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Lamotrigine for borrelia

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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/12/2024 8:44 AM (GMT -5)
Hi guys, I have seen that some people have used here valproic acid/valproate/depakote for hitting borrelia, but I have never seen anyone trying lamotrigine. The mechanism of action is very similar for both of them, they inhibit sodium and calcium channels (among others). One of the advantages of lamotrigine over valproate is less side effects, so I thought, why not give it a go?

Well, after trying it, I can confirm it hits borrelia too. The three times I have tried it, it has given me a good herx. I am also taking valproate to hit borrelia, and it seems that valproate inhibits the metabolism of lamotrigine, so the conclusion I have reached is that combining valproate and lamotrigine is like doubling the power of valproate but with less side effects. My dose until today has been 500mg valproate per day + 100mg lamotrigine every other day. Just be careful because the herx is strong, use a lower dose to start in case you want to give it a go.

Hope you find this helpful.
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trkane
Regular Member
Joined : Nov 2021
Posts : 151
Posted 10/14/2024 6:14 AM (GMT -5)
Just curious - is there literature on this?

I have been on a lyrica/lamotrogine combo for years. To help with sleep and my many pain issues.

Make sure you are not getting a drug side effect. It is a beast to come off of. I started with 100mg 3xday and 9 months later have finally hit 50 mg 3xday. The withdrawal is awful.

I figure it will be another 6 months at least until I am off of it totally. Then I get to work on Lyrica.....
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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/14/2024 10:14 AM (GMT -5)
Hi Trkane, no, there is no literature on this. Same happens with other medication that works against these infections, they haven't been tested.

I've tried it and I can tell you for sure that it is herx, it is not a side effect of the drug.

I've read that there can be some withdrawal syndrome when stopping lamotrigine, but it is unfrequent or even rare from what I've read in terms of frequency distribution. Still, I'll bear that in mind.

Thank you for the information.
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dcd2103
Veteran Member
Joined : Nov 2019
Posts : 2440
Posted 10/15/2024 12:44 PM (GMT -5)

GeraltofRivia said...
Hi Trkane, no, there is no literature on this. Same happens with other medication that works against these infections, they haven't been tested.

I've tried it and I can tell you for sure that it is herx, it is not a side effect of the drug.

I've read that there can be some withdrawal syndrome when stopping lamotrigine, but it is unfrequent or even rare from what I've read in terms of frequency distribution. Still, I'll bear that in mind.

Thank you for the information.

How's the cyclosporine working? neuropathy still materially better?
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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/15/2024 2:15 PM (GMT -5)
Neuropathy has been good for almost a month. Two days ago I pushed too far with antimicrobials and I've had a setback, now neuropathy is higher and I've had to reduce the amount of abx to compensate. I don't know how long it will take to stabilize again, but what I have checked is that I have to go slowly ramping up medication. My crash has happened taking 500mg valproate/day + 40mg loratadine/day + 1g triclabendazole/day + 100mg lamotrigine every other day, all for borrelia, which is what I believe triggers my neuropathy.

What about you dcd, have you decided to try something else apart from IVIG for your neuropathy?
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dcd2103
Veteran Member
Joined : Nov 2019
Posts : 2440
Posted 10/15/2024 3:30 PM (GMT -5)
Hey man, sorry to hear about the flare. That's a lot of antimicrobials so I'm not surprised you flared. I'm similar to you, anything that kills bacteria sends me into a tailspin. Very frustrating and I've met a lot of others like that.

I'm doing ok. I think i mentioned i started to improve when they switched brands of IVIG a few months ago. So I want to see where this takes me first. It's taken the flares down significantly to almost zero. I still have pain, however, as I have a lot of nerve damage in my hands and feet, but that is slowly improving. Sometimes it's hard to tell what is flare and what is damage, but when I flare it kind of spreads full body and I get electricity feeling and burning and erythromelalgia, instead of just allodynia like I have when not flaring.

I'm still not at the point where I can take antimicrobials and not flare though, even on the IVIG. I have SIBO and took rifaxamin for 3 weeks. I tolerated it much better than expected, but by the end of the 3rd week I was def flaring.

If in a year on this new brand I'm not where I want to be I'd consider adding something in. My rheum is high on JAK inhibitors but I cant find a lot of evidence (papers or even anecdotal stories) that they will help SFN, but its relatively low risk and you can just stop if its not helping. He also wants me to try Rituxan, which is very hit or miss, but when it works it works well and I would consider it. As you said, it's very hard to predict what immune suppressor will work and is sometimes just trial and error.
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trkane
Regular Member
Joined : Nov 2021
Posts : 151
Posted 10/16/2024 5:29 AM (GMT -5)
Did your doctor give you these drugs and protocols?

I am not criticizing - just wondering if he gave you these and you discovered you herx'd on them.
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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/16/2024 5:53 AM (GMT -5)

dcd2103 said...
As you said, it's very hard to predict what immune suppressor will work and is sometimes just trial and error.


Unfortunately, it is like this. The disadvantage of Rituximab is that B cell depletion lasts for several months, so you'd have to be on IVIG too to be on the safe side.

I've never heard anything about the JAK inhibitors, they are also very expensive but who knows, maybe they work. It's a matter of trying.

Keep us posted with any advance that you have.
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Quin
Veteran Member
Joined : Oct 2018
Posts : 2048
Posted 10/20/2024 10:16 AM (GMT -5)
I didn't try lamotrigine, but I definitely herxed from valproate.

The mechanism of action is unclear, but it's probably something other than sodium or calcium channels.

One thing I noticed with valproate is that it was very slow acting. I noticed very little effect for the first week or so, but the herx became increasingly bad after two or three weeks. It also tended to make bartonella flare up, but not kill the bartonella, so then I would need to take something else to kill the bartonella (usually I took minocycline).

I didn't have any autoimmune problems with valproate though. Nucleotide analogues (and particularly valacyclovir) were much more of a problem for autoimmune stuff. My biggest problem with valproate was it increasing my insulin levels. Initially I had high blood sugar so increased insulin was desirable, but after a while my blood sugar became normal and too much insulin was causing a lot of weight gain.

You are taking 40mg loratadine? I had problems with immunosuppression at just 10 mg, so I didn't want to take more than that.
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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/20/2024 10:56 AM (GMT -5)
I have to say that I barely noticed valproate when I introduced it, but the addition of lamotrigine on top of it made me feel it. It was like they were both acting together the same way. I think that several drugs that are anti-epileptic have the same mechanism of action attacking borrelia, that's what made me think about trying it.

My autoimmunity happens with everything that is antimicrobial. The mechanism is probably molecular mimicry. I am under the impression that whenever something is killed within my body my immune system attacks my small nerves, mistaking them for borrelia. This mechanism seems to be very common, Horowitz mentions it several times in his book. I had it under control with cyclosporine, but after one month I had a flare and had to stop treatment. I also have to say that I was taking a lot of things on top of that (minocycline, fluconazole and ivermectin), so in my next assault I'll have to go more slowly with the heavy hitters for borrelia.

Why was the loratadine immune-suppresing? I don't think it works that way at any dose, it's just an antihistamine, nothing more. I was taking 40mg of loratadine before I had to stop and I felt the herx from it. My brother is taking 40mg of loratadine, too, he feels more the herx than I do and he tells me that it is very good, better than many other strong medication used for borrelia such as dapsone. The only "problem" it has is that it doesn't penetrate well into the brain. Apart from that, it's something that can be added very cheaply to the treatment for borrelia and is very effective. Just be careful with herxing.
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Quin
Veteran Member
Joined : Oct 2018
Posts : 2048
Posted 10/20/2024 8:37 PM (GMT -5)
One thing I noticed when killing borrelia with sodium valproate was a distinctive odor that I didn't get from anything else. Dead borrelia tends to smell bad regardless, but with valproate there was a particularly strong odor of diacetyl and malate. This would be difficult to explain solely as a consequence of disruption of ions or the cell membrane. I suspect valproate is doing something different, probably interfering with glycolysis.

Lamotrigine has an anti-folate effect, and we know that borrelia is susceptible to anti-folates, so I suspect that the mechanism of action may be unrelated to sodium or calcium.

Most of the autoimmune issues that I got were unrelated to molecular mimicry, but due to the location of the pathogen in proximity to something else. If borrelia was in the endothelium, then I would get blood clots and autoantibodies to ADAMTS13. If borrelia was in the dermis, then I would get skin rashes.

I did herx from loratadine, especially in combination with other things. The problem that I had was detoxing and clearing out the dead bacteria. I found that the antihistamine effect prevented my immune system from clearing out the dead bacteria, and then the detoxing would get worse when the loratadine wore off.
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GeraltofRivia
Regular Member
Joined : Dec 2023
Posts : 50
Posted 10/21/2024 7:15 AM (GMT -5)
I haven't noticed anything regarding odour when killing borrelia. My brother doesn't have any issue with that either. I think it depends on the person and how his body works.

Same thing applies with autoimmunity, my issue is most likely molecular mimicry. My brother, however, has skin rashes (same as you) and inflammation in the GI tract (among others). Everyone who has these infections has blood clots due to the hypercoagulation (I'm thinking mainly of bartonella and babesia, though borrelia may have some influence on this, too).

Did you have the same problem when detoxing if you changed loratadine with something different that kills borrelia with the same intensity? It's interesting for me to hear that the antihistamine effect blocks clearing bacteria, but it's true that when you take antihistamines your mast cells don't work as well telling your immune system that there is foreign stuff (dead bacteria) in your body.
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Quin
Veteran Member
Joined : Oct 2018
Posts : 2048
Posted 10/25/2024 12:45 AM (GMT -5)
The hypercoagulation is largely autoimmune and seems to be due to a specific mechanism involving the bacteria getting into the endothelium (or possibly the liver) and causing an inflammatory response. This leads to antibodies to the clot-dissolving enzyme (ADAMTS13) which is produced by the endothelial cells and the hepatic stellate cells. I found that taking a low dose of certain antibiotics was enough to keep the borrelia immobile and prevent this from happening.

However I did also get some clotting due to hypercalcemia. Borrelia biofilm contains a lot of calcium, and breaking this up releases the calcium. This is bad because (among other things) calcium mediates blood clotting via von Willebrand factor.

I would have thought bartonella could cause blood clotting, but it didn't seem to. Bartonella destroyed the red blood cells and my bilirubin would get real high due to the hemolysis, but this didn't seem to affect clotting.

The detoxing was pretty similar regardless of what I used to kill borrelia. Some of the stuff would end up in the bile and cause painful diarrhea. Often I would pee out cloudy urine which I assume was calcium. It also smelled, but the smell of borrelia wasn't entirely consistent. Sometimes it would smell like garlic. I suspect that borrelia absorbs certain chemicals and these get released during the herx. The garlic smell (allicin) was one of the things it seemed to hold onto. There was also a smell which was a bit like soy sauce. I'm not sure if this was a byproduct of its fermentation or something that the bacteria were absorbing and releasing. However I noticed a particularly strong vinegar-like smell when taking valproate, so I suspect that this drug is blocking borrelia metabolism in a specific way.
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