Relapse?

[Mumof3]

Hi,

I tested positive for scleroderma in 2008. I didn’t have enough symptoms for a clinical diagnosis. I had joint pain and horrible muscle pain. My most bothersome treatment was GERD and issues with my esophagus (choking on food). I started on minocin right away and had clindamyacin IVs the first year or so. After a few months, I felt great. My SLC70 was negative but I test positive for SLE and then Limited Scleroderma which baffled my doctor.

I ran a marathon, several half marathons, play hockey and soccer year round. BTW – I am 50 years old.

Fast forward to 12 years later, I have felt wonderful. I trained for a half marathon with no difficulty in the summer and fall. But in October I developed a cough. It was noticeable when I ran in the cold weather and played hockey. I felt okay otherwise. I had GERD which was exacerbated by taking Advil. I am not supposed to take it as I had internal bleeding from it years ago. The Advil has real intensified the GERD and has given me an ulcer.

My doctor asked me to do a chest X-ray and a pulmonary function test. My x-ray showed inflammation which my family doctor thought was from GERD. There was a decline in my PFT so now my doctor wants me have a CAT scan and see a pulmonogist.

So now I am freaking out. Can bad GERD and reflux cause this? I have had GERD for about 12 years. I am not sure what to do. I just switched to doxy a few weeks ago because my face was turning blue. Any advice is appreciated.

Thank you

[Mumof3]

I should add I still don’t have a formal diagnosis. I don’t have Raynauds or many other symptoms so my doctor has called it UCTD.

[PhilC]

Hi,

Mumof3 wrote:

My doctor asked me to do a chest X-ray and a pulmonary function test. My x-ray showed inflammation which my family doctor thought was from GERD. There was a decline in my PFT so now my doctor wants me have a CAT scan and see a pulmonogist.

So now I am freaking out. Can bad GERD and reflux cause this? I have had GERD for about 12 years.

Yes, GERD can cause lung irritation and damage. See:

Gastroesophageal Reflux and Lung Disease
pubmed.ncbi.nlm.nih.gov/26104973-gastroesophageal-reflux-and-lung-disease/

Aspiration Pneumonia and Related Syndromes
pubmed.ncbi.nlm.nih.gov/29730088-aspiration-pneumonia-and-related-syndromes/

Current and Future Perspectives in the Management of Gastroesophageal Reflux Disease
pubmed.ncbi.nlm.nih.gov/29766521-current-and-future-perspectives-in-the-management-of-gastroesophageal-reflux-disease/

You’ll need to copy and paste those links if you want to read those. The forum is currently acting up and not allowing me to post working hyperlinks.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Mumof3]

Thank you Phil. I appreciate it. That is very helpful.

[Spiffy1]

How long were you on mino before your blueing occurred? I am sorry you have this catch. It sounds like you have been doing really well until the cough. Have you tried switching up your diet? If so, Was it helpful?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Mumof3]

The inside of my ears turned blue after the first year. After about 10 years, the corners of my mouth turned blue and now I have a big patch on my cheek.

My cough is completely gone now. I was on a puffer for a while. The GERD is awful. For the last month, I have been gluten, dairy and sugar free. That does seem to help. I saw a naturopath last night who suggested paleo and a bunch of supplements to heal my gut.

Just find it odd that I have no other symptoms other than GERD. Hoping that is what is affecting my lungs as I am still very active.

I may switch back to minocin and just deal with the blue skin. Kind of freaked out right now about the PFT and CAT scan and having to see a pulmonologist.

[Maz]

Hi Mumof3,

Have you been tested for H. Pylori? If not, maybe worth checking? There is research on this infection and it’s connection to SD in the Research section of the site and the following article and studies are also interesting.

H Pylori & Progressive Systemic Sclerosis (PSS)

[Mumof3]

Thank you Maz. I didn’t know there was a connection to SS. Last night my naturopath requested that I be tested for H. Pylori so I will be getting tested ASAP. I also sent her the article.

[Maz]

That’s great, Mum! There are several ways to test for it – blood, breath, and stool. All the tests vary in specificity and sensitivity, so also worth asking about this. H. Pylori can indicate the need for a change in protocol, and it’s also worth checking out supportive supps, like bovine colostrum and slippery elm.

[Mumof3]

Thank you Maz. I will also speak to my family doctor about the different methods of testing for it.

[PhilC]

Mumof3 wrote:

I may switch back to minocin and just deal with the blue skin.

Besides GERD, it’s also possible that your lung condition was caused by minocycline. In some people, minocycline causes lung disease. The two terms I’ve seen used are “pulmonary eosinophilia” and “pulmonary lupus”. Since you stopped taking mino and now your cough is gone, I thought I should let you know about the connection between minocycline and lung disease.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Mumof3]

Thank you Phil. I did not realize that. Does doxycycline also cause the same thing?

[PhilC]

Mumof3 wrote:

Does doxycycline also cause the same thing?

Not that I’m aware of. If it does, it would have to be something that’s very rare.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Linda L]

Have you been checked for clamydia pneumonia? It is very common. I wouldn’t let them doing any invasive tests on you. Do you take probiotics? Try to take some after dinner /have dinner at 7 pm latest/ and see if it helps.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Mumof3]

No I haven’t been tested for chlamydia pneumonia. How do they test for that?

They want me to have a CAT scan and see a pulmonogist. It is odd because I feel fine. The cough is gone. I just played hockey and didn’t cough once and felt fine. I have a decline in my PFT from 5 years ago and my chest X-ray showed inflammation but I feel okay.

[Author]

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