lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I'm starting with this doc on Friday. I've failed 20 years of babesia treatment and it has adapted to everything. Will Dr. J's office hear me and work with me - no pulsing, new treatments, krintafel.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Great reviews on Dr J.
He is pretty strict with his pulsing protocol but I think he can definitely help you.
We want to hear all about it. You have had a LONG journey đź’š
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
How were you diagnosed with babs in your heart? I am not questioning your diagnosis just curious.
My mom's babesia was in her lungs. Mepron just about killed her.
Take it easy with any treatment. If my mom had stopped mepron when her body said she should rather than what LLMD's office said, she would be in a better place.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Please let us know how it goes at his office. I am considering this office.
Are you seeing a PA/NP? My understanding is that it is difficult, or impossible, to see him, if you are new. I could be wrong.
Also, are you going in-person? I don't have the capability of traveling anymore.
I also wouldn't want to pulse, so I'm curious how it goes for you there.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Please let us know how it goes at his office. I am considering this office.
Are you seeing a PA/NP? My understanding is that it is difficult, or impossible, to see him, if you are new. I could be wrong.
Also, are you going in-person? I don't have the capability of traveling anymore.
I also wouldn't want to pulse, so I'm curious how it goes for you there.
Posts: 3771 | From around | Registered: Mar 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I hope you have a great experience at Dr. J and D.C.
I did not at all
I some how got lost in their (terrible) office system- so make sure you stay on top of it all .
It looks like from the dates of your posts that you went in and got your follow up apt all within a month or so? I am still waiting for their office to call me back from this past summer!!
I never saw Dr. J. He has all kinds of people running things and I am thinking he doesn't know how poorly it is being run. many ppl have been disappointed . Going there for me was one of the most disapointing TBD dr. experiences I've had and the most expensive waste of money . sorry to say.
I truly thought he would be the one to totally save me- or fix me.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ALSO - for anyone considering giong there- you are forced to sign an agreement to never talk publicly about the protocols
AND - you are forced to sign a contract that states you will follow their entire protocol as given and with labs they check to see it you use anything they don't tell you to take or you will be expelled from the practice.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by LisaK: ALSO - for anyone considering giong there- you are forced to sign an agreement to never talk publicly about the protocols
AND - you are forced to sign a contract that states you will follow their entire protocol as given and with labs they check to see it you use anything they don't tell you to take or you will be expelled from the practice.
Yikes!! What if you have another condition for which you need care?? I know, I'm not asking you, Lisa, or anyone else. It just seems extreme. I understand not wanting patients to freelance, but . . . For example, if you had a kidney or liver condition, they are not specialists in that.
Lisa, I'm sorry that you had that experience; it must be devastating. I've had awful experiences with LLMDs plenty (not there, I've never been there.
It seems that when the offices have too many patients, it all goes haywire.
Not only that, but so many times I've had to ramp up on protocols much more slowly, as otherwise I just can't tolerate it. Sigh. That just sounds extreme and inflexible.
Posts: 3771 | From around | Registered: Mar 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Well, this doctor I’m seeing whose name none of you know refused to give me a protocol until I had gallbladder studies. I did explain that I cannot survive without therapies. Babesia is killing me 20 years now and what I’ve had to live on has become an atrocious amount of medicine.
This summer a prednisone pack allowed Babesia to rise like a beast and kick the hell out of my heart. So now without Babesia treatment running, my afib I developed after that Babesia kick brings me to my knees. No survival without meds. And he refused to refill a script until I did the testing.
I was slow to get to the testing because the afib just paralyzes me, and then I got Covid. So I called to get refills and I was refused until I did the testing.
I explained that I am simultaneously doing cardiac testing, cardioversion, and now investigating ablation, but I was refused a refill.
He also has a policy that if he prescribes IV meds for you, no matter what home health you have monitoring your port, you have to pay him an additional sum each month because he s in charge of your iv.
What I don’t understand is that docs prescribe you medications you go home and take, and that privilege is because you paid for the office appt. With me paying for a home nurse professional through my insurance, why must I pay a hefty fee monthly because he prescribed it.
The IV nurse said I had to sign a contract to this effect and pay before he would continue my port care from my previous doc who just retired.
When I said I wouldn’t pay , this llmd put in an order to my home nurses company to discontinue my port care, so I have no home health care company flushing my port.
My first appt in that office I reported that I had experienced drug induced lupus a few years back. When I received in the mail his write up about our discussion, he recounted that I said that and wrote in parenthesis “doubt” at the end of the sentence.
It did happen when I lived in Switzerland, and I saw my rheumatologist, who ran the blood work and diagnosed it.
There is other stuff too. But I’m so tired.
Then I flew into aggressive panic because when I hit the point that no one will write scripts and honor my 20 plus year journey, I’m dead as a door nail.
So that is how it is going with my current doc.
(Broke up the text for easier reading)
[ 01-21-2023, 11:20 AM: Message edited by: Robin123 ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
lymwreck. That doctor sounds horrible.
And I bet you waited a long time to get into him and paid a lot of money. So sorry.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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posted
Yes, I've heard about those contracts for the IV. That is really pitiful that he does that.
I pray you are able to find another doctor soon.
God bless.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hasn’t gotten any better. IV nurse screamed at me at length, mispronouncing my name. I just called for clarification on any help they could offer for pre-aurhorization, like coding, but couldn’t even get that question out.
What is confusing is one week before, I spoke with the same person who was very pleasant.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
odd about the IV nurse. I remember when I went off IV and moved to total orals. That meant a change in nursing staff. Wow what a shock. The difference in nursing staff was astounding.
I mentioned this to him a while after I was off IV and on orals. He said he realized this and they made a "transition" nursing staff to go between the IV staff and oral staff. It must have been bad if was willing to consider this.
However I don't know if he ever really implemented it.
Sorry about your experience. It sounds like you are going to stick out the IV protocol. i cant blame you. It is hard to quit something when you have so much money involved.
Do you see him monthly or a PA?
Posts: 832 | From Somewhere | Registered: Nov 2010
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quote:Originally posted by Lymetoo: Yes, I've heard about those contracts for the IV. That is really pitiful that he does that.
I pray you are able to find another doctor soon.
God bless.
Dr J seems very rational and compassionate towards Lyme patients of all the LLMD's i have followed and doesn't seem to chase the limelight or financial rewards - with books, website, products, self promotion etc like many of the other prominent LLMD's we have seen.
so i think there must be a good reason for that.
i do understand that money is an issue for many, probably most patients and so for sure this could be a cause for concern and a point of friction.
i just think we only have part of the story here
for instance - maybe they have additional costs, or risks or regulatory requirements on them that we do not know about - that force them to follow this policy.
Posts: 245 | From UK | Registered: Feb 2020
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I understand it as is you are paying for his protocol that he has spent time (and therefore money) developing.
Yes he is expensive. I often wonder about the cost of other LLMD's IV.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
lymewreck36 , how are you doing??
It sounds like you've had a very rough road!! And it's especially bad when you have a port and are trying to do IV. I hope things have improved for you.
I also have a port and need IV, so I understand the terrain.
This may well be beyond the scope for you if you're still with Dr. J's office, but one thing you might think about is that if you have a sympathetic IV nurse, who is willing to do this "off the books," the nurse could teach you how to access your port, ie put in a new needle.
Yes, it's great to have a nurse do it IF they are really good with ports and are a stickler for sterile technique (essential!). But I found it important to know how to do it in case you are in a bind with no port care, you can do it yourself. It's not as hard as one might think.
Posts: 3771 | From around | Registered: Mar 2008
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