Bartonella and inability to process or plan and memory loss

Barryssister said...
Hello I’m trying to help my brother who is 41 years old and on February 2018 all in one day he lost his ability to process tasks. His short term memory comes and goes. He fees like he is continuing to loose memories. He has bad ringing in the ears, pain and tingling in the bottom of his feet, joint pain and swelling, terrible insomnia since this time where he gets only 2-3 hours of sleep. He has nightmares, hallucinations, suicidal thoughts that are horrid. We have been to 7 neurologists, 3 cardiologists, endocrinologist, gastroenterologist across five hospital systems. Originally they thought lewey body dementia and then after various testing stated no it’s just extreme anxiety and depression and just needs talk therapy. Psychiatrist and talk therepist feel it is neurological. We basically get pushed back and forth. In July 2019 we were introduced to lyme literate doc who stated lyme, Babesia and bartonella and most likely mold. We started treatment with no major changes. The igenix lab was the only one to come back with bartonella henselae. My brother now lives with me and the fear and anxiety he feels is overwhelming. He is getting to the point where he wants to end his life as he feels he will never get better. We have been in patient psych and they state it is due to his health concerns. I’m hopeful in starting this thread so any one that has been dealing with memory loss due to lyme and has recovered will write back so that I may share your stories. He has not worked since 1/29/19 and bills are piling up. He needs some hope. Thank you

Thanks for your reply. I guess we really don’t understand the herxing as he feels bad all the time. Yes since mid July, so about 3 months. He is currently taking 300mg rifampin, 500mg clarithromycin, 300 mg ranitidine, 25mg hydroxyzine, bicillin injection 1,200,000 which we need to go to 3 times per week but is sooo expensive, singular, Bactrim, cetrrizine, nystatin, propranolol, mcbab3, toxease gl, Amantilla, htp, lithium ortate, magnesium, probiotic, milk thistle, turmeric, D3, B12, melatonin, fish oil, argentyn.

We just started the Bactrim, clarithromycin and Argentyn yesterday. The bicillin is week four.

He feels like his memory will never come back and that his brain is permanently damaged. He fees like no one understands what he is going through. His wife left him and he has to have supervised visits with his children. Early on he was very rageful and spoke of suicide every day. But she is making everything so difficult.

The Llmd has been great, we keep trying things. At first he went all herbal. He took him off the rifampi and mino in the first month to try and use herbs to detox and bring down inflammation, but my brother was not dealing well with the pain, memory issues, and ringing in the ears so we slowly went back on antibiotics. We had seen a functional med doc that didn’t believe it was lyme because of negative test results, but knew there was something wrong and was willing to write rifampin, minocycline and dapsone. I think he did Herx on dapsone. His Herx in my opinion is rage and anger, fear and paranoia. I just wish he could sleep.

I bought him the gold alkaseltzer and I did buy him epsom salt. I will get him to try warm vs hot bath. He was a foreman on construction and right now he has a hard time remembering how to start the car. He is not driving now. But when he did, the only way he could get somewhere is with gps. If that went out on him he would be lost.

The worst part is his wife is telling everyone he is faking it so he does not have to work. He worked for 15 years on the same construction job and when this started he quit working because he didn’t know how to perform his job and thought he would be fired. He went to work for 2-3 months driving a concrete truck..imagine that, they would have to reshow him what to do every day. Then he went back as a carpenter on the same construction job, but the crew knew something was really wrong. So with the six month break in his 15 year job, his long term disability considered it a preexisting condition. So now we are waiting for social security but it is really rough with no income coming in and paying for cobra health benefits. So on top of fighting illness he is struggling with losing everything. So that adds to his insomnia.

I can’t believe people would think he is faking it. He never sat still before this. His wife has people thinking he had a nervous breakdown because she left him. He had these symptoms before she left.

They wan him to start barametric chamber and infrared sauna, have you done that? With limited funds, I’d like to use it wisely. Bicillin shots are $173 each shot out of pocket.

Thank you and I do want to get him on here. His user Id can not allow him to post and we are waiting for the email to verify. I will work on that today.

Barryssister,

Hello and welcome! THANK YOU for caring so much about your brother and going all-in trying to help him. I am terribly sorry for what has happened to him and the treatment his wife is giving him. Talk about adding insult to injury.

When I read your post at the top, my first thought was MOLD. Then I saw the doctor mentioned it. I read what you said about his job experience. Anyone in construction has ample opportunities for mold exposure. I wonder if one really bad exposure is what set this off.

I have CIRS from long term mold exposure and am extremely sensitive to it. I also have bouts of rage and wanting to die. This started 3 months after moving away from the mold exposures.

Mold symptoms can overlap significantly with bartonella, babesia, and Lyme. One thing about people with mold is treatment for Lyme/coinfections often do not have the same results as people who don’t have mold issues. Like you said, it’s hard to determine herxing because he feels bad all the time. That’s a big clue to mold right there.

It’s absolutely critical that he not have ongoing exposure to mold. Dr Shoemaker is the mold guru who developed testing, diagnoses, and treatment for CIRS. In the case of CIRS, patients need to test their environment (home, workplace) for mold exposure with the ERMI or HERTSMI-2 from Mycometrics lab.

You can find lots of information on these websites.
https:// https://www.survivingmold.com/diagnosis/lab-tests
https://www.biotoxinjourney.com

FIR saunas are reportedly very helpful for mold detox. I have not been able to do it yet. I have also found Chinese skullcap and Kudzu root to be especially helpful for the cytokine induced rage and anxiety. There are many other herbs especially good for rage and anxiety. Motherwort, holy basil are ones I can remember. Stephen Buhner details herbs for specific symptoms in his books. I highly recommend his books.

Binders are critical. Cholestyramine is the most potent binder. Others are okra powder, activated charcoal, modified citrus pectin, bentonite clay, Zeobind, GI Detox, Takesumi Supreme, Ultrabinder, etc.

I didn’t see any mention of glutathione or NAC. Glutathione is also needed for detoxification. NAC is a precursor to glutathione.

Post Edited (WalkingbyFaith) : 10/18/2019 1:07:18 PM (GMT-6)

Barryssister does your brother also have problems with being unable to commit to goals?

I think I have Bartonella and that's one of my issues.

For example, I will sit down, knowing I should work, but no matter how much I want to, I sit there and do nothing.

It's so easy for people to think I'm just being lazy or don't "feel like" working.

But it's not that simple. It seems very similar to ADHD.

Barryssister said...
Thank you so much for all your info Walkingbyfaith. Do you have any memory issues as well? You mentioned that mold goes with the construction industry, why do you say that?

I do have issues with memory, cognitive issues, difficulty word finding, etc. Not the severe issues like getting lost, though. That sounds like what I read about babesia.
https://www.gordonmedical.com/babesia-like-organisms-bablo-consideration-signs-and-symptoms/

When you said construction, I was thinking renovation work on buildings that could have mold or water damage.

Barryssister said...
we think his Tick bite occurred working on a turnpike job in Valley forge where it was infested with ticks and they had to pick them off their clothes and bodies.

Wow!!! That sounds bad. I was wondering if you had any idea how he got infected. That makes sense. Surprised none of his coworkers got sick.

JovaLyme that's totally me too, where I end up doing nothing.

RainyCloud said...
Barryssister does your brother also have problems with being unable to commit to goals?

I think I have Bartonella and that's one of my issues.

For example, I will sit down, knowing I should work, but no matter how much I want to, I sit there and do nothing.

It's so easy for people to think I'm just being lazy or don't "feel like" working.

But it's not that simple. It seems very similar to ADHD.

Wow. I would have never thought to connect that with Bartonella - I have been that way for years. I don't sit and do nothing, I just fill up that space with walking around putting things away or some other meaningless task. It's interesting because I also do that with things that I WANT to do, like working on my grandsons costume. It's just sitting there. Your right, it's not that simple - it has been at times maddening to say the least because I could never name a reason for this behavior.

Barryssister - I'm so sorry for what you and your family are going through and so glad you have reached out to this group - there is so much compassion and wisdom here.

I had memory issues both short term and long term. like immediate, I would pick something up and then continue looking for it... while it was in my hands. other times I would walk in a room and have no idea *** why. or something would "appear" on a table or chair that wasn't "there". I would forget passwords. I had problems driving. I missed appointments, dates. I would watch a movie, and then watch it again the next night LOL.

it all came back after antibiotic and herb treatment. ... All of it. I'm at 90-95% of my diagnosised IQ

the treatment took 15-18 months of antibiotic treatment with a LLND, and really I wasn't able to "work" until this time last year. And I felt bad up until April this year. The treatment worked but it took ALONG time. Ivermectin was a good treatment -- probably gave me a 40% improvement in 3 months. (but Ivermectin it caused neuological issues)

my treatment never fully cured me.

recently folks here started talking about disulfiram. previous to this (and Girlie can account to this), it appears every 18-24 months there is some "breakthrough" cure "just around the corner" that has always been promising but failed. Well this one disulfiram might actually be a good canadate for the "silver bullet". Because since April I have been 90-95% better, and recently taking DSF has given me hope I will be 100% cured (or better) by taking DSF. I have started a regular job and can do complex tasks, make plans, keep them, set goals. I could not do this the last 5 years and my life has been a mess. Literally projects I left outside in the rain fully disaassmbled on my farm, I have been able to go back to and fix (.. and finding all the parts/bolts totally untouched but rusted)

what it sounds like your brother is going through is what I went through in 2015 and 2016 before I got professional help from a LLND. I think if your brother can keep going to your LLMD and follow the treatment, he will be better BUT IT WILL TAKE TIME.

I would ask your LLMD if he/she has kept up to date on Disulfiram research: http://disulfiram.net/

also all those other people who are saying he is faking it, I guess there's a term for that called Medical Gaslighting, I went through the same thing (but it was my GP DOCTOR who withheld antibiotics from me for two years, I now refer to as l Dr. Lucifer.. lol)

LUCKILY BARRY has a WONDERFUL sister to help him out. Thank you for helping your brother. A lot of people don't have someone to help them out ( I didn't, and everyone doubted me). Just follow the instructions from your LLMD and give it time. I pray for Barry and you please keep us up to date.

Post Edited (oregonhay) : 10/20/2019 12:19:31 AM (GMT-6)

I can totally relate to what UpBeetLiving and OregonHay described about cognitive issues. I constantly walk into a room and can’t remember why, or I’ll see something else that needs to be done and get distracted. Half an hour later, I will discover the initial task I was meaning to accomplish.

I live with relatives who don’t DO much of anything. Watch tv and wash dishes. That’s about it. Yet, when they get a notion to DO something productive, they can get a lot accomplished in a short amount of time without a lot of wasted energy.

Me, on the other hand. I am constantly DOING something. Lots of movement and energy expenditure, but I don’t accomplish that much and it takes me X times longer than it does other people. I’ve been like that for years, but it’s worse now.

Barryssister said...

Sorry for the long post but one more thing, because I don’t understand, I asked him...so if I asked you to go outside and cut down a bush, what goes through your mind? He said, I see the bush and I understand cut it down, I don’t know how to do it or where to start. I said ok, what if I got the trimmers out and plugged it in for you? He said stop, please stop, you don’t understand how this hurts to think about it, it’s like I can’t get to that part of my brain and then his eyes changed (pupils) and he started to cry and get angry at the same time. So much fear took over. So I didn’t push him. I believe him, I’m just trying to understand. Have you experienced this. He feels like there is something permanent wrong with his brain.

I understand and have experienced this. It’s all the unspoken thought processes that go into doing something that’s the problem. This is the part that normal people take for granted because their minds do it automatically. When you have severe brain issues like this, those automatic thought processes don’t work. Trying to make your mind be still and focus and remember how to THINK and recall knowledge and experience. It’s the THINKING more than the DOING that’s a problem.

If you’re cutting down a bush, your brain needs to understand why you’re cutting down the bush, what you’re going to do about the stump and the roots. If you want the roots pulled up, that’s going to leave a big hole in the ground. What are you going to do about the hole. What will the yard look like without the bush. When cutting, do I start at the top or bottom or shave down the sides first. Do I want to throw the bush away or would I rather dig it up and transplant it or give it to someone.

I just posted on the hobbies thread about having bought tons of scrapbook stuff to make a scrapbook for each side of my family. I never even started because mentally I couldn’t figure out how I wanted to go about it. I wanted it to be organized and make sense, but I couldn’t plan it so I never started. It’s like having a brain cramp but worse.

Walkingbyfaith are you getting treatment and have you improved? Also has any one tried infrared sauna?

Well my brother has started an IV of 2 mg ceftriaxone 50ml along with 5ml heparin and has been taking it daily for a week. He said the pain is so bad in his feet and throughout his body. He continues to fight thoughts in his head telling him to hurt himself. Would this be considered a Herx reaction? He is also very nautilus. One day he had four hours of sleep, but most days it is still the 2-3 hours on average. We had one of the docs tell us to have them add manitol to the IV as it opens the blood brain barrier...has anyone heard of this?

Yes it sounds like hes herxing

I’m not familiar with the Mannitol.

You’re brother is blessed to have you.

Is he detoxing regularly?