Experiences with Dr. A.C. in Southeastern PA?

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Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 2/5/2009 3:53 PM (GMT -6)   
Hi everyone,
 
I placed my name on her waiting list about 4 months ago and finally received a call.  I have read and been told that she is very very good at being a LLMD.   The flip side of that is she is also much more expensive.  Does anyone have info they could share....thanks! 

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/2/2009 1:32 PM (GMT -6)   

Hi!  I'm new on the site - I don't have Lyme but I've joined many sites because my sister, Chris, is desperately ill with Lyme - we believe for more than 15 years.  Her first Lyme doctor was Dr. A.C.  back in 2004.  She was treated very aggressively in the beginning and did improve vastly.  However, once she cut back on antibiotics, she relapsed hard!  In the beginning, Dr. C was very kind, compassionate, and uplifting.  However, Dr. C seems to have changed over the years - much less patient, grumpy, short with patients, and always in a hurry!  Guess I can't blame her - being around sick people 5 days a week could change anyone!  She is very expensive - this disease, and associated treatments, has almost placed my sister and her family in financial ruin!  Everything Dr. C prescribes in the "tincture" category is very expensive and insurance (if you have it) will not cover any part!  Dr. C is turning very hard towards tinctures like the Cowden Protocol (which did absolutely nothing for my sister), etc.  Some times I even wondered if she became almost angry with my sister because she couldn't keep her well!  I don't know - but one thing I do know, is we are taking a break from Dr. C - not treatment - her primary physician is willing to continue prescribing antibiotics, etc., until we make up our minds about re-seeing a Lyme specialist.  We had to travel out of state to see Dr. C and in the beginning it was quite frequent, especially when my sister had a PICC in her arm.  Ironcially, that period (10 months) was the best she felt since this nightmare began in 1994!

So, good luck with Dr. C - just be prepared in advance that she doesn't have the best "bed side manner", which can be tough to handle when you feel so sick, scared, and vulnerable to begin with!!  Before my sister and I would walk into her office each month I'd say, "put your hard hat on"!  Just a joke and it didn't really help much because most times when we left, my sister and I cried because our feelings were so hurt.  Oh well, maybe that's part of this darn disease too!

Take care and I pray God helps you find your answer - we're still looking!


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 3/2/2009 1:54 PM (GMT -6)   
I was not surprised by shawdowmom's comments.

I will not go to see Dr. C - she is over-priced, I did not care for her presentations at meetings in my area. I did try at one time to get an appointment but I found her receptionist unfriendly. I live 20 minutes from her office but drive 3 hours to see another LLMD in New Jersey. I am so glad that I made that choice.

jc27
Regular Member


Date Joined Sep 2007
Total Posts : 176
   Posted 3/2/2009 7:45 PM (GMT -6)   
you could always try Dr. M, from Norristown, PA.

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 3/2/2009 8:36 PM (GMT -6)   
Thanks for the info everyone. I had my first appointment and honestly, I was told about her "rough" attitude by another doctor. My first appointment went differently then what I was told and what is being indicated in this thread. Time will tell for sure and I certainly don't discount what I'm being told here. I guess I'll have to wait and see.

jc27, can you email with more info on Dr. M. Thanks!

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 3/2/2009 11:45 PM (GMT -6)   

Dear Chris,

I am so glad that your appointment went well.  I have spoken with hundreds of patient families across nation who have seen this doctor; most all feedback is positive.  I have worked with her staff as a liaison for many patients and have not had the negative feedback.  I am sorry for the dear ones who were hurt along the way.  Who can know why unless there can be a personal discussion that brings answers and healing.  Sometimes it can be so difficult.  The patient is sick; the doctor is treating b/c he/she understands deeply, most from personal experience or through their own children's suffering.  They put in overwhelming hours for training and then once equipped become the latest hot pick with patient lines to the physician that are endless as are the needs.  I can only imagine reaching places of sheer exhaustion.  But, it is conflicting when someone leaves an appointment in tears.   

It just reminds me again and again of how great the need is for more and more wonderful physicians to enter into the training program so that the weight of the ongoing necessary and emergent demand for care can be met more fairly for everyone's sake, so that patients do receive the care they deserve and physicians are not driven to exhaustion.

Shadowmom.  My heart goes to you mainly b/c the disease itself is so very hurtful.  I wish you had not had the experience in the end but I believe you were fair in the way you empathized with the potential reality of it all.  This is why some of our LLMDs are narrowing their hours and numbers of patients.  Burn out is so very possible; yet there is a sincere desire to help others and a reality that there are so few to do the job. 

I hope you find answers for your precious sister, so that she can continue to move forward with her healing.  We understand the long suffering. 

God bless you!  Sojourner


shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/3/2009 12:33 PM (GMT -6)   

Dear Soujourner,

I couldn't agree more with the "burn out" description.  I'm very sure it works both ways - for the doctors as well as the patients!  I did not mean to infer that Dr. C was not a dedicated lyme physician.  I know she is!   Even though my sister has actually gotten worse over the past 4 1/2 years, tragically for us that may just be the course of her disease.  Who knows, maybe the lyme triggered full out MS and that's the disease we should be going after!  In any event, thank you for your kind words of empathy - I freely admit that both my sister and I are at the end of our ropes - of course, my sister more than me because she is suffering the physical devastation, while my deep pain is coming from watching some one I love continue to free fall - I feel so desperate and helpless.  I think all things combined make us much more sensitive and over reactive!  When you feel like giving up and just letting the chips fall where they may, sometimes you just need some one to wrap you in their arms and say "hold on" or "I understand" or anything soothing to give you the encouragement needed to keep going!  In the beginning, that's just what Dr. C used to do - however it's been a very long time since she expressed that type of sympathy to my sister or I.  Still, I do not hold that against her, because I know she cares about her patients - maybe it's just time for us to take a break and regroup!

The part about the financial burden is very real, and that just adds to the whole nightmare!  I read others stories and my heart breaks for them too!  How tragic that some are put in the position of having to choose between their health and their finances!  Some times I just want to scream for everyone having to deal with this monster!  In my "sane" moments, however, I come back to reality and realize that the financial aspect isn't the fault of the treating physicians.  They must fix their fees based on what is necessary to keep practicing, and earn a living at the same time.  You hit the nail on the head when you said what we really need is more doctors to become trained to treat this disease and the host of conditions it can trigger.  When I lay my head down at night, that's one of the repetitive prayers I say "Please God, let the medical community wake up and take this disease seriously before too many more lose their quality of life, or their life altogether"! 

I just posted a blog on Oprah's website (for the 10th time) begging her to do a show on Lyme.  I keep hoping that if we could shine a "laser beam" on this devastating disease, maybe desperately needed changes could be effected.  Maybe there would be more motivation for politicians and national leaders to allocate funds for research and development of treatment protocols.  Maybe insurance companies could be forced to cover the costs of treating Lyme - for the long term! 

Well, enough day dreaming!  I just wanted to thank you for your kind words.  I'm open for any suggestions or advise from the true soldiers in this battle - I don't know where to turn next.  I only know I cannot stop until I find something, some treatment or doctor, that can give my sister her life back. 

God bless all!       Shadowmom


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 3/3/2009 1:08 PM (GMT -6)   

Shadowmom,

Do you and your sister both use the herbal remedies that Dr. C prescribes?  I'm not much for this type of treatment, but I left her office feeling like she had a command of this type of treatment.  Time will tell but I'm guardedly optimistic.

Also, if your sister used IV Rocephin with a lot of benefit and it has been some time since she had seen any improvement (rather a lot of decline if I understand your posts,) what explanation has Dr. C offered as to why she won't try another round of IV Rocephin...or any other ABX for that matter?

Thanks so much for sharing!

 

 


shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/3/2009 1:55 PM (GMT -6)   

Dear Chris,

Hello!  I don't take any of the "tinctures" because I don't have lyme, just my sister (her name's Chris also!).  I suppose I've taken on the roll of being my sister's "health coach" because she's too sick to do this herself.  Anyway, yes, she has taken all of the herbal protocols prescribed by Dr. C.  Sadly, none worked.  I do not want to discourage you, because I've found many messages in the Healing Well forums that indicate people have attained a degree of "wellness" with the various herbal remedies.  Maybe it is just simply that my sister was so infected with lyme that nothing but the "big guns" will work.  We cannot restart the IV Rocephin because of the cost.  By the grace of God, the first 10 month round was covered by her health insurance, but they will not give clearance for a second round.  Dr. C. explained that the out of pocket costs for the IV is somewhere around $5,000 a month (give or take).  I think this estimate may include the weekly home nursing that is required to check that the PICC line is sterile and not causing a blood infection.  My sister had no problems with the IV (and many, many people have been hospitalized due to serious complications from the catheter), except for the life altering committment to infusing 6 days a week for 2+ hours a day.  Very tough to do when you're raising children, etc.  The day Dr. C removed the PICC from my sister's arm, we held hands and skipped out of her office!  I know that sounds juvenile for two adult women, but we were deleriously happy!  Tragically, it's been all down hill since that time.  She has been on mega amounts of oral antibiotics since then - on-again and off-again as her system would tolerate.  Her remaining symptoms, down to 3 from 40!, are the most debilitating.  Her legs are so weak she can barely walk, and the general fatigue is so bad that it is a struggle for her to get out of bed most days.  One additional symptom that cropped up last fall, was serious knee pain and swelling in that joint.  It got so bad that she finally agreed to see an Ortho Dr. - who said it was "not due to lymes".  That was our first indication that he had no knowledge of lyme disease - it's not pluralized!! 

Anyway, an accupuncturist and a physical therapist who specializes in lymph drainage helped her alot with the knee problem, however, the leg weakness and fatigue are agonizing.  I'm really beginning to question our decision in 2004 to pursue lyme and not MS?  That fact alone scares me so badly that I find myself panicking over what direction to go in next.  Because of finances, and frankly, because she has deteriorated so badly, we are taking a break from Dr. C.  Her primary doctor is willing to continue treating her with Biaxcin and Plaquenil - along with many other vitamins and herbal supplements like CoQ10, Mag., B-12., Cordymax for fatigue, etc.  Since she just started some of these supplements, I really can't judge whether they've helped - she is also taking LDN, low dose naltrexone which supports the immune system and can dramatically help to increase the CD-57 counts.  Low CD-57 numbers, according to Dr. Burrascano, are indicative of "active" lyme. 

The only thing I do know in this whole nightmare is that she isn't any better - she's worse than she was when she first started treatment in 2004.  I truly don't now where to turn, so I'm very open for any suggestions or advice.

My best wishes for a speedy recovery for you!  God bless!


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 3/3/2009 3:19 PM (GMT -6)   

Shadowmom,

Hang in there...your sister too!  I just want to point out a few positive things:

1.  Your sister is now down to 3 symptoms from 40.  That is tremendous!!!!  I know you say she is worse then before, but THREE from FORTY!!  In my situation, I would consider that a miracle. 

2. Don't fret over your pursuit of Lyme vs MS.  If she got better on IV Rocephin, then chances are Lyme was playing some roll.  It leads me back to the 3 symptoms from 40.  Do you think if you pursued MS that she would be down to 3 symptoms now?? 

3.  You may want to check out the cost of IV treatment for yourself.  I have looked into it as I expect my insurance company to cut me off if I go that route and I have read Rocephin can be purchases for $700 - $800 a month now.  I find it hard to believe that a nurse visit once a week for cleaning and the IV cleaning agents would run $4200 a month.  Perhaps it was different four years ago, but I have read people are continuing on with Rocephin on their own for less then $2000 a month. 

Finally, have you followed up with a MS doctor?  If you are concerned, there should be tests that would help give that diagnosis some validity.

Thanks for sharing, and I wish you and your sister the best!!

 

 


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 3/3/2009 3:56 PM (GMT -6)   
Hi Shadowmom,
You mentioned that you were told that the cost of IV Rocephin was about $5,000 a month.  When insurance would not pay for my son's IV Rocephin after 30 days, we found a company called Comunity Surgical in Tom's River, NJ who had 2 gr. vials of powdered Rocephin along with all the supplies for $600.00 a month.  Also Sam's Club was another place that had it quite cheaply, but you had to get the supplies elsewhere.  With Community Surgical, the $600. covered everything you would need.  Since we couldn't afford a home care nurse, my son's PCP changed the dressing and drew blood every week and it was covered by insurance. 
 
I hope this information helps you with the decisions that you and your sister are facing and that your sister finds healing soon.
 
Take Care,
Karen

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 3/3/2009 7:35 PM (GMT -6)   
Did Dr. C indicate to you and your sister that she would be unable to help any further - that she had run out of treatment ideas? I do not mean to be disrespectful by asking such a direct question because it sounds as if you and Chris are not sure which direction to go in. It is certainly true that many of the doctors treating lyme disease are feeling overwhelmed. Another thought I had, were there any co-infections involved with Chris? These may have made her case more complicated and difficult to treat. Does Chris have any insurance at all?

I am going to go out on a limb here and suggest that if money to treat the patient is scarce then buying tinctures and herbs is not the direction to go in. They may be a good adjunct to antibiotics, but if Chris was short on funds and had late stage lyme and was deteriorating after removing the PICC line, then I believe even more agressive and long term treatment was required - preferably IV and more than one IV drug.

IV Rocephin is much cheaper than $5000 per month and the information given in previous posts is something you might want to pursue.

If Chris does have insurance she might want to consider seeing a neurologist and do a work-up for neurological disorders. It may help you both to decide what treatment direction to go in.

It is late and I am tired and should be a little more sensitive in my post and I hope you will forgive me. I hope that you both will find some answers and help soon.
bcaring

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 3/4/2009 12:47 AM (GMT -6)   
Dear Shadowmom,

If you would like to talk to brainstorm some ideas, feel free to float an email my way. Click on the envelope below my name on the left. Your sister's acupuncturist and the lymphatic drainage are two major components of our daughter's physical therapies.... and to reassure you w/o knowing for sure what your sister's case may be.... Heth has Lyme. I however, was dx w/MS in the 1980's. I can share a few clinical studies with you regarding your concerns that may help guide you.

Blessings,
Sojourner

tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/4/2009 8:13 PM (GMT -6)   
Hi all,

My husband is currently a patient of Dr. A.C. I have seen her twice as well. I agree that she is very expensive and the alternative remedies she uses are very expensive as well. I have met with her 5 times so far (twice for my husband, twice for myself and once for my twin boys). The first two times she was wonderful but I did feel a little as if I wasn't given enough time for my questions. The next few times were not as good, as she was clearly in a bad mood those days. I pretty much got in an argument with her when she told me she didn't have time for my questions about one of my boys. That appointment was a big waste of time and money for me, as I spent the entire time letting her write down the symptoms, but the reason I was there was to get another opinion and specific questions answered about my boys, who are currently patients of Dr. J in CT. (I do not plan to leave him!)

Do not get me wrong, I think she is a good doctor, particularly because she appears to be pretty aggressive. You do need to be ready for her cranky days though.

I am treating myself at the moment, as my symptoms are very mild. My husband is still seeing her and we plan to stick with her, so long as she listens to our feedback and cooperates! This process needs to be a cooperative effort between patient and doctor, in my opinion. I have been right on every diagnosis about my husband and children, because I am here in the trenches observing everything, and because I spend all of my free time researching!

Dr. C has my husband on an aggressive protocol, which is helping. I like that she appears to follow Burrescano, which is important to me. I just plan to let my husband ask all of my questions so that I don't get into a fight with her again!

tickbattler

tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/4/2009 8:20 PM (GMT -6)   
jc27- (or anyone else that can help),

Are you talking about Dr. M. M. in Jeffersonville, PA? I have recently learned about this doctor (heard good things) and would love to hear more! Would you mind e-mailing me at belval@comcast.net?

Thanks,

tickbattler

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 9:24 AM (GMT -6)   

Hi,

Am VERY new to this whole thing. Now that I just figured out what the "LLMD" thing is all about - let me ask this. I'm getting the sense that these llmd's are not covered by insurance or are they? I have pretty good insurance through my job, but I suspect that seeing a llmd is out of network for me. I live in Southeast PA as well - Delaware County

I just submitted my first post -"Newly diagnosed Lymes - HELP!" and am hopeful to get good info from all of you good people. I like my primary doc and I think he means well, but I'm sure he's no expert in Lymes.

I'm picking my up my script for Doxy now..... one member already replied stating that 6weeks is not long enough. Already....the adventure continues.

 

Peace


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 3/16/2009 4:02 PM (GMT -6)   
Hello Pabowhunter,

I just put your name together......many hunt our property every year.

I live in Chester County between Chadds Ford and Kennett Square. If you would like to email me I know a lot about different LLMD's in our area as well as New Jersey.

It is true that many LLMD's do not take insurance directly, however some do. Those that do not, expect you to submit your bill to your insurance company, which is fine if you happen to have a low out of network deductible. Ours is something absurd - like $35,000 so the doctor office visits are not paid for. We use are health savings account for that.

My prescription drugs have been covered as well as lab testing so I feel fortunate for the most part.

It would be wise to make an appointment with an LLMD soon because some of them take a month or more to get in for an appointment. Meanwhile, it is good that your are at least on doxy.

It is so important to see someone who knows what they are doing, especially with co-infections. If they are not treated along with the Lyme then you will most likely have a tough time getting rid of your symptoms. Speaking of your symptoms - they are all recognizable by many on this forum so you are not alone.

If someone has not posted it yet, there is a lot of information out there about Lyme disease and its co-infections. It can be overwhelming, especially if you are sick. Try to read some of it when you can.

my email is keenanb@comcast.net

Hope to hear from you.
bcaring

pabowhunter
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/16/2009 5:25 PM (GMT -6)   

Hey bcaring,
Thanks for the note. We're practically neighbors. I'll email you privately to get more info re: llmd's.

Thanks again.

rich

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