posted
I have been treating lyme since 2011. I have been in maintenance for a few years where I take 1 week of abx and have 5 off. The goal is to increase the time between abx weeks. The symptom that I haven't been able to resolve is cognitive. By week 5 I am dying to take abx because I am so confused etc. After my abx I clear up and am very focused etc. At my last appt I told him I needed a break. So he really cut the amount of abx I take during my week on and increased my weeks off.
With this new protocol my cognitive is bad the whole time. I dont receive the big bump after the week on. And my cognitive goes down from there until my on week which doesn't really do what it did.
Cognitive is the only symptom that abx improves. I think the rest of my issues are from diet and my gut.
Any suggestions as to what the abx are doing for my brain? I have a hard time believing I still have bugs in my brain after treating for all these years.
[ 09-07-2021, 07:04 PM: Message edited by: terv ]
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
I have been on abx for many years, and my gut seems to be ok. I take plenty of probiotics, plus sacchamyoices boullardia, an hour or two after each dose.
I also was still foggy headed when most other symptoms seemed to be gone (fatigue has never gone away).
After some research, I started treatment with a Doug Coil machine. That's when my thinking cleared up. I've been rifing for over a year and a half.
I don't think there is one answer for all of us, but we all need to throw everything we can at this illness. I hope you find what works for you.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Lymetoo, How much curcumin do you take? I have never taken that regularly. Otherwise it feels like I have been on every brain supplement possible with no improvement. Nothing seems to touch this but abx.
Daisys,
If you stop rifing do your symptoms come back?The one time I kind of looked into rifing, it seemed so complicated. I wish probiotics had stopped the damage to my stomach. At this point if I eat the wrong thing, my pain really flares. And now for some reason I think certain strains (bifo) make me more constipated than I already am.
The reduction of inflammation when taking abx is the only thing I can think of for the improvement of cognitive function. Unfortunately abx dont take away any other inflammation I have. Some of my inflammation has improved with the reduction of abx. It is beyond frustrating. I am so ready to move on and I am sick of spending money on stuff/doctors that dont help
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
When I first started rifing, symptoms would come back if I skipped a frequency.
I think Babs is no longer a threat. I'm not sure because I have a low body temp, and sometimes a low grade fever. It could be anything.
I used to have to rife 2x a day for Bart or I would get a return of foot pain. Now I rife for bart one time most days, and skipping a day now and then doesn't seem to hurt.
There's so many choices, I'm not half done trying different ones to see if I react. But, I think breaking down the biofilm is very important.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Your gut is your brain. Literally, it's connected.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Then why would it get better with abx? It seems like it would get worse when I took them.
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
I don't think I made myself clear (not new thing). If the gut and the brain are connected, and I believe they are, why would taking abx make my brain better?
It seems that the brain would get worse because I would be making my stomach worse.
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
After treating since 2011, I am having such a hard time coming to terms that I still have bacteria in my brain. All my other issues can be explained by diet/gut. However I dont know what else it could be.
I can't do it anymore.
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
It freaks me out too. Knowing they like to be in the brain, and also the eyes, is hard to accept.
Please let your LLMD know how you are feeling, with all details. They see so much. They can tailor your treatment to where you are right now.
A few years ago, I was in a horrible bad mood for a several months. I could have crawled out of my skin. It resolved, and then later I heard that it's called Lyme Rage.
Anyway, I'm rooting for you. We can do this.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Unfortunately abx did nothing for my Lyme and Co's, esp cognitively. Made me even more sick and my quality of life has greatly diminished in the last 2.5 years. I did herbs as well, only sicker and was told those weren't herxes.
Haven't done any treatment in over 2 months with no improvement. No relief.
Sad to say I think treatment permanently damaged my body mentally and physically. Cognitively I'm a mess.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
I spoke with my LLMD last March about this which resulted in the reduction in abx. Unfortunately that was a failed experiment. I see him at end of October and will address it then.
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
For some reason it occurred to me that while never labeled/diagnosed with chronic fatigue syndrome, maybe that is my problem. Apparently CFS also goes along with Myalgic encephalomyelitis. ME/CFS.
everyone probably knows this and I am late to the game.
I am sure there are lots of threads on lymenet about ME/CFS but I need to search. I did find the one below:
My LLMD is insistent I have Craniocervical instability (CCI). However the chiro told me to go to says "no". LLMD is annoyed.
I haven't gotten to the point as to whether ME/CFS is caused by bacteria in the brain or somewhere else. Maybe the abx are treating ME/CFS by reducing inflammation and/or killing bacteria which in turn makes my cognitive better.
Posts: 834 | From Somewhere | Registered: Nov 2010
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Do you think your were hammered too much with abx at the start and the huge die-off caused your decline?
When you complained to your LLMD about your issues did they immediately back off? How long did you "suck it up" suffering before you cried "uncle"?
I am sorry your are going through this. I wish I knew whether removing abx after starting treatment would return you to baseline. That would be an interesting data point to determine if decline permanent. Something to ask your doctor possibly.
Watching my mother-in-laws cognitive decline from lyme is what keeps me going. I can't end up like her. Sometimes I wish I had some other medical condition that would kill me early before my kids have to deal with me and my lyme dementia.
Posts: 834 | From Somewhere | Registered: Nov 2010
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Maybe your treatment activated latent/dormant infections so now you have more stuff to treat. So that is why you can't return to your baseline.
Others have probably suggested this but I am too lazy to read through the posts.
I had to perform yearly IQ tests to prove cognitive disability. They are really interesting to do BTW.
My first test result was 30 points less than my IQ before lyme infection. Before treatment but with lyme diagnosis work was definitely more difficult and performance sub-par but not as has bad it would have been with that 30 point decrease IQ. They would have found a way to lay me off if that had been the case.
So treatment made everything significantly worse. I couldn't even draw a clock during the test. Gradually year after year my IQ improved.
Posts: 834 | From Somewhere | Registered: Nov 2010
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posted
The scary thing about "CFS/ME"...there is no cure and it gets worse with age.
I've read mainstream medical articles on CFS/ME and they tell you the usual...supplements, healthy diet, cognitive therapy, low intense exercise...yada yada yada.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
After 4 months of treatment on 3 different oral abx she took me off as I was not getting better. That was the first protocol.
Since I started treatment I've been on 5 different protocols, all with no success.
I've always had high titers for EBV and was put on a few anti virals with no relief. I believe that was my issue last month when I suddenly was so sick, felt like I had the flu, my temp was over 101. I had 2 negative PCR Covid tests and people think I still had Covid.
Who knows anymore. I still don't feel right.
The fatigue is awful, body aches, I sweat alot now, skin burns and feels hot to the touch( no temp though) I have daily headaches, my throat, ears and jaw hurt at times. Dizziness, memory loss, brain fog, bad anxiety.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
I have been diagnosed with CFS/MI, FM, and Lyme. I always thought that it was one illness.
A year or so ago, I read about a study with 4 groups of people donating spinal fluid which shows what is circulating in the brain.
The groups are normal, CFS, FM, and LD. What the results showed is that the 3 illnesses all have a different amino acid circulating that are not in the normal person's spinal fluid.
The researcher was Dan Peterson, who was one of the first doctors to call the CDC and report what would be called CFS.
Recently, my LLMD told me I no longer have symptoms of LD, but still have symptoms of CFS and FM.
I hear some have gotten back to their normal life. Most of them are not sticking around in these types of forums, which is our goal--to get back to that busy life we had before.
So, we do all need to keep plugging away, like Lymetoo says.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Last week my body had a total temp regulation meltdown. While I had my theories as to why this happened doctor thinks it was from mast cells/histamine issues. he then went on to write that cervical instability related to mast cell disorder.
Ergo (gotta love that word) my cervical instability is giving me mast cell issues which then caused the temp regulation issue.
Searching on cervical instability and mast cells showed a correlation.
More searches showed that ME/CFS could be related to mast cells. Here is a recent article discussing ME/CFS being triggered by COVID and one of the co-morbidities was mast cells.
quote: ME/CFS can be triggered by COVID-19 in adolescents and young adults. Further work is needed to determine the pathogenesis of ME/CFS after COVID-19 and optimal methods of treating these patients. Our preliminary study calls attention to several comorbid features that deserve further attention as potential targets for intervention. These include neuromuscular limitations that could be treated with manual forms of therapy, orthostatic intolerance and POTS for which there are multiple medications and non-pharmacologic therapies, treatable allergic and mast cell phenomena, and neurologic abnormalities that may require specific treatment. Larger studies will need to ascertain the prevalence of these abnormalities.
quote: Either way, the study suggests that antigens that remain in the CNS after antibiotic treatment appear to be the cause of persistent inflammation, which may be linked to the neuropsychiatric symptoms of PTLDS.
and
quote: The authors do suggest that drugs designed to curb neuroinflammation may be able to treat PTLDS. Interestingly, there is a lot of research showing the antibiotic minocycline is commonly used to inhibit proinflammatory microglia (a certain kind of glial cell). Other medications used to treat infections like ceftriaxone and rifampin also have been shown to inhibit neuroinflammation.
At my last appt about 6 months ago, he cut my mino in half and removed my rifabutin. My cognitive has been really bad since doing this.
Posts: 834 | From Somewhere | Registered: Nov 2010
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