Open main menu
☰
Health Conditions
Allergies
Alzheimer's Disease
Anxiety & Panic Disorders
Arthritis
Breast Cancer
Chronic Illness
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Irritable Bowel Syndrome
Lupus
Lyme Disease
Migraine Headache
Multiple Sclerosis
Prostate Cancer
Ulcerative Colitis
View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders
Bipolar Disorder
Breast Cancer
Chronic Pain
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Hepatitis
Irritable Bowel Syndrome
Lupus
Lyme Disease
Multiple Sclerosis
Ostomies
Prostate Cancer
Rheumatoid Arthritis
Ulcerative Colitis
View Forums A to Z »
Log In
Join Us
Close main menu
×
Home
Health Conditions
All Conditions
Allergies
Alzheimer's Disease
Anxiety & Panic Disorders
Arthritis
Breast Cancer
Chronic Illness
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Irritable Bowel Syndrome
Lupus
Lyme Disease
Migraine Headache
Multiple Sclerosis
Prostate Cancer
Ulcerative Colitis
Support Forums
All Forums
Anxiety & Panic Disorders
Bipolar Disorder
Breast Cancer
Chronic Pain
Crohn's Disease
Depression
Diabetes
Fibromyalgia
GERD & Acid Reflux
Hepatitis
Irritable Bowel Syndrome
Lupus
Lyme Disease
Multiple Sclerosis
Ostomies
Prostate Cancer
Rheumatoid Arthritis
Ulcerative Colitis
Log In
Join Us
Join Us
☰
Forum Home
|
Forum Rules
|
Moderators
|
Active Topics
|
Help
|
Log In
Some pulsing abx questions
Support Forums
>
Lyme Disease
✚ New Topic
✚ Reply
❬ ❬ Previous Thread
|
Next Thread ❭ ❭
palermo
Regular Member
Joined : Dec 2023
Posts : 231
Posted 9/22/2024 7:34 AM (GMT -5)
hey folks, im having my appointment next week with dr Reinhard. I maybe will suggest to try pulsing, because my virus load always gets to wild after severals weeks of abx. So i got some question for you about
pulsing. When did you start pulsing abx? (did you first treatet long term abx (over3 months) and startet then pulsing) What abx did you mostly use for pulsing? What was the time between off and on? And did you took buhner herbs all the time or just in the off days? Thank you so much! Enjoy your sunday!
Quin
Veteran Member
Joined : Oct 2018
Posts : 2048
Posted 9/22/2024 9:04 AM (GMT -5)
I had a lot of trouble pulsing antibiotics when taking antivirals. The problem is that borrelia burgdorferi is susceptible to many antiviral drugs, including valtrex, so if you're taking this, you're not really pulsing antibiotics in the usual sense.
A particular problem was that if I stopped taking azithromycin or minocycline then the borrelia would wake up and become active and move around, then this would cause an especially bad herx when the bacteria died from valtrex. This caused a bunch of autoimmune problems, and I had to stop.
I found that minocycline was particularly immunosuppressive and led to viral relapses, so maybe try taking something like amoxicillin or azithromycin instead while you deal with the viral infections. Some people have problems with anti-inflammatory or immunosuppressive effects with azithromycin too, but I found it not as bad as minocycline.
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 9/22/2024 11:38 AM (GMT -5)
Hi Palermo, I have been pulsing my the combination I have shared in the other tread (IV abx). Previously pulsing more simple combinations like doxy-claritro, then mino-rifampicin, then more complex combinations. Most of the time I had a hope to be able to continue only with herbs, eg Buhner. But every time my symptoms relapsed. Now being off abx, I actually feel better in terms of less abx load, but most recently I could stay off abx only 4-5 days max 7 days. I hope to stay longer off, but its not easy knowing borrelia or bart have woken up and give more symptoms in the brain. Some symptoms or sensation change, some remain same or similiar. Shifts between strong abx combo and then going off might be intense, there is definitely a change of dynamics. Last time I really felt it was too much and I had some indications to better stop and go off. This is briefly my experience, but again I think Garzie and Girle have more experience and are more knowledgable. PS. Dr.Burrascano used to suggest even 2 month off period. I have tried to do that in the beginning of this year, mainly to help IS, but at the end i did not make it, I had to start taking abx, I felt overwhelmed and had tough neuro symptoms. Also it seems to me that body has some sort of intuition, or gives sings or signals, which, without interpretative bias, can be good. Of course gross pain in some organ can be such sign, but also like feeling of being overloaded with abx, there is a specific heaviness or feeling that its too much. Then going off there is a sense of relief and basically good feeling of being off-loaded. I dont want to sound irational but i believe there is some sort of body-related intuition.
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 9/22/2024 12:53 PM (GMT -5)
i am basically following Dr J's protocol for lyme
2 weeks on 1 week off ( actually 9 days off from friday night to the monday of the week after )
i'm also trying some additional or alternate abx on some rounds - but following the same philosophy he uses
you can find his presentations describing his protocols on Youtube
girlie has also posted her protocols here
i have been doing this for over a year now - and making gradual but cumulative improvements
i am doing this alongside - rather than instead of - all other treatments i have found helpful to date
my philosophy has been find things that help even a little - and then build more things on top of that in layers - rather than stop one thing and try another - as i think people can lose decades of their lives stopping and changing - going from the next big hope to the next one
its tempting to think there will be a single answer / wonder treatment - but my experience has been different - many things, each helping just a little, have moved the needle a lot if sustained over time.
so i still take
-buhner herbs
-supplements
-bromelain and other biofilm agents
-methylene blue
-t3 and t4 for thyroid
-exercise
-low carb diet
etc ect
i take the herbs etc continuously - as that's how i was using them when i found benefit - so that's how i continue to use them - but there is an argument to pulse the antimicrobial herbs also - but thsi is conjecture at this stage as we dont know for sure which would be best
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 9/23/2024 1:31 PM (GMT -5)
Hi Garzie,
I m pretty much following a similiar route, alternating abx and herbs, and gradually applying that which appears to help.
I m having a question though, which should perhaps be in the other tread... what is your experience with diagnosis and treatment of viruses, say common virus such as EBV, HSV, HBV, and their influence, after testing positive taking stuff like valacyclovir, isoprinosine, etc ? - These possible can play a role, but honestly I dont have any glue or knowledge at all, only I m obviously having herpesvirus giving sore on lips time to time. Not sure if going for tests and then trying to deal with it along the Lyme and Co, is important and helpful too.
Best regards
B
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 9/23/2024 1:52 PM (GMT -5)
i think the picture is likely complex and nuanced
on the one hand people with lyme and co - definitely have disturbed or dysregulated immune systems - this can mean they do not seem to get any viruses at all while ill with lyme ( this was me for 6 years)
but
we also see cases that are the other way - where people have attacks of shingles or other herpes family viruses
it may just depend on which way the hosts immune system is responding to the infections
on the other hand - several of these same viruses are implicated in creating cross reactive antibodies with borrelia - and so - in a population of people with known borrelia infections - there will be a tendency to over diagnose viral infections / viral reactivation based on problematic antibody testing.
remember large proportions of the population harbour these viruses - so some antibodies are normal in the general population - making the testing even less reliable as one has to select a "cut-off " above where most people have antibodies.
as a method - its cheap - but not good
however - if a person has obvious viral signs like shingles - then at least that is more clear cut
but with less specific signs and symptoms - like body aching, swollen lymph nodes etc these are just as likely to be lyme and co - so are not a reliable way to differentiate
if a virus really is reactivated enough to make a person sick - then PCR based testing should be plenty sensitive enough to differentiate between a false positive serologic test and a true viral reactivation
if you are confident you have virus reactivation - then i think i would see if there is anything herbal or natural or topical i can use to keep it under control - so you can continue with treatment of the bacterial infections - as they are the main culprit - and the viral stuff will likely resolve once the bacterial load is lowered and the immune system is working better.
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 9/23/2024 11:34 PM (GMT -5)
Dear Garzie,
thank you. It makes sense. Best wishes, B
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/1/2024 2:56 AM (GMT -5)
Hi Garzie,
you have mentioned that you are in off period for nine days (two weekends, weekdays in between). Is there any particular meaning or importance of this amount of days according to dr J? I have watched some of his videos on youtube where he says he pretty much learned from treating patients and he experientially developed his protocols.
Best wishes,
B
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 10/1/2024 8:10 AM (GMT -5)
as far as i know its just what he has found works best empirically
Girlie
Forum Moderator
Joined : May 2014
Posts : 48577
Posted 10/2/2024 12:42 AM (GMT -5)
Garzie said...
as far as i know its just what he has found works best empirically
Yup
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/2/2024 1:33 AM (GMT -5)
Dear Garzie,
may I have few additional questions?
- after off period, when starting abx again do you still have herx?
- which abx combination are you taking at the moment?
- do you take the same herbs when in abx on and off period? or do you lower doses or adjust when in on period?
- which particular biofilm busters and anti-cyst agents are you using? is it same in on and in off period?
I hope its not too many questions
Thank you for your answers in advance.
Best regards, B
PS. Also Girlie or anyone else please feel free to answer too, I m really interested to know more details or your experiences, what has been working for you.
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 10/2/2024 6:33 AM (GMT -5)
will answer what i can
yes i still herx every time i take antibiotics - but in general it gets more manageable as my recovery progresses
i basically follow Dr J's recommendations - but am
open to adding or rotating others that fit with his general principles
currently i take doxy, ceftin and one other antibiotic MWF of the on weeks - and i take tinidazole in the last 2 days of the on cycle
i take all herbs continuously - this is not based on Dr J - just my own philosophy of keeping what works and building upon it - i was doing the herbs long before the abx
for biofim i take xylitol for the 1st week in the on cycle
but i am currently also taking monolaurin, Bromelain, NAC, cistus, and various herbs etc which all have anti-biofilm activity
the tinidazole at the end of the on pulse is specifically to kill cystic forms of borrelia - including those triggered by Doxy and other antibiotics
palermo
Regular Member
Joined : Dec 2023
Posts : 231
Posted 10/2/2024 12:16 PM (GMT -5)
i guess it makes sense, also quite important to take a cystbreaker like tini or quensyl. Im adding tini next week to my protocoll too. But when the main die off is gone, im looking forward to do a protocoll like you. A pulse Mix of buhner herbs and 2,3 abx.
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/3/2024 3:32 AM (GMT -5)
Dear Garzie,
thanks for your sharing.
I have found this recent article to be helpful:
"I’ve found that the best way to treat this problem of chronic persistent infections with biofilm/persister forms of the bacteria is with a drug combination that hits the different bacterial forms. These are cell wall forms, cell wall deficient forms (L-forms, S-forms, cystic forms), intracellular forms, and biofilm/persister forms. In the case of Lyme disease, penicillins and cephalosporin antibiotics will effectively hit the growing cell wall forms of the bacteria; antibiotics like metronidazole, tinidazole, hydroxychloroquine, and grapefruit seed extract will address the cystic forms; intracellular antibiotics like tetracyclines and macrolides (azithromycin, for example) will address intracellular forms, but we need specific antibiotics to address these highly resistant biofilm/persister forms. Persister bacteria require 3 and even 4-drug regimens (in the case of resistant TB, even more). Some of the antibiotics used to treat TB, like isoniazid and rifampin, for example, kill growing bacteria, but rifampin and pyrazinamide are also needed to treat active bacteria that arise from reverting persister cells. These antibiotics have changed the course of previously untreatable diseases. We will be devoting a future Substack to the use of persister drugs like dapsone and how/why they’ve made such a difference in changing the course of chronic Lyme disease."
I have been reflecting also on the role of tini / metro and plaq - this is what we we have been discussing also previously in the other tread - , it seems that Dr H is suggested plaq to treat cystic forms. But unline pulsing of tini / metro he suggests taking plaq ongoingly during the whole protocol. I ve been wondering if there is any reality - checker, eg how to know if the anti-cystic agents are sufficently foing their job and that aspect of therapy is well covered.
Best regards,
B
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 10/3/2024 1:16 PM (GMT -5)
i think the only viable measure is if recovery continues
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/4/2024 4:21 AM (GMT -5)
Hi Garzie,
after 9 days off, being again on abx, after 4-5 days I again had severe herx - overhwelming pain that disabled me to do anything but sleep, and even in the night, after few hours, pain woke me up, so kind of strong herx, I thought of going to the hospital. Its stragne how much bacteria has multiplied and grown in only 9 days, if borrelia 's cycle of replication is said to be 24hrs...
In any case what seems to me, also in regards to previous post, is a kind of precision in abx - it seems to me that for neurological issues and more borrelia and co activite in brain, head, nerves, - seems cefuroxime is more effective than rifampicin. This was my experience also in August, when I also developed - after abx off period - more neurological symptoms and after Cefuroxime 7 days 500mg 2x daily together with mino, azi it got much better.
If I may ask further, your abx on period lasts for 2 or 3 weeks?
It is so sad that one has to take this kind of guess and try approach. In the off period I almost felt like a healthy person, almost no symptoms apart from small fasciculations. But it seems as long as there is active infection, treatment has to go on...
With regards, B
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 10/4/2024 6:19 AM (GMT -5)
strong herx after a break is not necessarily an indication of bacteria having regrown
one of the main reasons for pulsing strategies is to try to encourage bacteria to come back out of their persister state, where they are virtually impervious to antibiotics ( around 1000x more tolerant than normal mode bacteria of the same species ) and start behaving more like planktonic normal metabolising bacteria which antibiotics are designed to work against ( persister cells were not known when antibiotics were developed)
when they do this they are again much more susceptible to antibiotics - and able to be killed more easily
but, in reality they are not all behaving in a simple coordinated homogenous on/off manner - but each bacteria has a probabilistic chance of being in one of several states at any one time - so as we change the conditions the proportion being in persister state or normal state is changing with the circumstances.
thus the strategy for pulsing is based on getting more of the population to be susceptible - and thereby chipping away at the overall population more with time.
lab studies have show that this can be more effective than dosing continually with antibiotics
this, combined with the other advantages of pulsing, are the basis for its use
-less overall drugs are used - lower cost - lower burden on patient
-breaks allow detoxification and reduction in load on organs like liver / kidney etc
-may be less damaging to the microbiome vs continuous antibiotics
-breaks make the treatment easier to tolerate - not continuous herx reactions
-gives the doctor / patient a better means of evaluating progress - via monitoring herx during successive pulses
this is not to say its the only way to treat - plenty of people have recovered by using continuous antibiotic combinations also - its just another tool in the toolbox that can be used
i would expect relatively strong herx reactions on the first handful of pulses - gradually reducing as the bacterial load is gradually reduced - but its not always linear - sometimes its the second round of a given antibiotic combo that produces the strongest herx
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/4/2024 8:30 AM (GMT -5)
Dear Garzie
thank you for your answer. Always useful and both something new and something to be reminded.
Let me ask a little more closely, investigating this process:
- so the types of abx used are mainly focsing of free-floating bacteria, eg. not targeting persisters, eg more bactericid abx? (A friend who completely recovered from lyme advised me to keep taking abx on period some time after herxing finishes, eg, 2-3 weeks)
- with regards to quote from Dr H, he says that Dapsone (high dose) can actually treat persisters, eg even in dormant condition, or in biofilm. This is how I understand his POV.
- are there any studies or materials on Lyme pulsing antibiotics etc?
Thanks, best wishes
B
Garzie
Forum Moderator
Joined : May 2017
Posts : 6566
Posted 10/4/2024 1:49 PM (GMT -5)
hi Bhava
could you perhaps phrase your questions as a clear question - rather than a statement with a question mark at the end
that way think i may be able to understand what you are asking better and answer more clearly without causing the need for more back and forth
in general - all antibiotics - including those termed "persister drugs" were originally designed to work against rapidly growing planktonic bacteria and as a result have only limited effectiveness against persister cells - but since they are all we have - that is what is used.
even the definition of persister drug and non-persister drug classifications are misleading - because - lab trials show that adding conventional antibiotic like doxycycline to another drug increases the killing (or reduces the growth) of bacteria over time -
in lyme treatment we must kill both the easy to kill rapidly dividing bacteria - and the persister cells in the population - most of the focus is on the persister cells because these are the hardest to kill by far - and so anything we do to kill these - will by default kill plenty of the rapidly dividing ones
as a mentioned - in practice - individuals in a population of bacteria are randomly dropping in and out of persister states and back into normal growth over time - so its not necessarily helpful to think of them as separate populations.
in reality - its likely that most lyme bacteria in a human patient with chronic disease exist in microcolonies housed in biofilm - and as is normal in any biofilm - there will be a high proportion of persister cells present - which have dropped into this persister state due to pressure from host immune action - and nutrient availability.
we have no drugs that can kill all bacteria in these colonies outright without killing the patient
therefore the job is to whittle away at them over time
there are a few trials of pulsing antibiotics -
the one proof of principal study i believe we have discussed before - showed that a pulsed cephalosporin at achievable biological concentration killed all borrelia bacteria in the test tube after 4 pulses -- where combinations of 3 antibiotics given continuously for the same period of time in the same study did not
Bhava123
Regular Member
Joined : Jul 2023
Posts : 249
Posted 10/5/2024 12:24 AM (GMT -5)
Dear Garzie,
thank you for your answer. I dont have more questions. Have a good time and good luck in your treatment.
Best regards, B
✚ New Topic
✚ Reply