Dr. C in Mo. Warning

[richie]

Hi–Just a correction –minocycline is recognized by the ACR as a DMARD –Mayo clinic has it on their list as a DMARD for RA –guess your suppositions and facts are a bit off ..You are quite right this is not the forum SOOOO why did you have to bring it up !!! Especially since its not true and just wild specualtion !!
richie

[Parisa]

Tammy,

I’m glad to hear that you had a productive phone consult with the doctor. It really helps when you feel that you are headed in the right direction!

[Bill]

Richie

Sorry I just could not let this discussion pass without comment. With all due respect it would seem that you are placing “pie in the sky” political rhetoric above the hard facts that all too many of us have learned from experience. Yes mino is an approved DMARD yet that does not stop many of us from having to travel great distances in order to find a Dr. willing to treat RA or other auto-immune conditions with it. That is a large part of what this forum provides,information and doctors that are not widely known and available.

Most of the people who have studied alternative medical protocols and treatments have found that they are not supported by
government or establishment medicine. Many fine Doctors have been persecuted for trying to help patients with effective yet non approved therapies.The worlds greatest Cancer Doctor, Dr. Stanislaw Bursinski is just one of many examples. Dr. Johnathan Wright is another.

Seems to me you may be placing Obummers duplicitous rhetoric above the hard facts which many of us have learned over the years. With all due respect I believe it is you who is engaging in wild speculation here, not Okie Tam.

There is just too much self serving political slight of hand designed to fool the public.Such as ” we have an organic garden in the whitehouse” while a monsanto and big agribusiness “food safety” law is jammed down our throats in a lame duck session during the Christmas rush. This bill is all about putting small organic farmers out of business under the guise of “food safety”.

Believe in fairy tales if you wish. But I have studied effective alternative protocols for too long. There is not 1 shred of evidence that this poorly written disaster of a health care bill will help anyone who seeks effective treatment outside of establishment paradigms.

[marypart]

There is one thing about the Obama healthcare changes that has already helped my son.

My son is 19, and he is too sick to be a fulltime student. Usually that would mean that he would not be covered under my husband’s insurance. Bush signed a law called “Michelle’s Law” that requires coverage for a dependent over 18 who a doctor ceritifies is too ill to go to school fulltime. Unfortunately, that law only guarantees 12 months of coverage. So my son would be off of our insurance as of June.

But, because of the new rules under Obama, he is covered under my husband’s insurance until age 26. Thank heavens! He is doing two courses at a time, and with his fatigue and the twice weekly IV sessions at the doctor, there is no way he could go fulltime.

Just another tidbit, for others in similar situations… He could have qualified for COBRA under my husband’s insurance when he turned 19, but I checked on it, and the insurance provided by the COBRA was a different, really crumby insurance.

So right now, we are very happy with the new law, at least in regard to extending coverage to young adults.

And one more thing, after 2014 he won’t have to worry about being denied coverage because of a “pre-existing condition.”

So those parts of the law we really like.

[richie]

Hi Bill –Appreciate your reply but no bill is perfect –for sure the Healthcare isnt –but now a person who has RA or Sd can apply for health insurance without a previous condition clause –Just by your use of the word Obummer indicates to me that NOTHING he would do would meet with your approval –guess you liked the economy of 2007–2008 –I sure didnt –INcidentaly this bill you referred to calls for more inspections —-stricter oversights of imports –Is this bad ??? Furthermore -The Testor –Hagen Amendment to this bill exepts small farms –so there goes a big portion of your arguement –Guess you long for those second term Bush days !!!!!!! –
richie

[Jan Lucinda1]

I’m not big on Obama but the clinical trial of RA and antibiotics now going on at NYU was funded by the stimulus bill so there was one good thing from the stimulus bill.

[Bill]

Richie

Thanks for the response. I appreciate the gentle joust. I agree with you the health care bill certainly is not perfect. The 60 seat loss to Obummer in the house would indeed reflect that many certainly feel it is far less than perfect. As far as your speculation on my politics, I’m an independent. I do expect a mans campaign promises to be kept. Most have not been hence, “Obummer”. You seem to assume I supported Bush. Actually I try not to be fooled by the right left paradigim. I want responsive and honest government. republican, Democrat or Independent. As far as the 2007, 2008 economy goes the Dems did control both house and senate, thus the purse strings, during those years. You can also watch on you tube numerous congressional hearings where pleas were being made for them to reign in Fannie Mae and Freddie Mac before those GSE’s caused a serious financial collapse. They refused to do it, particularly Frank and Dodd. This plea was made and refused numerous times. Watch it for yourself on you tube. Like Bush, they too are dopes IMHO.

However my friend, you clearly glossed over the most pertinent and primary issue I raised; Big government, establishment medicine and the FDA have never been friends of alternative therapies like AP. Which is one of the reasons TRFB exists. If they were open to it we would not need the Road Back.I also mentioned the many attacks that have been made on Superb Physicians like Stanislaw Bursinski and Jontathan Wright who dared to treat people and heal them outside of traditional standards of care.Of course their are many more doctors out there who have also been unfairly targeted as any student of alternative medicine is aware. We do not even use Full doctors names on this board in order to exercise discretion and caution. Establishment medicine and their biggest defender the FDA, simply have not proved themselves friends of alternative, integrative or preventive medicine. Have they my friend?

I was offered a 2 year trial with methotrxate, whopping amounts of injected pred. and an immune suppressing infusion drug. I did not want it even though it was free. I chose AP. If alternative treatments are covered by this plan as time goes on good then I will reconsider. However since this is a bill that seeks to limit choice not expand it, I have grave doubts about it.

As fao the Food Safety Bill I will choose to remain skeptical. No good bill needs to be rushed through a lame duck Christmas session. It is to long to go into here but many small producers were opposed to it and do not trust it. It will very likely create much higher compliance costs for smaller producers,putting them at the disadvantage of corporate producers, despite the amendment. Michael Geer at the “New American Thinker Blog” say’s “You may be disposed to embrace a genetically modified, enhanced and altered food chain, but for those of us who eat our foods unadulterated, raised naturally and without benefit of the federal government mandating what we can and can’t eat, SB 510 is one more giant step towards consolidating total power over the lives of free citizens. I do concur. Finally According to the Christian Science Monitor opponents of the bill include the American Grass-Fed Association, Family Farm Defenders and the Small Farms Conservancy. Supporters include Kraft Foods, National Manufacturers Association, George Soros and Monsanto. Ouch!
Richie you can stick with Obummer and Monsanto. I’ll stick with my distrust of both Government sponsored medicine and Gmo loving big corporate farming.

Peace Bro,

Bill

[Maz]

@Okie Tam wrote:

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.

Hi Tammy,

Was so stunned to read your subject line to this thread and saddened that you’d made such efforts and had such a bad feeling after having done so. I’ve been away from the forum for a week, but so glad to hear you’ve now communicated your concerns to Dr. C. and that you’re feeling more comfy with his direction.

I agree with Parisa that very often a LLMD will begin with a “standard” protocol to gauge individual patient reaction and then will tweak things along the way. Your concerns for the degree of inflammation your daughter is suffering is very real and just as a fellow patient suggestion, but in the same shoes I would ask Dr. C. if your daughter could have plaquenil added to her protocol for some anti-inflam relief. It takes a while to fully kick in, but should take the edge off. It’s also a treatment that LLMDs use to treat the protozoan infection, babesiosis (which is malaria-like and the disease for which the drug was originally developed). She need not be on it forever, but as I also suffered from tremendous amounts of inflam in the beginning of my Lyme protocols, I was rx’d plaquenil by my LLMD and it did help. In fact, he’s just put me on it again as a cyst-buster and to continue my babs therapy, though I don’t really need it for anti-inflam relief anymore.

Would also suggest researching Astaxanthin, which is a supplement that has had some research done and has been shown to reduce CRP by as much as 20% within the first month or so of use. Of course, should always check with the doc prior to starting a new supp to ensure there are no interactions with other meds being taken. 😉

Boy, do I understand how you must have felt…you went to such lengths to help your daughter and your friend and you must be feeling quite a bit of responsibility for outcomes, not to mention the investment in costs. There is a real challenge in terms of communication with any physician with whom there is a need to travel and this can be incredibly frustrating. I don’t think it’s a problem unique to Dr. C. and have heard it happen even with the most communicative of docs. Dr. S is a pretty accessible guy, but even he can take a while to get through to in some instances.

I am also wondering if, with your daughter’s new protocol, she is experiencing the heavy herxing I also experienced in the beginning of Lyme treatments? If so, I began to turn the corner around the 3 month mark, though my labs seemed to improve faster than my symptoms. Sometimes it’s the opposite and labs follow improvements. This is going to vary between patients, but if this helps, I did find it very encouraging to get my labs drawn at regular intervals and to watch those numbers coming down over time.

Seems this thread has been hijacked by healthcare and other politics. Hate to be a party-pooper, boys, but the appropriate place to discuss personal political persuasions is in private. T’was ever thus…politics will inevitably erupt in a sharing of diverse, strong opinion, and although it’s clear the conversation has been respectful and even jovial in the joust, please help to redirect the conversation back to the topic, mindful that when patients post their concerns, they are often in great pain and looking for peer support with the shared personal experiences of others. Thanks kindly for your understanding. 🙂

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