Dr. C in Mo. Warning

[Okie Tam]

I’ve been hesitant to post this but last November I took my daughter, neighbor and I to Dr. C in Missouri for Lyme treatment. Insurance did not pay for this visit but I felt we had to check out this treatment for lyme. Very disappointed in the outcome.

Interesting sitting in on the appointment for three individuals. I must admit, I was very optimistic going into the appointment. But, we all received the same spiel even though we all have different stages of RA, Lyme results, hormone levels and symptoms. After months of calls and requests for my $2000. of test results I was sent my results without any feedback from the doctor. Actually, we were prescribed treatment that I later found out was not based on our lab results. Not being a doctor, I can’t make heads or tails of what the tests are telling me. I guess the doctor can finally read me my test results in March when I pay him another major medical bill that my insurance won’t cover. In the meantime, my daughter and neighbor are not doing better. As a matter of fact the massive amounts of antibiotics have created major intestinal problems. My 60 year old post menopausal neighbor was given the same treatment, including hormones, that both I and my 23 year old daughter were given. I’ve been taking bio-identical hormones for the last 7 years and I am fully aware that a 60 yo postmenopausal women and I do not require the exact same prescription. On top of that, I was sent a bill for a consult from the nurse that got everything wrong that I discussed with her.

I could go into greater detail but won’t. Suffice to say I am at a loss as to where to go from here. After two years of mino for my daughter, neighbor and I with minimal results I think that we are going to have to go to the toxic stuff in addition to the mino to keep my 23 year old child from getting serious joint damage. I still feel that RA is caused by a bacteria but since my child doesn’t have the strength in her hands to even pick-up a case of Dr. Pepper with her hands, I am afraid time is running out. I am deeply saddened, afraid for her future and disappointed in the medical community.

[Jan Lucinda1]

Sorry to hear about your disappointment. I know some people communicate by e-mail with Dr. S. in Iowa. I don’t know if you have considered this. Hopefully some more experienced people will come forward with some suggestions.

Jan

[Okie Tam]

@Jan Lucinda1 wrote:

Sorry to hear about your disappointment. I know some people communicate by e-mail with Dr. S. in Iowa. I don’t know if you have considered this. Hopefully some more experienced people will come forward with some suggestions.

Jan

Thanks Jan but we’ve been to Dr. S too. Gone through the IV’s twice now. Once in Ida Grove and again here in Oklahoma with no noticeable improvement. Seems the only thing that keeps her functioning is Celebrex and she takes more than she is suppose to of it just to get out of bed in the mornings.

With Dr. C we tried the Doxi and it was intolerable and again no results what-so-ever. Not even a herx. She has gone back to the mino. Tested her for Lyme through Igenex so tried that direction but got nowhere. I’m at a loss.

[eann]

I don’t believe that Dr. C will go over test results on the phone unless you set up a separate phone consult with him. There is a fee for this. He charges for time spent on the phone with the nurse also, if it reaches a certain level. It is a different set-up than what most of us are used to from physicians.

I am sorry none of you are feeling any better. Did you all test positive for Lyme? Doxycycline can be hard on the gut. Did you use plenty of probiotics? I have RA and tested positive per Igenex IgM for Lyme also. I have huge problems tolerating the large doses of antibiotics needed for Lyme treatment due to also having RA. I end up with intolerable levels of inflammation. I am now on just 40 mg./day of Doxy. Can’t say I’m improving, but it is at least tolerable.

Sorry, I don’t have any good solutions for you. If it is the RA that is causing the most harm, you may need to concentrate on this right now. I wish all of you better days.

[Okie Tam]

Hi eann. I am aware that Dr. C charges for phone consults. I don’t mind paying for the doctors/nurses time. My problem is the detail I took explaining an issue to his nurse only to get the total opposite of what we discussed and then I was billed for the call. I also discovered that at the time of our discussion the doctor had not even reviewed my test results but I was given a prescription on what should have been based on my blood work.

In frustration, I finally asked for the results of my tests and was sent copies from the lab with no comments from the doctor. Each time I’ve called I’ve gotten nothing but platitudes and no results. I set through 3 appointments, (attended appt, with both daughter and neighbor too) and he diagnosed and prescribed the exact treatment for all us and we all have different symptoms,etc.

Where do I go from here? We have a follow-up appointment in March but I feel like I’ve gotten a big “0” from the first appointment so why waste more travel time and money for more of the same? I’m frustrated. I had such high hopes that Lyme was a major player in our illness and that this doctor could get us going in the right direction but now I’m at a loss of where to turn.

I know, I’m venting but just feel that the people here on this board will understand my fears, frustration and pain. Thanks for listening. A worried mom…

[Jan Lucinda1]

I hear your frustration. I have found it helps to put things in writing by letter or fax. I don’t know if you have tried this but you might consider it. I hope you can find ways to deal with Dr. C. so you can get what you need.

Jan

[gordbentley]

considering both you, your daughter and your neighbor all have RA im assuming? maybe you might wanna check environmental toxins out? maybe both your houses were made by the same developers and lead solder was used in the pipes? or maybe the gypsum rock (drywall) in your house is toxic as well? being in construction im very mindful about these things and they have been known to cause a wide variety of health problems in familys all living in the same dwelling and in the case of subdivisions being made by the same developer (hence using the same materials in every individual house) entire streets have been known to adopt a wide variety of auto immune conditions. as I do beleive in a bacterial connection, i also do beleive in the theory of environmental exposure. something you two ladies might wanna check out?

[Okie Tam]

Thank you gordbently for the suggestion. I am aware of environmental toxins and have previously considered your same train of thought and truly appreciate your observation. However, we live in the country on 5 – 10 acre lots. My neighbor’s home was built by her father over 35 years ago. Mine was built years later in stages. The original owner built a smaller home and then added the other 3200 sq feet as money was available so that eliminates using the same builder/materials, etc. We are both on city water, mine is brick, her’s is limestone. We’ve both checked for mold problems and tested negative. Both have ponds but not connected.

The thing we have in common in spades is wildlife, including a prolific deer population, raccoons, armadillos, squirrels, skunks, rabbits and anything else that ticks love to feed upon. I’ve always loved the wildlife in my backyard, just never expected it to make me sick. I do appreciate your suggestion and thank you for caring.

Kind regards,
Tammy

[RAinPA]

I’m new to AP therapy so unfortunately I can not give much advice. The only thing that I can say is that the AP Dr I see here in PA told me that he uses the same protocol for all “autoimmune” diseases whether it be RA, LD, SD, lupus, etc… Maybe the Dr your seeing in MO treats the same?

[Okie Tam]

@Jan Lucinda1 wrote:

I hear your frustration. I have found it helps to put things in writing by letter or fax. I don’t know if you have tried this but you might consider it. I hope you can find ways to deal with Dr. C. so you can get what you need.

Jan

Jan, I actually heard from one of Dr. C’s nurses late this afternoon. As you can imagine I vented my frustrations of the last three months and this time I think I actually got through to someone. The long and short of it, I have a phone consultation with Dr. C tomorrow afternoon. Maybe I’ll get some answers finally. It just shouldn’t be this difficult to communicate with your doctor. Gee, can’t wait until the new Obamacare kicks in and makes things even worse.

I do intend to write down my concerns prior to my phone call. Thanks for your advice.

Kind regards,
Tammy

[Parisa]

Tammy,

I had a few thoughts when I read your post. First being your concern that you hadn’t noticed any improvement or herxing from the antibiotics. My husband never really herxed and definitely not in any pattern. Also, he did not improve on his beginning Lyme treatment. As a matter of fact, he didn’t actually start to improve until he switched to IV antibiotics about a year into his treatment. That’s not to say that you will need IV antibiotics but I do want to stress that sometimes improvement can take a while. In addition, if you have Babesia and aren’t treating for it you also will not see improvement.

As far as you, your daughter and neighbor all receiving the same protocol, some doctors do start their patients on the same protocol, look at reactions or nonreactions and then start to tweak the protocol. I’m not familiar with Dr. C’s approach so that might be a good question to ask him – whether the protocol will be customized as you go along. You definitely don’t want someone who takes a cookie cutter approach.

Lab testing – It is a possibility that Dr. C is treating based more on a clinical approach versus a lab approach. Lab work might confirm his beliefs but he may not rely on them completely.

Good luck with your phone consult. I hope you get answers to your questions.

[richie]

Hi–Just cant let your remark about Obamacare pass –why you had to mention it is beyond me but heres my take on it –you have a doctor who charges you for an office visit orders blood tests then charges for a phone consult to give you advice pertaining to the tests —-Just maybe Obamacare might prevent greed like this to continue and protect you against practices of this nature —
richie

[kerry23]

What about a co infection? Has she ever been tested for that. My son has been tested for all but was negative. Months later, he took some written test for Babesia and Bartonella. Now, he is on Mepron and Rifampin is next. Mepron has seemed to help with some symptoms. Currently, he is taking Zithromax and Mepron after taking Minocin for 2 months. He had a never ending herx with Mino. You can have negative blood results and still have these diseases. I don’t think these doctors know it all, they are not miracle workers. I have found that out myself. I thought this would be cut and dry as soon as I found LLMD but it is so hard to tell what is happening in the body. Is it a herx? Is it the meds (side effects or adverse effects), is it the Lyme, RA, of Scleroderma pain, it is such a struggle. I pray for you that you will find an answer, I am still looking myself and reading here helps.
I have RA symptoms that seemed to have worsened on Minocycline and Levaquin. I am so stiff during the night and morning. I am off Levaquin now (used for Bartonella), I firmly believed that worked for me and wished I could remain on it. I did not have any bad serious effects just felt pain daily worsening for 3 months. Now, he cuts me down to M W F with Minocin but I need to be on something for Bartonella. I see Dr. B. in Rhinebeck and he is quite knowledgeable but they are just so busy and he does not communicate well. I believe he just doesn’t know some questions I ask. I can’t blame any Dr. due to this being so complex, all these disorders with all the same symptoms. Now, I am reading about yeast and probotics, the symptoms for them are identical as Lyme. Very scary.
I am praying for you, keep us posted.
Kerry

[Okie Tam]

Wow Kerry, thanks for that post. It was very uplifting knowing I am not alone. And thank you too to all the others that have made suggestions, comments or just voiced their concern and support as I vent in my quest to get my daughter, friend and I well.

I did have a very productive call with Dr. C on Tuesday. One-on-one communication is a very good thing. I believe we have a path forward and am very grateful as I just feel in my gut that that there is an infection connection and was not ready to give up.
Something interesting that the Dr. seemed to confirm is the mix of hormones in this disease. Without going into great detail, of the three of us diagnosed with RA/Masters Disease (Lyme), I have the least severe case. The MAJOR difference, environmentally, socially, etc., is that I have been on bio-identical hormones for the past 7 years. Dr. C reviewed our results and confirmed that hormones tend to play a major part in AI diseases. One of the directions we are going is to regulate/normalize hormone levels for my post menopausal neighbor and 23 yo daughter. I believe this is a step in the right direction. I’ll keep you posted on our progress.

@ Richie: I stand by my comment! This is not the right forum for the debate that I have had numerous times on appropriate forums so, I will pass at this time. Suffice to say that AP protocol, not being an accepted treatment by the AMA for RA or other IA diseases will more than likely NOT be allowed under the new healthcare law. Here’s your Methotrexate, call me in the morning. And no, I will not reply to your baiting on this forum.

[Jan Lucinda1]

Tammy-

I am seeing a female osteopath at a county facility and I talked her into AP. I’m on minocycline. With AP being more benign, less expensive than biologics, other government facilities should be receptive. Another APer has a UCLA doctor.

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