New To this site – Connective tissue disease & minocycline

[Anonymous]

Thank you for your very intelligent suggestion.
I totally agree with you that I should postpone this mino treatment. I have been very blessed that eventhyough I have a lot of symptoms none of my organs have been damaged and are in perfect condition 😀 . I also forgot to mention that I do not have any inflammation whatsoever of joints and no rashes.
I went to a neurologist today to see if he could get any answers for me because as I go to different specilaists, nobody has an answer for my health symptoms. He did a very, vey thorough evaluation and he immediately noticed that all my muscles
around my neck and base of skull were extremely tense and swollen and that I most probably have inflammation of nerves due to severe stress. He mention that if nerves have inflammation, they are the cause of many of my symptoms. If the mino cause intracranial pressure in some patients, that is definitely the least think I want to have due to my’condition!! Thank you for such a thoughtful and smart advice.
When you suggested azythromizin as an option of antibiotic, that is exactly the one I took (Z-pac) and my nausea went away
almost 80%!! Perhaps I can try that after a few weeks of being de-tox from the mino.

Thanks so much for all your advice. I truly apprecite that.

[Maz]

@liztexas wrote:

I also forgot to mention that I do not have any inflammation whatsoever of joints and no rashes. I went to a neurologist today to see if he could get any answers for me because as I go to different specilaists, nobody has an answer for my health symptoms. He did a very, vey thorough evaluation and he immediately noticed that all my muscles around my neck and base of skull were extremely tense and swollen and that I most probably have inflammation of nerves due to severe stress.

When you suggested azythromizin as an option of antibiotic, that is exactly the one I took (Z-pac) and my nausea went away almost 80%!! Perhaps I can try that after a few weeks of being de-tox from the mino.

Liz, did the neurologist or other doctor run any muscle enzyme tests? Inflamed muscles can be a part of rheumatic diseases, too, and a muscle enzyme test could provide more clues with that.

There shouldn’t be any need to wait several weeks to detox from mino. Minocycline and azithromycin are often taken in combination as they compliment one another. When Dr. Brown found that a patient was experiencing hypersensitivity (too much die-off), he would do a wash-out period of a few days to a week and then resume treatment. This just allows the body time to rinse out the circulating bound immune complexes.

One last thought…as you responded so well to azithromycin, has any doc ever tested you for helicobacter pylori infection? This is a stomach infection that can create all kinds of problems, from stomach ulcers and GERD, gastrointestinal disorders, such as gastritis and nausea. Interestingly, as this infection requires antibiotics to treat it (such as a tetracycline, a macrolide, like biaxin (azithromycin is also a macrolide), and flagyl), in order to stop the nausea and GERD associated with the infection, bismuth subcitrate is also needed to be given. This infection can be nasty and chronic in some folks and quite often goes undiagnosed and untreated. There have been a number of studies tying various autoimmune diseases, such as RA and SD, with helicobacter pylori and demonstrating that abx therapy has great therapeutic effect on the rheumatic disease. Of course, I don’t know if this may be in your mix of pathogens, but it may be one worth checking?

Putting it out there, Liz, that you find some helpful answers and also sending good thoughts your way as you find the courage within to move ahead to have your aneurysms fixed. Please let us know how you get on when you can. 🙂

[Anonymous]

Hi. My name is Phil. Limited scleroderma. Sorta like limited cancer. I don’t think so. I am not being sarcastic. I have been diagnosed with Crest Syndrome, for over twenty seven years now. I am about to turn 59. For many years I was on cruise control. I have lived a full life, other than cold weather activities, my disease has not stopped me from life. I have been treated by the best scleroderrma Doc’s on the East Coast, if not the country. What has happened to me is a long term progression of bad effects from the original onset of the disease, plus long term effects from the various prescrptions I have taken. Where am I now, you might ask. At the crossroads between having reached the limits of what the traditional medical treatment can provide, and seeing Dr. Sinnot in two weeks for a ABT week in Iowa. You must understand. I am a CPA with a huge tax practice, and I am going to Iowa for a week in the middle of March. I am not crazy, just for the first time, scared. My dear, I speak to you as the voice of both compassion and unfortunately experience. Get yourself help. Don’t be afraid. A positive nature has been my secret weapon, but if this treatment is real, go for it. I am. I could wait until after April 15th, but I don’t think I will. Choose well. and I would be glad to continue to correspond, if you would like. This is a wonderful forum. Use it well.

Phil

[pdenham]

Hi I’m Patricia, have limited SD since 1997. I have never been on any medication for it except one month of prednisone, saw the side effects and said “forget it!” I have general achiness, raynauds and have to get my esophagus dilated yearly to swallow. I have read The Arthritis Breakthrough & Scleroderma by Scammell and Our Road Back. I have not heard of any of this treatment til now. I’m both excited and scared at the same time because it’s a big commitment to be on AP protocol. I am trying to learn all I can before my appointment with the Doctor in Ida Grove in April. I am praying for direction and wisdom and hoping my insurance company covers IV’s so I can get the full treatment if needed. Have any one of you only used the pills with success? I don’t know how to get around this board too well, still learning. 😉

[Maz]

@pdenham wrote:

I am trying to learn all I can before my appointment with the Doctor in Ida Grove in April. I am praying for direction and wisdom and hoping my insurance company covers IV’s so I can get the full treatment if needed. Have any one of you only used the pills with success? I don’t know how to get around this board too well, still learning. 😉

Hi Patricia,

How great that you’re going to see Dr. S. in Iowa! I understand from the many who have made the trip over the years from this forum that you will love this caring, wonderful old country doc to whom thousands have traveled for his special brand of TLC. While there, he will answer all your most burning questions and will help to instill all the confidence in you that you could want to pursue the treatment and also the hope for good recovery!

There are many SD patients with all forms of the disease who frequent this forum, so as you continue to read and post here, you will no doubt bump into many and make lots of friends along the way. In the meantime, the main website has a ton of great info you can browse, too, along with some wonderful testimonials of other SD patients who have “been there and done this,” some of whom still frequent the forum to support new folks like you. So hang around, feel welcome and others will be by shortly to root for you and help answer any questions you might have about the treatment from their own experience. 🙂

https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/36.html

Just a heads up, but if you look on the main Discussion Forum page, right at the top left in red, you will see a button that says, “New Topic.” If you click on this, you can begin your own discussion threads with new topics. These are easy for others to see immediately and respond, as it’s more likely that if you tuck a post into an already existing thread for it to be missed. Choosing a subject header for the thread that may attract others to your questions can also help a lot.

Hi CaPhil! Also great to see you here and I am sending all good wishes to you as you make the trip to Iowa, as well. Maybe you and Patricia can share notes on the experience here for others who are considering going up there, too? We love reading those “Trip to Iowa” threads and it’s a great way to stay connected with the community while tucked up there in the Iowa countryside. It sounds like Patricia is going a few weeks after you, so am sure she would love to hear of your experience, if you can manage to pop by with some trip updates. 😀

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