posted
Has anybody had a diagnosis or problems with pulmonary hypertension ? I'm really scared if anybody is living with this with their Lyme please let me know
Posts: 28 | From Weston, Florida | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Prior to being dx. with Lyme, I was seeing a Pulmonologist.
He ordered a doppler cardiac ultrasound on me to rule out pulmonary hypertension.
Thank God the test was negative.
However, he wanted to dx. me with congestive heart failure next.
Skipped him. Went on to cardiologist. Had nuclear stress test done.
Was told my heart is "perfect". None of them knew anything about Lyme
And/or co-infections.
Have you been diagnosed with this?
If so, what test did they use to dx. it?
Sending you positive thoughts and prayers...
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Don't know if this will help or not, but...Does your husband have post-nasal drip?
I have been living with it every day for years. I have had a dry cough for years and shortness of breath. I just thought these were Babesia symptoms.
I recently went to the cardiologist per my LLMD to check on my heart and the doctor seemed very concerned with my dry cough and shortness of breath. I kept telling him that was from Babesia, and then he asked if I had post nasal drip.
I told him every single day! He said I need to go to an Ear, Nose and Throat specialist and figure out if I have allergies, because post nasal drip will cause fibrosis of the lungs and other nasty lung conditions!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
I wish it were as simple as postnasal drip/allergies. No, his pulmonary fibrosis didn't come on until he suddenly got sick with Lyme/Babesia. At this point, it isn't progressing and there hasn't been any active inflammation for months.
I'm hoping we're able to reverse the fibrosis with doxy and enzymes. Several people at the roadback site that have scleroderma have reversed their fibrosis with antibiotics.
Posts: 984 | From San Diego | Registered: Nov 2006
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Itsy_bitsyone
Unregistered
posted
A lot of times once there is fibrosis, you can stop it but not reverse it. Because they are scars. However, I have fibrosis from Varicella Pnemonia and I'm still up and around-15 years now...
Here's what happens. The immune system is an amazing thing! When mircobacteria and viruses (lyme, chickenpox..other TBI or any microbacteria/virus) infest the lungs, the lungs "capture" the little suckers in granulomas, and kill them. Unfortunately, if you do not treat the granulomas in the inflammation stage, they scar, and leave the damage. THis doesn't mean you will 100% end up with hypertension or anything other than decreased diffusion. Of course it is a possiblity if the fibrosis continues or gets very very bad...you'll get more information on this reading about microbacteria and sarcodiosis than you will TBI's...since the powers that be probably do not recognize Lyme as a microbacteria that can do this. Of course, it likely is! There's always a possiblity that mine wasn't from pnemonia after all...
This is where the fine line between sarc and lyme and microbacterial infections exisits. A REAL dx of sarc comes when they can prove the lungs attack "nothing" and it is an overstimulated autoimmune responce. Many viruses and microbacteria infections get misdiagnosed as sarc because the same thing takes place. Real Sarc can be controlled with slowing the immune system. Microbacteria have to be killed with antibiotics. Very fine line...but the wrong therapy (treating one as the other) can be deadly, as if both diseases do not have enough potential to do it on their own!!
Either way, pulminary fibrosis is the immune system at its best...and its worst. I wish you luck...but I would definately go the antibiotic route...and I would definately do the the PFT's the pulminologist wants to do, so that you can be 100% sure what is going on.
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Did you get the PFT's done yet? They suspected pulmonary hypertension in me, due to low DLCO (lung diffusion) on the PFT, and an exercise test showed a cardio limitation, but when I finally got the nerve up to do a heart catheterization, the pulmonary artery pressure was NORMAL. No pulmonary hypertension.
Now they are suggesting a metabolic myopathy, as it could cause the low DLCO and exercise limitation.
Wonder if lyme plays a part in this. I've been trying the chronic fatigue supplements and I think they are helping but I am not sure of dosages yet.
Let me know how the PFT looks.
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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