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My story of desperation

The various unpleasant manifestations of Helicobacter can be described here. Remember however that the great majority of persons with Hp have no symptoms that they are aware of and consider themselves normal.

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KayleeHenderson
Posts: 3
Joined: Tue May 26, 2015 12:31 am

My story of desperation

Post by KayleeHenderson »

It's been about a month since my doctor told me my blood tested positive for h pylori. I was loosing weight, having heartburn from almost anything, and getting very emotional. I decided to give in to a week of antibiotics... Boy was that a mistake. After taking amoxicillian, omeprezol, and clarithomycin for a few days, I had horrible insomnia and I was awake for two days in a row before a full blown hell-grade attack of anxiety started, when I was laying in my bed at daylight, trying to sleep. I have never experienced anything so awful in my life, I couldnt imagine so much emotional pain and fear could exist simultaneously. It finally subsided and I got a few hours of sleep, and the next day, some anxiety came back but it wasn't as severe. I think it was from the clarothomycin, because after the first attack I stopped taking it and I haven't experienced anxiety since. The second day, maybe it just wasn't gone from my system yet? I still had insomnia and emotional issues after dropping clarith(I'm guessing emotional from the sickness itself, malabsorbtion of nutrients maybe) but the anxiety has been at bay, and nothing compares to it, so that's a plus. My doctor prescribed me levoflaxin in place of the clarithomycin and I continued on the treatment for a week, but it was all funky because I had already taking some of my amoxicillian and I had uneven amounts of each med.

I feel somewhat better after being off of the meds(not as sensitive to sunlight, less insomnia,) but I know my hpylori isn't gone, the meds were basically a waste of my time. I still get very emotional and very sad at times - I have never cried so much in my life!

I also noticed I began loosing large amounts of hair the first week of meds, my hair is soft in a weak and brittle way, but I have no idea when it started or if it is from the meds, or from the sickness, or stressing out. All I know is that I'm not imagining it, and it makes me very sad to acknowledge. I have dreams about my hairloss, and I try to tell myself it will get better as soon as I cure my hpylori, but I start to doubt that I ever will find a cure. I just need something to hold on to - and I'm pretty sure it's not the huge clumps of my hair that I gather in the carpeted hallway!

I am worried that my scalp will be noticeably thin soon. I hate washing and brushing it because I see so much hair fall, so I only wash it two or three times a week now, and i keep it in a light braid to keep it from tangling when its dry. I try not to worry, but I feel like I need to come to terms with the fact that my life will never be the same if I loose my hair. Is there anything I can do to kickstart the growth while I'm struggling, or won't it matter if I am missing important nutrients causing the problem? I sometimes lay upside down and massage my scalp, but it makes my tummy feel sick.

I started taking probiotics and vitamin c immediately after getting off the medication, and three days after, I started taking coconut oil, too. Its been about a week, yesterday, and I have began taking 1000mg of mastic gum a day, feeling not great physically.(Stomachs gurgling like crazy.) I read that it kills good flora as well as bad, therefore I am concerned as I just got off flora killing antibiotics. Wouldnt it kill the probiotics I take? Do I continue taking probiotics with it, vitamin c? I have heard so many good success stories of Mastic curing h pylori, then other resources claim that it doesn't cure h pylori, but lessen it. That's discouraging, I have no idea what to think or what to do.
I just desperately want to kill this horrible sickness that has been controlling my life. I'm so tired of not being myself - of being so sad - not having the energy to work out, jump on the trampoline, and do the things I love. I'm so tired of being afraid that I will loose so much hair that people around me will begin to notice. Im also thinking about staying home until its gone(I'm homeschooled, the only places I go are friends, church, and youth group) because people are beginning to ask me about it, and I don't want them to hate me for being a possible carrier, and I would never want to pass it on, but I don't think I'm that contagious since I dont normally go around smearing my feces and saliva everywhere. But then again, maybe I do and I don' know it, because I have no idea how I got this sickness. I also wouldn't want to risk spreading it, then getting it again.

I thought it would be worth mentioning, my uncle had h pylori almost a year ago. He did regular treatment for hpylori for two weeks, and then his system was weakened from the meds, so he caught yet another bacteria. After that, he seemed to be cured. Well, I'm not taking any meds ever again, I will never ever go back to that anxiety if I can help it.

Please give me some hope, some words of encouragement, some tips, as I have already said, I am desperate. I feel like nobody close to me actually realizes the extent of what I'm going through.(My parents know all of it, but they don't take my hair loss seriously.) I've told a few people, but I didn't go into detail and tell about the emotional pain I have been struggling with or the hair loss. I am fighting so hard to get through this.
Thank you for reading this, and I hope you had a Happy Memorial Day.

Helico_expert
Site Admin
Posts: 4463
Joined: Wed Mar 02, 2011 7:20 am

Re: My story of desperation

Post by Helico_expert »

thanks for sharing your story. I think you should go back to your GP to get a proper breath test to find out if you still have H. pylori left. Your first treatment with PPI + Amox and Cip may have killed the H. pylori. Only when the bug is definitely eradicated, then you can focus on the healing.

unfortunately mastic gum, coconut oil, and all other traditional remedy like garlic, broccoli, onion, chilli, honey, ginger, lemon, and others does not kill off H. pylori in the stomach. Antibiotics are the only way to completely eradicate H. pylori.

It's probably a good news that you are not allergic to Amox. H. pylori can never get resistance to Amox. So you can try Amox and other antibiotics together in your next round of treatment (IF you are still positive of course).

probiotics can replenish your guts bacteria after the tsunami effect of antibiotics that kill off majority of your guts good bacteria. Some people take the probiotics together with the antibiotics, some take it after. There is no clear guideline how to use it. But, there is no harm trying either way, as long as you feel better.

in regards to your anxiety, i can feel for you. you'll have to try distract yourself with work or fill yourself with positive thoughts. It's great that you acknowledge the anxiety feeling. Just remember that it's temporary and it'll go away through time. keep thinking about your health will not solve anything. just write down the problem and tackle them one by one.

lastly, nothing works better than positive thoughts.

KayleeHenderson
Posts: 3
Joined: Tue May 26, 2015 12:31 am

Re: My story of desperation

Post by KayleeHenderson »

Well my stool test is scheduled next month. I don't know why my doctor scheduled it so much later, but I read that results can be inaccurate if you test too soon after treatment. On the other hand, I do not want to sit here and bask in h pylori for a month if it is not, in fact, eradicated.

219short
Posts: 1
Joined: Sun Nov 21, 2021 11:25 am

Re: My story of desperation

Post by 219short »

After 2 rounds of antibiotics i steel have the H.pylori . this make me sad . My symptoms are bloated loss of appetite ,stomach pain usually on the morning . I am thinking to take Mastic Gum with another round of antibiotic but a different one . Any advice will be helpful .

Helico_expert
Site Admin
Posts: 4463
Joined: Wed Mar 02, 2011 7:20 am

Re: My story of desperation

Post by Helico_expert »

Good decision.
You should not try the same antibiotics again, except for amoxicillin which you can repetitively use. It is very hard for H. pylori to become resistant to amoxicillin.

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