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