1. < Autoimmune Diseases

Diagnosed with bartonella

Posted by jwovoss @jwovoss, Dec 1, 2020

I am reaching out because I am hoping for some help treating Bartonella that my natural path diagnosed me with. I have been actively trying to rid this co-infection from my body for over four years. I have tried many natural pathic remedies and and antibiotic (Ramifalin I haven't tried due to my doctor saying it is for TB patient, even though text and research say to take this specific antibiotic to battle bartonella). If you are familiar with this co-infection, you know it suppress your immune system causing havoc in your body. My symptoms are: racing heart rate, twitching of muscles, tingliness of limbs, brain fog, depression, extreme anxiety, hopelessness, swelling in my hands, pain in my feet, insomnia, fatigue, whole body pain, in ability to regulate temperature, joint swelling/pain. I have attempted to control it with diet (gluten free, low histamine, low magnesium, vegan), supplements, and antibiotics but cannot see to rid this of my body. I noticed if I supplement magnesium my symptoms worsen. However, magnesium is a key mineral for your body. On top of all of those symptoms above, this co-infection causes leaky gut and other virus to arise that your immune suppresses over the years, such as Epstein Barr. I went from a collegiate athlete to having difficult time getting out of bed and or each and every day I am battling this co-infection. I am reaching out to see if anyone can help. I am desperate for any kknowledge or a direction to follow.

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marilyncarkner | @marilyncarkner | Dec 2, 2020

I know nothing about Bartonella other what I have recently googled out of curiosity. Dr James Shaller seems to the the leading expert in treating this infection. If you haven’t looked him up it may be worth a try

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 2, 2020

Hello @jwovoss, Welcome to Mayo Clinic Connect. I know it must be difficult trying to find a treatment that helps for over 4 years. Here is some information that you might find helpful

National Organization for Rare Disorders: "What is the best antibiotic for Bartonella? - Bartonella henselae is generally resistant to penicillin, amoxicillin, and nafcillin. Doxycycline and rifampin in combination are the preferred medications for treating neuroretinitis"
- Bartonellosis: https://rarediseases.org/rare-diseases/bartonellosis/#standard-therapies

Clinicians | Bartonella | CDC - "A number of other antibiotics are effective against Bartonella infections, including penicillins, tetracyclines, cephalosporins, and aminoglycosides. Since aminoglycosides are bactericidal, they are typically used as first-line treatment for Bartonella infections other than CSD."
- https://www.cdc.gov/bartonella/clinicians/index.html

Have you thought about getting a second opinion?

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1 reply
jwovoss | @jwovoss | Dec 2, 2020
In reply to @marilyncarkner "I know nothing about Bartonella other what I have recently googled out of curiosity. Dr James..." + (show)
@marilyncarkner

I know nothing about Bartonella other what I have recently googled out of curiosity. Dr James Shaller seems to the the leading expert in treating this infection. If you haven’t looked him up it may be worth a try

Jump to this post

Thank you for the suggestion, I will reach out to him.

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jwovoss | @jwovoss | Dec 2, 2020
In reply to @johnbishop "Hello @jwovoss, Welcome to Mayo Clinic Connect. I know it must be difficult trying to find..." + (show)
@johnbishop

Hello @jwovoss, Welcome to Mayo Clinic Connect. I know it must be difficult trying to find a treatment that helps for over 4 years. Here is some information that you might find helpful

National Organization for Rare Disorders: "What is the best antibiotic for Bartonella? - Bartonella henselae is generally resistant to penicillin, amoxicillin, and nafcillin. Doxycycline and rifampin in combination are the preferred medications for treating neuroretinitis"
- Bartonellosis: https://rarediseases.org/rare-diseases/bartonellosis/#standard-therapies

Clinicians | Bartonella | CDC - "A number of other antibiotics are effective against Bartonella infections, including penicillins, tetracyclines, cephalosporins, and aminoglycosides. Since aminoglycosides are bactericidal, they are typically used as first-line treatment for Bartonella infections other than CSD."
- https://www.cdc.gov/bartonella/clinicians/index.html

Have you thought about getting a second opinion?

Jump to this post

Thanks for the links to NORD, which is one of the websites I have been getting information from. I am not sure who I can get a second opinion from. My current doctor is not well verse in Bartonella, like most doctors in Colorado. According to NORD there are no physicians in this state. My natural path doctor has been the one who found the Bartonella, and even she is having a hard time treating my diagnosis. I'm not sure where to go. I seen many specialist, such as a neurologist and they just diagnose me with fibromyalsia. All these health issues is exhausting mental, physically, and emotionally. I have attempted to reach out to many, but no response or they shrug their shoulders because they don't know how to treat me. I am hoping that someone has a resource or someone I can get in touch with.

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 2, 2020
In reply to @jwovoss "Thanks for the links to NORD, which is one of the websites I have been getting..." + (show)
@jwovoss

Thanks for the links to NORD, which is one of the websites I have been getting information from. I am not sure who I can get a second opinion from. My current doctor is not well verse in Bartonella, like most doctors in Colorado. According to NORD there are no physicians in this state. My natural path doctor has been the one who found the Bartonella, and even she is having a hard time treating my diagnosis. I'm not sure where to go. I seen many specialist, such as a neurologist and they just diagnose me with fibromyalsia. All these health issues is exhausting mental, physically, and emotionally. I have attempted to reach out to many, but no response or they shrug their shoulders because they don't know how to treat me. I am hoping that someone has a resource or someone I can get in touch with.

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@jvovoss I’m really sorry to hear your having such trouble getting a diagnosis! I have 2 suggestions: you might find an infectious disease doctor (ask at your local hospital) and/or a rheumatologist ( the good ones have been educated in putting all the diverse symptoms together when diagnosing). Check with the major medical centers near you or a university medical center.
What symptoms specifically made your naturopath think of cat scratch fever? We’re you diagnosed with this 4 years ago or have you had all these symptoms for a long time?
Let us know what you are able to learn.
https://www.centerformultisystemdisease.com/services/autoimmune-disease
You might also try this physician in Denver

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darkarta | @darkarta | Dec 3, 2020

Its strange I was just researching gut/autoimmune.they think I have RA,but prior to this I had a few attacks of diverticulititis.My whole body would ache before an attack.When I brought this up to my GI just lately he said he had many patients who complain about body aches.I believe there is a connection and there are many articles that suggest the Rheumatology community are also aware that there may be a connection.I intend to bring this into the discussion after Xmas and to explore whether treating RA and the gut microbiodome together may be a good solution.This may not address your topic in particular.just wanted to bring it up and see if anyone knows anything about this.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 4, 2020
In reply to @darkarta "Its strange I was just researching gut/autoimmune.they think I have RA,but prior to this I had..." + (show)
@darkarta

Its strange I was just researching gut/autoimmune.they think I have RA,but prior to this I had a few attacks of diverticulititis.My whole body would ache before an attack.When I brought this up to my GI just lately he said he had many patients who complain about body aches.I believe there is a connection and there are many articles that suggest the Rheumatology community are also aware that there may be a connection.I intend to bring this into the discussion after Xmas and to explore whether treating RA and the gut microbiodome together may be a good solution.This may not address your topic in particular.just wanted to bring it up and see if anyone knows anything about this.

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@darkarta - Not sure if you have seen the following info but thought I would share it

"Sep 13, 2019 — It is well documented that patients with rheumatoid arthritis (RA) are at ... malignancies, infections, diverticulitis, osteoporosis, and depression."
- Managing Comorbidity in RA: Multidisciplinary Care Team Model Essential: https://www.rheumatologyadvisor.com/home/rheumatoid-arthritis-advisor/managing-comorbidity-in-ra-multidisciplinary-care-team-model-essential/

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1 reply
darkarta | @darkarta | Dec 4, 2020

Hi John,
I am not talking about cormorbidity.I am addressing the issue of the direct relationship between gut health,inflammation,and development of RA.Not being 2 seperate things-but one thing.

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darkarta | @darkarta | Dec 4, 2020

here's a link to a simplified explanation,however there are some scientific studies linking gut inflammation to RA inflammation. https://www.healthline.com/health-news/could-balancing-gut-bacteria-be-key-to-unlocking-ra-012715

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