posted
He's been my LLMD for a year and three months, has tried multiple different drugs & combinations with me and I am no better now than the day I first walked in his office.
I've hit this plateau and can't seem to overcome it.
So, now I've pretty much run out of money (and I still owe their office a lot). It seems the return on my investment is nothing.
It's so discouraging and at this point, there is no money to go see someone better. He was all I could afford before.
Just wanted to find out if he has ever really helped anyone beat Lyme & co. Let me know...
It may a different doc than you are thinking of - this one is in West Chester.
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To everyone on this board,
Please find out in advance if the doc you are considering has ever gotten rid of lyme disease for anyone.
Contact your state lyme support groups (left side of the page under Support Groups) to get this kind of info.
You want to know and have confirmed at least 1 person who has gotten rid of lyme under the doctor's care. It is best if you can confirm 3 people who have gotten well. Try to talk to the people to be sure they are well thanks to that doc.
The point is to not waste time and money on doctors who have not been able to get anyone well.
Many doctors treat lyme disease, but they don't all know enough to get people well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WildCondor
Unregistered
posted
100% agree with that TF said above. Many doctors call themselves LLMD's and in fact they are not. You have to do the asking around yourself and talk to the patients who have gotten well, not the ones who are still sick.
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posted
If we are talking about Dr. Br from Westchester, I have one word for you all ...RUN!!!
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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quote:Originally posted by thejoje: [QB] If we are talking about Dr. Br from Westchester, I have one word for you all ...RUN!!!
Br or Bu???
agree with the latter! Run!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Does he work with Dr. S. in Westchester? Run from him too!
-------------------- "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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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
quote:Originally posted by 17hens: Does he work with Dr. S. in Westchester? Run from him too!
yes run from him and the ID dr he often refers out to....
you might try to search for Dr B..there was a person who used to post about him on this board.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dr B. from Colmar dx me in 1999. He saved my life and was an excellent diagnostician. Unfortunately, I couldn't afford to see him anymore because it became too expensive.
I then went to Dr B (BU) not BR from Westchester who ordered a picc line for me.( he took my BC?BS ins.) He was very kind, but I wasn't getting any better even after six mos of IV Rocephin.
It wasn't until I started to treat with antiparasitics did I start to make any improvement. When searching for an LLMD, make sure they understand the MAJOR parasitic and worm infestation that most Lyme sufferers have.
Dr. K. treats all of his patients for this co-infection first.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This article speaks very well of one Dr. B. (in suburban Philadelphia). The article profiles a man who had been misdiagnosed with ALS and was dying. He had a complete turnaround when correctly diagnosed with lyme and treated:
you might try to search for Dr B..there was a person who used to post about him on this board. [/QB]
Yes, and she told us plenty. Enough for me to take him off my LLMD list.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
The Dr.B that was mentioned in the article that Keebler posted was the same LLMD who dx me and found a bullseye in my hair. I have also heard that he has taken care of quite a few people that were misdiagnosed with ALS.
I don't know who the poster was that was apparently negative, or the Dr. B that they were speaking of, but this one literally saved my life.
FYI, he is also the same LLMD that found borellia in sperm.
His office was not that efficient and his fees were high, but what price can you put on your life? That was back in 1999 and maybe things are different now.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks all. It is Dr. Bu*** that I am referring to.
TF - I did ask about him before and received mixed reviews as was the case with other LLMDs I've inquired about. Mostly, the chief complaint was his lack of time consideration. There was one guy at the county support group that called him "genius" and "brilliant".
I don't actually know anyone who has beat Lyme so finding an LLMD with a "good track record" but still affordable is tricky. As desperately as I have been to see a top LLMD, coming up with the cash to cover the first appt (plus tests, supplements, etc) was impossible.
That's one of the hardest things here on Lymenet - hearing over & over how important it is to go to a great LLMD but being unable to come up with the funds. We know it is crucial but it's like being between a rock and a hard place. You can only do the best you can with the resources you've got.
17hens - I saw Dr. S in WC about a year and a half ago. I agree that he was worthless.
lou - Positve Lyme WB from Igenex; Clinically based on symptoms, it appears that Bart is my problem. No lab test to confirm though. Current LLMD believes I have Babesia even though I have none of the symptoms specific to it. I disagree with this but have done the Babesia treatments he prescribed in the event I was wrong - I'm certainly no expert. Been treated for Lyme, Bart & Babesia at this point without improvement.
Six weeks on Ceftin; four weeks on oral Doxy; six months on Alinia & Rifampin; Twelve weeks on IV Rocephin & Tindamax; Five weeks on IV Doxy & Tindamax; Five weeks on IV Clyndamiacin (sp?) & Coartem and that's where I am now.
It's tough coming back this far only to be stymied. If this is the best I ever get, it's still 100 times better than where I was - but at the same time, if I've come this far I should be able to beat this thing!
What are people's thoughts about taking a break from all of the meds? Does it just give the Lyme a chance to regroup?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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posted
I tried to send you a message but your mailbox is full. I wanted to tell you about another doctor.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Dani, I didn't see Dr. B but know someone who did. She was no better when she left him after a number of months than when she started. I was warned off by the cost. I went to see Dr. E in Jackson, NJ--not a crazy hike from the Philly area. She treated me for four years and got me from a place of believing I might not survive the disease to a place of being well enough to go back to work full time--this after two years of treatment. Now, I'm seeing a specialist in NY.
Send me a pm if youd' like more info about any of them.
Posts: 2549 | From never never land | Registered: May 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Andie,
I'm a little confused about your statement of "She was no better after a number of months than when she started".
Then you spoke about another dr who treated you for 4 yrs and you got much better after 2 yrs. If it took that length of time for you to feel better, why would the person who saw Dr B expect to get better after a number of MONTHS?
I can't help but feel the reason Dr B is getting a bad rap is because of the cost and not the tx.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Gael .. we're not talking about the Dr B that you saw.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
xoxoxox,
I hear you. So sorry for you.
As one doctor said, "Lyme is a rich man's disease." So true.
There are 2 doctors in the Baltimore area who I know personally to have gotten rid of lyme for 3 people and more. If you ever want to try one of them, let me know. They don't take insurance.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
brooke - some emails have been deleted from my mailbox. Feel free to try that recommendation now.
Andie33 - PM'd you.
Gael - I'm unsure which Br. B you are thinking of but this one begins with "BU". With this doctor, it wasn't so much about the cost since his costs are more reasonable than other LLMDs, it was about lack of results for the financial outlay. If there was any improvement occurring, I would hock everything in my possession to keep going. It's that I've paid several thousands for office visits and IV therapy costs (mixing, insertion, etc.) and the only difference between starting with him & now is that I have no more money.
TF - Thanks. By all means, please do send me the names. Essentially, I have to start over. Hopefully, God will provide opportunity to make it happen financially.
Thanks to everyone for their comments.
I still do have the question about whether anyone thinks it's a bad/good idea to stop all meds for a while?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
PM sent.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just tired of taking abx and having no results.
Plus, there has been a constant borderline yeast issue that I've just barely been keeping in check.
It seems sort of pointless to continue the drugs I'm currently on since nothing has been affected. And if I stop going to this LLMD, the prescriptions will run out.
What do you think will happen?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Danni,
Please consider antiparasitics. It is what has saved my life along with salt/c. The cost is nominal. Parasites and worms play a MAJOR role in lyme disease.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I saw a Dr. Bu in West Chester about two years ago. I never went back as I thought the place was a rip off. Seems there were PICC line materials all over the exam rooms, the doctor seemed to think everything was Lyme, even things I had way before becoming ill with Lyme, and only seemed to push IV treatment inserted in his office. But the big thing that floored me was that when I called to make an appointment about complications from Lyme disease, his office said he did not accept any insurance, yet while in his office, my husband and I heard the receptionist accept insurance from a patient there for a sprained wrist or something (same type insurance I had). Actually he accepts insurance for anything but a patient suspected of sufferring from Lyme. This made it appear to me that he is preying on desperate Lyme patients. Also his office was in such disarray that I don't know how he could ever find a patients medical records in a timely fashion. As far as I am concerned my appointment with him was a big waste of $350 dollars. I went on to see DR F in NY who suggested my PCP put me back on oral antibiotics for several months. While on them I felt pretty good for awhile, but now that I am off them again for some time I think I am having relapsing problems and am again seeking retreatment or another explaination for why I don't feel particularly well again.
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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Thanks for the encouragement. I believe it is possible I could be cured with oral antibiotics or at least my symptoms would be more manageable while on them and my quality of life more back to normal. Maybe I just haven't taken the right one yet, or combination, or just haven't stayed on them long enough. I know I seem to do better while on them. Heck some things even went away completely after abx retreatment. I just need to find the doctor willing to try who also has knowledge to decide what course of abx to recommend. This is easier said than done. I am hanging in there though.
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I live 25 minutes from Philadelphia and I tried a lot of docs in this are. I ended up with Dr. F who was a super, super nice guy and tried his best and said he has had luck getting people well. I only gave him 3 months chance on his Diflucan protocol but wish I had given it longer. He is a super smart guy. I also know there is a Dr. M. who is again super nice and will try his best but don't know his track record. I ended up going out of state after talking to TF.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Gael - I will look into your suggestions, thanks.
Lymetutu- I had heard about this before (from another post maybe?). I read up on it this weekend. thanks to you too.
Chopper - I know how you feel! There is A LOT to overlook going to his office. He does seem to have many patients on IV therapy. Actually, it was me that request to go on IV. I had taken abx orally for quite some time and he had me on Alinia (an anti-malarial) for six months.
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I ran out of money for treatment. I started looking into herbs. The Cowden protocol was OK. Not a cure but something to take while trying to figure out what to do. Nutramedix has a program where you may be able to get the herbs for free for 6 months to a year.
You can also look into Buhner's book & try some of those herbs. I'm still ill but there are alot of herbs that I haven't tried, yet. I'm not exactly sure what I'm treating. It's babesia for me at this point. I've read that babesia doesn't always have typical symptoms.
Who knows...? There may be more things we are infected with that they just don't even know about at this time.
I've been focusing on artemesia. It's strong stuff & I'm feeling pretty ill with some kind of herx. I also take pain meds to get through the day when I'm pretty ill.
I've been dealing with this for 15 years. I don't know if I'm going to find a cure but what can you do? Life goes on... Seems like you given the drugs a fair try. You can take a break & go back to them some time in the future.
After a certain point, I don't see that taking abx without end is going to be a cure. This is just my point of view. I'm not convinced that they work (for me anyway) & we don't really have enough studies about it unless I've missed something.
I haven't tried every abx in the world but we just don't know. It's all a gamble. None of them that I tried made me feel better.
Give it a rest. Regroup. Try some herbs in the meantime & see what you can figure out for your next phase of treatment... Just a suggestion.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
richedie - sorry, I missed your post earlier
I had heard of Dr. F and that he only treats with Diflucan. That felt very narrow for me.
Dr. M spoke at the Chester County Support group and I found him very impressive. Have considered going to see him but like you, I don't know his track record.
How have you been feeling? At one point, you seemed to have hit a really low place. Have things turned for you?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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