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LDN prescriber in Philadelphia?

Dear all,

I'm new to this forum, but not new to Crohn's--dx'ed many years ago. Greetings to all of you!

I wonder if there's anyone here who can recommend to me a doctor in the Philadelphia area who prescribes LDN. I saw my own GI doc today and he refuses to prescribe it before more studies have been completed, but does not discourage me from finding another source if I am interested. I have been on Remicade, Cimzia, and Humira already and am really hoping to try LDN before graduating to methotrexate... especially because I have developed chronic fatigue in addition to (or as a result of) my Crohn's/treatments, and it seems there is some hope that LDN could help with that.

If you know of a doc, please PM me or post here.

All best,
Emily
 
Thanks to both of you for the responses!

Incidentally, in case it is interesting to anyone, the GI doc I currently see is one of the top Crohn's specialists in the country. This was an incredible boon to me when I first started seeing him, and he put me on Remicade, which he helped to develop. Now that Remicade, Cimzia, and Humira have failed me, however, I'm learning the drawbacks to having such a recognized doctor: namely, that he can't do anything that would risk his reputation. When I asked him today about LDN, he knew everything about it -- turns out he was on the editorial board for the journal in which Dr. Smith's study was published, and he actually recommended that the paper be rejected from the journal on the basis that the conclusions weren't properly documented. However, he didn't tell me anything that actually discouraged me from pursuing the LDN... it just made me aware that a person in his position has to be completely beholden to Science and strict adherence to its rules--even if a less-documented drug could do his patients a lot of good. (Of course, I have yet to see if LDN can do me any good--but I'm hopeful :smile: )
 
As you have pointed out so well, many interests other than the patients, are reflected in the treatment that any particular doctor will use.

I am sure the doctors image would be a bit tarnished if someone printed the following line in a publication. "Remicade founder recommends Low Dose Naltrexone to patients."

The only way to know if any treatment works is to try it. LDN is a very low risk treatment, and if it does not work, you are no worse off than using any other treatment that does not work.

Good Luck, and when you start using LDN, please give us some feed back, good or bad, on how it is working, or is not working.

Dan
 
Another source of Doctors that use LDN is a pharmacy. I am not sure if they give out this information routinely or not, but I have heard of others that have located Doctors by asking a Pharmacist what Doctors send in prescriptions for LDN.

It can't hurt to ask.

Since you seem to be already developing another autoimmune condition, I think LDN is an excellent choice.

You also may want to look up the XMRV virus and its possible connection to CFS.

http://www.wpinstitute.org/xmrv/xmrv_qa.html


http://chronicfatigue.about.com/b/20...very-means.htm

Also the thread I started on the XMRV retrovirus. It is a bit confusing as I experiment with alternative treatments and potential pathogens as it may, or may not pertain to Crohn's Disease. It is a work in progress, and I do not pretend to have all of the answers to this virus, but what I have learned or have experienced, is pretty much contained here.

http://www.crohnsforum.com/showthread.php?t=7634&highlight=XMRV

It is interesting to me that you have developed both diseases, at the same time, from the viral point of view.

Dan
 
Thanks for the welcomes, Jennjenn and Shazamataz!! It's great to find such nice people here after my years of avoiding support groups, etc.

Dan--thanks for all the suggestions--I am definitely following up on them. I will probably end up driving out to Hershey, which, luckily, is possible for me (though more expensive, given that I don't think I have out-of-network health benefits). Meanwhile I'll also inquire on the LDN yahoo group.

As for Chronic Fatigue Syndrome--I don't know for sure if I actually have CFS in addition to the Crohn's, but it is certainly a possibility. When I had my last large-scale Crohn's flare in 2007, I simply never recovered completely; the bowel symptoms stopped, but I still felt just as ill as I do when I'm flaring. To my great dismay, this state has continued ever since, with brief periods of slight improvement and some more minor Crohn's flares thrown in on occasion. I have seen countless doctors to see if there is some other cause and had absolutely every system checked (I even had a whole unnecessary sinus surgery to see if sinusitis was behind it all!), but no one has given me a real diagnosis. I saw one doc purporting to be a 'chronic fatigue specialist,' but he did not diagnose me with CFS because I already have Crohn's, and he thought it more likely that my woes are caused by the Crohn's on some level.
So, my thoughts as to what is wrong with me are that it is:
1) Just the Crohn's, presenting with uncontrollable fatigue even when the bowel's okay,
2) An unusual side effect of immunosuppressant drugs, which I've been on steadily for almost 6 years (possibly candida, if this is real)
OR
3) Actual Chronic Fatigue Syndrome.

In any case, I agree that LDN seems the best thing to try at this point. I need to take my life back somehow!

I'm very interested in the research you've done into XMRV, Dan, and will take some time to look at it all.
 

Kev

Senior Member
Hi Olive Branch Welcome to the forum. There is a website.. lowdosenaltrexone.com (I think, I'm at a friends computer and don't have it at hand to confirm).. Basically, its the LDN equiv to the crohns forum, but you won't find it as friendly.. least I didn't when I went there. But they do keep a list of drs who prescribe it (even via call in visits, you fill out info via fax, and a dr will teleconference visit, and then prescribe.. if the price is right)

Getting a prescription is the 1st step... then you need a pharmacy to compound it (apparently is has to be compounded under a hood device, and not many are equipped to do so)..
It isn't a magic pill, it only resets the improper immune response, and SLOWLY allows your body to right itself. it won't cure any related issues, and there is a risk that your status will decline sharply before it turns around for you. And, as you've experienced, it can jeopardize your relatiionship with your 'traditional' dr.

But, if it works... oh, BABY!

Least, that's the way I think about it. It changed my life like you wouldn't believe.. Over 2 years, and going strong... Tell that to your current GI
 
Hi Kev,
Thanks for your input! I've looked a bit at how you've documented your experiences with LDN, and it gives me hope. I certainly don't expect an overnight miracle--when you've been sick for almost 3 years, you know that's not possible. But I do plan to give it a good shot. It's fantastic that you've had such benefit from it--let's hope that continues for many years!

It looks like I'm going to be trying to get an appointment with Dr. Smith's associate in Hershey (Dr. Smith herself is on sabbatical at the moment, but she wrote back to us personally within 24 hours of our email!) some time in the next few weeks. This will cost me more money, but my husband and I will have the peace of mind of knowing that I have a doc who understands LDN (as much as anyone does at this point). I'll keep you all updated as to what ultimately happens, and pass along any points of interest I learn in the process.

:)
 
I am happy to hear you are still going strong Kev.

I assumed that you were doing good since people that are well, do not usually post much. I also have no symptoms at this time, and I am pretty sure I can deal with any I may get in the future, with one method or another.

Colonoscopy scheduled for early next year. That will tell the whole story. I will post my results. I expect no sign of Crohn's, but we will see if that is the case.

Dan
 

Kev

Senior Member
Thanks Dan... My crohns is fine, my work schedule is crazy.... working literally 12 - 14 hrs each day for the last 7 weeks... looks like it may be turning the corner now tho.

Emily, my disease was pretty severe when I started LDN.. I documented my trip thru the initial treatment on LDN... Long story short, it worked for me, BUT I still have the occasional flare IF other illnesses (like bad cold or flu) overwhelm my immune system. But those I can live with, and all it takes is my $1 pill each night. (my health plan won't cover the cost, but that is pretty small potatoes).
I've got no side effects, no long term associated health risks anyone is aware of, AND my own history tends to make me believe that it will keep working like that.
 
PHilly Doc

Hi Emily:

I am also fairly new to this forum and also live in Philly! I have a doctor that will prescribe LDN that I can recommend to you. However, he is a psychiatrist, though also trained in functional medicine and does nutritional counseling in addition to his pyschotherapy work. I went to him for a script for meds to treat my anxiety/depression symptoms that I get with my flares. So be aware he is not a GI doc, though I am happy he isn't. He understands and is open to alternative treatments much more than my current doc. Unfortunately, he does not take insurance and you will have to pay out of pocket. But he will give you a script for 6 months so you don't have to see him that often. His name is: Dr. Morley, phone# is 215-233-3022. His office is in Chestnut Hill.

I am curious if we go to the same GI office. Is your doctor at Pennsylvania Hospital GI Associates? If so, my GI doc there also refused to write me a script.

I hope it works out for you. I have been on LDN for 6 weeks now and have been experiencing the classic yo-yo effect. I got better, then experienced a horrible flare and am now starting to get better again. I hope I continue heading in that directions. Let me know if you have any questions.

Chris
 
Hi Chris,

Thanks for writing, and yay for Philly! I love this city and really hope that it won't be too long before I can be an active citizen again :)

Thanks for the rec of the psych -- really good to know. I also have received a list of PA doctors who prescribe LDN from a member of the yahoo LDN group; let me know if you'd like me to email it to you. You might find someone on there who is close enough (there's one in Quakertown, one in Lansdale) who actually does take insurance, if you're interested.

No, my GI doc is at the Hosp. of U. Penn, not at Pennsylvania, so it's not the same guy--however, Pennsylvania is in the same system as HUP, so I'm sure the two docs know one another and have some of the same views.

It's really useful to hear about your experiences with the LDN--I really hope the yoyo will stop soon and you will feel real and lasting healing!
 
Hi Emily:

Yes, please do email me the list of doctors that prescribe. I would like to go to doctor that accepts insurance if I could. Given how much $ I spend on this disease, I would love to have some cost savings somewhere! My email is: [email protected]. I hope you get well soon!

Chris
 
Hi and welcome to the forum, I am living about an hour outside of philly in MD I have been looking for a crohns specialist in the philly area. I am thoroughly fed up with my gi doc. He doesn't seem to really know much about crohns and gets annoyed with me when i have to go to emergency room because of pain. Could you give me the name of your specialist I would greatly appreciate it.
 
Hi Dusty,
You'd be in good hands at the Hospital of the University of Pennsylvania (HUP), where they are very knowledgeable. My doc is Dr. Gary Lichtenstein, who is the head of the department and very well known; his partner, Dr. Faten Aberra is also very good. They certainly have a good understanding of the nature of the disease! It might be hard to get an appointment with them, but if you are in a flare, they may be able to squeeze you in emergently.
You should know, though, that they do not prescribe LDN, so if you want that, you'll need to go elsewhere. But they are very up on all the other options, including clinical trials conducted at the university.
 
Wow! This is the first I have heard of LDN and I have just read all the links you kindly put on here Dan. I have so far failed on Remicade and Cimzia is not working for me and I am about to go back to my GI and say "Now what?" I live near Memphis TN though - I can barely function with the pain and diarrhea and horrible fatigue which is relatively new and I am wondering if it is CFS or just the Crohns or just having it so long -Anyway, just gives me some hope that there might exist a drug that might help if these immunosuppresant drugs don't...thanks for the info!
 
I suspect that some of these autoimmune diseases have a common root cause, since I have three different ones in my immediate family.

It would not surprise me to find out that a common pathogen is the cause of some of them.

LDN is a very good, but not perfect treatment. It can allow your immune system to operate more normally, taking care of many of these problems and preventing new ones from developing.

I am still experimenting with disabling the XMRV virus, with a few family members that have either verified auto immune diseases, or symptoms of one.

If I come to any semi-solid conclusions, I will post them. I have treated my son twice now, when he comes home. It will take some time to tell if his symptoms recede.

Dan
 
No, I would have to take it for a long time, and even then, I am not sure it would work.

I do not like taking it for long periods of time. I only use it when I have to for Crohn's or when I got food poisoning, those kinds of situations.

I am using calculated DNA frequencies using a Rife device. Not conventional treatment by any means, but I have used this method for several years, and it works particularly well for viruses. Viruses seem to be biologically tough to destroy, but physically weak. The frequencies disrupt them enough to either make them inactive or outright destroys them. I am not sure which.

All I know for sure is symptoms of a virus are easily eliminated using this method. Bacterial infections are usually harder to eliminate, depending on the bacterium involved.

The bonds that hold viral genetic material together are weaker than in higher life forms. This makes them vulnerable. Or so goes the theory.

Dan
 
To all of you who followed this thread before--I have now written an update to my story in the "treatment" section of the forum, in case you're interested in how things have unfolded. Many thanks, though, to all who gave me advice on finding LDN, even though I will not at this point get a chance to try it.
 
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