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Posted 10/11/2021 10:02 AM (GMT -5)
Hey everyone-
I have been dealing with severe chronic illness for almost 4 years. My main symptoms are brain based- severe brain fog, inability to do any sort of deeper level thinking, feeling like I have a severe brain injury, dissociation, time and events have no meaning, severe bouts of anger and mood swings, autistic like behavior.
I also have some other symptoms with other body systems but they are very mild in comparison and don't really interfere with my life as much as the brain ones do.

I started out focusing on mold and moving into a clean home helped tremendously initially + binders, detox supplements etc. . However I was still left with very bad brain symptoms. I have tried heavy metal detox, parasite meds (not for all too long), etc. with no noticeable effects. Then in the beginning of this year I had a positive Igenix with lyme, bartonella, RMSF, etc. I started with an herbal approach and IV ozone and IV silver but these did not change anything. I have now been treating with abx- rifampin, doxy, bactrim + methylene blue + oil of oregano. It's only been a few months but once again I feel like my brain is just super messed up and inflamed and none of the drugs and supplements really do anything for me. I will continue the antiboitic approach for now and see if anything begins to shift.

After reading some of the posts from the past I found that the member "Aerose" situation sort of sounded mine, with not many interventions helping them. The most beneficial intervention I have done is probably "mold avoidance", and I experimented with living in different locations and found that camping in a pristine location for a week or two gave me a few moments where all of my brain symptoms would just completely go away and the inflammation seemed to stop. This would last for like 30 minutes, and I would be super happy, calm and clear, but then symptoms would come rushing back soon enough. However it is very difficult for me to stay camping in a pristine location for long periods of time while it is cold, with severe brain symptoms. I also noticed much deeper sleep in these locations.

I have suspected maybe more of my issues are autoimmune, but my Dr. said that since the ANA autoimmune tests and my immunoglobulin levels were OK this is not the case. Maybe a test like the Cunningham panel would shed more light? I am thinking IVIG could help but then again I usually get my hopes up on treatments and then they do not work.

I also played soccer my whole life and headed many soccer balls, and while I don't think this is the primary issue, maybe a combination of TBI, mold, lyme put me into an autominnune state. Any thoughts about the situation would be great especially if you or someone you know has similar symptoms and is not very responsive to treatments. Also I have taken many MCAS, histamine supplements with no noticeable changes as well.

Thanks.
Posted 10/11/2021 8:06 PM (GMT -5)
Lyme Guy16,

Hello! Welcome to the forum. Sorry to hear your situation. I have mold illness, too, but I can’t imagine doing the extreme avoidance thing. I have tremendous respect for anyone brave enough and determined enough to do that. Really glad you were able to do it for some time and to experience relief, even if brief. Just experiencing that lets you know it’s possible to recover.

Yes. Aerose91 has a similar presentation. His email is enabled. You can email him. I emailed him a few days ago to check on him, and he responded. I do recall him mentioning the Cunningham panel.

Are you being treated by Dr M, the bartonella guru, or someone else?

You said you’ve only been treating with the combo abx a few months, but your brain feels more messed up and inflamed. Have you continued to detox and take binders since starting the antibiotics? Do you do sauna? Have you used Cholestyramine as a binder?

TUDCA was very beneficial for me as far as reducing my toxicity and inflammation. It was really a game changer in my case, at least initially. I never found binders to make me feel better with the exception of Zeobind, but that only made me feel better for about 2 weeks.

Do you take Zyrtec? That helped me some with inflammation, too, initially.

Two months isn’t very long. I know this doesn’t sound encouraging, but I have heard stories of really sick people with bartonella who had to treat a really long time before anything changed. Here’s an interview with a bartonella patient (a good story), if you care to watch:
https://youtu.be/zi3v_d5ndpw

Have you had any MRI or SPECT scans done? Did they show anything?

Have you tried DNRS or the Gupta program or similar?
Posted 10/11/2021 8:12 PM (GMT -5)
With head symptoms like that you should get checked by a biological dds.
Do you have dental work?
Posted 10/12/2021 1:32 PM (GMT -5)
Faith,

Thank you for the thoughtful response and the suggestions. I did watch the video you included and suppose it is a long journey as you say.

I see MBC in New York (not sure if we can mention names), she trained with dr J, M, etc.

Does Dr. M accept patients? From what I heard he only does consults and it is very difficult to see him/ very expensive. Any info on this would be greatly appreciated. I did have a Neuroquant MRI it showed some underactive regions/ low blood flow etc but no lesions, anything crazy etc.

I am also curious about the doseages of rifampin and rifabutin if you know. The video you said mentioned rifampin doses of higher than 300 mg? And is rifabutin known to be much stronger? That is what I have heard but my Dr. mentioned they are very chemically similar.

Thank you again!
Posted 10/12/2021 1:45 PM (GMT -5)
standard rifampin dose for bart is 300mg 2x

Dr M often uses 600mg 2x

then later switches to rifabutin

i think the doses of this are about half that of rifampicin
Posted 10/12/2021 2:03 PM (GMT -5)
Thanks. Sorry for all the questions but also I know hydrocortisone if often prescribed with rifampin. Do you know if its necessary to take this?
Posted 10/13/2021 1:47 AM (GMT -5)

lyme guy16 said...
Thanks. Sorry for all the questions but also I know hydrocortisone if often prescribed with rifampin. Do you know if its necessary to take this?

I didn’t take hydrocortisone with the Rifampin and I was ok and also had improvements
Posted 10/13/2021 6:57 AM (GMT -5)
lyme guy,

If you have concerns about the hydrocortisone, talk to the doctor. It could be based on your cortisol tests or the doctor’s assessment of your likelihood to have problems.

I don’t know if doctors explain this well to patients beforehand, but Rifampin is hard for some to tolerate. It’s also not a drug that can be stopped/started like others can, but I don’t remember exactly why.

Please discuss in detail with your doctor and ask what happens if you start treatment with Rifampin and then can’t tolerate it.

I believe Dr M does stabilizing treatments and MCAS treatments and slowly ramps up the Rifampin dosage so that patients have a better chance at being able to continue treatment.

If you want to treat successfully, your body needs to be prepared and adequately supported.

Again, I would talk to the doctor. Rifampin is one of those drugs you kinda have one shot at. Also, your brain symptoms are on the severe side. Not everyone has that presentation. You will need to work closely with the doctor to quickly communicate any questions or issues you have along the way.
Posted 10/13/2021 1:39 PM (GMT -5)
ref Rifampicin
there was some suggestions in the literature that stopping and starting rifampicin might increase the chances of having an allergic reaction to it

but since then several llmds are using it even in pulsed regimes so it seems not to be a big issue
Posted 10/13/2021 3:53 PM (GMT -5)
Take a look at this older thread

https://www.healingwell.com/community/default.aspx?f=30&m=4098377
Posted 10/14/2021 4:00 AM (GMT -5)
did you ever figure out which abx was driving your kidney function drop Girlie ?
Posted 10/14/2021 8:11 AM (GMT -5)
Thank everyone. I have been working closely with my doctor. The thing is although I have these brain symptoms, I can tolerate the drugs fine and feel nothing. Not that I expect a miracle but I would think if bart is my driving factor, taking full doses of rifampin and bactrim would at least elicit some indication that something is happening.

Maybe I'm wrong but even these stories of people taking 1,2,3 years to heal, they at least feel something on the drugs. I will give it time though.. thanks for the help.

Also magoo2, I have seen a dentist and had a conebeam scan for cavitations. There may have been some small cavitations but I can't imagine paying 15-20k for a surgery and let a lone having a surgery right now. I'm in rough shape and can't imagine the recovery, and also most treatments have not worked so just going out on a limb for a 20k surgery that will leave me very weak sounds intimidating. Maybe I have an issue with tonsils and brain drainage? No idea
Posted 10/14/2021 8:13 AM (GMT -5)
The only drug I felt something on was clarithromycin, which caused me to feel very weak, lightheaded and faint. My Dr. had me stop this temporarily because it was a scary side effect for me, but maybe i will get back on eventually and need to work through it. not sure.
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