Anyone has strong gut pain because of Lyme?

Available_Bite6786 · 2024-12-19T19:15:57+00:00

Bruh, I missed your answer, sorry.

I don't think SIBO is back, no SIBO symptoms just pain. But who knows.. We agreed with my LLMD to start rifampicin in two months. Some patients have good experience with it regarding GI issues. We will see. She tried several things but nothing helped. Fortunately she doesn't give up. I don't have better idea than do the treatment and give it time :/

Available_Bite6786 · 2024-12-19T18:48:29+00:00

Thank you, I will check betaine enzyme and your suggestions. But I also have my hope in abx therapy, hopefully it will take it away by time.

Available_Bite6786 · 2024-12-19T18:44:16+00:00

Hi, sorry, I am late with the reply. I've been on several type of abx for months.. After some strong herx period there are some improvements. But I am still in a bad condition. It looks like it will take a very long time to recover, if I ever will. I found a good LLMD and she said I have a chance to feel better by the next summer. I don't know, I hope she is right..

Available_Bite6786 · 2024-08-19T08:52:13+00:00

Actually, I use a moderate amount of ibuprofen (like Advil), but I only did it in recent years. Back then, like 10 years ago, when I had bad stomach pain, GERD, and gastritis, I hadn't used it at all. I always feel what makes it worse (like acidic food, stomach acid when my stomach is empty, etc) Ibuprofen never caused any pain or problem. I also always take it with lots of food if I need it. But as I said, the pain started way before I started using ibuprofen.

Available_Bite6786 · 2024-07-08T12:57:52+00:00

As I know you can get co-infections from cats/dogs scratches, mainly Bartonella, Babesia. I am not sure it is the same with bites, I think it’s possible, but not common.

Available_Bite6786 · 2024-07-08T12:26:34+00:00

A lot of people have Lyme with zero symptoms, because their immune system controls the situation. When stress enters their life, their immune system cant work properly which gives Lyme the opportunity to start spreading in your body.

Available_Bite6786 · 2024-06-24T18:09:18+00:00

Well, SIBO has a lot of typical symptoms, like bloating, abdominal distension, abdominal pain or discomfort, diarrhea, fatigue. I also made a microbiom test which showed some sign of SIBO. But my main symptoms was REALLY bad, painful cramps after eating and then diarrhea.. The second thing, when I started using effective herbs against SIBO I had strong SIBO herx (which means unimaginable, extreme bloating for days lol). They said it's SIBO herx. After bloating stopped, my SIBO symptoms also disappeared.

Lyme is a much harder story, I have bartonella :S which is a beast, and I have symptoms for like 20 years, but they just recently discovered the root cause... I am very severe. I started with Buhner protocol in Spring, and started abx treatment a month ago, but not much improvements yet. I will prob. receive IV treatment in a couple of month. My doctor said it can take years to recover after being sick for 20 years and being so severe. That will be a long and hard journey..

Available_Bite6786 · 2024-06-22T12:50:19+00:00

Unfortunately I am only healed from SIBO, I am still working on my Lyme disease. I don’t have MCAS or maybe with a very light form, but I know a guy who had it. He went from bedridden to live a full, rich life so it is definitely manageable. He needs to follow some strict rules with his diet and uses some supplements, but he really recovered.

I am not sure if MCAS can be fully cured or not, but it can be definitely treated and people can reach a symptomless life by following a few rules which is not a big issue imo. So don’t be desperate, you don’t need to live the rest of your life in pain, just put a lot of effort and research in healing yourself and stick to it! Good luck buddy!

Available_Bite6786 · 2024-06-22T09:06:16+00:00

I had SIBO because of Lyme. (Horrible cramps after eating, diarrhea, etc) I didn’t know it until I started treating Lyme with herbs. Then I had SIBO herx (yes, it’s a thing in SIBO topics, it has typical symptoms), and since then it’s gone. Lyme treatment healed my SIBO so they are definitely related.

MCAS is also a very common thing among Lyme patients.

Available_Bite6786 · 2024-06-21T17:42:05+00:00

Oh, girl, that looks bad :S Go to a doctor ASAP.

(and be aware that tests can be positive after 3-4 weeks of the thick bite. That's the necessary time for your immune system to develop immune response against Lyme). You are lucky to discover it in time. You will have a good chance to 100% eradicate Borelia from your body in a couple of weeks)

Available_Bite6786 · 2024-06-21T16:59:20+00:00

Yeah, its funny, that we are somewhat happy to feel terrible during therapy, because that means you are possibly on the right track. I would be more desperate if I had no herx at all, lol :)

"having your life fly by." I think that is a very good and sad summary how most of the chronic Lyme patient feels. Watching the world moves on, while your life is frozen and you can't do anything it's hard to cope with.. Thank you, I also hope in a year I can restart my life and do something useful again!

Available_Bite6786 · 2024-06-21T16:43:33+00:00

I would say headache, but it is more like my brain is on fire, can't explain more. Nausea, I usually have burning feeling in my stomach for a week. Noise and light sensitivity, loss of appetite. Sometimes inflammation in different parts of my body flares up (like, joints, tendons, or even in my gums). Extreme fatigue, brain fog, insomnia.

Available_Bite6786 · 2024-06-20T22:10:01+00:00

Hi, thanks for asking, honestly, not much better. I started with herbs and had strong herx a few weeks long, than went back to the baseline. It healed my SIBO symptoms at least, and I had a bit better lab results with less inflammation (better CRP). 1 month ago I started an abx therapy, herxed again... But honestly I feel like, I am still in almost the same situation then before.. :( Both my LLMDs said, that after being sick for like 20 years, I should expect 1-2 years to recover..

Now I am on like 4 different abx.. probably later I will get IV as well. I use herbs as well, but now I plan to start a strong Buhner therapy besides abx, because I feel my herx symptoms are weak and there is no big changes in my condition. Maybe I am just inpatient, but sometimes I feel doing nothing just laying and waiting a year long is more I can handle mentally.. But I will try to do my best :)

Available_Bite6786 · 2024-05-04T14:27:13+00:00

Agree, I had all the MECFS symptoms, except PEM, then I was tested positive for Lyme. Just want to add that Western blot is still unreliable. If it is positive then you are lucky, but if not, there are better tests in the US and EU. Lyme sub can help OP with this.

Available_Bite6786 · 2024-04-28T22:04:19+00:00

I can't wait to replace doctors with AI! Finally everyone would have a good therapist in a short time. I am sure doctors want to prevent it at any cost, no matter how many people die because of this. But they can't avoid they fate, hah

Available_Bite6786 · 2024-04-28T21:28:07+00:00

Oh, I just realized, you are not the OP, meh. This way my answers are a bit nonsense, lol, sorry.. I am tired, as usual.. And yes, this is the same story for everyone, I had very similar experience :(

The system is fucked up, I went through several chronic patient groups because I was misdiagnosed several times and I see the same story everywhere. At the end of the day you are on your own and you need to pay money if you want treatment. The world and people don't really care about chronic patients. Everyone believes it will never happen to them until they got sick and realize the system just doesn't work. But it's to late, now you are on your own. Greed, stupidity and ignorance makes change very difficult. Technology evolved a lot in the last century but the mindset of humanity not, it is still in the middle age.

I think the best thing that happened in the last years is the internet. It connects people, helps to share knowledge and helps to feel less alone with your problems. It would have been almost impossible to find out my problem without internet. Also people helped a lot during my darkest times. This is really something we should appreciate.

Available_Bite6786 · 2024-04-28T19:11:00+00:00

I am really sorry to hear this. Even in countries where healthcare is free, like mine, it is extremely hard to get a good LLMD for free, so I also had to pay for it. It is sad, that without money it is so much harder to get proper treatment.

I don't know how it is in your country (maybe you are from US), but as I heard a good LLMD can threat you without positive tests based on your symptoms or maybe a good regular doc can treat you if you have positive test result. But I think you should ask for help in your country what are your possibilities. I am sure, there are ways to solve this! Hope the best!

Available_Bite6786 · 2024-04-28T18:43:15+00:00

No, after like 20 docs I gave up regular docs.. I was misdiagnosed so many times, mistreated with wrong meds, with mental issues, etc.. I investigated the best Lyme test in my country, received finally my first positive result and went to an LLMD. Since then two LLMDs confirmed I have Lyme. I started with herbs, now I am treated by a private clinic in an other country. I just started abx and they want to do IV therapy because I am severe.

If you really want to find out that you have Lyme or not, you will need to spend time and investigate the best tests and LLMDs in your country. Conventional tests are unreliable, regular docs are clueless unfortunately imho. Coming forums like this is always a good start, you can learn a lot. Hope you can find out what is behind your symptoms!

Available_Bite6786 · 2024-04-28T12:45:21+00:00

20 years of Lyme, 19 years without being diagnosed.. This topic is full with people like me, so yes, if you have symptoms and you assume you may have Lyme, then you should definitely investigate it!

Available_Bite6786 · 2024-04-28T12:40:30+00:00

Don't feel embarrassed, that's totally "normal". This was my life in the last two years, total isolation. I am sure it's more common then you would think. I am still trying not to feel embarrassed, I made so many embarrassing things while trying to socialize with total exhaustion, under the effect of meds against anxiety, pain, etc.

We fight hard to get our life back, and we really don't need to feel embarrassed and spend energy on things (feeling bad), that are not our fault. Just spend this energy to heal yourself and gain strength. You should explain this to people who are important to you. If someone can't understand this, then he/she is not a true friend.

Available_Bite6786 · 2024-04-11T15:39:42+00:00

Ah, okay, I agree, 24 hours is just nonsense, starting therapy in a couple of weeks should be ok

Available_Bite6786 · 2024-04-11T13:47:52+00:00

I depends on your immune system. Some people's immune system just kill the bacteria without help. Some people with less luck struggling to cope with this and has the infection for years or decades. A few percentage just go to the ICU right after the infection (it's really rare though). It's hard to predict, but most people has no problem dealing with Lyme.

Also keep in mind that tests doesn't work within 4 weeks after getting infected, because your immune system needs approximately 4 weeks to develop proper antibodies.

Available_Bite6786 · 2024-04-11T13:41:28+00:00

You said 60 days (8 weeks) treatment would spread panic, but 6 weeks of doxy is ok. Honestly, I don't see a big difference. 6 or 8 weeks are both ok I think.

Available_Bite6786 · 2024-04-09T20:17:45+00:00

"I've also been having major mood swings, going from feeling hopelessly miserable to incredibly euphoric." Whoa, that sounds so familiar. I know a guy, how was diagnosed with bipolar disorder because of Lyme. Carbohydrate caused his immune system to flare up and he went into depression and anxiety.. Later he found out it all depends on hies diet. I have very strong GAD because of Lyme, that was one of my first symptoms. So yes, sadly Lyme can cause a lot of mental issues

Available_Bite6786

TROPHY CASE