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Posted 2/6/2017 6:27 PM (GMT 0)
I was diagnosed with Lyme, Rocky Mountain Spotted Fever, Bartonella, chlamydia pneumonia, mycoplasma, and positive ANA 5 months ago. I've been seeing a LLMD since then which has helped a great deal. A couple of symptoms that I just can't shake are terrible chest pain/pressure (feels like someone is sitting on my chest), difficulty breathing, pain in ribs. I've been on Doxy since Sept. with the addition of Azithromycin since Nov. 29. I recently had EKG (normal), stress test (normal) and pulmonary lung function test (results still out). I'm really suffering and feel like going to the ER about every day. Locals Dr.s have no idea what's going on, of course. Can anyone help me or has someone bee through this? I'm getting scared and the more I read, the more overwhelmed and confused I get.
Posted 2/6/2017 6:56 PM (GMT 0)
I've been suffering with this so much since my last surgical procedure (unrelated to chest/breathing issues), that based on results from one of those full out breathing function tests I was put on oxygen for night use.

I saw some reference to lung damage from RMSF if Buhner's Healing Lyme 2nd edition, but understand that the tight band like feeling around the chest is usually due to Bartonella.

Doxy and the other abx did nothing to help this, nothing I do helps it, in fact just about everything brings out further breathing difficulties for me. I would wear a filtering mask, but they feel like their suffocating me.

I wish we both had answers, it IS scary and overwhelming.

Post Edited (julymorning) : 2/6/2017 12:00:02 PM (GMT-7)

Posted 2/6/2017 6:57 PM (GMT 0)
Hi Juju - welcome to our community!

I'm sorry you're suffering with the chest/lung/rib pain. That sounds horrible.

You have discussed this symptom with your LLMD? Which infection does he/she think it's from?
Rather than discuss with local Dr's (who have limited knowledge about Lyme and co's, I would talk to your treating LLMD.

Has he ruled out Babesia? I personally am not familiar with chlamydia pneumonia symptoms and mycoplasma...but I'm wondering if they cause those symptoms.
Posted 2/6/2017 6:59 PM (GMT 0)
Juju, I just noticed you are new here, so I want to welcome you! Please if you have some time, read through our intro at the top, "New to Lyme?...start here".

Have you considered looking into an LLMD for treatment, or would you be interested in a discussion of the various treatment avenues there are, some of which you can undertake on your own?
Posted 2/6/2017 7:00 PM (GMT 0)
I have had the feeling of vice grips around my ribs...and I have bartonella but no difficult breathing with it.

We encourage all new members to read through the thread at the top of the page titled: 'New to Lyme?..Start Here!" It's packed full of useful information.

Are you detoxing? If so, would you mind sharing what you're doing? That is crucial when treating these infections.
Posted 2/6/2017 7:03 PM (GMT 0)
Juju, maybe to help you sort out your symptoms from what you've been diagnosed with, and maybe some that were missed, here is a chart. Each type of infection has two parts, so halfway down there is a second set of symptoms for each infection.

www.lyme-symptoms.com/LymeCoinfectionChart.html
Posted 2/6/2017 7:10 PM (GMT 0)
I also wanted to mention that you've only been treating a few months with your LLMD...and it can take longer before you see results.

Something that you should be doing is detoxing. This will involve multiple methods on a daily basis. This will help alleviate symptoms of the herxheimer reaction by flushing out the toxins.
When we treat, the bacteria produces endotoxins when it dies off...these endotoxins cause inflammation resulting in an increase of symptoms, and also produces new symptoms.


Here is a link to detox ideas:

www.tiredoflyme.com/detox-methods.html
Posted 2/7/2017 1:02 AM (GMT 0)
I want to thank everyone for their responses! I appreciate the articles and charts to read. I'm really suffering and need help. I see my LLMD in one month and I've emailed her to discuss what has been going on. She suggested another supplement that's used to treat Babesia (even though my lab results were negative for that). Maybe this new supplement will work. I am taking several supplements to detox (Urinary Maintenance, Liver cleanse, Bowel detox supplements and a few others). I take detox baths with Epsom salt and hydrogen peroxide (I read this online). LLMD took me off of the Azithromycin because I have terrible ringing in my ears. I think that was used to treat Bartonella so now I don't know what's treating that infection. I saw my gynecologist today and she ordered a chest x-ray. If everything comes back normal, I will feel a little more at ease in some ways and just try to give this time. The only comfort I get is when I lie down. I've always been an energetic, upbeat person with a lot to do. This is hard! Thank you everyone!
Posted 2/7/2017 1:16 AM (GMT 0)
It IS hard. It just stuns us when we get hit with the infection(s), like overnight our lives will turn upside down from what we were doing to what we can't do......but keep your chin up and think positive that you'll get back your life eventually. Sometimes it does take a long time, certainly longer than the usual illness, but often more profoundly than many of the disorders we sometimes get incorrectly labeled with!

Always remember that our current testing methods are very insufficient in detection, particularly with the co-infections. Try to go on your symptoms as a direction for treatment, and remember those symptoms will change, can change frequently..
Posted 2/7/2017 1:24 AM (GMT 0)
Some other very good de-tox methods that are easy to integrate into a daily routine are drinking lemon water. Ideally 1/2 juiced lemon into about 32 ounces of filtered water. I personally slice or section them after scrubbing the peels with hot soapy water and rinsing, rather than just using the juice. Lemons are acidic, but our body is able to turn it alkaline when we consume them.

These infections tend to acidify our body, which works better if it's brought back to neutral ph.

Another easy daily detox is drinking a small amount of Bragg's Apple Cider Vinegar with the 'mother', in water, or however you like it, daily. I caution you against drinking it straight, it's quite strong if you aren't used to it.
Posted 2/7/2017 4:23 AM (GMT 0)
same to same feeling lasted about last 6 months.in my case this was side effect of probiotics(lactobaccilus)
Posted 2/7/2017 10:39 PM (GMT 0)
Thanks for the great advice! It's comforting to know I'm not alone in this!
Posted 2/8/2017 3:57 AM (GMT 0)
Hi Juju - I wanted to chime in on this one. I actually went to the doctor today for the very same issue - heavy chest, difficulty breathing, uncertain swallowing. These are symptoms that have greatly reduced over the course of my treatment that began in September, and today was an unexpected flair. I have babesia and lyme, and have found that mepron really helped to reduce the symptoms caused by babesia, eg air hunger. (I stopped mepron about a week ago to see what would happen, and well it seems the babesia bugs are still in me.)

But that being said -- I have found that lorazepam - or any anti-anxiety medicine that works for you - GABA, Ashgawandah, marijuana (if it doesn't make you anxious!) can be helpful. I've found that the chest discomfort and inability to breathe makes me anxious and it's a snowball from there, so if there is something shutting down the anxiety, it makes the physical discomfort less oppressive.

You'll get through it!
Posted 2/8/2017 2:59 PM (GMT 0)
Thank you so much, Boston Marigold! I hate that you went through that as well. I will definitely look into these meds and I think that I do have a little anxiety going on which makes matters worse. I've never had anxiety or panic issues so this is all new to me. Thank you everyone for your suggestions! I really need them!
Posted 2/8/2017 3:14 PM (GMT 0)
Your mycoplasma p and CPN can also be giving you these symptoms. Are you treating for these?
Posted 2/8/2017 3:18 PM (GMT 0)
Hi Juju!
Welcome to our community! I'm so glad you found us.

I just wanted to chime in that it sounds like Babesia symptoms most likely to me as well. We don't test positive for every infection we have a lot of the time because our immune system is lowered by Lyme disease. While that doesn't always effect Babesia results, we also know that it only takes a small number of protozoa (Babesia) to make us very sick, and yet it may not be enough in a blood sample to be able to turn a test positive - and that's why these infections need to be diagnosed clinically at this time.

Hang in there, and keep asking questions!! No need for you to get worried over something that we can be of help with!
Posted 2/8/2017 6:08 PM (GMT 0)
Hi juju, so sorry to hear about your diagnosis, it can be more then devastating... I'm new here but not to lymes disease. I found out that is what I have here around 3 or 4 months ago... I have and had long term the same symptoms.. lung pain on left side, ribs well they go out along with my shoulders and hips.. and the air hunger I have had for years... sometimes I think it is caused by my ribs going out and sometimes it is caused by my inflammation and also I found out I have an allergy to milk that makes my breathing like aflactic shock... but I have found that if I put a ice PACk (covered with a pillow case or something so it won't burn you) and put it on my back where my lung bothers me I find that I can immediately breath... it is amazing you should at least try it... try putting it on you front area around the lung.... I hope this helps, it is amazing I can be barely breathing and put the ice on and it the same breath I can take the rest of the breath deeply....
Posted 2/8/2017 6:56 PM (GMT 0)
I had pluersiy a few years ago and developed tightness, pain, and difficulty breathing in my chest that has stayed. When googling one night, I found a condition that sounded like what I had and then found a youtube video on how to treat. It's Costochondritis. I've been looking for the video of the guy because he was very objective, but i can't find it right now. I'll post later if I find it. But, he used a product called a backpod. I didn't buy one because it comes from Australia or somewhere. I took one of my son's old foam toy footballs and cut the back side off the make it lay flat and that seemed to work.

Here's another video from the maker of the backpod explaining it. https://www.youtube.com/watch?v=uvJbQFDeyOk&t=119s

Also, I've tried magnesium because it relaxes muscles and standing in a doorway with my hands on each side of the door opening, then I lean forward into the doorway to stretch my chest open. Try that.
Posted 2/8/2017 7:07 PM (GMT 0)
Of course I found it after I posted. https://www.youtube.com/watch?v=qsi3uxSX4Q0
Posted 2/8/2017 10:14 PM (GMT 0)
I think the Azithromycin was for the Bart, CPN and mycoplasma?? Unfortunately I had to go off of that bc of side effects. I'll have to ask my LLMD if there is a substitute. Does anyone know of some other antibiotics? I'm already on Doxy. Thanks!
Posted 2/8/2017 10:17 PM (GMT 0)
I found out today that my chest xray is normal!! Although tests results definitely do not match how I feel. I'll report that to my LLMD and see what she suggests and let you know. Thank you!
Posted 2/9/2017 12:25 AM (GMT 0)

Juju said...
I think the Azithromycin was for the Bart, CPN and mycoplasma?? Unfortunately I had to go off of that bc of side effects. I'll have to ask my LLMD if there is a substitute. Does anyone know of some other antibiotics? I'm already on Doxy. Thanks!

Azithromycin won't treat bart - not on it's own..it will need to be paired with another antibiotic.
Some have had success with Bactrim DS. But, often Rifampin is used.

You could add Rifampin to the doxy but Rifampin decreases doxycycline levels in the blood. (But I still read about LLMD's prescribing them together)

Another option is Minocycline - with Rifampin or biaxin with Rifampin
Posted 2/9/2017 12:26 AM (GMT 0)
Good news about the chest X-ray!!
Posted 2/9/2017 1:59 PM (GMT 0)
Thank you for the suggestions for the antibiotics! I'll mention these to my LLMD and hopefully I can get relief soon! She also suggested Artemisinin which I started yesterday. Anyone have any luck with that? Thanks!
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