Pulmonary hypertension

[redrock]

Hello, everyone, I am new here. I have CREST. The symptoms I have at this point are Raynauds, a few red dots, and an advancing case of pulmonary hypertension. My echocardiogram 6 months ago showed my pressure at 35 and now its up to 41.1. So I am getting very worried about the progression of my disease. I currently take low dose naltrexone, but it has not stopped the increase in my pulmonary hypertension. So I have found this AP protocol and I am wondering if this will work for my PH? Does anyone here have PH and has the AP helped?

[lynnie_sydney]

Welcome to the Road Back forum redrock. You are in the right place for support, wisdom and experience with AP, though we are sorry you've had to seek us out. There will be others with your diagnosis (dx) who will chime in here. However, you might like to start with using the search function right above. Type in 'pulmonary hypertension' – and alot of previous posts on this will come up. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[jlc6166]

My wife's pressure went as high as 32.  It is back down in the low 20s.  AP works!!!

Jack

[redrock]

Did she have to take any other medication to reduce the pressure, or did AP alone do it?

[jlc6166]

She was on several BP meds for 2 years.  Nothing for PH specifically.  She has been off all meds for BP since the beginning of April.

[redrock]

That is wonderful news!

[JBJBJB]

Do you cough a lot?

My doctor found my X-ray was very cloudy back in Jan 2008. CAT Scan was followed up and one doctor insisted I had pulmonary fibrosis. A clinical professor of a medical school later believe it was not fibrostic but he worried about pulmonary hyp. I did many tests like you did and I was found my left heart muscle was slightly elevated.

I just had another X-ray done. The doctor believes my lungs have not got any worse since Jan 2008 after I was on antibiotics. Three antibiotics seem to help me a lot. Zithromax, Clindymincine (IV), perhaps Flagyl. 

After 3 months Flagyl, I do not have shortness of breath.

 

 

[mkbeeliever]

[user=2547]redrock[/user] wrote:

Hello, everyone, I am new here. I have CREST. The symptoms I have at this point are Raynauds, a few red dots, and an advancing case of pulmonary hypertension. My echocardiogram 6 months ago showed my pressure at 35 and now its up to 41.1. So I am getting very worried about the progression of my disease. I currently take low dose naltrexone, but it has not stopped the increase in my pulmonary hypertension. So I have found this AP protocol and I am wondering if this will work for my PH? Does anyone here have PH and has the AP helped?

Hi Redrock!

I am terrible with dates/times etc.  I wish I would document better!
However, My mom was diagnosed with Pulmonary Hypertension via right heart catherization about a year ago.  She had a terrible time breathing – She was given oxygen for in home use and the travel oxygen if she left the house.  Her breathing tests were not good.  She had just started taking Minocycline.  She only used the oxygen for maybe 2-3 months. She has not used it since.  She started Zithromax on 12-31-09.  You should also know that she takes Letairis every other day.  However, she stopped needing her oxygen way before she started her Letairis.  It took her a while to be approved for this drug (MONTHS in fact) so she has only been taking it since March or April – but by that time she's stopped her oxygen all together. 

SO, to answer your question…Will this work for your PH?  I really believe it will but everyone is different.  I know it worked for my mom.  In fact she may not even need the Letairis at all now, but we have not had any medical testing to prove that unfortunately. 

Blessings,
Michelle

[redrock]

[user=266]JBJBJB[/user] wrote:

Do you cough a lot?

My doctor found my X-ray was very cloudy back in Jan 2008. CAT Scan was followed up and one doctor insisted I had pulmonary fibrosis. A clinical professor of a medical school later believe it was not fibrostic but he worried about pulmonary hyp. I did many tests like you did and I was found my left heart muscle was slightly elevated.

I just had another X-ray done. The doctor believes my lungs have not got any worse since Jan 2008 after I was on antibiotics. Three antibiotics seem to help me a lot. Zithromax, Clindymincine (IV), perhaps Flagyl. 

After 3 months Flagyl, I do not have shortness of breath. 

 

 

No, I don't really cough. I never knew I had PH til a routine echocardiogram revealed it. And the pressure has gone up a lot quickly. I can run 3 miles in 30 minutes, so I don't think I'm doing all that bad, although I've never been that good with extended cardiovascular activity, even as a kid. Unfortunately, I had a very bad reaction to Flagyl years ago and won't try it again. Hopefully one of the others will help.

[redrock]

[user=1335]mkbeeliever[/user] wrote:

[user=2547]redrock[/user] wrote:

Hello, everyone, I am new here. I have CREST. The symptoms I have at this point are Raynauds, a few red dots, and an advancing case of pulmonary hypertension. My echocardiogram 6 months ago showed my pressure at 35 and now its up to 41.1. So I am getting very worried about the progression of my disease. I currently take low dose naltrexone, but it has not stopped the increase in my pulmonary hypertension. So I have found this AP protocol and I am wondering if this will work for my PH? Does anyone here have PH and has the AP helped?

Hi Redrock!

I am terrible with dates/times etc.  I wish I would document better!
However, My mom was diagnosed with Pulmonary Hypertension via right heart catherization about a year ago.  She had a terrible time breathing – She was given oxygen for in home use and the travel oxygen if she left the house.  Her breathing tests were not good.  She had just started taking Minocycline.  She only used the oxygen for maybe 2-3 months. She has not used it since.  She started Zithromax on 12-31-09.  You should also know that she takes Letairis every other day.  However, she stopped needing her oxygen way before she started her Letairis.  It took her a while to be approved for this drug (MONTHS in fact) so she has only been taking it since March or April – but by that time she's stopped her oxygen all together. 

SO, to answer your question…Will this work for your PH?  I really believe it will but everyone is different.  I know it worked for my mom.  In fact she may not even need the Letairis at all now, but we have not had any medical testing to prove that unfortunately. 

Blessings,
Michelle

Thanks, I am hoping for the best.

[Cat]

Hi also have CREST with ph.  I just started on AP treatment in May and felt great for the first month the second month has been tough my labs are wacky (I have high hematocrit and hemoglobin, in the 40s).  I have been on oxygen for nearly 7 years and was told by my pulm. and card. that I need a heart/lung transplant.  I also have primary biliary cirrhosis (another side effect of CREST).  I am hoping that I am just herxing right now as I can barely keep my eyes open and I seem to be hungry all of the time (which for me is very unusual, normally I have to force myself to eat!) I am not giving up hope though!  My fingertip ulcers have nearly healed.  I do have skin discoloration but since I'm pale with freckles anyway it doesn't really bother me.:roll-laugh:

I recently went to the Cleveland Clinic (they are supposed to be the best in cardiac care) and left severely disappointed as the Dr I saw frowned on the AP and even gave me an article downplaying its effectiveness.  Needless to say, he didn't give me much hope.:headbang: 

I hope that you have “caught” this soon enough so that you don't get to this point.  I would advise anyone to stay with the Dr that is willing to work with you and not get discouraged.  It isn't easy I know.  I wish you well, and whatever you do don't give up!…

[redrock]

Cat, I'm really sorry you're having such a hard time of it.  And it's too bad about the doctor frowning upon AP. I am meeting with an AP doctor on Monday and hoping to get started with the treatment, and then Friday I'm seeing a PH specialist at the Cleveland Clinic in Florida. I'm hoping he's not going to take the wind out of my sails about this treatment, as it's really the only thing that is giving me hope right now. The fact is, I feel pretty OK, just seem to be getting some slight symptoms, and I can't quite grasp that this is all supposed to go downhill really fast.

[mkbeeliever]

[user=2547]redrock[/user] wrote:

Cat, I'm really sorry you're having such a hard time of it.  And it's too bad about the doctor frowning upon AP. I am meeting with an AP doctor on Monday and hoping to get started with the treatment, and then Friday I'm seeing a PH specialist at the Cleveland Clinic in Florida. I'm hoping he's not going to take the wind out of my sails about this treatment, as it's really the only thing that is giving me hope right now. The fact is, I feel pretty OK, just seem to be getting some slight symptoms, and I can't quite grasp that this is all supposed to go downhill really fast.

Of course everyone is different in their approach and their relationship with their doctor.  But, here's the deal, you are in control of your own treatment.  DON'T LET HIM TAKE THE  WIND OUT OF YOUR SAILS!  You are in control of that.  You know what you want to do and you are excited about it.  Doctors are consultants in your health care, they don't rule the roost.  You tell him how you want to be treated, you tell him what you are doing and that you hope he'll be in your corner to support it, but if he is not, then so be it and move on.  This is just too important!  My mother was failed by the medical community time after time after time because she did not question, research, stand up for herself or get bitchy every once in a while.  She was just relying on them to take care of her.  Well, we now know you can't rely on anyone to take care of you except those who love you and yourself.

Blessings,
Michelle

[SusanSD]

Cat,
     I hope the doc didn't show/cite this article:

Article:            Mayes, M. D., O?Donnell, D., Rothfield, N. M., & Csuka, M. E. (2004). Minocycline is not effective in systemic sclerosis. Arthritis and Rheumatism, 50 [/i](2), 553-557.
 
  Synopsis
            This study investigated the effect of minocycline therapy on skin thickness in 31 adults with early, diffuse systemic sclerosis. The primary outcome measure was the modified Rodnan skin thickness score (MRSS). Out of the 31 participants taking 50 mg minocycline twice daily, 17 completed the one year study. The control group consisted of 68 participants in the D-Penicillamine trial (second year?s data used). Mayes et al. reported ?no statistically significant differences in the change in skin scores between the minocycline-treated subjects and subjects previously reported in the D-penicillamine (D-Pen) trial.? The researchers concluded that the degree of change in the MRSS observed in the minocycline treated individuals was similar to what they would expect in the natural course of the disease, and therefore minocycline was deemed not effective therapy for systemic sclerosis. [/b]
 
            However, when we examine the study and data more closely, we find several methodological flaws and indeed, some of the data suggests that minocycline is effective in improving skin thickness, contrary to the researchers? conclusions.
 
Point #1:    High dropout rate in the minocycline group skews the results of the Intent To Treat (ITT) analyses towards no treatment effect
 
              It is not the researchers? fault that 14 out of the 31 minocycline group members dropped out, but it is misleading to include the 14 dropouts? data in the analyses, when the mean time of the dropouts in the study was 4.6 months. Anecdotal evidence suggests that it takes up to 6 months to notice improvements, so chances are that the 14 noncompleters? data did not show any improvement. Although it is understandable that the researchers want to use all data points possible, when there is a high number of dropouts (and this study?s dropout rate was 45%), ITT analyses will underestimate the treatment's effectiveness. If the researchers truly wanted to know the effect of one year minocycline treatment, they would have focused on the 17 minocycline completers? data.

      The above is part of a critique I wrote of Maye's article. Looking at the data in the article and calculating statistics, I did find some promising results of minocycline when comparing the minocycline completers to noncompleters.

     Best,
     Susan

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