posted
I was diagnosed in 2008 with Lyme, Bartonelli, and Babesia. Lyme specialist thinks I've had Lyme for 26years.
Currently, I've been having some pulmonary symptoms and was hoping someone could direct me to the right reference (i.e. medical journals etc) to bring to the pulmonary specialist and cardiologist.
Oxygen levels dropping to 88% with exertion (after 6 min stress test)
Pulmonary function test showing decreased diffuse capacity and lung volumes
Echocardiogram showing increase of blood pressure in tricuspid valve of 10% in 4 months
Mild Valve regurgitation in 3 out of 4 valves in a year.
Symptoms of extreme shortness of breath with exercise, dizzy, faint, chest pain, tingling on left side of body, confusion, and loss of depth perception after exertion. Swollen abdomen, blood and mucus in stool, nausea, swelling in legs. Wake up gasping for air, cough with and without mucus, and severe headaches. Not sure if it's related...benign tumor removed under ear.
The pulmonary specialist I'm seeing thinks it's pulmonary hypertension caused from pulmonary fibrosis but the cause is still unknown.
Any help would be greatly appreciated! I'm waiting to have a stress echo and may be a heart catheterization test afterwards. Any information to give the pulmonary hypertension specialist at the Heart Hospital would be quite helpful!
Posts: 11 | From New Mexico | Registered: Oct 2010
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joalo
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posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I'm glad you posted! Keep checking and researching, someone will have some suggestions for you. I wish I knew more about pulmonary stuff....
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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onbam
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posted
A report on what included Lyme-induced pneumonia. They found Bb in the sputum.
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Is your alpha one antitrypsin tested?
I think it is from infections,but can be from any infection not just lyme like mycoplasma pneumonia cpn cpnhelp.org very important parasites EBV
I am doing better on doxy, and cpn treatment and parasite treatment and antivirals. Have not retested my lungs but think all the testing is not helping. Probably treat everything bacteria, viruses and parasites.
Posts: 1834 | From US | Registered: Oct 2008
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Dawn in VA
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Ditto on the Chlamydia pneumonia- I would check that out. From personal experience, I've found that many pulmonologists don't check for it or believe that it's more common than the odd textbook notation, but proper Tx helped me a lot.
I don't know about the cardio stuff, but I definitely hope that you find help and answers. Just an FYI, my LLMD made me do a bubble test to make sure I didn't have a hole in my heart (thankfully I don't) even though I did not have any symptoms b/c she says that she's seen several Lyme folks who have. I don't know if it correlates to what your test results indicated; just wanted to toss that idea out there.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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karenl
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Yes they do the bubble test because some people with bugs and neuro symptoms have holes in the heart. I think it is better to treat, you cannot have heart surgery now. For cpn is a blood test available.
Posts: 1834 | From US | Registered: Oct 2008
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posted
I've also been told there might be a link between Babesia and pulmonary complications. I've been researching that and have found a few research articles on the topic.
They all say it's for early stages and it's thought I've had Babesia for many years now. I have some reading ahead of me to do! :-)
Posts: 11 | From New Mexico | Registered: Oct 2010
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posted
I had a test which showed mitral valve prolapse and pulmonary hypertension. This was not long after my lyme/babesia diagnosis. No previous trouble with heart or lungs, so at least in my case it was related.
Am wondering if you want any kind of heart procedure before you find out what treatment will cure. Have you had any babesia treatment? Bartonella also can affect the heart.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Yes, I've had previous Babesia and Bartonella treatment. I had been treated nonstop for Bartonella since my diagnosis in 2008. I've tried the treatment for Babesia but it caused severe side effects, I was unable to continue.
I only started the Lyme treatment in February of this year, two month before I started getting the heart and pulmonary issues.
I stopped all treatments (bartonella and Lyme) two weeks before I got bed ridden for two weeks...my heart rate stayed below 45bpm even after several cups of coffee.
The reason I stopped the treatment was because my abdomen started severely swelling and gained 20lbs of water in less than a week. I was vomiting up everything I ate for over a week and my liver wasn't detoxing the meds anymore.
I haven't been on the treatment since. My LLMD didn't want to put me back on treatment until my heart and lungs were ruled out.
I'm not sure how related the Lyme/Babesia/and bartonella are to the symptoms I'm getting. I was also on a high dose of ADHD meds for two years to help with the fatigue and depression, which can cause these issues as well. Also, I've had these tick borne diseases for so long not sure why now I'm having problems unless it has to do with me stopping the medication so suddenly?
Posts: 11 | From New Mexico | Registered: Oct 2010
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TX Lyme Mom
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posted
Another pulmonary disorder to consider is sarcoidosis. There are a few reports in the medical literature of Borrelia as a cause of sarcoidosis, but those reports were from other countries like China, to the best of my recolletion.
If it's sarcoidosis, there's a treatment on the internet called the Marshall Protocol (MP). Sarcoidosis patients are seeing great improvement and success with it, especially since sarcoidosis is considered to be a terminal illness otherwise.
Pulmonary hypertension is equally serious, too, and I'm not sure if there are any effective treatments for it -- in which case, you might prefer it to be sarcoidosis instead because at least there's an effective treatment for that. Whether the MP would be effective for pulmonary hypertension is something you would need to check into, but I rather doubt it.
A few Lyme patients have had luck with the MP as a last resort, but most LLMDs don't regard the MP as the best option for treating Lyme disease. Lyme and sarocoidosis together though?...Well, it might be worth a gamble, especially considering your lack of other good treatment options and also providing that it is sarcoidosis instead of pulmonary hypertension, that is.
I noticed that you mention Bartonella as one of your co-infections. Well, Bartonella is a granuloma-forming pathogen, and the MP was originally designed to treat granulomatous diseases, so the MP might not be a bad option for you afterall in light of the fact that you can't take heavy-duty antibiotics right now because of your liver involvement.
There's one more website where you can obtain professional nursing guidance with the MP. They have enough experience that they could probably tell you whether it would be helpful for pulmonary hypertension or not.
BoxerMom
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Member # 25251
posted
I've known of two patients with Lyme/Babesia and pulmonary fibrosis. One recovered completely with antibiotics. One is not in treatment for infections, but is managing the fibrosis.
Also know of one Lyme/Bartonella patient who had pulmonary embolisms. He did treat the embolisms, but is not treating for the Lyme/Bart.
TX Lyme mom: I've had a high resolution CT scan and it was normal therefore, no sarcoidosis. At least that is what the doctors tell me. They also said that even if the CT is normal doesn't mean there isn't anything there just too early to catch it. Not sure about that but I'm not a doctor.
I've been told the high resolution CT isn't the gold standard for diagnosing pulmonary hypertension, so that's why the want the heart catheterization test next. :-(
Correction: The doctors think it's pulmonary fibrosis of the pulmonary arteries causing the hypertension. Which could of been caused from possible pulmonary embolisms.
Is it possible I got these symptoms because I stopped the Lyme and Bartonella treatment abruptly? Last time I did that I was hospitalized for muscle tissue death.
Thanks for all of the information and I'll continue my research for my apt. next week.
Posts: 11 | From New Mexico | Registered: Oct 2010
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posted
Update: I've been diagnosed with pulmonary hypertension that only occurs during physical activity.
Doctors right now can't give me treatment because they don't know the cause. Basically, they have done all of the tests they can think of and they still haven't found an underline cause.
They told me all they can do is monitor me for now to see if the pulmonary hypertension gets worse.
Still researching and won't give up! :-) Thanks again for all the information and if anyone comes across anything, please let me know.
Posts: 11 | From New Mexico | Registered: Oct 2010
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