posted
Hello everybody. Was hoping to hear from anyone who can advise me on what works best on the brain symptoms, especially concerning the mental insanity that can occur from Lyme or any of the coinfections. Non of my blood tests have ever showed positive. My symptoms are affecting me mentally with progressive insanity. It is really frightening. There is no way to tell which infection is doing it. But I need to get on something that targets this. Can anyone advise? What has worked for this symptom specifically? And who has had experience with this? Herbals are my preferred approach, but will do anything at this point! I am really slipping into darkness with this disease! Help!
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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My LLND has me taking all these in quite high dosages. The B vitamins are especially important for your mental health, but they are all important.
I'm supplementing them all higher than recommended on the bottles, and it's making a difference. The B vitamins and Magnesium seem to be giving me the most obvious benefits - benefits I notice in how I feel physically and emotionally.
Epsom salt baths and magnesium oil (applied topically) are great ways to add even more magnesium via the skin directly to the cells. Also a great way to detox.
Posts: 161 | From vancouver island | Registered: Feb 2012
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nonna05
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posted
Hi ! Great advice tickle.
Allsmiles ,you didn't mention a dr. or treatment..
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Thanks Tickle and Nonna. Good advice on the vitamins and minerals. I do take all these things but the Omega 3, so I ought to look into that.
I am recieving treatment currently from an LLMD, and adding my own natural supplements to this, including Samento, Artemisinin Reishi, CoQ10 and other things, But the insanity feeling is still there, so I am now adding Malerone at the advice of my LLMD.
He feels that the depression and insanity feeling stuff is due to Babesia, which seems to be much better taking the Artemisinin, but not healed totally. So this is the reason for the Malerone. I just wonder if it is Bartonella.
So hard to know what is actually affecting my head the worse, because my test results are always negative.
Again, thanks for the feedback!
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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lpkayak
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posted
for me the mental stuff was bart and went away with rifampin
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dr. S is a Lyme-literate psychiatrist in PA who has had firsthand experience with Lyme. Click on "E-mail me" in the upper right-hand corner of her webpage and ask for help.
Posts: 8982 | From Illinois | Registered: May 2006
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Keebler
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posted
- The link just posted for you (The Human Side of Lyme) sheds light on the the fact that the emotional, psychological, even psychiatric symptoms are physiological in origin due to the toxins and damage of lyme & co.
Even the liver or kidneys, when overwhelmed, can cause many different psychiatric symptoms. This is not of "insanity" but of actual physical changes in various parts of your body -
- &/or "short circuits and missed connecting" of neurons in the brain from being so overwhelmed by toxins and the sheer exhaustion of this complex illness.
I am concerned that - by the use of "insanity" - you may be doing yourself a harsh disservice that can have long-lasting consequences in the way you think of yourself and the way others see you now and will for time to come -
- especially if you use that term around others who are not lyme literate. You could loose your freedom and rights if others buy into the notice that "insanity" is the diagnosis.
It's a very dangerous word to even utter and it does not convey the truth of this matter. Neuropsychiatric symptoms are not the same insanity.
A neuro-excito-toxic state is not the same as insanity (though, it can sure feel that way because of the way we've been conditioned as a society).
It sure helps to understand that the toxicity of lyme and the way that changes the body -- and nutrient deficiencies -- drive many of the the rough symptoms -
- and with good treatment - this can be a thing of the past. Really. I hope you will have excellent LL care, all the way around - for every professional you consult. Every one of them.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- What is your liver support? Adrenal support?
Both systems are just clobbered with "lyme complex" and can cause severe emotional distress.
A gluten-free diet can also help. Sure did for me. I get very depressed with even a trace of gluten. -
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Marnie
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posted
Long...bear with me...
As many as 20% of the population has inherited a defective copy of the gene that makes this MTHFR, a condition that makes it harder for folate to get into the brain.
These patients have an increased risk of depression, anxiety, bipolar disorder
and schizophrenia;
it also predisposes them to be resistant to medical treatment.
(MTHFR gene (=protein) defect is fairly common. It is really problematic if someone has TWO copies of the same protein.)
Mutations in this gene are associated with methylenetetrahydrofolate reductase deficiency. Persons with that defect can't convert folic acid (B9) to its active form to help lower homocysteine...so other nutrients can compensate (B12 and B6).
Note...nitrous oxide (laughing gas for anesthesia) can be very bad for that gene type!
It depletes B12 and one study showed that every single patient who participated in a study of
Nitrous Oxide Side Effects had higher levels of homocysteine for the entire one month that the study lasted after ONE dose of the nitrous oxide drug.
The official name of this gene is �methylenetetrahydrofolate reductase (NAD(P)H).� - NADPH dependent.
Re: lyme and NADH, not NADPH...see my post about NADH and MRHFR posts.
This study provides evidence for shared genetic vulnerability for SZ, BPD and UDD mediated by MTHFR 677TT genotype, which is in line with epigenetic involvement in the pathophysiology of these psychiatric disorders.
(schizophrenia (SZ), bipolar disorder (BPD), and unipolar depressive disorder (UDD)
Brain Behav Immun. 2011 Nov;25(8):1530-43. Epub 2010 Dec 24.
Cholesterol and MTHFR defect Hcy = homocysteine (toxic):
The effect of the MTHFR C677T polymorphism on lipid metabolism observed in our study merits further investigation in an appropriately designed study to determine whether it was attributable to chance.
If apart from its effect on tHcy ...it causes increased cholesterol and triglycerides and decreased HDL-cholesterol,
it may be important in understanding the puzzling discrepancies in previous conclusions on the effect of the MTHFR C677T polymorphism on cardiovascular risk factors.
My own son's LOW cholesterol (even if he has that genetic defect) maybe because HE relies on B12 to lower homocysteine levels.
tHcy = total homocysteine (need some, not too much!). Folic acid, B12 and B6 lower homocysteine.
In my son's case, I think B12, for him, is coming to the rescue...but in a jam...we have to give him sublingual B6 - active form = PLP/P5P.
Homocysteine is toxic...repeating.
Cholesterol is protective to arteries and only becomes harmful when acted upon by homocysteine.
Homocysteine encourages low density lipoprotein, LDL, the bad form of cholesterol, to clump together, forming homocysteine-cholesterol hybrid molecules which initiate atherosclerosis (hardening of the arteries).
The MTHFR gene defect (which my own son may have!) is pretty common. The problem comes in when someone inherits TWO copies of what is called C677T.
You can get tested for MTHFR. ... heterozygous (1 copy of C677T) and homozygous (2 copies of C677T) MTHFR mutations.
The biggest differences in recommendations between these two types of mutations are:
1. folic acid needs to be avoided more seriously by homozygous (2 copies) individuals (think: "homo" = 2 of the same)
2. the amount of *methylfolate* required for homozygous (2 copies) mutations is greater
TREATMENT = Rx = Deplin or over the counter = FolaPro by Metagenics. This is the useful form of folic acid i.e., L-methylfolate.
3. the blood thinning requirement is greater for homozygous (2 copies) individuals
Not being able to process folic acid to its useful form impacts another enzyme which is called BH4.
BH4 is an enzyme that is used to make serotonin, dopamine, thyroid hormones, melanin and to
detox ammonia.
It is recharged by *folate*/= folic acid ... and/or niacin ... and/or vitamin C.
Note...in bipolar there is an excess of vanadium and a deficiency of vitamin C. Vanadium looks to try to be helping as it can sub for insulin to carry glucose into the cells. It also is very much like our own phosphate...as in ATP..."contaminated ATP".
***With certain combinations of the MTHFR gene, some people have a limited supply of BH4.***
Those people can probably be identified as those who have tendencies towards depression, low energy, all-or-nothing focus, hypothyroid (even subclinical), are pale, and may have elevated blood ammonia.
These people will do best on small amounts of very high quality protein, and lots of methyl folate.
Reasons to Suspect
If you have low dopamine AND low serotonin AND low thyroid function (even subclinical). If you have high blood ammonia. If you have MTHFR polymorphisms.
***
J Mol Neurosci. 2005;27(1):23-7. "Association of MTHFR gene polymorphism C677T with susceptibility to late-onset Alzheimer's disease."
There is a link (pubmed) between MTHFR gene types and the ApoE gene type (ApoE3 is good, ApoE4 is bad and that is the one linked to developing AD).
For bipolar... this is important!
If those with bipolar take niacin (vitamin B3) along with 5-MTHF, B12, TMG and B6, will the mania not occur?
Biochemistry shows this possible. Is it clinically? According to those who practice functional and orthomolecular medicine � yes.
So...3 B vitamins + TMG + 5MTHF. I wonder if a sublingual (taken under the tongue) B complex would suffice and in fact, be better?
***If you are missing the intrinsic factor and can't absorb B12...this maybe an alternative route.*** Taken under the tongue bypasses the stomach digestion. If you can't process B6 to PLP/P5P, hence the need for the sublingual form of that.
Glutamate (brain accelerator) is broken down by an enzyme using niacin (B3).
Niacin, or Vitamin B3, may lower LDL cholesterol, total cholesterol levels and fatty triglycerides, possibly through a similar process of inhibiting the oxidation of cholesterol.
Niacin also raises good HDL cholesterol levels. HDL helps flush bad LDL cholesterol out of the system.
B12 is the workhorse that converts homocysteine to methionine. Vitamin B12 deficiency can also cause symptoms of mania.
A loss of the loss of intrinsic factor (secreted by gastric cells) leads to vitamin B12 deficiency too - can't be absorbed without intrinsic factor (hence the need to take B12 sublingual too - stomach can't absorb it). The loss of intrinsic factor is genetically determined too!
In the body B12 is converted to the physiological forms, methylcobalamin
and adenosylcobalamin.
Note "methyl"
Ritalin for HYPERACTIVITY. It is Methyl Phenidate.
Vitamin B12 is also known to reduce cholesterol levels (my son...excess B12? -> very low cholesterol and lower homocysteine (instead of relying on folic acid), but cholesterol too low -> his depression.
B6...active form is PLP/P5P (taken sublingual). It has many functions, but can lower homocysteine.
This is what also stops my son's seizures. B6 has been given to stop...get this...hyperemesis (extreme vomiting) during pregnancy. Repeating....it lowers homocysteine levels when folic acid/B12 can't.
TMG = trimethylglyceine.
Trimethylglycine (TMG) is also called glycine betaine, but the name trimethylglycine signifies that it has three methyl groups attached to each molecule of glycine.
TMG was discovered to be beneficial to heart health back in the 1950s.89-93 TMG operates along a pathway similar to that of vitamin B12:
It is a �methyl donor,� providing extra methyl groups to hasten the conversion of homocysteine back to methionine.
When a TMG methyl group is donated to a molecule of homocysteine, it converts to the non-toxic amino acid, methionine.
5MTHF is the most biologically active form of the B-vitamin folic acid (remember some persons with a genetic defect MTHFR can't convert folic acid to its useful form.)
It is also referred to as L-Methylfolate (shortened) = Deplin Rx or FoloPro over the counter (OTC) by Metagenics.
Homocysteine (t-Hcy), folic acid, and thyroid:
We conclude that t-Hcy is elevated in hypothyroidism.
The association of hyperhomocysteinemia and lipid abnormalities occurring in hypothyroidism may represent a dynamic atherogenic state.
Thyroid hormone failed to completely normalize t-Hcy. Potential benefit of treatment with folic acid in combination with thyroid hormone replacement has to be tested given that
hypothyroid patients were found to have lower levels of folate.
Our genes do not determine our destiny! There are work arounds that are available!
Lyme disease effecting someone with a MTFHR defect impacting folic acid -> 5 Methylfolate and or the loss of the ability to convert (B6-> PLP/P5P or absorb vitamins (intrinsic factor - B12) = much more difficult to cure.
Not impossible, but much more complex!
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Keebler
Honored Contributor (25K+ posts)
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posted
- Marnie's reminder about MTHFR is excellent.
Also a possibility for anyone with any kind of neuro-psychiatric symptoms: Porphyria.
Many good links here - Including those for KPU / HPU
and also other links ofor MTHFR (though not a porphryia) as it also involves the liver's inbility to properly detoxify our body.
-------- Editing to add:
in light of Marnie's next post, it's true that not all porphyrias are genetic. That's important to know.
See the link in that set for "SECONDARY PORPHYRIA" (caused by other dysfunctions - or infections / chemical exposures that overwhelm the liver)
Be sure to explore the MTHFR details Marnie posts - and in other threads as well. -
[ 05-09-2012, 01:18 PM: Message edited by: Keebler ]
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Marnie
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posted
Not all porphyrias are genetic, and patients with liver disease who
***develop porphyria as a result of liver dysfunction***
may exhibit other signs of their condition.
Wikipedia.
I think the liver takes a big hit in lyme disease.
Certain MTHFR defect = can�t get methyl from folate (can�t convert folate -> L-Methylfolate) -> need to get methyl group from betaine (which gets its methyl groups from choline).
Choline levels drop = �fatty liver��up goes inflammation.
Fatty liver = (liver enzymes) �increased CYP4A expression with a ***decrease in CYP4F ***genes may promote the progression of steatosis to steatohepatitis.� (Sorry unable to link.)
From fatty liver to inflamed fatty liver.
"�catalytic ability of CYP4Fs to ***inactivate*** pro-inflammatory LTB4" (good thing when CYP4F is UP, not down!)
leukotriene B 4 (LTB4), a potent chemoattractant involved in
prompting inflammation.
CYP4F (Cytochrome P4504F) enzymes metabolize endogenous molecules including leukotrienes, prostaglandins and arachidonic acid�.oops�what if CYP4F is DECREASED?
CYP4F down (driven down by choline deficient fatty liver) = inflammation up.
LOW choline = fatty liver. Impacts renal functioning too!
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MichaelTampa
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posted
Don't forget lithium orotate. I use "Doctor's Best" brand. There is a reason that psych patients are given high doses of this mineral--it can help.
Posts: 1927 | From se usa | Registered: Mar 2010
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Marnie
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posted
Indeed...this trace mineral (Lithium) which we need very little of...is really hard to keep in balance (need often blood check of levels).
But it does help.
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dbpei
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posted
Lithium orotate has made all the difference for me.
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Marnie
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Member # 773
posted
Mentally AND physically?
Prozac (highest levels allowed) seemed to help protect my sis from "neuro" lyme, but didn't impact the ongoing joint destruction and other problems (leg edema, etc.)
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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AuntyLynn
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posted
PLEASE - Start off with B COMPLEX!
You can cause a deficiency for Bs if you take only one or two! The B-Complex vitamins are "synergistic" - which means, they work TOGETHER. Therefore, you can acutally CAUSE a deficiency if you "overload" on just one of the 15-20 B complex vitamins - many of which deficiencies PRESENT as various psychoses!
Could be you simply have "neurological Lyme," for which long-term antibiotics (and esp. IV antibiotics) work best. Your LLMD will know more once you have treated for a while, whether to suspect a coinfection.
Hang tight - and good luck!
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AuntyLynn
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posted
BTW, Prozac CURES NOTHING. It is nothing but a band- aid, that "masks" the problem.
Unless you are thinking of hurting yourself, or others, the wide variety of anti-depressants and antipsychotics that are routinely prescribed to neuro-lyme patients, IMHO, is a damned CRIME.
Nothing like anesthetizing a brain that's already damaged, so that you can IGNORE the REAL problem, and the patient "thinks" that something is being done about it!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Thanks a million to everyone here for all the responses. Lots to absorb.
Keebler, I know what you mean, and for lack of any better way to term this, I call it "insanity" because that is what it 'feels' like.
In fact, it feels so dark and aweful, it goes even beyond depression and anxiety it seems. I also have a seizure disorder that developed after becoming infected.
Makes me wonder how many people out there in mental institutions are really suffering from acute Lyme or coinfections of the brain.
But I know exactly what you mean about trying to avoid labeling these symptoms as "Insanity", because as I have already experienced for myself, doctors love to jump on this as an excuse to blame Lyme symptoms on mental illness that they think can be easily fixed by taking psychotropic drugs.
And Auntylynn, I totally agree that all this does is put a bandaide over the situation and "masks" things. In fact when I took antidepressants years ago, they seemed to just shift the symptoms to something else I found even less tolerable. I refuse to go on these kinds of drugs again.
I was disapointed though that even my LLMD wanted me to first start taking an antidepressant to get the mental symptoms under control, and then take the ABX and stuff to attack the infections. I refused! I want to SEE what ABX helps my mental symptoms!
If I take a drug that masks that, how will I know if the ABX are working, and on what?! He was so insistent about it though, that I had to lie to him and tell him that I would let my therapist address that issue and prescribe me something. ( Which I never did. )Fortunately, he has not brought this up again. I just hope he doesn't.
Anyway, these dark mental symptoms seem to be due to Babesia, as I get relief from Artemisinin. But also from Bartonella I think, which seems to be behind the head pressure and ringing. And it seems two different treatments are needed.
Ipkayak, thanks a million for the thumbs up on Rifampin, because I have a feeling that is the next thing for me to try for the head symptoms. Have heard lots of good on this. I just have to convince my LLMD next time I see him. He wouldnt precribe it for me when I tried to call in and have this done over the phone while I was away. Prescribed me Zithromax instead, which I have not taken.
Thanks again all for the great information!
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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Marnie
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posted
B6 is strongly linked to learning disabilities...and this also comes from personal experience (my son...ADHD, Seizures, significant learning disabilities and Aspergers). Sublingual B6, active form...PLP/P5P stops his seizures).
We are discussing folic acid (as it relates to a fairly common MTHFR defect) and B12 on another link. Read those also.
Yes...all the B's work together, but we have to be able to convert them to their useful form.
Folic acid is B9 - active form is 5 L-methylfolate (MTHFR defect problem with conversion). Niacin, B3 is where NADH comes from)
and B12 which must be able to be absorbed in the stomach where HCL works with "intrinsic factor" to help absorb B12.
Those who have gastritis...seem to be making excess HCL...might lack the ability to absorb B12...or maybe it is a way to try to absorb more B12?
There is a genetic link to persons who have that intrinsic factor defect too.
Then there are persons who might not be able to effectively process B6 to its active form...PLP/P5P.
So taking a B vitamin complex, IF one has a genetic problem converting any one of them, is useless. Besides, I've read our strong (very) stomach acids destroy the B complex pills, but not the "Bs" in FOODS we eat.
Taking too much isn't good either. Apparently my son does not have a problem with B12 and giving him "extra" sub B12 = "tripping"...for a little while. However, he DOES benefit from sublingual B6 (PLP/P5P). We store some B6...some. He has yet to try FoloPro (which I ordered).
Also look seriously at the NADH (from niacin, B3) post. It is important to know.
Dr. Oz links the MTHFR defect to:
(schizophrenia (SZ), bipolar disorder (BPD), and unipolar depressive disorder (UDD).
The effect of the MTHFR C677T polymorphism on lipid metabolism observed in our study merits further investigation in an appropriately designed study to determine whether it was attributable to chance.
If apart from its effect on tHcy ...
it causes increased cholesterol and triglycerides and decreased HDL-cholesterol,
it may be important in understanding the puzzling discrepancies in previous conclusions on the effect of the MTHFR C677T polymorphism on cardiovascular risk factors.
Cholesterol is not bad and is very much needed...HDL is our good kind, LDL is the "lousy" kind.
LDL + high levels of homocysteine (toxic) is bad.
We lower homocysteine via folic acid, B12 and B6.
Really LOW levels of cholesterol can cause depression (once again...personal experience). B12 looks to lower cholesterol...significantly.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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posted
vitamins shmitamins! You need levoquin. Insanity/paranoia is a symptom of bartonella. I had it BAD last summer, really felt like I was losing my mind. The levoquin killed that **** thank god! I have my mind back. NO paranoia.no crazies!
Posts: 21 | From Charlottesville, VA | Registered: May 2012
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posted
Thanks again all. Lots to assimilate. I am agreeing more and more that it is Bart that still needs to be addressed.
Marnie, I have noticed that when I take B6 at normal dosage, that after I while I feel worse in the head. So you are right, there IS something very delicate about the B Balance. I take B12 sublingually, and on my last blood test, it looked like I had a fairly high level of it in my system.
But I now take a low dose B complex ( food ) vitamin. There are brands out there now that claim to be made from food sources. These are much better I should add for avoiding stomach distress from the taking of B vitamins ( the main reason I could not take them for a long time. )
I remember that an old friend of mine swore that taking B vitamins is what keeps the mosquitos and bugs off of her in the summer. But she takes a full dosed B Complex ( I guess without the stomach distress, because she never complained about that happening. )Does anyone have this experience of B Complex preventing mosquito bites? Sounds like something we could all use!
Jessie Joy, thanks for the affirmation about Bart being at the source of insanity/paranoia. I think "paranoia" is a perfect way to describe it. And you are right that it really does feel like you are losing your mind. Gives me hope that maybe when I get the Bart under control, things will finally improve. I also have a constant pressure and ringing that seems to accompany this, but have never been sure if t his is a separate infection causing this.
And Tutu, I have been wondering if the Artemisinin is wearing off in its usefulness. Have been taking it since last September. Have a Zithromax prescription filled but have not taken it. Dont want to put anymore prescription drugs in my system. Would love to get off them and on to an herbal protocol like I used to be on only!
Looking into the Nutramedix Cowden protocol, but dont know if it is powerful enough to address the head and paranoia stuff.
You all have alot of experience and knowledge here. Thanks!
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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