IV abx?

Is it worth it to try IV abx after almost a decade of illness? My symptoms are heavily neurological and they are out of control. Quality of life is in the tank recently. I'm not able to really anything other than lay around waiting to go to sleep. I was hoping DSF would work well like it did for me previously several years ago. I built up my dosage slowly to my target dose this time over 4 months. I reached my target dose, 400mg, about two months ago. I have had to stop and start several times over the last two months due to symptoms being unbearable, lack of appetite, and nausea. I added in MB about a month ago at 10mg BID. Lastly I started taking glycerin based hottunyia and Cryptolepsis recently. I was hoping for more progress by now and am unsure what my next steps should be.

Post Edited (Lymie24) : 9/19/2024 2:39:53 PM (GMT-4)

Girlie said...

Lymie24 said...
Is it worth it to try IV abx after almost a decade of illness? My symptoms are heavily neurological and they are out of control. Quality of life is in the tank recently. I'm not able to really anything other than lay around waiting to go to sleep. I was hoping DSF would work well like it did for me previously several years ago. I built up my dosage slowly to my target dose this time over 4 months. I reached my target dose, 400mg, about two months. I have had to stop and start several times over the last two months due to symptoms being unbearable, lack of appetite, and nausea. I added in MB about a month ago at 10mg BID. Lastly I started taking glycerin based hottunyia and Cryptolepsis recently. I was hoping for more progress by now and am unsure what my next steps should be.

Yes, definitely try the IV abx.
My LLMD recommended IV abx for the hardest cases including those didn’t treat the infections early on.
He recommended IV abx for me because I had the infections for over a year and IV abx penetrate the blood/brain barrier.
I couldn’t because he wanted me to go to DC for each new IV antibiotic I would be taking.
He insists on monitoring his patients with each change or add.
I live on the west coast of BC Canada. Each trip to DC cost me over $5000. (Three flights, there and back,meals and hotel room.

5000$ Wow! I'm sure it was worth it though since I know you got better.

I'm not currently with Jemsek. If I went the IV route I think I'd rather do it with my local doctor as it would be much less costly and travel intensive. I wonder what Jemsek's IV protocols look like? I know the standard IV abx for Lyme is ceftriaxone but don't know much outside of that.

Garzie said...
worth a try

other thoughts

1, he does say he can get most people well with oral abx - even if he thinks they would do better with IV but cant - like Girlie -he says it just takes longer

2, could the worse symptoms right now be partly herx from the disulfiram, MB, Herbs added recently - i know we all want rapid results - but 2 months really isn't very long to see a response if you have been sick with Lyme for years - i have been treating with abx since last June - so nearly 15months - and progress has just been very very gradual - after just feeling worse for the first few months.
there is also the question of how much progress one is expecting in a few months and how one decides to measure that
i can tell you that if i was trying to measure it subjectively based on how i feel from month to month i would definitely struggle to know if i was improving or not - but when i use proper objective measures and track them over time - i can see i have moved foreword considerably.
if one is expecting radical results - this kind of careful tracking might seem unnecessary - as you might be expecting to see a big change in a few months and that would be obvious right?
but thats not been my experience - so now i plan for v gradual incremental changes and set out to be able to measure those so i can guide treatment decsions - as i am self treating
( its working for me - slower than i would like - but i am around 75% recovered now - so its working for me )

3, what about doing an inventory of possible blocking factors affecting your progress
i think this approach has some merit in tough cases like yours and mine - as presumably we wouldn't have got sick in the first place if there were not other factors at work back then and possibly now - and there are a bunch of things that can just add to the load on our systems enough that we just cannot respond to abx.
-sleep issues
-stress
-nutritional deficiencies
-overlooked infections
-hormonal imbalances
-gut issues
-co-morbidities
-etc
there is a long list of potential blocking factors

Dr J lists many of them in his blocking factors YouTube video
Dr H has his own version in his 16point MSIDS approach

neither are probably exhaustive - but both follow the same principle - ie additional loads on the patient cause them to get stuck and not recover - so they are a good place to start

IV is expensive - and not without risks- so i think i would start here

I have been on DSF for 6 months total only two months at target dose. I was unwell before I even started the DSF. I did oral abx thorugh Jemsek from about April 2022 to May 2023. After May 2023 I did a little bit more abx treatment but trailed off of it and tried herbal therapy again. Point being I have been in treatment more or less constantly for years maybe with short breaks in between. Based on my previous experience with DSF I would expect there to be some noticeable progress after 6 months but I don't think there has been.

In terms of co-factors:

1. Sleep is good.

2. Stress is okay. Being miserable and unable to do anything is stressful. Chronic neuro illness is stressful because feel like crap constantly and unable to tolerate much stimulation lots of the time. However, I'm not overly stressed. I'm in a safe place with loved ones and I don't have to worry about the basics in the life like housing, food, money. I have developed stress reduction practices such as meditation many years ago. Admittedly I have fell off the wagon with being consistent with my practice. I do need to establish that consistency again. I have experienced the benefits that come w/ regular practice. They are great, but, stress reduction techniques like meditation only help making dealing with chronic illness easier. It doesn't get rid of the illness. Also I have found it much more difficult to meditate when the neuro symptoms are raging.

3. Nutritional deficiencies: None that I'm aware of

4. Co-infections: Maybe but not sure. I've had treatment aimed all the 3 Bs and EBV over my nine year journey. I sent my doctor a message today asking about FISH testing and/or other testing methods through Igenex. My big issues with Lyme/co-infection testing is it seems wildly unreliable. In the past I've done the standard ELISA/western blot, Igenex western blot, DNA connexions PCR, and ArminLabs Elispot. I've recieived varying results of positive and negative from each test. Considering how expensive these tests are I am skeptical of buying them. I am willing to spend whatever it takes to treat my illness but I'm not willing to throw money into a fire pit for no reason.

5. Hormonal issues: Had an extensive horomone profile recently. All good.

6. Gut issues: Definitely an issue. I have put a lot of work into my gut issues over the last couple years without much results. Diet, probiotics, prebiotics, leaky gut supplements, Bone broth, Keifr...the list goes on.The interesting thing is I have improved my poop form without the associated improvement in gut symptoms. My poop is mostly solid. I rarely have loose stools these days. It does look "sickly" for the lack of a better word sometimes. I'm suspecting that my chronic neuro issues are causing digestive dysfunction that are leading to SIBO/dysbiosis. That's just speculation however.

I like Dr. H's MSIDS model, and I have had his book for a long time. I've tried addressing all those co-factors w/o much success. I have been down most paths you see commonly talked about such as mold, metals, etc. I would love to go to Dr. H's clinic but last I checked they were accepting patients.

Post Edited (Lymie24) : 9/19/2024 3:06:44 PM (GMT-4)

Bhava123 said...
Dear Lymie,

- What kind of neurological problems conretely are you having? Do they stay same for days or for weeks or do they change?
- What kind of meditation have you been practising? How are neuro issues intervening or preventing you for doing it? Is it actually helping you to accept or deal with it?

I myself have been trying something similiar, applying mindful presence/attention on pain, painful sensations and staying with at first, then going into the pain itself. By doing that, there is supposed to be sort of going beyond or integrating with painful sensations - at least not adding more with my aversion or rejection - that kind of practice - staying only with feeling, pure feeling without thinking - keeping moment by moment clear awarenss, then there is something releasing or healing taking place. Sorry for my english, but this is sort of practice that I have been trying, but its difficult if pain is too sharp or overwhelming or when my mental condition is already disturbed or restless, first I need to relax and take care of that. Then being in more calm, relaxed and clear condition I can do something of that sort, together with some simple breathing practices. This is my experience.

In any case from what also Garzie and Girle wrote down, I seem to be in this club too. I had high hopes for Daps protocol, and have developed mild anemia. Before continuing with all essential components, at the moment I m still taking this:

Abx:
- Mino 2 x 100mg / Cefuroxime A. 2 x 500mg / Claritromycin 1-2 x 500mg / Rifampicin 1-2 x 300mg / Plaquenill
1 x 200mg (every second day MB 30mg and Nystatin 500 000 Ui)

Herbs:
- 2-3 times per day Jap.Knotweed, Ch.Skullcup, Andrographis, Cryptolepis tincture, Black Wallnut, Houytuinia, Artemisia annua, Vilcacora

- Plus all the usual agents against biofilm and supports - Xylitol, Stevia, NAC, Omega 3, Glutatione 500mg, Vitamins C,D, B komplex, Chlorella, Maitake etc etc.

I guess this is a standard combo of abx and herbs and still I keep having various neurological issues and recently more also lymph nodes pain, sharp and dull pains in brain, getting better than worse, I cant say I m moving somewhere, but hopefully at least not getting worse. Basically I m gambling, hoping for improvement. But sofar I assume at least there is some supression of lyme and co, but for eradicating I hoping for high dapsone protocol. These days I m for example waking up in a bad shape, with headache and broken apart, then gradually its getting better and better, I think someone shared a similiar experience in the other tread.

As for the IV abx, in our hospitals they are giving 14-21 days Ceftriaxone for neurolyme, as a medical standard according the official blueprint approved by health ministry, but I m doubting whether abx monotherapy really helps that much and according to what i have heard, some are helped by it, some not at all and some have relapse. Our local private Lyme clinic is offering IV abx, cheapest being IV metronidazole/flagyl for 1 week for 100euro for their patients.

All of you, including Garzie, Girle, are more knowledgable and experienced than me, so I really have nothing more to say, except for saying good luck and may you will get better!

Hey Bhava123,

I have been following and conversing with you on your Dapsone thread. It's probably a good call not to take that drug on your own. I think Horowitz's Dapsone protocol shows much promise but is potentially dangerous. Close supervision by a knowledgeable doctor is important.

I am having pretty much every neuro symptom under the sun! LOL. They have stayed the same for a long time now though they do vary in intensity, but sometimes they can go on at a high intensity for a week or more. I can feel the inflammation in my brain, spinal cord, and nerves. It has debilitated me. I am often in the wired but tired fight or flight panicky mode. This is worse when I can feel that my inflammation is worse. I have much brain fog and lack the ability often to concentrate or deal with lots of stimulation. I can't really drive. I can't even read much of the time! It's torture as I have usually no good way to relax and pass the time other than napping or putting a light comedy from Netflix or something on in the background. I'm not able to exercise much outside of walking my dogs. This sucks because exercise in itself is essential to my mental well being.

I am having a hard time meditating, I think, due to feeling uncomfortable from the neuro inflammation/POTS/dysautomnia. Several years ago I read a book called "Waking Up" by Sam Harris. I really liked that book and I downloaded his app by the same name and started practicing meditation through that. That was extremely helpful to me. That practice delves into what is known as "secular Buddhism" and I think there is great wisdom in that practice. You were describing it your post about being mindful and aware without judgement, attachment, and aversion. Buddhism has some great concepts that I believe to be true that can be known by experience and also intellectually. Concepts such as attachment leading to suffering, emptiness, mindfulness, no self, etc. My suffering has been great lately and I have definitely been lost in my mind ruminating. Perhaps I need some guidance and should re-download the app and practice through that. I seem to be having a tough time keeping a consistent meditation practice on my own.

You're totally right about feeling that these treatments are a roll of the dice! When I first became ill I had loads of hope when I got on new treatments as I thought I had finally found the answer to my woes. As the years have passed by and treatment after treatment failed I am super skeptical before I even start treatments now.

I will say your treatment protocol looks good. The mix of abx, herbs, biofilm busters, etc. look right in-line with what I would expect from a LLMD. How long have you been treating? Sometimes it takes quite a while to see a difference. Sometimes it can feel like no progression is happening and then boom out of nowhere significant progress is made. Hang in there.

Personally, five years ago I took Disulfiram and after 3-4 months, and several starts and stops, I had significant progress. That time period was as well as I had ever been in my illness with Lyme. That time I started at 500mg a day (nobody knew that was a bad idea yet) and the Disulfiram was obtained from the normal pharmacy. This time I built up slow over 4 months to my target dose (400mg) and in total I have treated for six months w/o any benefit. Considering my poor condition this has been extremely disappointed and basically I'm tired of having zero quality of life and suffering immensely every day. That's why I'm considering IV abx.

Interestingly, it never occurred to me until just now as I typed it out that my first round of Disufiram was with the standard tablet you would get from your local pharmacy. This time I am using compounded acid resistant capsules. These are way more expensive but they are supposed to get the Disulfiram past your stomach where it can complex with copper and cause neuropathy. This reminds me of a past post I've seen on the DSF facebook group where people were discussing if the acid resistant capsules actually made DSF less effective based on whatever mechanism it works again Lyme (which still isn't known to my knowledge.

Anyways, thanks for your message. Keep us updated on your progress and I hope all goes well for you.

Post Edited (Lymie24) : 9/20/2024 12:53:41 PM (GMT-4)

Dear Lymie,

I m sorry to hear about your suffering. I can understand that it must we very difficult. For people like us I think it is very important to find ways how to relax and have at least some rest and good time, that is not covered by some kind of pain. I m sometimes also watching netflix or reading, but when I m in a bad shape i cant even watch a movie to relax my mind. Yes exercises are essential also for me and alos light, easy work in the garden is relaxing, and also to move a little - is a kind of resource.

Now I m mainly afflicted with lymph node pain and I not sure if it is auto-immunity, lyme or bart or what. I cant track any relation with any medication, so perhaps I will need to investigate more into it.

Then yes, I have found our conversation helpful and I kind of agree. I m actually following LLMD and recently also had some communication with dr H. I m taking your advices into consideration.

For me what is strange or hard to understand, that after many years, having taken treatment from doctors like Dr H, still neurolyme has become so severe for you. Unfortunately its a bit of gambling or there is hope for a particular protocol, approach, treatment to work, but there is never any guarantee and even if one tries ones best, following a protocol precisely, it goes its own way, sometimes even getting worse, how strange!

Yes, for me any bodily exercise, mild work like garding, are very important and I have found out i have to like it, i cant force or push. Also mentally, if possible not to stay within any vulnerable, entangled condition too long but trying to be in more healthy state of mind, which is sometimes, especially amidst of physical pain, quite difficult. Symptoms getting worse triggers worries.

I have been treating now almost 2,5 years. It took me almost a year to get tested for all the coinfections. But still I do have some hopes for Dr H daps protocol. The one I have described before I m pulsing, not taking continously. Sometimes I can feel its too much abx and I find pulsing approach more fitting. But I m still pretty sick and have all sorts of symptoms.

I cant take disulfiram due to taking alcohol based tinctures, esp. cryptolepis. Previously I did few pulses with metronidazole, and which was also quite intense, and perhaps remains as an option if Daps protocol will fail. Thus I was adviced by LLMD. He also suggested going for IV, but here its very expensive, not far from the amount you are mentioning.

Yes I m a kind of admirer of buddhism and what you are describing as "secular mindfulness" is perhaps what helps me, if I m able to do it - which is easier in a normal, non-afflicted condition, and more difficult with pain, with sever pain impossible. But if I can manage to - as you say, be less judgemental, ruminating - and stay with kind of bare attention and only observing, then it a kind of helps. Also asking questions like "how long does this painful sensation stay?" helps me to see that it actually does not stay for long, it goes. But pain and sort of disturbed mind set cant become my experiential center, eg, becoming a main reference, becouse then everything is colored by that pain, which stay not only physical, but becomes overhwheling and is dragging me down. So I m trying to experiment with it. interestingely, what also seems to help is to ask "who is having this pain?" and trying to see that sense of self, if I can separate it from painful sensation, it gives a kind of relief too. But it works only occasionaly, not every time.

It already helps me to share and exchange here, and I m grateful we can be in contact and communication in this way. I m afraid or un sure if I can speak of progress, but how things will go, I will try to share and ask. I wish there would be a clear treatment for all of to end all this suffering we have to go through.
Also you, Lymie, write how are you and how is your treatment going. May you find a good and effective IV treatment.

I have to say also thank you to Garzie, Girlie, who as forum moderators are really kind, empathic and supportive and also wise, they are providing advices, support and help. And to other patients too, I wish good luck in treatment and if possible, quick recovery!

Bye, B