Herxing and lung involvement?

[paper tiger]

I found out in September that I have pulmonary involvement so I switched it up from doxycycline M-W-F to Minocin BID every day.

I’m having trouble breathing, it almost feels like I’ve lost another 10% lung capacity in the past two and a half months. I know some SD patients don’t herx on account of the absence of inflammatory components. Interstitial lung disease is characterised by inflammation… is it known to make the lungs worse before things get better?

Feeling a bit discouraged… in two weeks I have an appointment to get rx’d for Cytoxan. I don’t want to start the stuff, but I was at 58% lung capacity when I did my PFT in September, and it’s only getting harder to breathe. Wondering if I should tough it out or just take the cyclophosphamide and deal with the potential side effects.

[hopefulmama]

Paper Tiger,

I have been following your recent posts and have been really worried about you. I believe that AP is going to work, but I hate that you have to go through all of this along the way. You are very young and should be off living a fun life in your twenties, not worrying about being able to breathe 🙁 These diseases seem so random and it isn’t fair. That said, I can tell from all that you have written that you are strong and I believe you are going to beat this thing.

Have you considered going on LDN? I wonder if it would help stop the progression of your SD, and I don’t think there is any way it could make it worse. I’ve read a lot of amazing things about LDN completely stopping the progress of MS and Crohns, and even AIDS. And turning around cancer. Stories written by patients just like us who actually had these things happen to them, who are in remission or at least never got worse. I personally feel that the LDN is doing so much for me, just in the past month. I’m noticing a wide variety of changes, and I attribute a lot of them to the LDN.

Anyway, whatever you decide to do you have my support and I also hope you will speak with Cheryl F because her daughter Jessica had lung capacity down to 60% and just a few years later won an NCAA swimming championship. You’ve got to have good lungs to do that! 🙂 Also Vonni had the same problem with her lungs and now is back up to 90%.

Did you ever get tested for lyme? Maybe the Minocin alone isn’t strong enough, which would be the case if you had multiple co-infections. Oh, and consider the clindamycin. I am not a fan of antibiotics but the research I did recently showed that the mycin class of antibiotics was considered to have very high efficacy against mycoplasma while the tetracycline class was just moderate. Perhaps you need to kick it up a notch.

Sending you prayers for your renewed health – hang in there. We’re all pulling for you.

Andrea

[paper tiger]

Hey Andrea, thanks for your reply!

Last night was very strange… around dinnertime, I stopped being able to take a deep breath. All night, all I could take were shallow breaths that never quite satisfied me. This morning, it’s a little better. If I try to take a deep breath, I can tell my lungs are irritated, but I can get them to expand more than last night. I’m still taking lots of small, shallow breaths, though. I’m going to give the meds a break today to see if I feel better tomorrow.

The bummer is that if I was herxing and it was joint pain, I could just get in bed and literally waste the day away. But if I’m herxing and I can’t breathe, that’s another story. Worse yet, if I’m not herxing and I’m just deteriorating, then I’m in a really bad position.

My problem is that right now I have a rheumatologist I don’t agree with on anything, a GP who’ll only prescribe me Minocin for “acne” (with a wink, but she really wants me to find a specialist; she knows she’s out of her league), and a pulmonologist who is dead set on starting me on Cytoxan. BUT, I’ve just been referred to another rheumatologist to get a second opinion, and my naturopath is also a certified MD who is open to AP. So I have options to explore. I hadn’t thought about LDN much (though I’d read about it ages ago), but maybe it’s time I enquired about it. I guess the biggest problem is that I’m trying to do everything on a budget.

I haven’t been tested for lyme, though. My Naturopath/AP doc seems to think it’s unlikely to stem from lyme. Montreal’s too cold for bugs most of the year, and I’ve never been known to be outdoors much in the warmer months. The summer before I began developing symptoms, I lived in London, UK, stayed indoors 90% of the time (whether at home or at work), and never really made it to “green areas”.

[hopefulmama]

PaperTiger,

I am so sorry about your breathing trouble yesterday. That must feel really scary. I am sending you all my positive energy and hope that today is a much better day.

LDN is not expensive, that is one of the chief reasons that pharmaceutical companies aren’t undertaking large trials. The drug has been generic for a while and I have read of people getting their prescriptions for as little as $10 or $15 a month. I have read of a pharmacy called Skip’s that compounds it and sends it, and I think if you google low dose natrexone on the web you can even find a list of folks who will prescribe it in your area. I’ll try to do more digging online if I have time, to help. My prescription was $49 but it will last me at least two months, and was compounded by a local pharmacy.

As for the lyme, I wouldn’t write it off too fast. I almost wrote it off too and now that I’ve tested positive for borrelia burgdorferi and babesia microti (with no memory of ever being bitten and no rash) in addition to my mycoplasma antibodies, it seems more likely than I knew. Canada is not immune to tick problems, perhaps Montreal is too cold but I know for a fact that Vancouver is a hotbed of lyme activity. I’ve often wondered if I might have gotten my infection while hiking in the forest just outside of Vancouver.

That being said, my LLMD believes that I have carried this infection latently since college (which for me is about 15 years). I have a mild marking, sort of circular, on my foot that several dermatologists have looked at over the years (including one yesterday) and told me it was nothing to worry about. I showed it to my LLMD and she said, “When did you first start getting these markings?” and I told her when I was 19, and she said, “That is when you got infected.” I guess lyme can do things like that, and also bartonella which as of now I am negative on.

The main thing is that you may carry the disease very quietly in your body for many years – decades even – and then at some point if you get very stressed out (for me it was 3 pregnancies in 5 years, the death of my dad and a flu shot) your immune system goes down and then the bugs come out and do their damage.

Also, the borrelia in Europe is even more convincingly related to scleroderma than the borrelia here. I guess they are different types of borrelia infections. I’ve looked into this a lot on PubMed and in Europe there is a well-accepted, well-studied correlation between morphea and other types of scleroderma and their particular varietal of lyme. So the fact that you were in London makes me feel even more strongly that Lyme could be a player in your situation.

When I was driving home from the chiropractor this morning I was thinking to ask what you’ve been doing for your esophageal dysmotility the last few years. Are you sleeping elevated? From my understanding, the reason why the lungs get damaged over time is due to aspiration of acid reflux into the lungs while sleeping. The GERD sets the stage for the pulmonary fibrosis. The LDN has been really helping my digestive tract and is well documented through controlled studies to heal intestinal mucosa for Crohn’s patients. One of the main reasons I am doing so much to control my GERD (food combining, gluten-free, sleeping elevated) is to make sure that I don’t reflux myself right into a lung problem. For now I am avoiding proton pump inhibitors as they leech calcium from your bones and cause osteoporosis – something I cannot afford as I have multiple spinal injuries.

Ok well I’ve got to get back to my kiddos for now but I am hoping that any of this helps!

Take care,
A

[hopefulmama]

PaperTiger, I found this for you. I originally posted the entire abstract and then remembered that is against board policy. So, here is the link to the entire abstract on Pubmed – http://www.ncbi.nlm.nih.gov/pubmed/19096004:

Am J Respir Crit Care Med. 2009 Mar 1;179(5):408-13. Epub 2008 Dec 18.
Gastroesophageal reflux and pulmonary fibrosis in scleroderma: a study using pH-impedance monitoring.
Savarino E, Bazzica M, Zentilin P, Pohl D, Parodi A, Cittadini G, Negrini S, Indiveri F, Tutuian R, Savarino V, Ghio M.
Division of Gastroenterology, University of Genoa, Genoa, Italy. edoardo.savarino@unige.it
Comment in:

* Am J Respir Crit Care Med. 2009 Jun 15;179(12):1167; author reply 1167-8.

CONCLUSIONS: Patients with SSc with ILD have more severe reflux (i.e., more reflux episodes and more reflux reaching the proximal esophagus). Whether or not the development of ILD in patients with SSc can be prevented by reflux-reducing treatments needs to be investigated.

PMID: 19096004 [PubMed – indexed for MEDLINE

also (different paper)

“Is There a Relationship Between Pulmonary Fibrosis and GERD?
A prospective study has shown that 90% of patients with idiopathic pulmonary fibrosis have significant gastroesophageal acid reflux, as determined by 24-hour pH monitoring (Tobin RW, et al. Am J Respir Crit Care Med. 1998;158:1804). Genetic predisposition may be an important risk factor in idiopathic pulmonary disease, but other extrinsic factors, such as acid regurgitation, also can play a role. The family history of this patient, whose mother had idiopathic pulmonary disease, suggest that if the acid reflux, which may instigate epithelial mesenchymal reactions in the lungs, is not treated early, it could contribute to idiopathic pulmonary disease later in life. However, currently no evidence exists to support the use of PPIs to stabilize pulmonary fibrosis.”

I would say anything you can do for your GERD while healing can only help. I understand the motility dysfunction very personally… for me probiotics, food combining, going gluten free and sleeping elevated have helped sooooo much. I have had no further problems swallowing since July. My chronic cough has also gone away. Going to do all I can to keep it that way!

Best wishes!!!

[paper tiger]

Andrea, thanks for all the info. You are the jam!

I’m going on about 53 hours since I first noticed I was taking shallow breaths. I’m trying to tell myself that you don’t go from taking a walk symptom-free to panting in bed within the span of six hours without something else being the culprit, like a cold or something. Maybe I’m just deluding myself, though… who knows?

I’d only just recently learned about the GERD and pulmonary fibrosis link, so a week ago I went and got myself a prescription for a PPI from my GP. I am meant to do a full pulmonary function panel on Monday and I have an appointment with my pulmonologist in mid-Dec. He wants to stick me on Cytoxan and I was going to show up and say “Hey, why don’t we try a PPI, NAC and less toxic methods first?”, but that’s when I thought I was still doing okay. Just a few days ago, the idea of going for an hour-long walk was no big deal. Today, no matter how little I do, I can’t catch my breath. I don’t even understand how that’s possible!

I want to make dietary changes but right now I’m eating as I normally would because I’m about to have my blood tested. In a couple of weeks, I’m going to have an infected root canal pulled. I’m trying to cover all my bases… it’s just a bummer trying to do anything when you literally cannot breathe!

The thing I realised this morning though is that if I had my first Raynaud’s attack on January 3rd of 2008, it doesn’t mean my illness started then. For my finger to turn blue on January 3rd, I probably needed to have had deterioration happening at a less obvious level even before then. I was always really fixated on the idea that it all started then, but odds are, I only started having visible symptoms then. So you’re right, I should test for lyme just in case.

Again, I appreciate all your research. You’re a dream! I’ve been taking doxycycline on and off for awhile, but have been on Minocin steadily since mid-Sept. I just need a sign that something’s working and then perhaps I’ll be able to put my mind at ease.

Tracy

[hopefulmama]

Tracy,

I’m so glad to hear you are going on the PPI, and if you have trouble swallowing pills (as I do) I know they can offer you Prevacid or Zegerid. I have taken Prevacid in the past (it caused extreme nausea for me but in your case if it helps you to begin breathing better, that sounds like a worthwhile tradeoff) and although I haven’t tried the Zegerid yet it is basically Omeprazole mixed with baking soda and you dissolve it in water and drink it. Any GI can prescribe it for you, and I’m sure they would based on your documented esophageal problems.

Sleeping elevated, if you aren’t already, is something worth considering. The proton pump inhibitors will take the acid out of your reflux, but they won’t stop the reflux from entering your esophagus while you lay flat. The reason they prescribe the acid suppressants is so that you won’t get damage to your esophagus from the acid. But when you have distal smooth muscle dysfunction (which is very common in scleroderma, and I have it too – whether I have scleroderma or not) your LES muscle is probably not working correctly to keep the sphincter closed between your esophagus and your stomach. So, there will be fluid flowing freely from your stomach through your esophagus even while on the PPI… it doesn’t actually strengthen the muscle, it just suppresses the acid. So, if the main problem of pulmonary fibrosis comes from aspirating reflux into your lungs while you are sleeping, it stands to reason that even on the PPI, you will still be aspirating reflux. That is why I sleep elevated, so that gravity will be on my side. I reckon that the darn reflux can’t run up a hill LOL 😀

Using pillows alone for elevation does not work well. You need a special pillow designed to be healthy for your back and a certain gradual elevation from your mattress. I purchased one over the internet for about $100 and it was so uncomfortable, so I ended up sticking it right under my mattress and now the entire mattress elevates that 8 – 10 inches and then I use a thin pillow also. There are better pillows out there, the one I got was via MedSlant and honestly I am not that impressed – although it is less expensive and portable – but if I were to get a new one, the kind I think looks better is the prop up pillow because it has memory foam and also it includes two supports. Or you may be best off just raising the head of your bed, using blocks underneath. Anyway, I think this action is most likely to reduce continued aspiration of reflux, with or without the acid.

Meanwhile, I think it makes sense that you do whatever you can to keep on breathing (cytoxan if necessary?) to give you enough time to let the antibiotics do their work. I think AP is supposed to be pretty low and slow, and often it takes years to get a response? so what you need now is time. To buy that time I really think LDN might be called for, as it is good at slowing progression of autoimmune diseases. Then beyond that, the lyme testing is a good idea and you might look into figuring out whatever other imbalances you may have going on.

Hang in there. The main thing is, you are not alone in this. You have all of us, and you also have youth on your side. Together we will all work to figure out what the right solutions are to re-balance your body and immune system. Are you working on rebuilding your immune system at all? I think that is a really big part of healing – the probiotics, transfer factor, etc. And if you are taking minocin consider adding a saccharomyces bouillardii to your protocol because it is really great at staving off clostridium difficile from antibiotics… you definitely don’t need any more challenges than you have!

One thing that might be helpful from this point would be for you to keep a little journal showing what you’re eating, what meds you are taking, and how you are feeling each day. It may be easier for you to track stuff that could set off episodes or new symptoms. It also might help you figure out if you are herxing, and then in the future you will have sort of a sense of how/when herxes happen for you and your typical path to recovery from them. (LOL, I need to keep one of these journals too! )

Ok, I am sending you good thoughts. Please keep us posted. Tracy I really believe you are going to be ok, even though I know the breathing thing must be absolutely terrifying. Don’t give up and leave no stone unturned. The answers are out there and we’ll all keep working to find them.

A

[Michele]

Lung involvement was part of my major herxing. Air hunger and air starvation are other descriptors. My air hunger also came with rib cage pain or chest wall pain. It was certainly made worse by herxing and it didn’t take much antibiotic to kick off a lot of air hunger. A few years ago some special people on this board kept pointing me toward lyme and babesia in particular. Babesia causes air hunger. Once I found a capable lyme doctor, she found the Babesia. There are multiple strains of Babesia (ie. microti, duncani, WA1, etc.) I would encourage you to not rule out lyme and it’s nasty coinfections. Not enough is known about how wide spread it is. Find a doctor that truly specializes in Lyme. ILADs docs are highly recommended.

Hope you feel better soon!!!!! The air hunger and rib cage pain was terrifying!!! And my PFT tests were showing up as ok!!! You may have something else going on, but I thought you may want to hear my symptoms of lung involvement to compare notes.

Michele

[paper tiger]

I just got back to everyone who was so kind as to PM me this weekend. Turns out I was enjoying my first ever anxiety attack. The moment it occurred to me that I might simply be experiencing anxiety overload, I began breathing more easily. Air hunger is PRECISELY what I felt, though.

Nonetheless, what this leaves me with is knowing how bad my lungs COULD get. I never want to feel that way again. I was pretty committed before, but now I am definitely committed to reversing my lung damage before it gets there.

May I ask how long it took you to see real improvements with your lungs? Or for the herxing to stop affecting your lungs?

[mschmidt]

Tracy,

I posted a long response to you last night, and hit send but, it got lost because Comcast had a HUGE outage in Chicago and parts of Indiana last night. I was SO upset 🙁 👿 and couldn’t do anything about it. I wanted to tell you how sorry I am that you are going through all of this right now. I didn’t have “documented” lung involvement with my SD but, I can tell you that it was heading in that direction for sure. I remember feeling like my chest was really heavy, and I couldn’t take a deep breath without feeling like something was “rattling” inside my lungs–almost like the wheezing of a smoker. I, too, had air hunger, and was totally freaked out because my breathing felt heavy and shallow. Even though my PFT and lung scans were normal, I was very, very scared. When I went to see Dr. F in March of 2009 (6 months after diagnosis, and 3 months after starting Minocin daily, and 1 five day round of iv’s w/Dr. S), he insisted that I immediately get on a PPI, and elevate the head of my bed. I was very hesitant to get on anything for GERD because of all the bad stuff I read about being on it long term. However, when Dr. F told me that GERD could do permanent damage to my esophagus, and that even without horrible reflux, I could have acid dripping into my lungs if I didn’t elevate my head/neck, it scared me enough to do exactly what he said. I’ve slept with a wedge pillow (believe it or not, I buy mine at Bed Bath & Beyond for about $30, and it lasts about 4 months) since then, and was only on my PPI for a year. I weaned off of it almost a year ago, as well as went completely gluten and dairy free, and gave up my morning coffee. I’m a tea drinker now, and occasionally will indulge in espresso or coffee, without ANY reflux issues whatsoever. I think I’m really lucky because I listened to Dr. F and made sure I killed the acid mess, and esophageal issues early on thus, preventing any damage there. I couldn’t even go near citrus, spicy foods, etc for almost that entire year. Now, I can honestly say I can eat any level of spice, without experiencing any reflux issues. I don’t do it everyday but, I can do it. In addition to my diet modifications, I also try to eat as alkaline as possible, and found it’s important to know what combinations of food to eat to prevent acidosis in the body. I’m on systemic enzymes, as well as LDN, lots of probiotics, and other supplements.

Sounds like you have some doctors that are accessible to you, and believe in AP–that’s half the battle, and I encourage you to get what you need from them. You are SO young, and have such a great chance of recovering from this–even though I know right now you may feel overwhelmed. One of the best pieces of advice I got in the very beginning of my journey to wellness was that it’s better to know WHAT you’re up against, than plateau later, and find out Lyme was in the mix. I was very skeptical at first about the whole Lyme connection but, I have to say, after getting tested and treated early on, I’ve made some remarkable progress in a short amount of time. I can’t even tell you how many people I talk to on a weekly basis that have SD, RA, and other AI diseases, and also have Lyme in the mix. (I’m also on the board of directors for a Lyme Foundation so, I talk to a lot of people dealing with this crazy disease) For me, getting treated early and aggressively for both SD and Lyme has been life changing for me.

Please feel free to PM me with any questions you have. And, please keep us posted on how you’re doing.

Andrea–you’re an angel! What great advice you gave over the weekend.

[Michele]

Hi Tracy,

Wow! Your feeling of being anxious reminded me that when I had my first big herx I ended up going to the ER by ambulance and having oxygen because I felt like I couldn’t breathe!!! The ER doc diagnosed it as a panic attack and prescribed some anti-anxiety medicine. 😯 I opted to not take it. It was a day or so before I went to Ida Grove to see Dr. S; so I decided to see what he said about the reaction. I really didn’t think it was an anxiety attack in my case. I knew it was a herx, but didn’t know how to manage the herx. I’ve had air hunger in various forms of herxing since then. And Sheesh! Who wouldn’t feel anxious if they felt like they couldn’t breathe???

Knowing what is triggering the air hunger was really the piece of information I needed before progressing on a helpful treatment. Babesia treatment is different than AP. Though, it was certainly in my first weeks of AP and a 50 mg dose of Minocycline that caused the herx that put me in the ER. You asked how long it took before I didn’t feel air hunger… that improved slowly over the last 3 years. I haven’t experienced it in a few months now, I don’t remember the last attack specifically. That’s good news! 😀 My rib-cage pain hung on longer than the air hunger…and that is now abating. I hope that trend continues! Though, my blood tests still show high levels of Babesia in them so I know this battle is yet to be won.

I can sure sympathize with you over the symptoms of air hunger!!! It sounds like you have some other things going on, so keep digging around for answers. The GERD possibility is something I did not associate with my air hunger, so it looks like there are more variables to consider.

Michele

[hopefulmama]

PaperTiger,

I’ve been looking further into the various options for what causes pulmonary fibrosis and what can make it better. I’ve been asking a lot of questions to our amazing volunteers who are so kindly and patiently answering them for me, and in so doing, I am getting a better understanding of what you are up against and how to make it better.

Parisa has mentioned the benefit of N-AC for lung function so I did some research tonight and found really encouraging news. I wanted to share it with you because I know how worried you are and this is really a bright hope!

http://www.ncbi.nlm.nih.gov/pubmed/19860915
Respir Res. 2009 Oct 27;10:101.
Lung function in idiopathic pulmonary fibrosis–extended analyses of the IFIGENIA trial.
Excerpt:
“The randomized placebo-controlled IFIGENIA-trial demonstrated that therapy with high-dose N-acetylcysteine (NAC) given for one year, added to prednisone and azathioprine, significantly ameliorates (i.e. slows down) disease progression in terms of vital capacity (VC) (+9%) and diffusing capacity (DLco) (+24%) in idiopathic pulmonary fibrosis (IPF).”

also this:

http://www.ncbi.nlm.nih.gov/pubmed/16306520
N Engl J Med. 2005 Nov 24;353(21):2229-42.
High-dose acetylcysteine in idiopathic pulmonary fibrosis
CONCLUSIONS: Therapy with acetylcysteine at a dose of 600 mg three times daily, added to prednisone and azathioprine, preserves vital capacity and DL(CO) in patients with idiopathic pulmonary fibrosis better than does standard therapy alone.

So, run out to that store girl and get some N-AC!!! Or if you aren’t up to it, get a friend to do it for you. (I wish I lived closer, I’d get it for you asap!) I know they sell it at a variety of stores – Parisa mentioned GNC and I have seen it sold at Whole Foods Market. I am going to see if I can get my LLMD to get some made up for me in a transdermal cream, as they give it that way too. Sounds to me like N-AC can buy a person 9% more time per year to work on de-bugging from their mycoplasma and other viral and bacterial friends.

Other than that, it is a good thing that you are on a PPI to protect your esophagus from further damage 😀 and I really hope you will look into lyme. I have made a list of all of the folks I know of who are now in remission (or really close to it) from scleroderma and every single one of them has been diagnosed with lyme, or basically follows a lyme antibiotic protocol.

Take care, Tracy – and I hope these studies about N-AC make your day. They definitely made mine!!! 🙂 Thank you so much Parisa, Maz and Maria tonight for your wonderful wisdom and help. You are angels and I thank you in advance for having saved my life (along with all the other amazing volunteers and members of this board) over the past five months. Thank you!!!

[Kats]

Hi Paper Tiger,

I don’t claim to know anything about pulmonary fibrosis, but while researching a systemic enzyme Serrakor NK I was struck by how many testimonials for this condition there were.

http://www.biomediclabs.com/inc/sdetail/22463 (click on testimonials)

People seem to be having great success with it where all else has failed for them. I ordered this product for my RA and it was shipped on the same day and in Canada within a week.

Good luck.

Kats

[Author]

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