Bone pain, Air Hunger, Drastic sudden weight loss

I have been battling Lyme, Babesia, and RMSF for over 2 years. Tested CDC positive through Igenix. Have had I.V. Rocephin (picc line) on two occasions among countless other antibiotics and antimalarials off and on for past 2 years. I get better...then decline. Get better...then decline.

May 1st started a flare of bone pain like nothing I’ve ever experienced - after 14 days, my husband drove me to the doctor where I was given help with the pain (tramadol, 5 day steroid pack *i know I know, but it was absolutely necessary*, rheumatoid arthritis med and muscle spasm med). I began eating vegan out of desperation to heal my inflammation. .

Shortly after this, my stomach began bothering me. The bone pain lifted, but my weight started dropping. Drastically. Since May 14th, I’ve gone from a very healthy, fairly muscular, 170lbs to 144lbs (today’s weight). I’m 6’0 tall, naturally athletic build, but am beginning to look very ill. I can’t eat much of anything without gagging, dry heaving, stomach burning, or cramps in lower abdomen. I’ve gotten so thin you can see my ribs and my chest bones. IF I make myself eat a meal, air hunger becomes so severe that I regret trying to get in the calories. Craving salt. Can’t do more than eat a handful of blueberries, drink 1/2 a juiced cucumber, or sip water (no gulping) or I will begin feeling like an elephant is sitting on my chest. Fat causes immediate pain in bones, protein seems indigestible. I’m basically reduced to a handful of vegetables and berries. Within the last week, hunger is gone - my stomach will audibly growl but I have ZERO hunger. I’m shaky, light headed, foggy, zoned out...but look at food and cringe bc of the discomfort it is causing,

I saw local LLMD last week who suggested numerous antibiotics but I can’t keep doing this to my stomach. I fear the long term antibiotics may have gotten me in this predicament to begin with. But I literally don’t know what to do.

Has anyone experienced this? Any advice on a particular doctor who might be of help? Any tips on how to get calories in without causing horrible air hunger? Not much scares me anymore...the past 2 years have shown me how resilient the human body and spirit truly is. But I told my husband yesterday I feel as if I’m dying and admitted I’m very scared when I look in the mirror. I’m only 37 years old.

Any advice would be a help. Thank you in advance.

Sounds like you are really struggling...I'm glad you came here for support.

I think if you're wanting to continue treating with abx, you should find a LLMD who is willing to do IV therapy.
Because of your stomach issues...that may be the only way.

Were you treated for Bartonella - with Rifabutin or Rifampin?

Bartonella is a common coinfection that you may have...and if you neglect to treat it...you will not move forward.

When you were on antimalarials - was it Mepron? And if so, what dosage?

when you say you'd get better, then decline...get better, and decline...how much better? Were you close to remission/symptom free?

Girlie, thank you for your reply...I’ll try to answer each of your questions. I was tested for bartonella but tested negative, however my LLMD has put me on Rifampin a couple of times as many of my symptoms made her believe I may in fact have that co-infection. I responded well to Rifampin and symptoms improved.

When I said I’d improve...then decline, I mean, I get better (never fully returned to formal self) on treatment but within 2-3 months of discontinued treatment, I begin to decline. This has happened 4x over two years (my first picc line was in fir 6 months - my 2nd picc line was in for 3 months). My symptoms are typically nervous system...seizures, stuttering, memory loss, muscle loss, weakness, trembling, myoclonus, horrible nerve pain in scalp and face, and tachycardia- BUT have included about a gazillion other symptoms that I won’t list. Air hunger typically being at the top of my most hated list. I’ve never had the horrible pain that I had in May, nor have I ever experienced gastrointestinal issues of this nature or such rapid weight loss. It made me question if the bone pain and gastrointestinal issues could possibly be DUE to all the I.v. and oral abx?? Who knows. :-/

I was treated with Malarone for months for Babesia which helped tremendously and once with Mepron. I hope that gave you enough info. Thanks again for your feedback. I have 3 children, so am so hesitant to try i.v. Therapy again but I understand why you’re thinking that may be the best route.

Have you had blood work done and your adrenals tested, to make sure there isn't anything else causing you to lose weight? I would try some boneset for the bone pain. Air hunger sounds like babesia. Have you tried artemisinin or artemesia annua? Those two really knocked out the babesia for me.

I lost weight like that a few years ago. That was before I tried herbs. I found a really good naturopath and that helped. I would be careful about doing anything else that would make it harder for you to eat, because it seems to me that doctors in general don't seem to realize how serious sudden weight loss is until it gets really bad.

So I've been thinking about your problem all day. I then remembered the issue with my mother-in-law. See, she had brain cancer and was operated on. Afterwards, she was put on chemo and radiation. Well, the medicine and radiation killed her appetite. She lost so much weight that it was sad to see her that way.

I started to do research for her and found that Centrum liquid vitamins work wonders for cancer patients that lose their appetite. After reading hundreds of positive reviews on Amazon I went to Walmart and bought them for her. I started her with half a teaspoon every 2-4 hours. I didn't want to overwhelm her. After a few days, I would give her a full spoonful divided in 4-6 doses.

Well, it worked wonders! Within a few days she started to eat more and more. After a week or two we could not stop her from eating. She ate so much that she got "chipmunk cheeks"

We were so glad that she had regained her weight back (and more). Maybe it can help you too?

By the way, As it was with her, it may be with you as well, that whatever medication that you are on might be causing your loss for hunger.

Oh, something else that we gave her was home made chicken broth. We bought a few chickens, threw in a bunch of spices and vegetables and mixed everything in a pot and cooked it for a few hours. We then fed her just the liquid. It is very nutritious as it has the nutrients from the chicken and the vegetables. And since it is just liquid, it was not only easier for her to swallow, but it was much easier for her stomach to digest. Win-win situation.

One other thing-- you seem to be eating a lot of fruit. Can it be that you have a severe Candida infection? If the only thing that you tolerate is sweet stuff, I would bet that that may be an issue. With all of the IV stuff and other abx that you have taken, perhaps Candida has colonized your stomach and is causing many of your problems. Candida is known to cause some of the brain issues that you mentioned. I know first hand because I've been dealing with Candida for a while too, and many of my brain/CNS issues got better after I took Fluconazole.

I apologize firjust now responding. I have had family in town that I’ve haven’t seen in years and needed to focus what energy I had on them. Thank you all for your kind responses and helpful advice. I am seeing my doctor on Monday (my GP, not my LLMD) to request labs (lots and lots of labs), and to see what she feels might be triggering weight loss and air hunger. The air hunger is only getting worse....however after since Family has been in town, I have forced myself to eat foods I’ve been avoiding (a few bites of protein here and there - animal protein, some food cooked in fat and dairy...). Each time it caused stomach cramping, but no vomiting and as a result I’ve gained 2.7lbs since my last post on this site. Not much but progress on the scale, although still hurting and struggling with air and it feels gut related. I’ll check in to lauricidin and adrenal testing. Thank you all again. ❤️