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I have been suffering from En coup de sabre on my face and scalp for 19 years.
on may 2017, I found lyme doc, and had tests for lyme and mycoplasma, and found that I have both lyme and mycoplasma.
I started to take azithromycin 250mg a day for 2 months, but symptoms still progressed. minocycline 100mg a day was added and it has been about 4 months since I have started AP. However in spite of AP, I still believe my en coup de sabre is slowly progressing. I had german lyme test again 3 weeks ago to see if AP is working for my body. After the test, my lyme doc said I should continue using antibiotics since I still have lyme inflammation. My skin doc prescribed me cellcept 1mg a day on the other hand, but I did not take it since I would like to see if there will be any changes through AP. I told my skin doc that I would like to try AP first and he said okay. Lyme doc agreed and asked me to try AP first. But now after I had a german test, my lyme doc said it will be also helpful if I take cellcept as well. I am confused and I am afraid I need to take lots of medications. Cellcept is very very expensive too. Is my body condition complex than any other? I thought AP and cellcept are opposite. Anyone using both AP and cellcept? I am very frustrated and nervous. help pleaseHi
I totally understand how your feel!
I have been on cellcept the past 2.5 years. I have not stabilize t all with my lung fibrosis, hence I just begun AP.
I am taking 1500 mg of cellept in Tandem just in case for now.
My dlco is pretty lowCellcept is just the latest in a long list of drugs for scleroderma that has very questionable results —I have seen so many come and go that its a shame that the medical community really hasnt come up with anything as nearly effective as antibiotic for the treatment –yet the vast majority are doctors remain in denial about the effectiveness of minocycline in treating scleroderma without being able to offer anything more effective –as to lung fibrosis –Tracleer has shown promise !!!!
Hi All,
Just bringing forth my experience with CellCept for Lung Involvement. I began having shortness of breath about a year or so ago, CT scans showed progression of ground glass opacities in both lungs. My Rheumy put me on Cellcept, 1000mg, which is really not much at all, but obviously it was enough to do the job. My followup test showed a nice improvement, including DLCO, so I was taken off Cellcept. So far so good, maintaining improvement so far. Cellcept does not work for everyone, nothing does, but it is a very good drug and contrary to all the side effects listed as possible, not many people get much, worst for me was some hair shedding,but it all came back after quiting. Btw, I am now on AP also and that has worked out well too. Good luck!
Liz
Hi Liz
How is your shortness of breath ? Can you climb stairs ? Do you know your FVC or Dlco. Are you on a specific diet ?
TIA
We’re on the same page it seemsHi Liz
How is your shortness of breath ? Can you climb stairs ? Do you know your FVC or Dlco. Are you on a specific diet ?
TIA
We’re on the same page it seemsRedLizzy, that us such wonderful news! Thank you for kindly sharing your improvements with us. It sure does help to inspire newcomers, wondering if the treatment will help them. Well done, too, for your amazing self advocacy to find supplemental supports to help you. It’s not easy when sick, but we see it, over and over here, that the folks who stick with AP, do their homework, find their root causes, and do whatever it takes to get themselves well again – do!
Hi Marla,
Are you taking N-acetyl cysteine (NAC)? It’s an important supplement with antioxidant, anti-inflammatory, and antifibrotic properties.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil
Do you have scleroderma ? Lung fibrosis ? I have the NAC but honestly with all that I take somehow I rarely take the NAC as I understand you need to take so many throughout the day.some people take 6-10 per day.
My update is encouraging
I began in July 50 mg of mino in tandem with 1500 mg of cellcept. In mid September Dr increased the mino to 100 mg 4x a week
My PFT 10 days ago had an improvement of 5% which is still very positive. My pulmonary Dr and I were very pleased!! I also have been gluten sugar and dairy free since the beg of the summer.
How about yourself Phil?
What meds and supplements do you take ? Thank you for your suggestion.
MarlaHi Marla,
No, I don’t have scleroderma. As for NAC, I believe that the “standard” or common dose is 600 mg twice a day. But even 600 mg once a day is better than not taking it at all. Yes, I’m sure that there are probably people who take NAC multiple times per day, but I am not sure that’s such a good idea. I’d be reluctant to do that without a doctor’s prescription or direction. By the way, NAC is available in the form of “quick release/sustained release” tablets — those may be a viable alternative to taking NAC multiple times per day.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Marla
I have never heard of taking NAC multiple times a day. 600mg morning and night is the usual like Phil says, or just 600 at bedtime if you can. It is definitely one I would never miss personally if I had lung issues. I do not have but always take it anyway or a product called Liver Protect by Xymogen that has NAC and a few other things in it. I have heard amazing testimonials about NAC for lung issues and I have also heard of a few drug interactions so that is something to check into.
cheers
kateSystemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C
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