in the past.
I explained that at the time. It wasn't "accepted" as well as I thought it could be.... so I went home and thought about it... decided NO NO NO again... and did as I needed to be able to survive.
I often thought of the ducks as a prescription pad with legs.
And may I suggest?
If unclear on any instructions... write down your questions, send it to him and wait for a reply.
His protocol for you may not be the same as it would for others here.
And I agree with viva and others. The more you know about the enemies within... the better off you are.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Excellent advice from everyone. You've reinforced my convictions. I'm confident with the direction course, and I will consider visiting the pharmacy to establish what will and will not be covered. We'll see.
Anyone who wants the blog link, please PM me. The names of the doctors are included and so I want to screen who I give it to.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I see Dr. H also. My first visit in Nov 2007 was about 4-5 hours. I saw the NP and then Dr. H came in at the end of the visit.
That first visit was totally overwhelming and thankfully I had my husband and a notebook with me. They took about 12 tubes of blood and I was tested for all kinds of things.
Also tested the saliva and for heavy metals.
I continue to make my appts. with the NP since he knows my case. He always gets back to me within a day or two when I have questions.
I have never been pressured to buy supplements from them. I did purchase some Cowden detox.
I live in NH and have had no problems filling the prescriptions from NY.
I am currently on IV Rocephin and will be adding IV Zithro this week. I feel if Dr. H and his staff can't get me into remission then I am in trouble...
Posts: 343 | From North Carolina | Registered: Oct 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
MIke,
Dr. L is in MA and trained under Dr. H. She uses his protocols, and your insurance would cover her.
Why not go see her? You will probably get almost the same treatment and get it covered. Everyone who has seen her is thrilled.
Her forms even have Dr. H's name on the letterhead. She is new, straight from NYC.
[ January 26, 2009, 09:05 PM: Message edited by: Lou B ]
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Tracy, will that doc accept out-of-state patients? Does she participate in many networks? That kinda catches my eye? How often does she need to see out-of-state patients? Length of first visit? If you could PM me if you know some of it, I'd appreciate it. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Absolutely, I see her for the first time today and I am an out of state patient. Also on person recently flew from FL to see her, and I have a couple from Maine staying with me later this week that are going to see her.
First visit one hour, cost if out of pocket, $400. She takes many insurances, including Medicare, Blue Cross, and United Health Care, to name a few....I may have listed them all in Seeking a Doctor section.
I did put her name in with her full permission, by the way.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Well, I've just edited out my post in light of Lou's post.
[ 01-28-2009, 01:00 PM: Message edited by: oxygenbabe ]
Posts: 2276 | From united states | Registered: Jun 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
We'll find out. I keep reports of Dr. H. I have around 20 recorded reports. Probably more. I record reports whether negative or positive of every doctor on this forum who has ever even been mentioned.
I'm crafty like that. Hehe. But seriously patient reports are the foundation in my opinion of what to recommend and what patients can expect.
Anyone who would like a copy of the patient reports is welcome to PM me. I chose him because quite frankly he has the best relationship with Dr. Burrascano, and Dr. B highly recommended him stating that he follows the same routines.
. H just happens to have a different personally. Dr. Burrascano is sweet, pleasant and moves at a slower pace, while his PA is ADHD fast, but very sweet, nice and pleasant. Just keep telling her "slow" down right from the start, and keep reminding her.
She'll do her best. She's not trying to rush, it's just her natural personality, I promise. Dr. H is matter-of-fact, but he's still nice as long as you comply and he will answer questions, but you can't be vague when asking. He does spend very little time with you if you scheduled your appointment with the PA.
You have to understand -- and this is very critical -- you "can" schedule appointments with Dr. H himself, but only if he can fit you in. Remember, he's got patients who are already scheduled as far into the future as July, but sometimes patients cancel or change appointments and you can get it. He doesn't make his PA's do the work because he wants to. He does it because he has to.
At the end, he does a very thorough job of going over your records if you've done the footwork in advance regarding the stuff I listed, but he'll also read the notes of his PA. They take excellent notes, but their handwriting sucks *** .
At any rate, while he may seem like he's rushing, he knows exactly what he's doing, and if he feels a change should be made that the PA chose, he'll say so. I've been to a lot of appointments because my girlfriend sees him. We've had entire appointments with just Dr. H, and trust me, he doesn't rush those regular appointments.
They're 45 mins to an hour long if you update him, ask questions, and really stay organized. Don't be intimidated, he liked to be engaged, even if he gives you that look "Why are you even asking me this question...." --- That type of look. Trust me, he likes answering them.
It's good to have questions written in advance too. When I handed Lauren my own condensed records on charts I'd made she tried to start the appointment without looking at them.
I pushed them in front of her and said "No, you need to read these. No sense in asking me questions or writing notes when I've already written a summary of my exposure to ticks, my symptoms, my history and family experiences etc."
She said "oh good, this is great." Dr. H said the same thing when I did my girlfriends charts. The less work they have to do on the "basic" stuff, the more work they can to on creating and explaining routines and answering good questions thoroughly.
You need to: bring clearly documented lists, dividing your records (tests and notes) chronologically by year with bright red paper clips, defining all diagnosis you've had in a list, who diagnosed you and when did they diagnose you.
You also need to list as many medications as you can list from the past thru the present, including supplements, and a brief answer about how you responded to them. I used "Poor response, Fair Response, Good Response and Great Response as my defining criteria, and I listed whether I was allergic next to each one.
If I wasn't I didn't list anything, if I was, I listed allergic. I made a list of all the doctors I see or have seen, as well as their phone numbers, and addresses and what their specialties were.
Lauren or Dr. H will check of the ones you "currently" see as the foundation of who they'll deal with and send copies of medical records to, and other things.
They also are mostly concerned with Brain Scans: PET, MRI, SPECT or anything of that sort, and all your tests specifically for Lyme or co-infections or viral. They also like blood work like ABC, Liver, Kidneys or anything of that sort which is recent.
Anything within 1 year is most useful, but something that is two years old that stands out in blood testing, such as a viral test or some abnormalities in metal testing will be critical to announce to her or him
So those are the primary things that make them happiest. Nice, organized, condensed, concise charts. All of my medical records from 22 years, including everything I've listed came to a total of 16 pages.
They were also very sensitive to my ability to pay for things.
Dr. H and his PA (L) both made it clear and told me "If it's a cost issue, just do this and this, but if you can, try to add these."
I made it clear to Lauren that cost was an issue from the start, but told her not to hold back in what she would recommend. Basically, give me everything assuming money was not object.
I told her I wanted to know the best possible routine, and then after we defined it, we then would list the "necessities" and which could be done without, or temporarily held until a little later.
So that's a little more information for everyone.
[ 01-28-2009, 12:44 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks Derek, I'm gradually working through the details right now. I managed to get my primary to prescribe all the same medications that Dr. H's office prescribed. Masshealth should cover "some" of it because of that. Masshealth has a new policy that they will not -- under no circumstance -- pay for prescriptions prescribed out of state.
I'm optimistic. I've gotta call Social Security tomorrow to see if they'll give me my medicare ID number. Without it none of my medications are covered, nor will Masshealth help me (it's my secondary, so Medicare must deny treatment first before Masshealth is activated).
Once I have that ID I then have to call Dr. H and everyone else that I gave my old Medicare card number, so they don't send me ten thousand dollars in bills.
It's a lot on my plate, but I'm doing it!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
MIke, You could become a consultant and have us Lymies send you our medical records and you could organize them as you described for a fee. You could get enough money to pay for your treatment I'll bet!
And what a service it would be; I'd pay you to do it!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm pretty anal with my records too now. You kind of have to be if this day and age.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by oxygenbabe: I've never been too keen on what I've heard of Dr. H. First, he lets his P.A. do the heavy lifting with everybody--and spends exactly that limited amount of time with every patient I've personally spoken to about him.
Don't have time to post much now, just wanted to respond to this statement quickly. I saw Dr. H for my initial appt, which consisted of roughly 2 hours of talking with him directly, and met with him again for my follow-up appt.
Mike, I'll try to give you some advice and add my perspective on some of your questions if I get a chance later this week. I definitely agree with what viva said in regards to taking time to sort out and read through all the test instructions thoroughly and not rushing too quickly into getting them done. You may have to modify your diet, eliminate certain supplements/meds for a few days, collect only on certain days depending on shipment, adjust your sleep or work schedule to comply closely enough to testing times, etc.
Posts: 43 | From NJ | Registered: May 2007
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posted
I much preferred JF over the lady PA. Very knowledgable and a nice guy. She made some diagnositc errors with me that shook my confidence.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I managed to get my primary doctor to prescribe "everything" that they prescribed from New York. That was the only way Masshealth would cover any of my medications. Medicare covered some things, regardless of whether they were prescribed in New York or not.
VSL #3 is "not" covered by Masshealth or Medicare. The cost for the DS 900 Billion packets is 125$ from Walgreens, but you only get 20 packets. It's a "decent" price.
I've begun the routine by have only started on the 22nd, so I don't have any information yet regarding how I'm responding. The PA (L) called me twice tonight when I wasn't available and notified me of some lab tests.
She said nothing too serious was present, but that mold exposure (which we knew was likely present), as well as Rocky Mountain Spotted Fever. I don't know whether this was a prior infection, present, or a false-positive, but she mentioned it. She didn't tell me the context however.
She said my potassium levels were excessively high, but I don't take potassium supplements (which she told me to stop...if I was taking them). So I'll find out what that means. As usual, Vitamin D levels were low (Not going outside might have something to do with that, right folks? Hehe).
So, right now I've got these prescriptions:
So that's where I am. I finished the Stool, Urine and Saliva testing. It was tedious but I did it in two days and filled out all the forms.
Medicare does not cover the Urine Metal testing, which is only 60 dollars if you pay them immediately. I used my CC/Debit card. They called me to confirm it.
More test results, supplements and other wild things will be on the way I'm sure.
[ 01-27-2009, 08:10 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Nan, were the errors serious and did Dr. H catch them?
Tracy, tell me about it. I'm incredibly precise with my records and I condense everything so that only the abnormalities are documented in the condensed version. I keep the main records organized by year, so that if a physician wants to review the actual records in which I created the condensed version, they can.
The condensed version, as I said is about 16 pages long, and includes 22 years of medical history. The binder from which the records came is about 500 pages. So that shows you how much work it was.
Derek received a template of the condensed version. I'm pretty sure he liked it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Think about this ... based on HIPAA, Title II, The Privacy Rule, a health care provider (doctor, LLMD, PA, NP, whoever) can not disclose your health information or anything related to his or her interactions with you without your specific authorization.
Yet, you come here, on a public Internet BB, and discuss specifics of your visit with a health care provider. I believe these discussions are inappropriate on the LymeNet Flash and I will soon propose to the LymeNet Board of Directors a modification to our Terms of Use prohibiting such discussions.
A little reinforcement.
The following is part of an email exchange I had with Pat Smith, President of LDA:
"Lou, at the moment I know of a half dozen or more of docs under scrutiny. A few of the docs have websites and go out there, but most don't. The major websites do not post names. I do not use names when I speak about docs, we do not use them on materials in testimony and try to train patients not to use them.
I used to think people were a bit out there when they said websites were monitored. We know from certain legal cases that indeed, that has happened. People speak about treatment on the net. Not good to have someone say Dr XXXX gave me 1G XXXX drug 2x day. I actually have become more conservative as I have seen documents and heard political chatter all over and I think we keep docs and specifics of treatment as off the net as possible."
Got the message?
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'll remove the specifics of the prescribed medications and doses for treatment, but not the rest. And Lou it's embarrassing to be chastised in front of other members like I were an incompetent child. No disrespect intended but this is how I felt waking up this morning reading this.
Hopefully that compromise satisfies you.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Metallic, he wasn't chastising you. He seems to be saying, and I can see his point, that those who are pursuing/prosecuting/questioning LLMD's may use this website to gather information. So that this thread could be a little dangerous.
Lou, you feel initials are no longer safe enough? Dr. H, Dr. L etc?
It is useful to share info about doctors so how can one do this without endangering them?
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Maybe we should just be saying "my LLMD" instead of saying who it is.
Metallic, I read that high potassium often has to do with adrenal fatigue. Might be something to research further. This is also why those with adrenal fatigue benefit from salt.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Good grief...there are rules and VALID reasons behind these rules. NO ONE has a right to circumvent these rules, for ANY reason. If one does not agree, please go to another board. These rules have been a part of LYMENET since the beginning, and they ARE necessary to protect the Doctors. Yes, I know that it is probably public knowledge who the LLMD's are...however, we do not need to reinforce the evil meanies who desire to prosecute or discredit our Doctors for treating Lyme aggressively.
As far as being chastised, when the shoe fits, wear it...no one is perfect...take responsibility for your words. We are all in this together...no one has rights above and beyond the others.
Lou B was 100% correct...he is the boss, deal with it.
How to exchange Doctor info safely? USE the PM feature!!! Send PRIVATE EMAILS to whoever...these cannot be viewed by anyone other than the recipient. EASY!!!!
Peace, love and wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey JR... nice to see you!
MB- Please don't feel like LouB is picking on just you. This is a general rule that has been in place forever.. as JR mentioned.
I would like to comment on the public chastising of our LLMD's also.
I know there isn't a fence to gossip over here at LymeNet.. but there is a PM function here if anyone feels they MUST say something unkind or hateful about those who are right beside us fighting this horrible war.
And there are email and phones to spread that kind of "stuff" around if someone is so obsessed they MUST continue on that destructive path.
So please remember...
Sharing negative and unsolicited personal opinions about the few doctors we do have, in PUBLIC, is not cool.
Doing something that low does not give them a chance to defend themselves or explain the other side of the story. Spreading negative gossip and opinions in public is hurtful, disparaging and serves no good purpose.. and never has.
It might make the poster... especially those who feel they HAVE to post nasty stuff and justify it as a "service" to the community... (give me a break)... feel better to say hurtful things and trash people...
But it totally upsets those who are that doctor's patient, those who fight every day to protect the few doctors we have... and it makes the original poster look quite ugly, stupid and vengeful.
Then the fights begin!
The "likes" and the "dislikes" go after each other and there is a free-for-all.
My thought is- if they could, the LLMD's might like to stop in here and say hey... what a dope of a patient that person was! Couldn't follow instructions, thought they knew everything, gave my staff a bad time, added stuff to their protocol that wasn't known to me ... blah blah blah.
Luckily, they aren't that low and immature. They are not only good LLMD's and good people... they know better than to tit for tat on a public forum.
So to everyone who feels they MUST say hateful and destructive things about others...
PLEASE consider OTHER people's feelings and try to resist that temptation for the good of the whole community.
I am sure it would be appreciated by all the decent folks on this board and certainly by ALL of our LLMD's.
ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Mike,
Please e-mail me and I will give you numbers of the Boston Patient Protection Service for MassHealth members. They can help a lot, and this service was recommended to me by my friend who works for MA's state district attorney. They guided me through my insurance grievance appeal. Di
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Let's just move past the prior issues and continue with the thread. I've come here to get well, not to a prove a point or violate rules. My health is worth more than my ego, so with that said, let's continue the discussion. If further adjustments are needed to the thread content, please PM me Lou and I'll follow your instructions immediately.
Artsi, thank you for that information. Yes, please PM me, I'd be grateful for any help you can offer me.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
i skimmed this briefly and caught this one you may have OVERLOOKED when you edited; i think this is what tincup is saying to you ...
below has opinions from OTHERS that you have typed here...
19-01-2009 11:47 AM -------------------------------------------------------------------------------- We'll find out. I keep reports of Dr. H. I have around 20 recorded reports. Probably more. I record reports whether negative or positive of every doctor on this forum who has ever even been mentioned.
I'm crafty like that. Hehe. But seriously patient reports are the foundation in my opinion of what to recommend and what patients can expect.
Anyone who would like a copy of the patient reports is welcome to PM me. I chose him because quite frankly he has the best relationship with Dr. Burrascano, and Dr. B highly recommended him stating that he follows the same routines.
. H just happens to have a different personally. Dr. Burrascano is sweet, pleasant and moves at a slower pace, while his PA is ADHD fast, but very sweet, nice and pleasant. Just keep telling her "slow" down right from the start, and keep reminding her.
She'll do her best. She's not trying to rush, it's just her natural personality, I promise. Dr. H is matter-of-fact, but he's still nice as long as you comply and he will answer questions, but you can't be vague when asking. He does spend very little time with you if you scheduled your appointment with the PA.
You have to understand -- and this is very critical -- you "can" schedule appointments with Dr. H himself, but only if he can fit you in. Remember, he's got patients who are already scheduled as far into the future as July, but sometimes patients cancel or change appointments and you can get it. He doesn't make his PA's do the work because he wants to. He does it because he has to.
At the end, he does a very thorough job of going over your records if you've done the footwork in advance regarding the stuff I listed, but he'll also read the notes of his PA. They take excellent notes, but their handwriting sucks *** .
At any rate, while he may seem like he's rushing, he knows exactly what he's doing, and if he feels a change should be made that the PA chose, he'll say so. I've been to a lot of appointments because my girlfriend sees him. We've had entire appointments with just Dr. H, and trust me, he doesn't rush those regular appointments.
They're 45 mins to an hour long if you update him, ask questions, and really stay organized. Don't be intimidated, he liked to be engaged, even if he gives you that look "Why are you even asking me this question...." --- That type of look. Trust me, he likes answering them.
It's good to have questions written in advance too. When I handed Lauren my own condensed records on charts I'd made she tried to start the appointment without looking at them.
I pushed them in front of her and said "No, you need to read these. No sense in asking me questions or writing notes when I've already written a summary of my exposure to ticks, my symptoms, my history and family experiences etc."
She said "oh good, this is great." Dr. H said the same thing when I did my girlfriends charts. The less work they have to do on the "basic" stuff, the more work they can to on creating and explaining routines and answering good questions thoroughly.
You need to: bring clearly documented lists, dividing your records (tests and notes) chronologically by year with bright red paper clips, defining all diagnosis you've had in a list, who diagnosed you and when did they diagnose you.
You also need to list as many medications as you can list from the past thru the present, including supplements, and a brief answer about how you responded to them. I used "Poor response, Fair Response, Good Response and Great Response as my defining criteria, and I listed whether I was allergic next to each one.
If I wasn't I didn't list anything, if I was, I listed allergic. I made a list of all the doctors I see or have seen, as well as their phone numbers, and addresses and what their specialties were.
Lauren or Dr. H will check of the ones you "currently" see as the foundation of who they'll deal with and send copies of medical records to, and other things.
They also are mostly concerned with Brain Scans: PET, MRI, SPECT or anything of that sort, and all your tests specifically for Lyme or co-infections or viral. They also like blood work like ABC, Liver, Kidneys or anything of that sort which is recent.
Anything within 1 year is most useful, but something that is two years old that stands out in blood testing, such as a viral test or some abnormalities in metal testing will be critical to announce to her or him
So those are the primary things that make them happiest. Nice, organized, condensed, concise charts. All of my medical records from 22 years, including everything I've listed came to a total of 16 pages.
They were also very sensitive to my ability to pay for things.
Dr. H and his PA (L) both made it clear and told me "If it's a cost issue, just do this and this, but if you can, try to add these."
I made it clear to Lauren that cost was an issue from the start, but told her not to hold back in what she would recommend. Basically, give me everything assuming money was not object.
I told her I wanted to know the best possible routine, and then after we defined it, we then would list the "necessities" and which could be done without, or temporarily held until a little later"
from what i can see; those comments should be deleted by others.
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posted
MB - Can you pm me and let me know how you went about getting an appointment with Dr. H? I have been calling for months and keep getting told he is not seeing new patients. Any suggestions would be appreciated.
Tracy9 - Can you pm me with Dr. L's name and location. I would like to check into that also.
I tried to pm the both of you but your message boxes are both full.
Much appreciated,
Stotes
Posts: 30 | From MN | Registered: Nov 2002
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posted
I just wanted to post. We are very happy with Dr. H and his staff. I think Dr. H is wonderful when we see him. He is never rushed, always explains things and is a wealth of information. Three of us see him and all are getting well. The office is organized, they always call back when we need them too. I feel Dr. H and his staff saved my son's life. We all receive excellent care!
Posts: 488 | From NY | Registered: Oct 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
As far as getting in to see Dr. H, they started seeing new patients in January. However, I called many months in advance and told them I wanted to see them the moment a spot opened and I asked if slots were open far far in advance.
Slots may have already been filled, I don't know. But that's how I got in.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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How sad. That's always my fear too if I go out of state.
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