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» LymeNet Flash » Questions and Discussion » Medical Questions » Im at a point where i just dont know what to do

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Author Topic: Im at a point where i just dont know what to do
Indica440
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I was diagnosed with lyme in 2008. I started ABX shortly after. I had severe problems from 2004-2005, but than got thyroid meds in may 2005. I was better but still a mess. I was told i was a hardcore case of hashimoto and the hormones had a HUGE impact on me.

After i had the hormones i had more engery to do things but i still felt pretty sick and had issues with my nerves/brain. I still pushed myself and i started to go to university. But i always was so tired and so exhausted. I constantly lost weight. All the time.

In 2008 i tryed treatment for adrenals. I got worse within hours of taking prednisolone. So much worse. Maybe i should have taken it with florinef. No Dr would subscribe it to me. But it was still a really low dose, but it couldnt sleep or eat anymore.

I also had mold in my apartment, which made me worse. It wasnt black mold though but i had tons of symptoms before the mold. Colds would always make my symptoms go away.

In the Winter of 2008 i got iV rocephin, 4grams for 2 months. I didnt know if it helped or not. After that biaxan and doxy for another 4 months. Also Artemisinin.

I felt allergic sometimes, sometimes not. Sometimes i felt better, but most of the time i felt actually 1000 times worse. CD57 dropped from 60 to 30 and it stayed that way.

I only was treated for babesia with artemisnin for coinfections. I never had any clinicl symptoms of babesia.

After 6 months of ABX i developed severe MCS, extreme fatigue and other issues that would never ever stop. I later found out i had severe candida.

But now the allergies and MCS issues would never ever fully go away. Not with any treatment in the world. I got it from 100% to about 20-10% but its still there.

Wonder if this is systemic candida or if is just trashed my liver with the ABX?

Anyway i was on 15 months zhang after that. Did nothing for me. Made me more hypothyroid. I felt worse all the time and i was feeling cold, allergic and itchy. I now have a garlic allergy.

After that i was on a Mix of Buhner and Cowden, for 2 Months, than i switched to Cowden for about 12 Months.

After 6 Months of cowden i added Minocycline 200 the Mix and Amantadine. Sometimes i added Biaxan but it always felt it was killing me / too much.

I never got better on the herbal treatments, wonder if i have lyme. But i always felt worse or sometimes better on the ABX. It doesnt make sense to me.

Now i did like 2 weeks of Artemisinin and Biaxan and i feel so much worse. I woke up today feeling like a truck hit me.

In the first days of Biaxan i felt better, than i was really sleepy and slept almost all day, after that i have this itching all over the body again, the allergies....it could be herxing but i also had this in 2008/2009 without any benefits.

I HATE THIS. THIS CRAP IS BUGGING ME SINCE 8 YEARS. I JUST CANT TAKE IT ANYMORE.

Where is hope?! I feel like i tryed a lot and i wasted around 100.000$s of my parents money. I have no job. I cant workt. I feel like i cant start a life.

Guys in my age should look into their path, to find a job thats fun. But for me nothing is fun at all.

Im now 28 and this **** never helped me in any way. What am i supposed to do? How long can this go on? I know other people on this website are in the same situation. How do you deal with that?

Im a young man. I look healthy and i look to good to be sick. But i lost almost the joy for anything because of 24/7 symptoms, fatigue and so on. Even if i enjoy something with passion, i feel like crap and i have to stop.

I dont have the physical or mental stamina for anything except sleeping. If i ever sleep because of insomnia. Even if i push myself, i just feel worse after trying to work / play.

I sometimes played concerts (i have a rock band) and 90% of the time i felt so toxic it was unreal.

I know i sound like i only complain but its more like a breakdown where i just cant take it anymore.

This is only 2% of my story. I know some of you suffer in the same way.

I never complained and i always thought i would get better. I was always optimistic and i believed in it a 100%. I had an appointment with this new LLMD. I just dont know if i should go. ABX just make me feel like a piece of suffering waste.

..................................................

Breaking this up for easier reading for many here.

[ 12-14-2012, 02:24 AM: Message edited by: Robin123 ]

Posts: 141 | From cali | Registered: Nov 2012  |  IP: Logged | Report this post to a Moderator
TF
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With this disease, if you are not progressing, you have to try a new doctor--one who knows more and has more tricks up his sleeve.

Tell the new doc this story and see what he can do. It is common that folks feel terrible on antibiotics. A good lyme doc knows what to do for this (detoxifying techniques, starting at low doses and ramping up, treating the inflammatory response of an overactive immune system--cytokenes--etc.), and if all else fails, they can go an herbal route. Perhaps a different type or dose of herbals would work for you.

Perhaps you have other problems that need to be addressed first such as parasites or candida. At the recent 2012 lyme conference in Boston, a top lyme doc said that parasites are the number one coinfection in lyme patients.

Anyway, you can't keep doing the same old thing, and you can't do nothing. If you do nothing, whatever is wrong with you will stay wrong or even get worse. So, doing nothing is not a good option.

It pays to do a lot of research about lyme doctors. This can be hard to do and also time-consuming, but it is well worth it to find somebody who can help you.

Try to find somebody who knows the docs in your area and is willing to share info. Get to the very best lyme doctor you can afford. You pay for expertise. Wish you the best. Everything can turn right around with a new doc who tries something new and it works.

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Razzle
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Sounds like methylation (detox pathway) is blocked or not working correctly. This leads to chemical sensitivities, worsening allergies, and lack of progress on the Lyme treatment no matter what method a person tries (herbs, abx, etc.).

Strongly suggest getting tested for methylation gene variants, with a doctor who knows more than just about MTHFR...there are about 30 gene variants that should be tested to find out what's going on with methylation.

And there are also nutritional tests (NutrEval) that can tell what your current antioxidant, vitamin, mineral, fatty acid, and energy cycle status is.

The two sets of tests (methylation genes, nutreval) can give a good integrative physician a lot to work with to help you get past your situation to a better roadmap for treatment.

I hope this helps...take care,

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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sparkle7
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Sorry you are going through this. I had CFS when I was in my 20's & it's rough to be so young & not able to "live" (I'm 51 now). No one understands & it's very isolating.

We don't know what tomorrow will bring so try to hold on. Did you get any testing done? Was it highly positive or just vague?

Some people don't respond well to drugs or "substances" like herbs. There have been some people who did well with treatments like Rife or the Bionic 880 (infrared light).

You may have to work on detox. Are you sensitive to chemicals or do you have heavy metal exposure? Dr. K in WA starts people off with anti-parasite & heavy metal detox from what I have read.

I'm no doctor - these are just some alternative suggestions that you may want to look into. Some people just don't respond well to the drugs.

It rough - just try to go easy on yourself & take it day to day... minute by minute if you have to. This time of year can be hard on people, especially if you don't feel well.

Do you have any viruses like EBV, etc.? How about electromagnetic exposure? It's invisible but I think it may be doing a number on people who are not well.

I hope you feel better if that's any consolation...

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glm1111
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After many years of suffering and taking abx, I was not getting better. I started antiparasitic herbs and salt/c and discovered I had the Filarial Worm co-infection. Saved my life and put me on the road to recovery.

Parasites/worms are an often overlooked co-infection of Lyme and often overlooked even by the best LLMDs. In the latest ILADS conference Dr. H. said that this is now being recongnized as the number one co-infection.

I would suggest finding an LLMD who understands this, knows how to treat it and follows the Dr. K. protocol or go see Dr. K. himself. Also there was a recent post by canefan who is doing considerably better taking Gaia herbs adrenal support.

You might want to look into that. Sorry you are feeling so bad, Try and hang in because there is a way out.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Robin123
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Good suggestions here.

You mention many issues -

I think it's best to work with a really good LLMD. One of the things they can do with you is testing, like for adrenals/cortisol levels, thyroid,

and candida - yes, you can test for it with blood and stool tests,

testing your detox ability - I did the detoxigenomic liver test through Genova Diagnostic Lab in NC and that showed my liver's genetic ability to detox.

Razzle is questioning your ability to do methylation detox. The detoxigenomic liver test or Amy Yasko's test would also show that.

So, first of all, my opinion is that you need adequate testing done with a competent LLMD, to show you and your doctor more accurately what you're dealing with.

Second, are you still in a moldy environment? If so, that's not good and can seriously impact your ability to recover, and needs to be addressed. So, let us know -

Third, responding to some of this - I sweat every 4 or 5 days in a far infrared sauna tent and I am recovering from severe MCS.

I first sweated for 6 months once a week on a biomat to recover from smells sensitivity. I did it too much in the beginning and broke out with what seemed like an allergic reaction.

It sounds to me like your body may be overwhelmed and trying to detox it all out through your skin and thus your allergic-like reactions.

Now I am sweating every 5 days in a far infrared sauna tent, working on recovering from chemical touch sensitivity - it's slow, gradual change, and it's going in the right direction.

My LLMD said keep going, when I wasn't seeing any progress. He said there would come a time when the threshold of toxins left in my body would drop and suddenly I'd see change.

He was right. I sweated for 6 months on the biomat, and suddenly one day I could handle smells.

I write all this for you to read what the process can be like for recovering from severe MCS.

I also take anti-inflammatory nutritionals, like drink mangosteen juice, noni juice, take grapeseed extract capsules, etc, all in the food anti-inflam category. You could experiment a little to see whether you have any positive responses to any of these kinds of supplements.

Now for attitude - believe me, we're up against a bear of a disease, or diseases. It's a challenge. I think it changes us as people to have to deal with all of this. I think we become more compassionate, more helpful, more able to hear others.

No, we don't get to have a normal life. I had one and lost it. I didn't even know I was sick. All I knew was my health was going downhill.

And some of us don't even get to look bad! I know some of us do, but it sounds like you and I don't - gosh darn it, we should have the right to look as bad as what's going on inside of us!

That's a conundrum for us and those around us. Sooooo, that's one of my big management jobs, constantly, and I know that, I'm prepared for it, as it can happen at any time that someone completely mistakes my "well" appearance and thinks I'm well.

I've thought about this alot, and the best analogy I can come up with is to say that when we're in a hospital, we can't see someone's brain tumor, or someone's heart condition, or, fill in the blank,

but no lay public person goes into a hospital and tells people there, oh you're fine, you don't need to be here.

Same with us - you can't judge us by our outsides. You need to understand our illness(es).

And when someone hears me on that, then I start to explain Lyme and co's to them so they can start to get some understanding. I find that some understanding goes a long way,

and that's what I work for, since they could get this too, if they're not careful, and then I move into prevention talk. So there are ways to manage the public.

No, we're not the same as the public. But, having said that, I'm all for us being able to do anything at all with our interests, since they are our interests, and to do so in modified form.

Then if we can get somewhere with our various treatments, then we'll have more access to more of what we want to do.

I know, a long response, but this stuff isn't easy - we have a different path to travel.

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Carol in PA
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You've had some posts from some of our most experienced members.
I hope you'll hang around and read, as there is more information than you can shake a stick at.

Gigi and others have discussed an allergy method from Europe that might be able to help.
Google GcMAF, an amazing breakthrough that is showing promise for cancer and chronic infections.


Zhang's protocol is supposed to be very good, but I have read of a couple people here who became allergic to garlic.
Zhang's alternative to garlic is Coptis, which contains berberine.

Marnie and Keebler have posted information about Berberine...wiki has a good page about it.
Have you figured out how to do a search here?
Click on the "search" link near the top.


If your system cannot handle antibiotics, there are a number of other things you can investigate.
Some of your symptoms may be due to nutritional deficits.
Some herbs have antibiotic or antiviral properties.


Please, keep reading here, and ask questions.

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seibertneurolyme
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Haven't read all of the responses, but it sounds like you do need a new doc. But maybe not an LLMD.

I would suggest an ACAM doc for a thorough nutritional evaluation. Test your amino acid levels etc. Something like the Metametrix ION test which used to cost around $1000.

http://www.acam.org

Regardless of your infection status chronic illness can cause many nutritional imbalances and candida definitely can make those impacts worse.

You need to find out if you have a leaky gut as that can cause or worsen allergies.

Artemesia is ordinarily used in lyme circles to treat babesia but it is basically an herbal antibiotic and it could be working on either babesia or some other infection. I think you need to do a more thorough evaluation to see if you do in fact have babesia or what other infection that herb could be impacting.

Have not read the new book -- think it is called Beyond Lyme. But I would definitely be checking into some of the things mentioned in that book such as hormonal issues including thyroid and adrenal.

Don't give up. I think most people can at least improve their quality of life if they keep an open mind to trying new things and keep looking for the root cause of their symptoms.

Just wish there were more docs who do investigative diagnostic work in an affordable way.

Bea Seibert

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RC1
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You mentioned mold, don't underestimate how sick it can make you.

I had mold in my house and we remediated last winter. It was a major part of my illness. I have relapsed Lyme but I'm not disabled like before.

Mold make things sooo much worse.

Also I have been doing Cholestrymine and that has helped a ton too.

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Catgirl
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I hear you. I have MCS too. It's gotten a lot better (acupuncture), but I think for me, heavy metals and parasites are my issue. You've tried a lot of things, but TF's right, you need someone really experienced with a fresh perspective. I feel like we have to attack lyme and company from different angles too. Change it up, try something new.

For me, exercise (light weights only--Burrascano specific), parasite treatment (ongoing) and vitamin C and acupuncture have helped me the most. Exercise detoxes and improves mood. It is incredibly beneficial for lyme patients. Burrascano said that if you don't exercise, you'll never get well. We are all dead tired, but specific exercise is necessary for this disease.

I believe parasites and/or heavy metals are the cornerstone of lyme. I feel like they are responsible for the massive candida issues I've had. I started attacking parasites/heavy metals this summer and noticed my yeast got better.

Yeast is very sneaky. It hides from tests just as well as BB does. IMO, you cannot get better without attacking these three (parasites, heavy metals, yeast).

Also, you may want to consider protomyxzoa. Try eating a low fat diet and see if you feel better. I think it helps reduce biofilm for everyone, not just people with protomyxzoa (just speculating here). Hang in there.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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faithful777
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TF is right. You need an LLMD who knows what the next step is when the current protocol is not working.

Herxing is normal when you change meds but you shouldn't feel this bad all the time. Regardless of what else is going on, you need an LLMD who can switch gears if you are not responding to treatment.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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Tammy N.
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I can completely relate to everything you say. Everything. I was in that boat for a long time.

I haven't read everyone's responses, so pardon me if I'm repeating. But just some quick thoughts on what I think you should look into:

#1 Parasites - I cannot say enough about the necessity to treat for parasites. Finally after 20 years I am getting better. And don't forget when treating parasites you must stay on top of toxic metals and fungi/canadida (they are bosom buddies with parasites).

#2 Detoxing and methylation issues. You cannot get well if you are not detoxing. I bet it's the mold that threw you over the edge (unknowingly, it was for me.)

There are many things that need to be addressed in order to get well. In a nutshell, I would read everything you can on Dr. K and his healing approaches. A shortcut to this info is to just read as many posts of GiGi's as you can. She is a smart lady and a long-time patient of Dr. K's, and she has shared generously in her many posts.

To read more on parasites, check out posts from glm1111. Also, check out my past posts on the topic. I believe treating parasites can be your game-changer.

Hang in there. Sending good wishes your way.

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TerryK
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You've gotten some good advice. In reading your post the need for a comprehensive detox program sticks out like a sore thumb. Methylation, intracellular detox and the HLA (toxin binding) issues is where I would start first given your comments about feeling toxic. Some of us don't make the antibodies necessary to detox mold and/or borrelia toxins. If we don't bind them with a mechanical binder like cholestyramine they will continue to make us sick. This could explain why you get so sick when killing borrelia or with exposure to mold.

There are LLMD's who are very good with detox. Look for one and start with detox. Intracellular detox, methylation and binding. If you kill more without taking care of this first you will feel worse in all liklihood.

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Indica440
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Yes the advice here is great, yet overwhelming for me!

Maybe i didnt hit lyme hard enough? I mean i was on mono antibiotics treatments most of the time.
I developed these allergic issues shortly after. I think thats because of candida and leaky gut. I took high doses of VSL3 and other probiotics but it didnt help enough, but it helped.

One thing i forgot is, when i retstart antibiotics, i usually start to have higher body temperature and also slightly sweating. I never knew if this is because of the infections or because of the ABX. It drops a bit after the first days. In this period i feel better. After that i will start to feel lousy and super toxic (i assume this is because of toxins)

I will check out MTHFR, but im from europe/germany and i dont think the DRs are informed about it well. I know there is some kind of "minimum MTHFR" treatment.

My adrenals play a big role in my case. I used some adrenal supplements and some gave me a lot more energy.

I have one ROUND of the Dr.K parasite treatment. Im also on mimosa and neem and my personal Dr.K cocktail from my Dr.K practitioner, but its almost the same as the real Dr.K one.

One thing id like to add is, i get INSANE reactions to GSE. I will get psychotic, burning nerves and pain, extreme mood swings, feeling of dying from this stuff. Its so intense it beats every pharma med hands down. I cant stay on it. Its too much for me. I still dont know if this is extreme herxing or an allergic reaction?!

For metal detox i took 1,5 years of zeolithe and i take microsilicia since 4 months. Is that good? I also ate tons of cilantro last year. I never felt super bad from it.

Energetic testing says: Lyme (i have PLENTY of strains, more than almost anyone in her office), viruses (EBV, Herpes) and Parasites also show up !

Im a bit scared to take biltricide. The problem with the LLMDs in germany is: they dont really know or care about thyroid, adrenal and other stuff. I have to do that myself. My thyroid is almost dead and my adrenals are shot. You bet the other hormones are out of balance too..

For thyroid is have synthethic T4 and T3 and ERFA thyroid.

I think i have leaky gut because i have all sorts of on/off allergic reactions to food!!! What can i do for leaky gut? And the abx will make leaky gut worse [Frown]

My new LLMD is very good. He has gotten many people well. He also says i have chlamydia p. and that its part of my picture too. He wants me do ABX combinations.

I think i should do Parasite cleanse round.1 first? Its hard to find a doc that knows all the stuff you mention here. Like i said most doctors here, if they are literate... only know the lyme/coinfections.

What do you mean with "i should not feel so bad all the time?" Isnt that the case with most of you?!

Thank you a ton! I will try cholestyramine soon. I already take zeolithe / charcoal.

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marypart
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For what it's worth, my son and I both did several rounds of biltricide and never had any problems with it.

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

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TF
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Take a look at the notes about Mold Toxicity that I posted after listening to the Nov. 2012 Lyme Conference. They are here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/121800

You will see a lot of your problems/symptoms discussed.

See the instructions for taking the cholestyramine and expect to herx when you take it.

Your lyme treatment doesn't sound great. Using one antibiotic at a time doesn't get rid of lyme. I will send you the name of a good doc in Germany who follows the Burrascano protocol. This doc will provide more aggressive treatment.

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canadianmama
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You are using a Dr.K llmd, have they suggested photon treatment?

It may be worth looking into. The change in my son after starting treatment has been dramatic.

While we are still working out some things, notably parasites and detoxing, the photons keep him feeling well enough and positive enough to push through the other treatments.

Search lymenet for "photons" "bionic 880" or "PV1"

All the best to you.

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Tammy N.
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Since you are with a Dr. K practitioner, I think you are in good hands. Between having an open-minded doc and the support from all of the knowledgeable folks here on Lymenet, you will find the right answers.

btw - I had no issues with Biltricide either. No problems.

Best to you.

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sparkle7
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re: I know there is some kind of "minimum MTHFR" treatment.

Yes, it's called the Simplified Methylation Protocol.

http://www.mecfsforums.com/index.php?topic=13227.0

excerpt-

Here is the revised Simplified Methylation Protocol as of today, August 25, 2010:

(AS ALWAYS, I RECOMMEND THAT ANYONE ON THIS TYPE OF TREATMENT BE UNDER THE CARE OF A LICENSED PHYSICIAN. Even though this protocol consists only of nutritional supplements, a small number of people have reported experiencing serious adverse effects while on it. If this occurs, the protocol should be discontinued.)

1. Neurological Health Formula (Holistic Health, Inc.) (Multivitamin-multimineral, plus
additional nutrients): Swallow one-quarter tablet and increase to 2 tablets daily. Go
up to 6 tablets daily if tolerated.
2. Activated B12 Guard (Perque) (2,000-microgram lozenge of hydroxocobalamin):
Take one lozenge per day, sublingually.
3. FolaPro (Metagenics) (800-microgram tablet of 5L-methyltetrahydrofolate): Swallow
one-quarter tablet daily, which amounts to 200 micrograms per day.
4. Folinic acid (800 micrograms of 5-formyltetrahydrofolate): Swallow one-quarter
tablet or one-quarter of the contents of a capsule daily, which amounts to 200
micrograms per day.
5. Lecithin (1200-milligram softgel): Swallow one softgel per day, which amounts to
1200 milligrams of lecithin. If finances permit, instead of lecithin, drink a 2-ounce
bottle of Smart Youthful Energy (NT-Factor)(Pure liposomal glycophospholipids)
daily.

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