LDN and Bart treatment

Hi all! Long time no post.

I personally am doing great and progressing well with my treatment. Today im posting on behalf of two of my friends who just saw an LLMD for the first time. I wanted to see what some other people thought on their abx protocols and what their outcomes were.
And in part for my own curiosity haha, its been a long time since ive done extensive research on the antibiotics and when I did ABX i only tried a couple for lyme/RMSF only.

Anyway on to the point
Friend one was DX'd with lyme, bab, and bart. and will be doing some further blood work for further eval.

Friend two was DX'd with lyme(worst), RMSF, and bart.
Both people are already on a mess of detox, anti inflammatory, methylation, and natural antibiotic herbals.
Both use some of the Jernigan Neutriceuticals lyme, parasite and detox supp's
Plus both already do the infrared sauna 3-4x a week @140F.

Both of them were prescribed malarone, LDN(friend 2 has been on it for years already), and hydroxychloroquin.
Friend two was diagnosed with POTS and given a script for that also, but wasn't sure of the name yet (she said it was a super tiny pink pill). The doc will be giving them a follow up report at some point this week with more information on their cases and things they can be doing, but not sure what will be in that.

Symptoms-
friend one-
Most likely had lyme back in 1989 until 93', resolved through diet, acupuncture, and naturopathic drs, she was diagnosed with CFS only. Then this summer was bitten twice, first time she got sickly and started herbs and thought she was okay. Second bite kicked her tail feathers. She has nightmares, joint pains, severe fatigue, dizziness, brain fog, and her respond hormone tests (which she has done for years) indicate she has none. Very low (almost 0) T, E2, and PG, historically her hormones were great with some mild supplementation. And were fine earlier this year.

Friend two has been sick since 1993, severe severe pain, leg swelling, horrible horrible night sweating (improved some with paragen from jernigan), brain fog, fatigue, terrible insomnia and waking up at night. As of this year she's started walking with a cain because one of her legs is in so much pain. Her digestion isn't so great, no matter what probiotic etc she's tried.

Both friends follow a strict no dairy, wheat/gluten, and very minimal to 0 processed sugar. They've eaten healthy for years (maybe decades).

Friend 1 has a history of IBS and really would much prefer a 100% natural treatment, for the sake of her gut. Ive pretty much done that for me through my LLDC, but that is rather cost prohibitive and its not the greatest to treat oneself only (been there done that, personally). Today I talked to her about some of the CellCore and Byron White formulas. Truthfully I think she's still a little bit in the denial phase and doesn't understand the weight of her diagnosis, or how big of a journey this could be....

Friend two.
She's used to being sick. She loved the doctor and was very impressed, again likes natural over pharm but she's willing to try it. I think she feels a lot more like " hey what do I have to lose!". The dr told her she will have a long time in treatment to start gaining progress. Im not sure what a long time is classified as, but she wasn't too worried. She was already spending a couple hundred short of $1k a month on supplements, for the last several years. Its just another day in life for her.

Anyway,
thoughts on what I can share with my friends?
Anyone who has taken those three meds and noticed a big improvement? Or added in something with those that was helpful?
I think friend one may be trying the byron white products soon, which I know have to be started at a small dose because herx can be horrible.
Ive had lyme+ for years and have already been through the herbal, treat myself, found a specialist etc. route. But its different when talking to someone else about their journey. Both friends know about my journey pretty well and have known me for years, so theyve seen what ive been through. Its just different to all the sudden become that person...
Ya know?

This is where I came and did 99% of my research over the years, as well as reading Dr. H in NY's book. I figured this is where I should come back to to get some updates on whats current!

Sorry I know that was a lot of information in one post.

Im asking what peoples experiences have been using those meds and if they were strong enough, in the past I was under the impression that plaquinel is not very strong.
Friend one has a history of IBS, has anyone with IBS taken these meds and been alright or was it too much?

Friend two will probably have to kick it up a notch in the future, the dr is probably still feeling around to see how she handles it. She is a poor methylator.

I never used plaquenil, I used Alinia that one was helpful for me.

Never used LDN, my neuro says he'd rather I try 5-HTP before he puts me on something stronger.

The 5-HTP is calming. The friend that's the poor methylator sounds a little like me. I have to be on Hydroxocobalamin B12 as I'm heterozygous for the MTHFR 677 gene and heterozygous for the CBS gene where I only make half of the glutathione I should be processing.

I have IBS and with the ABX I take, I take saccharomyces boulardi at 5 billion units and 60 billion units of another probiotic a day. I am also on biweekly Bicillin shots which are powerful herx inducing and but so far slowly noticing an improvement.

ItisLyme said...
Girlie, Ive wondered about the LDN...II know its pretty gentle and seems to help some, but Im afraid it may not do much. Yes, same lyme doc.
Both friends take 5 HTP I believe, I know for sure friend two does. I think friend 1 said it makes her feel tired and spacey after a while.

Both do Methyl B vitamins, B12 +folate.

Eliz, do the Bicillin shots affect your gut since they're injection? (just going off symptoms, not necessarily testing)

The LDN is something I see as a support - not primarily for treatment.
I was hoping it would help my pain but unfortunately it did not.

No, haven't noticed much stomach upset than my usual from the Bicillin. And no diarrhea, nausea, or vomiting.

But I naturally suffer from constant rumbling, and painful bloating... sometimes...cramps. That maybe my normal though.

FlatERF said...
Hello ItsLyme!

I just wanted to ask, were you herxing when you started the cinchona tea that you were drinking daily? I skipped a day in between doses. I took it again today and it made me feel a bit off ( im guessing herx ). I plan on taking it every other day until the herx is gone and have a feeling it will take care of my remaining air hunger symptoms.

I see you are doing quite well and was wondering if you feel that this CinChona bark had something to do with it. I read it has great antibacterial/antimalarial/antiviral properties. I plan on taking cinchona every other day and on the off days taking Artemisinin tincture ( which btw I took last night and a small dose gave me a bit of air hunger ).

If you don't mind sharing your experience and whether it took care of your babesia, that would be greatly appreciated.

Hey FlatERF i'm sorry I did not see this sooner, I never got an email notification. It did help me significantly and I used it for months. Honestly it has been so long since I used it, I'm not sure if I would say it was one of my major milestone treatments but It did help me a lot and it was one of the more affordable herbal options. I did not herx badly from it, it helped my fatigue for sure. It did not 100% knock out babes, but it did help significantly. I *believe* I also did cryptolepis and graviola also.

For anyone else out there reading --

I've been on LDN for almost a year (only 1.5mg, it is highly individual), and it is the thing that has helped me the most, without a doubt. My dr. wanted me to titrate up to 4.5mg, but when I went up to 3mg I had a huge increase in symptoms. She said if I feel good at 1.5mg to stay there. Lots of people in the LDN Facebook group who have Lyme only take 0.5mg.

I believe you should be actively treating the Lyme with herbs or antibiotics while on it though. My dr. started me on it only 3 months into my treatment, so you don't need to wait to start it.

When I go off it I have a big increase in fatigue and overall body pain, so I know it's still helping.

If someone has not taken a drug then they should not be posting about it, because they are flat out wrong.

Post Edited (orbitingaround) : 8/30/2020 2:01:22 AM (GMT-6)

I know LDN is used in conjunction with lyme treatment because it works against auto-immunity. I have a few friends who are on it or were on it.
The LLMD who I mentioned in the first post works hand in hand with Horowitz and has even given seminars with him.
One of my friends who does have severe auto-immune, LDN helps her a lot and she has been on it for years.

orbitingaround said...
LDN does NOT suppress or down-regulate the immune system, it does the opposite. That is why when people with Lyme or an undiagnosed infection take it we have an increase in symptoms. This whole time it has been boosting my immune system. I very obviously have an active infection and it is helping me.

thanks for your input and your experiences:

I wrote that "there is some concern that it MAY dampen the immune response"

what it actually does is not fully understood - certainly, it seems to reduce auto-immunity (reducing one aspect of the immune system) - and since the mechanisms are not fully understood we are left to interpret as best we can.