Friday, March 27, 2009

OK, this one a long time coming...Mindy...Why?

So, I've said many times that I want to save people that are going through this some headache, heartache and potentially some money. I have had a long time to think about this post. I have hesitated, because generally, I try to stay positive in my posts here, but I felt like our experience with Mindy Goodin at Creek Trail Medical Clinic in Colorado Springs, CO was worthy of a post. I wrote this post several days ago. Since then I've considered many things, but at the end of the day, my beef is justified. My questions are logical and my motivation is not coming from a place of anger. Mostly i'm mystified and confused. I'm also disappointed, and you will see why below.
I've also trusted this post, in advance, to people in the ALS community that I have met through my outspokeness about these issues and the resounding message was essentially that I "have" to post this, for the benefit of others. So know that I don't do this out of anger or personal rage, but out of hope for answers and hope for perspective, both for us and for others who may have had the same, similar or might have the same experiences.

I'll write this as an open letter in order to give her an opportunity to respond publicly. I imagine that eventually, someone will make her aware of this post. I will try to state the facts as I know them. If anyone has a great success story from their treatment from Mindy, please feel free to post it here as well. I'm asking questions that I feel need to be asked, and I feel that the public should be aware of our experience.


Dear Mindy,

We were desperate to find someone who would listen to our suspicions about Lyme disease. We had tested positive for a few "titers" and a few co-infections for the disease. As it turns out, these labs are famous for positive results. Lyme disease sucks worse than most diseases, but it represents hope, believe it or not, for people that have been diagnosed with ALS. You gave us hope. You "believed" that H had Lyme disease and some co-infections and you were willing to treat it.

You had worked with Dr. Martz, who "cured" himself of ALS by treating Lyme disease. He retired and you opened your clinic. You are a PA, who practices your medicine under an MD, who we never met and who probably rarely comes into the office. He's doing "research" on this, right? What's his name? Dr. Harvey? Never met him. Do PA's generally get $700 for an initial session and $225 an hour? I don't know. Seems a bit pricey to me. My work generally saves companies millions of dollars and I bill my services directly at $200/hr. But then again, what price can you put on "potentially" saving someone's life?

Well, H went under minor surgery at your recommendation to get a Groshong Catheter so she we could "easily" administer IV antibiotics here at our home. We bought literally thousands of dollars of antibiotics and other medications from the pharmacy you recommended that is right next door to your office because "you are comfortable with them and they know how you want the meds prepared." We took them "religiously" for about 6 months.

We were stuck in our house for hours every day waiting for the drips to go into H's veins. When we started, H could walk a bit. When we finished she couldn't. Open meds required refrigeration, sanitary conditions were paramount. We adopted out (gave up) our cats. We could have gone on trips. I feel like we wasted a whole summer, and being honest, I'm angry about that because time is our only valuable commodity now.

Why did your main practicing nurse quit the week after she trained us on how to service the IV's? She was really nice, I liked her. She's really the reason that I advocated us going on your plan in the first place. It's not like you came across as the warmest person in the world at our first meeting. She was the one we bought in to, not you. So, why did she leave? I was wondering about that. Probably a good reason, but I'm curious. Maybe she'll find this and post. Penny, right?

All the time, H is in decline. Who knows..maybe it's slower than it would have been had she not been on the antibiotics. Who knows really? Isn't that convenient for you?

The emotional toll is enormous, so she goes on anti-depressants, two of them to be exact. Both of the labels say "do not discontinue this medication without Dr. supervision." or something close to that. You are perscribing these drugs. They are nothing to play around with, right?

A couple of months later, H has a breakdown and we come see you for an emergency consultation which you make time for, on a non-office hours day. Practically an intervention. Doses of drugs are increased. Tolerance is assessed. Tears are shed. I lay my heart out on the table and you pick it up and show it to H as a reason why she should not take herself out of the game. Figuratively of course, but this was the essence of the meeting. I've been through some serious shit in my life, this was about as serious as it gets.

Did you use me to keep a paying patient? (That's how I feel today)

About a month later we express some question regarding a "pulsing" strategy that some recommend with regard to long term antibiotic therapy to treat chronic lyme or other co-infections. H is on, I think 5 of them altogether. 3 of them IV and most days 3 hours spaced out over the day. Side effects can be adding up...we don't know really, but H is not feeling good, and definitely not feeling better.

We call to talk about this pulsing idea, and you tell H "You need to pick a pew and sit in it." Apparently you don't like anyone else's ideas about treatments. hmmm..pick a pew, like in a church? Are you God? We take a seat back in your pew for a while...

Later, H calls to tell you that we want to take a break from the antibiotics. It is a gut wrenching decision, but it is hard to do this every day, it is expensive and it does not seem to be working. Your assistant takes the call. You never call us back. Not once. To be clear, H didn't say quit, she didn't say we didn't believe in what you were doing and perscribing, she said "break." If you were not clear on that point, you would have been clear on that if you had bothered to call.

The next day or two an antidepressant is running out and we call to re-fill. You have already instructed the pharmacy to discontinue ALL prescriptions for H. ALL of them.

You know how depressed H is. You know that stopping anti depressant medication immediately can cause massive harm and suicidal tendencies. You did it anyhow. Were you mad at us? Were you disappointed? You already knew she was on the edge when she was ON the medication. What did you think would happen? After six months and all we went through with you did you care at all?

I am open to your response to any and all of the above questions. You probably have my number in your files. If you don't then that is also negligent.

You deal in human life every day. We deal with it in the context of our family. I don't want to be another number to you or a + sign in your ledger without regard to our reality. This is what disturbs me. You never called. It seems like you never cared, or really had any hope. I am very well aware of this, acutely aware of it, one might say. I don't fear the truth. In fact, I fear nothing.

Here's an example of justice:
http://blog.nj.com/ledgerupdates/2007/09/nj_doctor_draws_prison_term_in.html

57 months will give that person some time to think about it.

This is your chance, before I get really mad.


Thank you,

Bill

30 comments:

  1. Bill,
    As you know my dad was a patient of Dr. Martz. Here is some information you perhaps did not know. Regarding Penny...she was Dr. Martz nurse/office manager. She was very good to talk to and very sweet...until Dr. Martz decided to close the office and at that time when all of his patients were desperate to find a replacement Dr., her attitude was pretty much "oh well, we are closing down, why should we care?" After they closed, I got a letter from Martz's wife with a bill for a phone consult with Penny when I called to seek our records and info on a new Dr.!

    Regarding Mindy, even though she had access to all of Dad's records, she refused to treat him based on those records, instead she insisted we come to the office, not an easy feat when the patient is on a vent and 3 hours away. Teri in her office actually told me that they cannot charge as much for a phone consultas an office visit. And by the way, the initial consultation with Martz was $500.00 and $100.00 for followups. Mindy is charging more than the Dr. did! She is definately running a money machine!

    The Dr. you refer to is Dr. William Harvey and he is the Dr. that was said to "cure" Martz, he was not self-cured.

    Thanks for that article, I hadn't seen that and I am glad you posted it! Maybe all the Mindys out there will get the message!

    You have my number, call if you need more information about our experiences with that clinic.

    Anji

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  2. Dude... I'm angry just reading it. Very anxious to see if your post elicits a response from Mindy. Keep all your options open.

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  3. My primary physician just recommended that I try to get in with her for treatment of Chronic Lyme as I have been diagnosed with Fibromyalgia recently and he suspects it may really be Lyme. Any suggestions for someone else to see in Colorado Springs? I hope your wife is doing better and I'm so sorry for your horrible experience.
    -Jill

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  4. Jill,
    We live in the Denver area, and were seeing Mindy from here so we really don't know anyone in CO Springs. Also, we were "treating" ALS, not Fibro, so I can't really speak to that in any informed way. I'm sorry for your diagnosis, I have heard that that is a painful condition. I wish I could help you more. I have found www.patientslikeme.com and www.disaboom.com to have some good community resources. Best regards, Bill

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  5. Bill,

    We have an appointment- or should I say 'had' an appointment scheduled with Mindy- until I read about your experiences. Thank you for sharing your story. I am so sorry that you have gone through so much, though.

    We were referred to Mindy as we live in Colorado Springs and one of my children has one of the Lyme disease 'bands' (#41). At this point we are unsure, like Jill, as to where to go. Again, thank you for your letter.

    Martha

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  6. Does anyone know where we can just get the blood test done through the clinic in California? My husband was just diagnosed with ALS but the question is does he have Lymes? With this post, we now don't really want to go see her but we would like to get the blood test done. Any help there?

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  7. Bill,
    My father, who had been diagnosed at Mayo with ALS, chose to go to Dr. Martz's clinic. When you have even the ghost of a chance that it's NOT really ALS, you are willing to try anything, yes? It sounds to me that you and "H" were in the same position our family found themselves in a few years ago.

    True, the clinic was expensive, but Dad was very pleased with Dr Martz and his staff, and by that point, there weren't very many things in life that DID please him.

    My heart truly breaks for you and your wife. I am deeply sorry that the treatment does not seem to have worked for her. To me, that confirms the sobering diagnosis of ALS, not Lyme. In that, I share your sorrow.

    However, it appears to me that you had to have known that you (as our family did) took a sort of last ditch chance with the antibiotic treatment. The controversy swirling about the difficulty of diagnosing Lyme and whether or not the antibiotic treatment is really efficacious is has been well-documented in the media and the medical community. Sadly, that chance did not pay off--for either of our families. But it was a stone that we both, it seems, could not leave unturned.

    I agree that your decision to take a break from the treatment was handled very badly by Mindy and Dr. Harvey's office. You should have had a very different reception, and that should certainly be addressed by their office. However, I also remember Dr. Martz making it clear to my father that he had to be either on board with this all the way or nothing because Martz believed that was the only way it would work. Perhaps Mindy, et al, were concerned that you were leaving off at a critical point. I don't know.

    But I do know this: I am now stricken with sypmtoms that read like a textbook for Lyme. After a lengthy hospital stay, visits to the emergency room, and having developed the ability to totally mystify my doctors as to what's wrong with me, I am personally now at wit's end. My primary care physician doesn't test for Lyme and she thinks all of this is in my head, anyway. (Sound familiar??)At my last visit, she actually told my husband and me she didn't know what else to do, but she also won't refer us to anyone else.

    So we are making an appointment at Minday's clinic. We can't afford it, but we'll figure that out. This is because, despite our experience with my father, we have known people who have been treated successfully with the treatment offered at that clinc. And, it's because, as I noted at the start, when you have no hope left, you will do whatever you think can give you hope.

    I again want eo express my deepest regret that the Creek Side treatment seems not to have worked for your wife or, ultimately, my father. But there might be someone who reads this blog for whom it WILL work (maybe even me), and I think it is a shame that they might not try that last ditch effort because of what you have written here.

    Please, don't take away other people's hope.

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  8. ps please excuse me; I meant Creek Trail

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  9. This is Bill's response to Anonymous' post of July 31.

    Thanks for your kind remarks and your considered post. I feel for your loss and hope that your symptoms can get diagnosed and cured properly.

    I am not trying to take anyone's hope away. I want that to be clear.

    What I did is post and honest, factual account of our experience with Creek Trail and Mindy specifically in an open letter to her. I'm fairly sure that she is aware of it at this point, since several keywords that send the most traffic to my site are related to her or Creek Trail. Yet, I still have never heard from her.

    And yes, I feel that the way she cut H off from her medications, including some that should NEVER be cut off "cold turkey" was completely unprofessional and potentially negligent. So, sorry, but I can not recommend her services even as a last ditch effort. I would try to find someone else to treat Lyme sypmtoms that understands the disease.

    There are no winners here, unfortunately. I wish this was all different and mostly I wish someone would figure this dreadful disease out.

    If anyone would like to post a "successful" treatment from Mindy here, by all means, it is an open forum for that. So far, the only person I have ever heard cured of "an ALS diagnosis" using Dr. Martz's regimen is Dr. Martz.

    I have seen "Under Our Skin",so am very familiar with the "lyme controversy" based on that and a whole lot of my own research. I have witnessed videos on the web of people walking across a room after stem cell treatment in Mexico or Belize or somewhere. I have heard of MD's that are "persecuted" for trying to help people outside the bounds of traditional medical science and honestly at this point, I don't know whether to admire their courage or throw them in a bucket with the snake-oil salesmen of the past. I wish I knew. I bet we all wish we knew.

    For the record, I think that Mindy thinks that she can help some people. Undoubtedly, she can help people with infections of all sorts. She just couldn't help us, and she completely dumped us and prevented us from getting the meds that we needed once she knew we were not "on board" anymore and never even once followed up via phone, email or this blog. That's what pissed me off the most.

    Peace,
    B.

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  10. We also went to clinic in Colorado Springs with Bill and Heidi multiple times. We were also there when Bill went to refill the medications and H was "cut off" from refills. There should have been at least a phone call from the clinic explaining their position;however, we were all shocked never to hear from them again. Previously, there were many unanswered questions H. asked and if a response was given at all, it was...just ask at the next appointment. I could not recommend the clinic to anyone. dt

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  11. There would be NO secrets or hard to find Doctors if a cure or treatment were available for either ALS or Chronic Lyme's Disease. ANY Doctor who discovered something powerful would not be quietly doing business. It would be very well known and any Doctor who truly knew they had found the answer would be publishing their findings and raking in the money. ..."Take away people's hope?"....how about saving someone from further pain, anxiety, loss and sadness.
    There are more scams then cures unfortunately. Support the Doctors and Labs who are studying the disease.

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  12. Bill, my wife went to see Mindy a few years ago for a chronic fatigue/ achiness/ muscle weakness/ neurologic symptoms. She had already seen neuromuscular specialists in Denver who thought she had a viral illness causing her symptoms. Let me preface this further with saying that I'm an internal medicine doctor. She told my wife to take a whole bunch of different antibiotics for lyme, parasites, and who knows what. I didn't agree with it, but my wife went ahead and took them. No help at all. I talked to some specialists in infectious diseases who said it's all a scam and that nobody who really looks at the case thinks Dr. Martz actually had ALS. The problem is that scam artists like them take advantage of people who have these vague illnesses (in some cases like fibromyalgia, chronic fatigue, etc, which have symptoms which are vague and can be related to any number of things) or established illnesses like ALS where there is no cure, and essentially think it's all the one think they want it to be (and that gets them money). The way she diagnosed illnesses and the treatments she gave are completely random, unfounded, and definitely not based on ANY research (I looked!) If I practiced that way, I'd be guilty of malpractice. I completely understand hoping for a cure, as I had a friend die of ALS at 35. To anyone reading, I'd also say to put your efforts into finding respectable researchers at good institutions. Fortunately my wife stopped seeing Mindy (but not until we shelled out a lot of $) and fortunately we haven't heard from her since.

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  13. I feel your frustration and understand your reasons for thinking that your situation has been mishandled. As a fellow care-giver, I am very familiar with what you must be feeling. I have been in your shoes for a long time now. But how can someone expect a fair hearing, when they have already been judged guilty? I wouldn't respond either. It's a bit like asking the question, "Have you stopped beating your wife?"- there just isn't a response that will make your pre-determined verdict change.

    My wife has been diagnosed with MS since 1985 (not as bad as ALS, but the Insurance company offered her a cash settlement to just go away ~ because her life-expectancy was less than 10 years ~ this was 20 years ago!). Her symptoms (numbness in her legs and arms, extreme tiredness, and periodic loss of vision) all pointed towards MS. This woman rode motorcycles and loved to camp out, so it really became a burden when she was forced into using a wheel chair. All sorts of doctors (and she saw plenty - even thought about going to Germany for some treatments) had nothing to offer. And some of the offerings were pretty risky (chemo; which could only be administered for two years - because it would potentially damage either her liver, or her heart, or both!). She did it. She hated every minute of it, but she did it. And I sat beside her while she did one after the other. Sometimes the "cure" was as bad as the illness. She felt like she was, in her words, "...slowly dying."

    We returned to Colorado in 2004. I found a physician for myself, and while talking with him, I mentioned that my wife had MS. He asked me if she had been tested for Lyme. Her tests maxed the "titers" and we went to see Dr. Martz. We met Penny (who has since retired), and Dr. Martz told us the story of how he and his brother (also a doctor), had tried every possibly course of treatment for his ALS diagnosis. He showed us the groshon, and explained that the Lyme desease could mimic many other illnesses. So my wife and I talked about trying yet another course of treatments.
    [BTW: Dr. Martz suffered a heart attack, and decided to retire (for the second time, he had retire before his ALS occured) - He and Dr. Harvey are working on a paper to be presented to medical journals sometime soon.]

    Treatments started in 2006, seven days a week. And twice a day every other day. Medicare (her primary) said they would only support this treatment if the IVs were administered by a doctor, NOT a nurse! (Can you imagine going to the hospital every day - sometimes twice daily - and the expense of doing that? Not to mention driving back and forth in all kinds of weather... as if the meds weren't expensive enough). And her secondary, BCBS, won't touch anything that Medicare doesn't support. We opted to save the taxpayers those expenses and did it at home ourself (or on the road - we traveled to Maryland, Indiana, Canada, and Vermont in that time frame). Never missed a beat! We had the process down to a science. Luckily, Creek Trail and Contract Pharmacy have helped reduce our out of pocket costs and stood with us to get what little Medicare and BCBS would support. We would be broke if they had not extended their help to us.

    My wife has only recently stopped her I.V. antibiotics. She "...no longer feels like she is dying." Her numbness has vanished, her vision has stabilized, and the "permanent tiredness" has left her. Her "titers" have all returned to zero. We go to P.T. daily, where she has been showing painfully slow but steady improvment. She may never regain all her prior physical state (maybe a three wheel motorcycle?), but she doesn't feel like she has been discarded or abandoned; and that is at least heading in the right direction!

    We have been blessed with the right people at the right time. I would be lying if I said it could not have been better (many ways); but we enjoy every minute we have together, even the arguments! We hope that you will be blessed too!

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  14. Another disappointment, one more doctor that will not help me...I am 31, and have had chronic Lyme (with all that goes with it) now going on 13 years. Mindy was my last hope, to be honest. I went ot see her once, paid whatever she wanted, and simply resigned myself to her care and expertise. I think this may just be my last effort. I can't live like this, I WILL NOT live like this. It isn't living. It's just not living. Any doctor who is worth a damn, please help me. I'm begging now. After that comes silence. Please help.

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  15. Noelle K. PritchardOctober 2, 2009 at 1:27 AM

    What is this SO overwhelmingly complicated??? WHY can't anyone help us to feel normal again??? I suspect there is more to this than meets the eye. It's just too horrible.

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  16. With regard to Floyd's comment about, "
    He and Dr. Harvey are working on a paper to be presented to medical journals sometime soon". I have found this article in Acta Neurologica Scandinavica from 2007 entitled, Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy (4). This is the only article from Dr. Martz on the subject related to ALS.
    Interestingly, this article since that time has only been cited once by a group of practitioners called ALSuntangled. This group coauthored a paper entitled, Investigating a bug (Lyme Disease) and a drug (Iplex) on behalf of people with ALS, in the journal ALS, Vol.10, Pg. 248-250, August 2009. This article is not available to most people so I feel it necessary to share with this blog, for Bill and the wonderful memories of H.



    From the paper:
    Background: A number of websites claim a causal link between ALS and Lyme disease. The websites are often sponsored by “Lyme literate clinics” specializing in the treatment of chronic Lyme, or by the sellers of products for Lyme, which they state can cause hundreds of misdiagnosed illnesses (2,3). The evidence for their proposed link between Lyme and ALS comes from poorly documented case reports or small series in which there is either insufficient evidence provided to establish a diagnosis of ALS in the first place, or inadequate follow-up to establish a true improvement in the ALS coincident with Lyme treatment (4-6). These Lyme literate clinics often state that the current standard of testing for Lyme (ELISA followed, if positive, by Western Blot) is inadequate, and they offer Lyme testing which they claim is better. We have seen no data to support the claim of superior testing.

    Investigation: Ten ALS clinician-scientists from across the United States and Ireland have thus far shared their experiences with Lyme disease testing and treatment. ... In all, more than 4,000 newly diagnosed PALS have been tested for Lyme by our group, with only 30 having had positive Elisa and Western Blot tests. Thus, in our experience, the incidence of positive Lyme disease testing in PALS is less than 1%, which is similar to the background incidence positive testing in people without ALS across the United States (9). Of the 30 PALS with positive Lyme tests, most were treated with intravenous antibiotics effective against Lyme for recommended durations (10), and none was ever seen to improve.

    Recommendation: There is no convincing evidence that ALS can be caused by Lyme disease. PALS who exhibit symptoms of co-morbid Lyme disease can request standard, CDC-approved testing for Lyme from their neurologist, with the understanding that treatment of a positive Lyme test will not reverse their ALS. Until Lyme literate clinics can provide reasonable data supporting their claims, we do not recommend that PALS pursue evaluation or treatment in such clinics.

    References Cited:
    2. Samento.com.ec; 2009 [cited July 26, 2009]. Nutranews section [1 page]. Available from http://www.samento.com.ec/nutranews/story002.html
    3. Chroniclymedisease.com; 2009 [cited July 26, 2009]. — Main section [1 page]. Available from http://www.chroniclymedisease.com/
    4. Harvey, WT and Martz, D. (2007) Acta Neurol Scand 115 , pp. 129-131.
    5. Halperin, J. et al(1990) Immunologic Reactivity Against Borrelia burgdorferi in Patients With Motor Neuron Disease. Arch Neurol. 47:5 , pp. 586-594.
    6. Waisbren, B., et al(1987) Borrelia burgdorferi antibodies and amyotrophic lateral sclerosis. Lancet. 2:8554 , pp. 332-333.
    9. Murphree, B., et al(2008) Surveillance for lyme disease - United States 1999 to 2006: Center for Disease Control (CDC) 46
    10. Halperin, J., et al(2007) Practice parameter: treatment of nervous system Lyme disease (an evidence-based review). Neurology 69 , pp. 91-102.

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  17. Bill, with your insight I now see this as a group of people taken in and "treated" by a woman who has absolutely no medical experience "Dr" Goodin as she had me address her, until I thought it was unethical and called her PA Goodin, is running nothing but a cash machine.
    MIND YOU: I'm not saying chronic Lyme is a bunch of BS I am DNA positive for borellia and babesia/bartonella. I had large purple/maroon stretch marks that were covering my body and taking over my life trying to hide them. Within a week on treatment they were 100% gone.
    In June/July of last year 2009 I was diagnosed with Chronic Lyme disease or as she called it "I take the unexplained symptoms and put them in a basket and call it Lyme." My initial visit was no more than 250 dollars and then 100 dollar follow ups. The second follow up was then 250 dollars and then 300 and my phone consults were then 75 an hour and then 90 for 30 minutes of her asking me "how do you feel and where do you think we should go from here" well hell if I know I'm not the doctor I'm a damn patient I know nothing about medical. With drug after drug of amoxicillin and Flagyl (funny story for this drug and what her office said to me in an email) and Zmax packs, I've been on them for almost 6 months now. I'm getting better but following a new regimen. My grades were slowly going below D's and F's into incompletes and withdraws, the first semester on treatment I achieved a 4.0 grade standard with 16 credit hours. Previously I was taking no more than 2 classes 10-5 credit hours and barely making passing grades. She told me by the end of the second week I was "no longer infectious and in the clear to start getting my life back"
    The creek trail medical practice is nothing but an ATM parasite. She helped me confirm my chronic Lyme disease and then proceeded to take my money while giving me no clear direction of my treatment, adding and subtracting medications out the kazoo. Then once I moved to another state I was told "you are still highly infectious and need to continue treatment to get better don’t stop now you can get your girlfriend sick with it. We need another 3 months of treatment with regular visits because this is where most people stop and start to get sick again." This infuriated me. I was then threatened with a loved one's possible health risk to continue getting treatment so she could have more money. That was the last straw for me. I never saw Dr. Harvey. Once I requested my medical records and canceled a phone consult I received this email.
    "We received a refill request on the Metronidazole (Flagyl) from Walgreens. If you are seeing another Doctor you will need to ask them to write that Rx for you. If you are wanting to continue treatment through our office, please call me so we can a=make an appointment for you.
    Thanks!
    Terri"
    At this point the office was holding my personal health for ransom after I request my medical records for MY OWN knowledge. This is unlawful practice and rather childish for a grown woman to be doing let alone doctors office.
    On top of that shortly after requesting my records and saying I wanted to reschedule I got this email
    "We have you down for a phone appt on (Date) at (time) my time. Is that what you need to cancel? We got your mailed request for records yesterday, as well as your fax this morning. The records will go out to you the first of next week. Please let me know about the phone appt next Monday. Thank! Terri"
    And then the next day less than 12 hours later.
    "Patient: Since I have not heard back from you, I have cancelled the phone appt on (date) Please call to re/schedule Thank! Terri"

    I hope this sheds light on everything for everyone considering to go to this office there isn't much of a choice in Colorado but I would take my money elsewhere. It would probably be less to take your money else where and fly to another state for treatment once a year and do phone consults.

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  18. I had been a patient of Dr. Martz and received the intravenous antibiotic treatment for about six months. Dr. Martz had a heart attack and I stopped seeing anyone at the office. Recently, one of my doctors recommended Mindy Goodin who was a P. A. who treated Lyme disease. After reading these posts, I will not make an appointment with Mindy. I still take four different oral antibiotics every day and I feel a little better, but very far from being normal. A doctor in Denver was treating me, but she now has Cancer and is discontinuing seeing her patients. I am completely frustrated in the quest to find someone locally(Denver, Colorado Springs, or Pueblo) who knows how to treat Lyme disease. Unfortunately, this PA seems to be more concerned with her personal fortune than curing someone with Lyme disease. Any doctor who cannot return a phone call is just plain irresonsible. In this day of cell phones, texting, etc. there is no excuse not to respond to a patient. I will continue my pursuit of a suitable Lyme physicianwho is up to date in their knowledge of Lyme disease. I really think I am going to have to travel a great distance to find one. I appreciate this blog a nd the responding posts and thank everyone for helping me make a decision about Mindy Goodin.
    Thanks,
    Rick

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  19. Wow - glad I found your blog. I was researching Creek Trail for my mom who has Chronic Lyme Disease and was considering Mindy's services and had asked the person I talked to in her office for a website to learn more about her treatment. She said Mindy had a blog and to just do a google search for it. Well, I did and yours comes up but not hers!!

    Thanks for posting your experiences for others to learn by. I also read a recent post that says you have found new love in your life and I applaud you for that. Sounds like you and your family have been thru hell w/this disease and you all deserve all the peace and happiness you get. Best wishes to you.

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  20. I have als and am going to see Mindy next month. I'm also seeing Dr Cameron in NY but my atrophy is progressing so I'm going to see Mindy for a second opinion.

    She doesn't seem like she's just out for the money. She didn't make any cure promises, just said she'd do her best. None pf the lyme docs take insurance and her prices are less than the ones her in CT.

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  21. I'm from the East coast and was considering the clinic in CO Springs. I think I will fly back East instead. Glad I found your post.

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  22. Thank you so much for putting this out there for people like us just beginning to deal with ALS.
    My husband was just diagnosed and has had Lyme Disease many years ago. We almost gave Mindy money that was "non- refundable" and they wanted to keep a credit card on file "in case we canceled an appointment". My husband said that just didn't sound right.
    Thank God we found your site.
    Good luck.

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  23. Bill,
    Thanks for your story. Those fees are insane. What a greedy, lousy person. Believe me, karma will get her. I suffer miserably with this stuff as does my Sister. We just don't know what to do to get better. Any detox treatment, even mild, causes such a herx that we get concerned we could die of a stroke due to the BP rise. I just don't get why doctors that understand this illness can't charge a normal fee rather than bilking desperate people out of their money. Most of us have severe financial hardships already.
    Does anyone here have any experience with Dr Naylor in Denver? Any comments appreciated. Thanks Colt

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  24. Bill,

    Your wife looked like such a beautiful person! I am terribly sorry for your loss!

    Thanks for posting your experience with Mindy. I was considering her clinic, but have now eliminated it as a possibility. Those of us with precious little money who are ill with ALS or Lyme would do better to just enjoy the time we have left with our loved ones traveling, going to the movies, or eating out rather than invest what little money and precious time we have into very expensive treatments that make us feel even more miserable and lead nowhere. Those of us with Lyme could just treat ourselves at home with Rife machines, as others with Lyme have done, sometimes achieving a cure.

    Regarding Lyme, our anger would be better directed to the IDSA, CDC, and the govt. for suppressing Lyme diagnosis and treatment in this country. They have long known how highly inaccurate Lyme tests are, yet require them for diagnosis. They haul doctors who become good at understanding and treating Lyme into court, imposing severe sanctions (which discourage other doctors from daring to treat Lyme)thereby stalling progress toward any cure for Lyme. It is heinous behavior indeed!! It appears to be done in the name of "cost effectiveness" because the expense of Lyme treatment for the large number of people who really have Lyme would be hard on insurance companies. In fact the infectious disease doctors writing the Lyme policy for Connecticut were investigated for "conflict of interest." Need I say more?

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  25. Bill,

    I just read your idea that your wife may have gotten Lyme from transfusions - yes, that is possible since I believe blood banks do not check for Lyme in donor blood. But you must also know that electrosurgery has been implicated in the development of ALS. Yes, that's right, if her emergency surgery was done with the use of electricity for cutting etc., then that is what could have brought on her ALS. Many with ALS have had it develop after electrosurgery. My symptoms, for instance, began after my thyroidectomy which, it turns out, was electrosurgery (something I had not been told about). Docs know this but don't warn patients about it - it's just another part of the U.S. medical money machine.

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  26. Not sure what "Electrosurgery" is. She had laproscopic surgery to fix the burst artery and if they had not gone in, she would have been dead in minutes. Either way, It sure sounds like you should have been notified of the risks!

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  27. Thank you so much for sharing your story and I truly am sorry for your loss and all heartache you've gone through. I actually just made an appt w/Mindy today after I was given a referral by Dee Martz whom I was referred to for counseling as I've suffered from Lyme for 12 years now. I am SO glad I found your post! I am going to cancel my appt tomorrow. This is not someone I'd like to work with whatsoever.

    To reply on someone's remark on Dr. Naylor in Denver. I went to him a couple times this spring. He does this muscle testing technique. We don't care what the treatment method is at this point as long as it works without killing me. It invoked a seizure every time so it wasn't effective and he couldn't treat me. I am highly sensitive to smells and his staff wore perfume - another problem for me and I found it strange that he allowed any chemical smells in his office whatsoever knowing most chronically ill people have sensitivities. Sorry I cannot tell you more. Dr. Harris in SFO is wonderful :)

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  28. Good day, I do not notice any new posts on this site. I am here in Canada and my sister has been treated for Lymes in Hyde New York, someone has suggested Mindy. In reading this we are now skeptical.

    Car

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  29. Hello Bill:

    Thank you so much for your post. That was a very selfless thing for you to do considering the level of stress that you had in your life at the time. Our adult son, 27, has been diagnosed with chronic Lyme Disease. He was a tennis pro a few years ago, coached kids of all ages. He is also an incredible musician, but his life has been unraveling for sometime now with all of the symptoms he's having. We have been to countless doctors in different states. People ask us, "why can't anyone diagnose your son, that doesn't make sense?" That just adds more frustration to the situation, when even your own family thinks it must be in his head. It just makes matters worse. As his parents, we do our best to keep his spirits up and keep him hopeful for a bright future. He has so much to offer. He has a lot of complications including being allergic to several antibiotics, Amoxicillin being one of them. There are days he has to hobble around with a cane, he throws up and can't eat, he's in constant pain with tons of anxiety to go along with it. The doctor who received his positive western blot results for chronic lyme (he had already had positive blood tests as well) has recommended him to go see Mindy (just yesterday). I'm so glad we saw your blog. He has been through hell for someone his age and doesn't need to go through yet another dead end street. We wish you all the best and can't thank you enough for your courage and the effort it had to take to write such a post at such a critical time in your life. You may have helped to make a world of difference in our son's life. We don't know how many more negative medical experiences he will be able to handle before totally giving up. All the best!

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  30. I can't tell you how many times I have read this blog post thinking to myself how similar all of our cases sound. I moved to Colorado due to my husbands new posting in the military. I was seeing an incredible doctor in California but we evaluated the costs of flying, treatment and appointments to continue seeing her and it was simply too much.
    After many hours of research, we found creek trail medical. It stated Mindy was the NURSE PRACTITIONER and Dr. Martz was the physican.
    We shelled out the 600 dollars for the initial appointment and hoped for the best. I had brought along my old physicians notes (who was more than willing to work with the practice). As soon as we met mindy I felt calmed by how sweet and positive she was about my treatment. Continuing the first appointment, she noticed how severe my neurological Lyme was and that my last physican strongly recommended working together. She immediately refused this stating "my treatment methods are much different than other Lyme doctors, I refuse to work with your previous doctor." We were stunned but so desperate for improvements we continued to see her for the next year.
    The next year with Mindy was hell. She had assured me with IV antibiotics I would be cured. We later discovered her dosing of the medications were against IDSA and ILADS guidelines. She had me on such a low dose of medications for such a long time, my body is now resistant to antibiotics.
    After spending thousands and thousands of dollars, my husband and I had enough of her lies, inadequate medical care, and threats.
    I am now traveling back to my old Lyme doctor in San Francisco. She has discovered since being treated by mindy, I had toxic levels of folic acid in my body from medication interactions, resistance to antibiotics and viruses that had previously been treated had all returned.
    To any of you looking at Mindys practice: PLEASE. Do not see her. She lies and makes you believe in her treatment all for the sake of making a quick buck. I should be better now. I should be living my life, going to school and being like every other girl in her 20s. But because of Mindys failure to correctly treat me, I have lost thousands of dollars and now bedridden filled with anger towards how I was treated. I urge all of you to do your research on her. She is not there to help you. All she wants is your money, even if that means putting you at risk.

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