Dr. S in Iowa

[Kim]

[user=2552]tessala73[/user] wrote:

I am a new member and recently joined today.  I have been trying to locate a doctor that does AP treatment.  I live in Kansas City, MO and I received a list of doctors for Missouri, but have had no luck – either retired, not taking new patients, or not doing treatment.  I would appreciate any information.  I would like to meet with Dr. S that everyone is mentioning.  I am hopeful for the first time in a long time.  I currently have been diagnosed with lupus, mixed connective tissue disease, and Raynauds.  Any help would be great.

Hi tessala73, and welcome to the Roadback forum.  I will be happy to send you the information you requested in a Private Message (top right of this page) as we don't use doctor's names (only initials) on the open forum. 

Wishing you all the best for success with the Antibiotic Protocol.

Take care…..kim

[JBJBJB]

[user=2552]tessala73[/user] wrote:

I am a new member and recently joined today.  I have been trying to locate a doctor that does AP treatment.  I live in Kansas City, MO and I received a list of doctors for Missouri, but have had no luck – either retired, not taking new patients, or not doing treatment.  I would appreciate any information.  I would like to meet with Dr. S that everyone is mentioning.  I am hopeful for the first time in a long time.  I currently have been diagnosed with lupus, mixed connective tissue disease, and Raynauds.  Any help would be great. 

Tessa,

I was also diagnosed with many things from Lupus to MCTD, Raynauds, dry eye dry mouth….. anything which has a name I have it. LOL

I went to see Dr. S in Iowa and I took the minocyclin for a while. It did not work well and my inflammation went sky high after I took off plaquenil and prednisone.  I also developed some allergic reaction to minocyclin. I was later diagnosed with Lyme disease. So I traveled to Columbia, MO, to see Dr. C.

If I had to do it all over again, I would've definitely first checked to see if I had Lyme disease and would have gone directly to see Dr. C in Missouri. Dr. S in Iowa is not a Lyme doctor.

JB

 

 

 

[tessala73]

Thank you soooo much.  I am really glad that I found this website, The New Arthritis Breakthrough and this discussion board.  It helpful and encouraging to talk to others who have dealt with similar issues, frustrations in care, and the ups and downs associated with autoimmune diseases.  I am currently having a flare 🙁 but the thought that I could start getting my strength back and feeling better keeps me going.

[tessala73]

Sorry.  Duplicate post.

[carries]

Hi! Could someone please email me Dr. S in Iowa's phone number and email address….my Rheumy is starting to push me to start MTX….why I am not sure I think I am doing good….but I think because of my lung surgery he is nervous and wants me taking a more aggressive medication. Now that I had melonoma mole removed from my leg I am really limited on meds I can take especially those that increase risk for cancer….so that is why its really important he lets me stay on this medication. I need Dr. S to really help convince him. All my numbers except my ANA improved the ANA stayed the same…but I have only been on this for 3mths at the time we did the tests….plus my ct scan showed that all the glands shrunk…..however the nodule I had on my lung we removed and he is worried the disease is progressing…I dont think soooo numbers prove it!!!! I think that nodule was here for a while. Anyways…I feel if he talks to Dr S maybe he will feel more comfortable with leaving me on AP.

Thanks for your help ahead of time….sorry for rambling again!!!!

Now that I am off prednisone for a month now….I am worried inflammation is going to return. I feel a little stiff in the AM but as soon as i get out of bed and move around ……I am good to go. Literally 1 minute after getting out of bed….hoping this is just  a withdrawl symptom of prednisone and not inflammation returning…..I am praying its just a withdrawl symptom …..I dont want to give my dr any reason to put me on something else. I know muscle pain and joint pain is a withdrawl symptom.

Feedback would be greatly appreciated!

[Maz]

[user=1508]carries[/user] wrote:

Could someone please email me Dr. S in Iowa's phone number and email address….my Rheumy is starting to push me to start MTX….why I am not sure I think I am doing good….but I think because of my lung surgery he is nervous and wants me taking a more aggressive medication. 

 

Hi Carries,

I'll send you a PM in a moment with Dr. S's contact info.

Have you by any chance looked into NAC for your lungs? NAC is N-acetylcysteine and is is a precursor to glutathione in the liver, a master detoxifying agent. This supplement is being used orally and in IV form for people with fibrotic lung issues, such as cystic fibrosis patients. Also, systemic enzymes, such as Neprinol or Serrakor-NK are wonderful for reducing fibrotic tissue, lowering inflammation and preventing sticky blood.

An additional antibiotic, such as azithromycin is also an excellent antibiotic adjunct for the lungs.

I am a confused by the suggestion of your rheumy to use methotrexate, really because in order to take this drug, lung x-rays need to be done prior to starting it to ensure there is no lung disease! You may also want to speak privately with Lori (Time of my Life) to ask about the methotrexate/cancer connection, as was explained to her by Dr. S.

I hope something here helps, Carries. You are wise to connect with Dr. S to get his very experienced insights as you make a decision about all this.

Peace, Maz

[carries]

Thank you Maz for this information. I have never heard of NAC other than on this board….I will definitely look into it. Is that NAC available in vitmain shops?

[Maz]

[user=1508]carries[/user] wrote:

I have never heard of NAC other than on this board….I will definitely look into it. Is that NAC available in vitmain shops?

Yup, both NAC and Neprinol or Serrakor-NK are available from online vitamin stores. I personally use both NAC and Neprinol as regular supps.

As with probiotics, people have their favorite brands of NAC – I just use the Neutraceuticals Science (NSI) brand.

http://www.vitacost.com/productResults.aspx?ss=1&previousText=nac&.x=20&Ntk=products&.y=9&Ntt=nac

http://www.vitacost.com/productResults.aspx?ss=1&.x=9&.y=20&Ntk=products&Ntt=neprinol

There is some info here on Wiki about NAC's potential to help with interstitial lung disease:

http://en.wikipedia.org/wiki/Acetylcysteine

“Interstitial lung disease

Acetylcysteine is used in the treatment of interstitial lung disease to prevent disease progression.”

Peace, Maz

[/suP] 

[carries]

MAZ this is all new to me…it was a nodule on my lung which could be scar tissue from an infection or inflammation from the disease itself…so I dont think that is the same as lung disease is it???? I honestly dont know……

So would NAC still be recommended????

Also, do you think the shortlasting stiffness in the am is due to withdrawl from prednisone…it only lasts from time a wake up then as soon as i get out of bed and walk around its gone…feel great! Is that just withdrawl symptom or is a flare up in the horizon????

I know I just got off 10day cipro too.

Let me know your thoughts! I value them and your wisdom…I know your not a doc but you do have a lot of experience~!

[Maz]

[user=1508]carries[/user] wrote:

So would NAC still be recommended????

Also, do you think the shortlasting stiffness in the am is due to withdrawl from prednisone…it only lasts from time a wake up then as soon as i get out of bed and walk around its gone…feel great! Is that just withdrawl symptom or is a flare up in the horizon????

I know I just got off 10day cipro too.

Hi Carrie,

Well, not recommending these supps, per say, because I'm just a patient, too, and don't know if they'd be of benefit to you or not….just passing along info to let you know what they are so you can do your own research to see if they would be of benefit to you. 😉 

Interstitial lung disease can accompany many rheumatic diseases, which is likely just another way these infections manifest in our bodies – Brown believed that nodules were the body's way of trying to encapsulate infection. There is an AP doc in GA who is on our most experienced list who actually prescribes NAC and ALA (alpha lipoic acid) to all his rheumatic patients. Those with lung issues and RA or other rheumatic diseases may also find that the addition of azithromycin is a good companion to their minocycline.

Carrie, the return of early morning symptoms may be due to pred withdrawl or the beginning of a flare. Flares can and do still occur while on AP for RA until remission is reached…it's just that over time the flares should be becoming less intense, shorter in duration and less frequent. It's a slow therapy that gradually re-trains the immune system to function normally again, but this takes time. Starting AP does not guarantee that no more flares will occur…just that if the therapy is working, then these should be getting better with time. Sometimes really stressful situations, an accident, a surgery (like you just had for your lung), or an illness, can also cause a flare. So, yes….this could be a rebound flare from your lung biopsy and also stopping your pred.

Definitely the introduction of cipro could have precipitated a new herx situation for you, too. Any change in protocol with dosing or type of antibiotic can induce a herx, if there are pathogens in a person's mix being targeted that could cause this. Were you taking cipro for the lung infection, post-surgery?

So, you've had a few things going on of late – stress from the surgery, taking a new antibiotic for the post-op infection and stopping pred – so it could be a mix of things going on. In other words, a bit of herxing, rebound and flaring. 😉 Do hope things settle for you soon, Carrie.

Peace, Maz

[Author]

Posts