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Hi everyone,
In an attempt to optimize my mother in laws nutritional supplements intake, I was hoping to share with you what she is taking, and when, and get your feedback on if we are approaching things the correct way…
I want to ask this question given the somewhat confusing and contradicting info online regarding Acetyl-L-Carnitine. I’ve read no end of good reports on how it can improve a wide variety of things, of which would benefit my MIL no end. However, I have also read it can be counter-beneficial for people suffering from hypothyroidism, due to how it interacts with the thyroid hormone. So, clarification is needed on everything to be sure we’re doing things right!Morning (8am):
Vitamin B Complex
Potassium Gluconate
Vitamin D
Vitamin E
Alpha Lipoic Acid 600mg
Magnesium Glycinate 400mg
Turmeric Complex 500mg w/ black pepper
Milk Thistle
NAC 600mg (only started this week)All the above is taken with breakfast, around an hour after her 75mcg Levothyroxine medication. She also takes 5mg Prednisone with her breakfast.
11am: Minoccycline 100mg
12am: Clopidogrel 75mg
Lunch (1.30-2pm):
Alpha Lipoic Acid 600mg
Co Q-10 100mg (just realized this contains 20mg L-Carnitine…)
Vitamin C 500mg
One of her probiotics (she takes a few on rotation)4pm: Gabapentin 300mg
5pm: Minocycline 100mg
6pm: Rifampin 300mg MWF (she is supposed to take this every day twice a day, but it causes her a great deal of discomfort when she takes it, so we have reduced it to this for the time being).
Dinner (7pm):
Alpha Lipoic Acid 600mg (not every day but at least 3 times a week)8pm: Natural Herbal ‘Sleeping’ pill (on days where she has been in a lot of pain, she takes Zopiclon 7.5mg to really knock her off, but this is definitely not every day).
8.45pm:
LDN 4.5mgThat covers everything in her day. My questions are the following:
1) are we giving her too many in the morning? The placement of the supplements in general, do they seek appropriate? We try to give all supps with a meal to avoid any stomach problems, but maybe some are better on an empty stomach? Would it be better to divide more evenly between breakfast and lunch?
2) do any of the supps interact with the medications? We’re fairly sure they don’t, but as described above I’ve just read about the interaction between L-Carnitine and thyroid. I’ve also read that Rifampin can metabolism corticosteroids, which is why we separate the rifampin and prednisone. These are examples, but does anyone else see any potential conflicts of interest?
3) specifically about the Acetyl L-Carnitine, what is the deal with it? Some places say it’s actually beneficial for people with Hypothyroidosm, some say no, some say good but take with caution. Would it be a case of taking the ALC as far away from the Levothyroxine as possible? It would be great if she could take it, as it appears to be something that could be of great benefit to her. Blood circulation to brain, energy, nerve ending repair, general circulation… all things she needs help with!
4) IP6 & Inositol – I read somewhere that this can be beneficial for nerve damage, neuropathy, etc. However, I also read that it can impact the bloods ability to clot (although can’t find this referenced anywhere right now). She is already taking the anti-platelet meds Clopidogrel, so we wouldn’t want to introduce anything that might interfere with that. Any more info on whether this might be a good supo for her would be great.
Thank you everyone on this forum, and we really hope everyone is staying safe and well.
Steve
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve,
How was it decided for Rifampin to be added to the protocol?
4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHMHi Vincent,
Well, she only got to her an LLMD for the first time ever back in January. When we went to to see him in, she was on a bunch of other meds given to the fact she had just had a stroke, and was experiencing extreme neuropathic pain. The Dr said at the time that there were/are a variety of ABX that can be used in the protocol, of which Mino had to be the main core. I have it written down somewhere, but Azithromycin was on the list, as was Clindamycin. I have a vague recollection that although Azith was his preferred choice, it had some kind of potentially bad interaction with one of the meds she was taking back then (she had also been on Simvastatin, Amitryptiline, and Buprenorphine patches for the pain). And given the lack of availability of Rifampin here in Ecuador, he went with Bactrim. as the partner to the Mino.
We were able to get a 3-month supply of Rifampin bought in the US and sent over to us with a friend, so as of a few weeks ago, she began on the Rifampin, having been on the Bactrim 2x a day every day for the previous 5 months or so. Thats basically the history that led to Rifampin.
I do have a feeling that she may not be using the med that would contradict the Azyth now, although I cant be 100% sure.
I didn’t mention that she is also taking the Beyond Balance MC-BAR2 herbal formula. Only just reintroduced this as she had some time off due to how she was feeling with her overall health. Prior to this, she was on MC-BAR1. She finished that bottle and has moved up to the 2 (only began this earlier this week).
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaVincent just to update – the Azithromycin was contradictory with the following meds, that she is now no longer taking:
1) Simvastatin
2) Quetiapine
3) Buprenorphine
4) Myfortic (Cellcept)
5) Amitryptiline
6) TramadolShe is now off all of these. It might be worth us talking to the Dr to see if we can swap to the Azyth, as the Rifampin definitely makes her feel terrible.
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve ,
Can you remind me what infections were found in your mother in law ? I am in a similar situation in that I am about to make an appointment with a Lyme doc for a newly discovered Bartonella infection. I am wondering what the best course of action will be and how this will fit into my autoimmune treatment. I have the ability to add Azithromycin with my rheumatologist but he is retiring soon and I need a proper protocol and to be monitored . Has she seen improvement with the addition of Rifampin? I feel adding Azithromycin would be beneficial in my case because my symptoms started directly after a pneumonia which was successfully treated with this antibiotic . How much probiotic does she take ? I take 200 billion and will up it to 300 billion once I add the second abx. You may want to add saccharomyces boulardii to prevent C.diff.
4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHMHi Vincent,
The ‘standard’ Lyme infection was found, and after getting a number (not all) co-infections tests done, she was positive on these very specific Bartonella infections:
Bartonella elizabethae
Bartonella quintana
Bartonella spp(genus)If I’m totally honest, she is having a tough time in general at the moment. She is very anaemic, which is leading to perpetual dizziness, we are trying to get to the bottom of it, which is easier said than done. Like I said, the Rifampin has only been a few weeks now, and for sure when she started at 2x a day every day, it knocked the last bit out of her that she had. She has reduced it to 1x a day MWF, and even then the days she takes it is noticeably worse.
It wasn’t the Drs first choice as explained before, so we will be discussing it with her Dr as soon as possible to see if we can switch to something else, probably the Azith. She is taking the S. boulardii yes, the difference in her digestion has been remarkable since starting a good probiotic.
I’m sure some others on the forum will be able to give you more info regarding your question, unfortunately I am not experienced enough to provide you a useful response!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve,
I really should read these posts in order. So, pls take this with a grain of salt as no one here is a doc, but my best guess is that the Rifampin added a few weeks ago is causing either significant side-effects or herxing. I think it’s best if you revert to Dr. M. as she is taking quite a lot…most of the supps are benign, though curcumin does have some blood thinning effects (as does mino), so I’d discuss this with the doc, too, in light of the blood thinning med. Is she getting regular blood clotting times measured? This is critical when on any blood-thinning med.
The other thing I’m wondering about is the herbal sleeping pill taken just prior to nightly LDN. Some people get side-effects from LDN, like vivid dreaming, so it has some effects on Sleep patterns. Altho the two may not interact, one may be having some effect on the other? Just thinking aloud really and may be inconsequential.
The last thought…what time is MIL taking her thyroxine? I’m not seeing it on the above med list (but I am squinting to read on my phone).
I’m going to make a wild fellow-patient guess that this is either severe herxing from the mino/rifampin combo that could be hitting bartonella and/or TB latent forms, but I’m not a medical professional and because MIL is suffering a lot, I’d consult the prescribing doc. She may need an alternative med and to take things a bit slower. She seems to be on a fragile state and has had Lyme & co a long time, so it’s likely going to be a winding marathon, not a sprint.
I’m unfamiliar with the other supps you mentioned in your points 3 and 4, but I’d be cautious about adding anything other than what is prescribed. Clearly the gut has much to do with autoimmunity and so focus on gut healing and detox rather than supplementing for symptomatic relief may be the ideal focus for now?
Just a few thoughts to consider and chat to doc about and thinks it’s all worth a tele-consult.
Hi Maz (again!)
Thanks for your response.
Understood regarding the curcumin. She has taken this for years, so we will consider maybe excluding it from her supps for now until we can talk. In terms of regular blood clotting time tests, no we haven’t – we weren’t aware the should be something that should be happening (although I guess it does seem kind of obvious now you mention it…) Our issue is that all of her docs are based in the main hospital in Quito, and there is no way we can think of going there right now given the situation. All of the recent tests have therefore been drawn from home, and paid for privately (not cheap), so regular tests is not that easy. However, she is due to have her Thyroid levels checked given her recent increase in thyroid med, so we will add this one to the list to get checked in a few weeks time.
As for the natural sleeping pill, these are the ingredients:
St Johns Wort
Valerian Root
Purple PassionflowerIts not a sleeping pill, but more of a relaxant (used for anxiety etc too), but she takes it towards bedtime to help her relax.
She takes the thyroxine first thing when she wakes up (around 7ish). She doesn’t have anything else until she has breakfast at around 8.30.
Completely agree with your comment regarding detox over supplementation. One of the reasons there are this many is because one of the supps that Dr M sent her (ATP 360 by Researched Nutritional) contains pretty much all of what she is taking (Vitamin C, Thiamin, Riboflavin, Choline, Magnesium, CoQ10, R-Lipoic Acid, Acetyl L-Carnitine, to name a few). These have sadly ran out, so we are trying to make up for it by giving them to her separately (the super supps that Dr M sent for her aren’t available over here.)
As for the IP6 & Inositol – she doesn’t take it. It was recommended by a fellow forum-goer some years ago, long before all the discoveries of Lyme, Bartonella, Neuropathy etc (it may well have been Lynne S.D. from these forums…). I was just doing some re-reading on what she has in her cupboard, to see if she had anything that might be of use to her, and the reading led me to see that it can be beneficial for nerve damage. However, you are right – adding more might just muddy up her system rather than improve anything right now.
I didn’t mention that when things are particularly bad, we make her an Alka-Seltzer w/ lemon juice, along with some Glutathione pills (again we are limited in supply so we cant give her as many as the Dr recommended in times of bad herxing). These seem to help a little.
She also has this product that the Dr sent, which she is still to open, but it looks like a detoxing type thing:
https://biocidin.com/products/gi-detox
Might it be worth stopping some of the above supplements, and introducing something like this to assist with detox? Other than the Alka Seltzer and Glutathione tabs, she doesn’t have anything to support the detox process, which we know is super important to help her through any herxing.
Also worth mentioning that she has only just reached the LDN dosage of 4.5mg, which is where the Dr said he sees most patients respond well. Again we know that everyone is different and people can be extremely sensitive to even a 0.1mg increase or decrease, so this is still a work in progress…
Thank you again for all the support and responses.
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve,
As you know, I’m no expert. I just ran a little search on St. John’s Wort…I recalled trying years ago when I had hyper-functioning thyroid nodules and it wound up causing me serious dizziness, similar to vertigo. Needless to say, I stopped it. The search I ran brought up some very interesting info I think you might like to check over, including some medication interactions, such as blood thinners. I don’t know if this will help at all in your searching but some herbals have powerful effects and this one also acts as a P450 liver cytochrome inhibitor (Rifampin is a P450 cytochrome inhibitor) so any medications she’s taking with this same effect could perhaps be confounding the issues she’s dealing with?
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