This is topic BRAIN FOG! Anyone have it LONG and it went away completely?!? in forum Medical Questions at LymeNet Flash.


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Posted by triathletelymie (Member # 26456) on :
 
Well, here I am yet again, Triathletelymie, posting another topic...

Anyway...

'Would love to hear of some folks that have had brain involvement for a long time (a year plus!) and have had it go away completely! I am really wrestling with the possible permanency of all of this and frustrated and depressed! [Frown] I have had SEVERE brain involvement for 18 months now...constant drugged/drunk feeling, brain shocks/zaps when trying to fall asleep at night, cognitive impairements ranging from inability to concentrate, NO executive function...ability to organize, multitask, etc., and other symptoms that I am sure that I am forgetting. It has debillitated me and has broken my spirit and will...something that I would NEVER have thought that ANYTHING could do to me!

Has anyone had this with this degree of severity and if it all went away, how long did it take and what worked?

Thanks to all!

~Tri
 
Posted by Shahbah (Member # 28735) on :
 
Cranio sacral therapy has helped my brain fog.
 
Posted by Shahbah (Member # 28735) on :
 
ALso, how is your detox?
 
Posted by hopeful4 (Member # 8486) on :
 
Hi Tri,

Problems with brain function are so difficult to live through. You sound crushed by the severety of your symptoms. And yet I would like to offer some hope to you.

I can't claim to be fully well now, but I am much better. Crushing fatigue and cognitive problems were my worst symptoms. It took 5 yrs. to get properly diagnosed and begin treatment, and by then a toll had been taken on me. I've been in treatment for almost 6 yrs. now, and have improved a lot.

As I look at the medications you are on, I know that these also can have an effect on how your brain functions. Toxins from die-off are also circulating in your brain.

Other factors may be in play also, such as systemic candida, detoxification, thyroid function, hormonal imbalances, other infections, and so on. Each of these must be addressed.

Different things have helped over time: lowering the bacterial infection, keeping the candida down, cleaning up the diet, gluten free, sugar free. Trying different doctors who know different things: like getting diagnosed with autoimmune thyroid disease (Hashimoto's). Detoxifying. Brain function support such as ginko biloba, phosphatydl serine. Liver support such as milk thistle extract.

Other things that help: gentle yoga, qigong, walking, letting go and relaxing, reiki, massage, acupuncture.

Wishing you the best.

It's a long road. It's not a sprint, it's a marathon.
 
Posted by thehause (Member # 21237) on :
 
Thanks for this note, hopeful 3. These are the issues i'm battling still. My story is similar to yours - and unfortunately a bit worse. I'm not sure if I'll get better.

I'm going to post a list of supplements my doc recommended for me below.

-------------
1) Vitamin B12
a) Numerous options: methylcobalamin, hydroxocobalamin, cyanocobalamin. Sublingual or injectable administration may be superior to oral (potential for unpredictable absorption when taken orally). The dose can vary widely and range from 1000 micrograms (1 mg) up to several thousand micrograms. The frequency can vary from daily to monthly (the less frequent dosing is usually with injections). Some experts prefer the methyl or hydroxyl form. The injectable forms can be given subcutaneous or intramuscular and require a prescription.
b) Cobalamin acts as a methyl donor. It is very important for the proper function of the methylation cycle, the methionine synthase enzyme and to allow for adequate methylation reactions.

2) Folate
a) The best options are either methylfolate or folinic acid (as opposed to regular folic acid which is found in most multiple vitamins). There are several methylfolate supplements (Metafolin, Folapro, Deplin, Cerefolin, among others) of which the doses can vary from 800 micrograms (0.8 mg) to 15 mg. Folinic acid can be given as 0.8 mg ranging up to 25 mg or higher (the high dose prescription form is leucovorin). Note that all doses of folate greater than 1000 micrograms (1 mg) require a prescription.
b) Folate also acts as a methyl donor (in conjunction with B12) and is very important in the methylation cycle. Genetic defects of folate metabolism, which impair the normal methyl donor reaction, are quite common in the general population. Proper folate supplementation is very important in individuals with these genetic abnormalities.

3) Glisodin (SOD)
a) This is a superoxide dismutase (SOD) enzyme derived from melon which is coupled to gliadin (wheat protein). The gliadin coupling allows the SOD to be readily absorbed when given orally. Otherwise SOD is inactivated in the digestive environment of the stomach. Glisodin may not be tolerated in gluten / gliadin sensitive individuals (however, it is a very small amount compared to the amount of gliadin in an ordinary diet).
b) Glisodin increases the activity of not only SOD but also glutathione peroxidase and catalase (actually �turns on� the genes for the production of these enzymes). These three enzymes represent the most potent antioxidant (free radical inactivation) systems in the body. These enzymes do not need to be recycled and can rapidly inactivate billions of free radicals that are generated.
c) Suggested dose: 500 � 1000 mg per day (1 mg = 1 IU). There are several brands of SOD that contain Glisodin (examples SuperGlisodin, Source Naturals Glisodin).

4) Sulforaphane
a) Sulforaphane is derived from glucoraphanin which is found in high concentrations in broccoli sprouts. It is produced when an enzyme (myrosinase) converts the glucoraphinin to the active form, sulforaphane. Intestinal bacteria produce myrosinase, thus the broccoli derivatives can be converted to the active form in the gut.
b) Sulforaphane is a potent inducer (signaling molecule) of the nrf2 transcription factor which turns on synthesis of a variety or important antioxidant enzymes, including enzymes that lead to the synthesis of GSH. Thus, it naturally �turns on� GSH production. It also increases the activity of Phase II detoxification enzymes. Sulforapahne acts as an anti-inflammatory, antioxidant, anticancer agent and potent detoxifier amongst other properties.
c) It is usually sold as a broccoli sprout product. Examples are Vitalica and Broccoli Sprout Capsules by Handy Pantry (dose is one or two daily for both).

5) Trimethylglycine (TMG)
a) TMG, also called betaine, is derived from sugar beets. The usual dose is 1000 mg twice a day (the dose used in the studies by James et al in autism patients).
b) It is a methyl donor but works independently from the B12 / folate pathway. TMG can activate the methylation pathway and improve methylation status. It is primarily active in the liver.
c) Remember, anything that improves methylation (B12, folate, TMG) can also increase the production of GSH (via the transsulfuration pathway).


6) Cysteine
a) GSH is made up of three amino acids (glutamic acid, glycine and cysteine). The rate limiting amino acid and therefore, the essential amino acid for synthesis and function of GSH is cysteine. GSH has numerous important functions: antioxidant, free radical scavenging, regulates DNA and mitochondrial function, detoxification of numerous toxins such that they can be excreted from the body, etc. It is an essential factor for the function of almost all cells. GSH has antiviral effects for several different viruses including HIV and murine retroviruses. GSH has been called the �master antioxidant.� The major producer of GSH is the liver but it can be synthesized in several organs.
b) Cysteine administration can increase the synthesis of GSH by providing the key precursor (especially in the setting of cysteine / GSH deficiency).
c) There are several ways to administer cysteine. These include N-acetyl-cysteine (NAC), whey protein and actual GSH. NAC is given orally, is well absorbed and is converted to cysteine in the body. The doses vary widely ranging from 150 mg to several thousand milligrams per day (a common dose is 600 mg twice a day). Many brands of whey protein are available. There is evidence that �lightly denatured whey protein� (which has undergone a specific filtration process and has not been overheated) is more biologically active and has markedly improved protein content in a usable form that can raise GSH levels. Some popular brands are ImmunoPro (5 grams per scoop) and Immunocal (10 grams per pouch). These whey protein concentrates also contain lactoferrin which has been shown to have antiviral properties (including HIV). The actual GSH molecule is not well absorbed via oral administration (although there is a lipid coated preparation that considerably improves absorption). It can be given IV as well as several other routes of administration. Either whey protein or NAC have probably been the easiest, least expensive and most popular methods for increasing cysteine intake.

7) Vitamin C
a) Lipo-Spheric Vitamin C (1000 mg per packet). Suggest 1 � 4 packets per day.
b) This new formulation entails vitamin C which is covered with a lipid coating that allows for excellent absorption from the GI tract (98% absorbed). Blood levels and tissue levels are greatly enhanced, thus the results are similar to IV vitamin C but there are less GI side effects than conventional forms of oral vitamin C.
c) Vitamin C has numerous properties that may be effective in this setting: it is an antioxidant, helps recycle GSH, etc. One of the most important properties is the ability to stabilize and recycle BH4 (tetrahydrobiopterin). BH4 is a critical cofactor for the functioning of the nitric oxide synthase enzymes. If BH4 levels are low, the enzyme becomes �uncoupled� and instead of synthesizing nitric oxide it switches over and produces superoxide (a very powerful free radical). The superoxide that is produced (by reacting with nitric oxide) forms peroxynitrite which results in BH4 degradation and inactivation, thus a vicious cycle is initiated. By restoring BH4 levels, ascorbic acid can break the cycle and diminish oxidative stress. Low BH4 may be a major player in oxidative stress and ascorbic acid can restore these levels to normal.


8) Other (miscellaneous)
a) Various other supplements may be helpful. Several are important cofactors for enzymes in the methylation pathway, formation of glutathione or both. These include selenium, zinc, magnesium and vitamin B6.
b) Antioxidants: various supplements that scavenge free radicals, reduce oxidative stress and reduce oxidized glutathione back the reduced form of glutathione. Examples are alpha lipoic acid, vitamin C, vitamin E, and numerous plant based polyphenols.
c) Other substances may directly inhibit retroviruses. One example is curcumin (such as Meriva SR).
d) Omega 3 fatty acids
e) Vitamin D
f) Probiotics: help maintain a healthy GI tract


Basic Supplement Protocol for XMRV-associated methylation abnormalaties , glutathione depletion and oxidative stress

1) Vitamin B12 injections 1cc (1000 micrograms) weekly or sublingual methyl B12: 5000 micrograms per day.
2) Folinic acid 800 micrograms: two � three per day or Metafolin (methylfolate) at same dose. These two can also be combined.
3) Glisodin (SuperGlisodin): 250 mg � 500 mg twice daily
4) Broccoli sprout (Vitalica): one or two capsules daily
5) TMG: 1000 mg twice daily
6) Biologically active whey protein: ImmunoPro one to four scoops per day or Immunocal one to two pouches per day. An alternative to whey protein is NAC 600 mg: two to four per day.
7) Lipo-Spherical Vitamin C: 1 � 4 packets per day


(All of these can be obtained from various Internet sites)

[toilet]
 
Posted by MattH (Member # 30846) on :
 
After reading Healing Lyme, I started using Huperzine A and Vinpocetine to address memory and brain fog, per the book. Good prices at iHerb. Check out the customer comments. I will let you know how I am doing in a week.
 
Posted by thehause (Member # 21237) on :
 
Thanks, keep me updated. I have Vinpocetine - maybe some effect.
 
Posted by GiGi (Member # 259) on :
 
I lived with brainfog for many, many months.

After enough neurotoxins (toxic metals, dental infections, root canals, toxic chemicals) were addressed, fog lifted from one day to the next.
Antibiotics did zero -- it made things worse.

Please read some of my posts. Address major problems by correcting DNA allergies. www.allergie-immun.de (English version) If your body has forgotten how to deal with toxins, it cannot heal.

Take care.
 
Posted by thehause (Member # 21237) on :
 
What did these tests conclude for you? You were given some formula of herbal treatments?

I'm not sure if I see this website as legitimate or maybe more snake-oil sales.
 
Posted by raw vegan runner (Member # 30432) on :
 
Yep. I was just reduced to stupid. Couldn't go anywhere by myself, barely able to get through the day without making lists for myself and having my kids remind me of things...

What helped me was to deal with the Candida from all the abx. I use Yeast Cleanse from Solaray as well as Oregano Oil. Also on a Yeast Diet.

I am also using an iodine supplement to help my thyroid, along with supplemental Sea Salt and 6000mg of vitamin C(broken into 2 doses)

I am using NT FActor as well. I am on a very low dose so not sure how much its helping yet, I am hopeful.

All of these things have made me feel MUCH clearer, and I expect continued improvement...and this is after about a month-ish?
 
Posted by thehause (Member # 21237) on :
 
NT Factor? I'm not familiar. I'd love to have resolution to the mental issues - I'm on a heavy antioxidant program and am taking probiotics as well.
 
Posted by Geneal (Member # 10375) on :
 
I lived with brain fog for well over 1 year...closer to 2.

When my doc started me on the diflucan protocol, it gradually went away.

I wasn't yeasty prior to the protocol, but I swear the diflucan was a huge turning point for me.

I was able to remember and think and organize.

I remain without the fog to this day.

Good news is that the brain didn't seem to suffer any lastin effects.

Hugs,

Geneal
 
Posted by raw vegan runner (Member # 30432) on :
 
Here is a link describing NT Factor... https://www.researchednutritionals.com/store/item.cfm?code=CRN101 I wish I could find the info that turned me on to it in the first place...its somewhere in my files. I will keep looking.
 
Posted by thehause (Member # 21237) on :
 
General, I've been sicker for a lot longer than you. I don't know if I'd get the same results, BUT can you point me towards the diflucan protocol you're mentioning? I've never heard of it, either.
 
Posted by thehause (Member # 21237) on :
 
Raw vegan - Thanks!
 
Posted by Geneal (Member # 10375) on :
 
Sure.

I took diflucan (200mg) once a day for sixty days.

Took two weeks off, then repeated the diflucan again.

I did this for a long, long time. Probably over one year.

The benefits initially were slow to see, but then I realized

That I could remember things, I could find words to speak, I could find words to speak.

My LLMD and I discussed what medicine(s) did I feel had made the biggest difference for me.

That was when I was officially pronounced to be in "remission".

My answer. Doxy in the beginning, but by far, the diflucan.

Hugs,

"General" Geneal [Smile]
 
Posted by lymeboy (Member # 24769) on :
 
my brainfog has been clearing up slowly but surely for 3 months now. Not out of the woods yet, but so much better. I was completely hopless a few months ago and just wished I would die. Treating Bart has helped a lot, but I also contribute it to the diet and constatntly drinking fluids - lemon water and Green tea....

I still have some messed up days, but I have more good than bad ....Ive been treating a year... sick for over 5.
 
Posted by chiquita incognita (Member # 30381) on :
 
Hi Tri
So sorry to read how depressed and broken you feel!

So here is a note of hope.

Yes I have recovered from severe neuro stuff in the past, though working on it again now that I have lyme. And very good progress even there too, with herbs solo in my case, though we are all different and all respond differently.

When I was environmentally ill in my 20s, about 25 years ago, I....couldn't follow numbers in my head while doing math, was losing memory of face/names and it was so embarrassing, especially at my age!....immediate numbness of both arms and feet at exposure to "Chemicals" like reading the newspaper (the ink got me), inhaling carpet off-gasing or car fumes, walking into a clothing store, etc. Couldn' t feel my arms and legs, they were ghosting along. Stepped on a sharp pebble while jogging and didn't feel a darned thing under my feet....tongue tied, speech slurring....all this immediately with chemical exposure, but brain fog and memory/concentration issues were ongoing no matter what.

I recovered absolutely and in full. It took a long time, but I did.

My specialist said that the nerves are the slowest body system to heal. Slower than bones. But it can be done.

I have read in my 1000 page manual Alternative Medicine, A Definitive Guide written by MD's and ND's all collaborating, that injected vitamin B12 has seen to be very helpful with MS patients.

If it can help them, why not with lyme-induced brain shocks?

Because B12 is a nerve anti-inflammatory, in my best understanding.

Have you asked your doctor what s/he thinks about this?

Again the injected form would be different from the oral, it's much stronger when injected.

I wonder if some homeopathics might help, alongside mainstream medication:

Avena sativa is nerve calmer.
Hypericum perforatum is for nerve injuries (Who said lyme doesn't injure the nerves?)
Aconite napellus for nerves especially where there is fear involved.

What cleared up my neuro issues, back then?

Candida diet
Gluten free (enormously!! helpful to me, but I am gluten intolerant and not everybody is).

Oats are very nerve-calming, over time, if eaten daily and you are not gluten intolerant. Avoid highly processed and refined stuff, you need the bran et al for the whole plant to work in synergy with the parts.

Scullcap, passionflower herbs can be taken for long periods of time to tonify/calm nerves.

St Johnswort oil is high in anti-inflammatory hypericins, but will conflict and reduce the effectiveness of lots of medications, ask your doctor about this. The homeopathic hypericum perforatum could help, over time and will not interfere with mainstream medications.

Magnesium, good dosage, ask your doctor. My LLMD says most lyme patients are low in magnesium and this may account (only in part, the infection is key of course) for some of our neuro issues.

According to Earl Mindell in The Vitamin Bible of the 21st Century, lecithin is present in more than 80% of brain material.

Buhner writes about people who don't recover from lyme with abx and certain herbs will help to bring up the natural killer cells which are low, causing the non-responsiveness to the lyme treatment. When you bring those cells back up, the people respond ot treatment. I can't remember if this was with andrographis or knotweed, but you could check out Buhner's book.

My current neuro issues have improved a lot with the Bar 1 product for bartonella by Healthy Directions. No more fingers curling up asleep in the palm of my hand, facial stiffness much, much improved, after 6 months (with some off/on time during that time).

If one thing doesn't work, try the next. Give it time, the nerves are slow to heal as above. But they can and they will.

BEst wishes, CI


The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. DRugs, herbs and nutrients may interact, talk with your doctor. This is for adjunct support and your doctor is the one in charge of your healing.

[ 03-28-2011, 06:09 AM: Message edited by: chiquita incognita ]
 
Posted by chiquita incognita (Member # 30381) on :
 
PS to aid sleep and brain waves:

L theanine
5HTP raises brain serotonin and can help with sleep

Do not mix the above two with SSRI's you can raise too much serotonin if combined.

Do not mix with melatonin unless formulated by a doctor who knows how to balance aminos and melatonin.

The product Tranquil Sleep by Natural Factors is formulated by Michael Murray, ND and includes all of the above in balanced ratios.

Scullcap, passionflower,can be taken ongoing (kava so long as there are no liver or digestive issues or allergies, not for long term use. Kava has been studied and found to aid the uptake of GABA in the brain, much like the drug xanax. It does have liver side effects, if used longterm or if there are sensitivities, so use cautiously. Many people do very well with Kava and it can be very, very nerve calming. I am thinking that nerve calmers may aid the brain zaps??)

Because vinpocetine was mentioned above, let me mention ginkgo. Both herbs dilate the brain capillaries and help to deliver blood, oxygen to the brain. Not sure how wise it is to combine both herbs, it may be okay in certain dosages but I am not the one to advise about that. Unless formulated by a physician or highly skilled herbalist, I would do either one herb or the other, but not both together.

If they dilate the brain capillaries then presumably they should help to deliver abx to the brain? Don't know, ask your doctor about that mechanism. The doc may understand the mechanism even if s/he does not know herbs per se.


The above information has not been evaluated by the FDA and does not diagnose, prevent or cure any disease. This is for adjunct support and for your education only, talk to your doctor.

[ 03-28-2011, 06:10 AM: Message edited by: chiquita incognita ]
 
Posted by stillwater (Member # 30312) on :
 
I've had brain fog pretty consistently for about 2 years. It is just now starting to go away, but I'm not sure what's doing it.

Did the right ABX combo finally work.

Or is it the BWF's, NT-Factor or Phospholine 4:1?

Don't know but my symptoms are falling away one by one, including the BF.

Even my exercise intolerance is fading way, albeit very slowly.
 
Posted by thehause (Member # 21237) on :
 
what does BWF's stand for? I don't get the acronym.
 
Posted by momlyme (Member # 27775) on :
 
quote:
Originally posted by thehause:
what does BWF's stand for? I don't get the acronym.

Byron White Formulas
 
Posted by thehause (Member # 21237) on :
 
These BWF's have worked for people? I'm feeling rather uneducated.
 
Posted by momlyme (Member # 27775) on :
 
Do a search on the forum... see what other people are saying about them.

We haven't tried them so I have no comment, good or bad.
 
Posted by nefferdun (Member # 20157) on :
 
I believe you have to address all the co-infections to get rid of it. Since I started treating babesia my mental function has greatly improved.

The depression, drugged/drunk feeling is exactly what I experienced with babesia. And I never thought I had it because I did not have the classic symptoms until AFTER starting treatment.

Two months ago I could not take a measurement. Now I am designing a new porch for my daughters house. I am not 100%.
But at least I am beginning to feel like I can function. And I am not as depressed either.

I tried all the supplement - took over 30 pills a day. Nothing broke through the fog.
I was taking everything ever recommended by anyone!

Diflucan is not just a yeast killer. It also goes after the cyst form of lyme. You can tell if your yeast is bad because you will have a white coating on your tongue.
Candida can cause similar symptoms as lyme but I think if you have lyme you are coinfected with something else as well so you need to address that first if the yeast is not obviously a problem.
 
Posted by thehause (Member # 21237) on :
 
Momlyme, I did a few searches but nothing stood out as of yet. Maybe I didn't search well. there is quite a bit of info selling it, however.

I may look into diflucan. Not sure if its superior to what I'm presently taking though.

Thanks guys!
 
Posted by momlyme (Member # 27775) on :
 
Do a search on this forum.

Look for "Byron White" - quotes are not needed

In the dropdown menus choose "Medical Questions"

and if you choose "Subject Only" you will get 28 matches.

Choosing "Entire Message" will bring you much broader results.

Hope this helps.
 
Posted by thehause (Member # 21237) on :
 
Thanks Mom!

I'll probably give them a try since I'm desperate to get rid of the neuro issues.
 
Posted by thehause (Member # 21237) on :
 
?
 
Posted by Googleberg (Member # 30669) on :
 
At the climax of my infection I was nearly unable to build understandable sentances. Not in english, but in my mother tongue ^^

After months of IV treatment the brain fogue vanished almost entirely. In the meantime unfortunately my disease has worsen again, but now I know that it's not a permanent damage, but an active infection.
 
Posted by thehause (Member # 21237) on :
 
Googleberg, did you have any of the symptoms such as memory loss, random vomiting, personality changes, or feeling lost in familiar places?

I'd love to have these resolved and feel like that person from before.

Thanks,
 
Posted by GiGi (Member # 259) on :
 
I learned to stay away from NAET or anything that resembles acupuncture type treatment. It really put me into a bad brainfog that lasted a long time. (distributing the toxins - into the CNS - into the brain)

Excessive sports will probably do the same - It's good to get the circulation going, but not if you are still very toxic.
 
Posted by Googleberg (Member # 30669) on :
 
quote:
Originally posted by thehause:
Googleberg, did you have any of the symptoms such as memory loss, random vomiting, personality changes, or feeling lost in familiar places?

Everything except vomitting. I was anxious, aggressive, and virtually unable to conduct a conversion because of the bad concentration. My brain refused obedience in any respect. When the infection reached the climax, I pulled the plug of my telephone...
 
Posted by thehause (Member # 21237) on :
 
Googleberg - thanks. It sounds like your closest to my experience so far and I appreciate the insight.

Anyone know what's up w/ triatthlete posting "up"?
 
Posted by METALLlC BLUE (Member # 6628) on :
 
quote:
Originally posted by triathletelymie:
[QB]It has debillitated me and has broken my spirit and will...something that I would NEVER have thought that ANYTHING could do to me!

Tell me about it. I was a powerhouse before this thing took it's full effects over me.
 
Posted by thehause (Member # 21237) on :
 
I hear you metallic.

I still manage but I don't have the throughput of thought I had before. Mostly, I get by using tricks and reminders. I've been accepted to an ivy league mba program but am afraid to go - I. because I'm afraid that me mental performance isn't what it was and II. Because I need the health insurance and income. This has wiped me out and really, it has stolen my future from me. [Frown]
 
Posted by daniel (Member # 22201) on :
 
Up
 
Posted by thehause (Member # 21237) on :
 
I think my Rocephin treatment helped a "little bit", but I'm still pretty fogged out. I'm lucky I can hold a job (i guess).

I'm back heavy on supplements, hoping I get a breakthrough.

TF has some good advice for people - triathletelymie you may want to speak with him.

- Hause.
 
Posted by terv (Member # 29410) on :
 
One of the reasons I just switched doctors was because of brain fog that didnt seem to change on or off abx. The new doctor put me on subcutaneous b12 along with deplin. Those two helped me so much. I can't believe the difference.
 
Posted by tickbitt (Member # 33753) on :
 
I was infected with all 3 B's around 6/09. Doxy worked - at first - to keep the brain fog at bay.

The problem was that I also had bart, and doxy isn't very effective against bart. The fog was pretty bad until I got on cipro. The fog always comes back if I'm off abx, but usually goes away fairly quickly with cipro or rifampin.

I think you should take another look at co-infections. It's clear you tested positive for lyme, but you didn't say if you'd tested for bart or babs. I tested negative for bart, never tested for babs. Take test results with a shaker of salt.

As Burrascano says, suspect bart if the symptoms are largely neurological in nature and treating for lyme doesn't fix it. Bart and lyme will both hide in biofilms. The Fry bug (FL1593) is a huge producer of biofilms - ask Metallic Blue sometime. Apparently that bug is most effectively treated with invermectin, the active ingredient is pet/livestock deworming meds.

For more on that, check out http://www.empirestatelymediseaseassociation.org/filaria/filariasis.htm
 
Posted by thehause (Member # 21237) on :
 
up for tri.
 
Posted by willbeatthis (Member # 31111) on :
 
My brain fog has been helped a lot by Teasel almost amazingly so. I don't want to say it too loud that I might jenx myself. You might give it a try.
 
Posted by pme (Member # 31621) on :
 
Just wanted to say that your statement about broken spirit hits hard here too. I so understand what you mean. It seems like so many different things work for so many different people. It is difficult to sort these things out.

It's good to know that something's have worked

Does everyone self prescribe the natural remedies or do you start taking them based on md or nd recommendation?
 
Posted by willbeatthis (Member # 31111) on :
 
I started taking teasel about a month ago when I had read that a person cured her daughter with it. Or better said, got her to remission. It has helped me immensely. The protocol given to me by a herbalist was three drops three times a day. I do four drops twice a day. I think listening to your body is the key.

My doc in NY uses herbals with abx. So I have only added the teasel myself and he was fine with it...
 
Posted by pme (Member # 31621) on :
 
Just wanted to say that your statement about broken spirit hits hard here too. I so understand what you mean. It seems like so many different things work for so many different people. It is difficult to sort these things out.

It's good to know that something's have worked

Does everyone self prescribe the natural remedies or do you start taking them based on md or nd recommendation?
 
Posted by migs (Member # 16496) on :
 
It will go away with time and antibiotics. I was very slow and had NO memory for long spells for the better part of 3 years.

After years of getting gradually better, I switched to Ceftin, Rifabutin, and Minocycline every other day. Soon I was pulling out phone numbers, remembering all my appointments, telling my friends about articles I read. I had forgotten what it was like to be smart...My brain was just awesome.

A total rebirth and I felt like I wasn't just "getting better" but was actually 100% for quite some time. I have to take breaks here and there but that combo is magic.

I was worried it was permanent but it's not and you don't need expensive herbs and natural potions. Just keep treating with what my doc called "better drugs" and little breaks to build soe antibodies and you'll be smart again.
 
Posted by thehause (Member # 21237) on :
 
Feel for you Tri. This is awful. I'm not sure I'm getting better but some days I'm starting to feel like I could turn a corner. At least I'm not sick every month on "the cycle".

My CD57 has improved but I'm not sure the encephalopathy has at all. [bonk]
 
Posted by AuntyLynn (Member # 35938) on :
 
Are you taking cod liver oil, fish oil, or coconut oil?

Cognitive symptoms usually mean there is damage to the some of the nerve cells myelin sheath - and feeding your brain with the essential fatty acids gives it the building blocks for repair.

Also, Dr. Terry Wahls made a major comeback from her MS (and many neuro Lyme patients are dxd as having MS) ... by feeding her mitochondria.

Mitochondria are the genes in every cell that produce energy, so that everything speeds up... like the healing process. Instead of taking tons of supplements, which she was doing, she changed her diet.

Here is her video on You Tube.

http://www.youtube.com/watch?v=KLjgBLwH3Wc&list=PL7C92E727A0D25DBD&index=11&feature=plpp_video
 
Posted by gagamooppop (Member # 34314) on :
 
Same here tri and for about the same time..used to be very atheletic and now im in a fog so big i cant even drive...its such a freaky thing to feel like this on a daily basis

No breaks yet either but trying my best to stay positive..deep tissue massage, infrared sauna, chiropractor/acupuncture and some spiritual work helping a little

Hopefully we all get off fake planet one day
 
Posted by CD57 (Member # 11749) on :
 
migs--you did that combo every other day?
 
Posted by CherylSue (Member # 13077) on :
 
Hey, Tri..., yes all that goes away with treatment. I was a zombie with a fried brain. Now I lead a pretty normal life. However, I went through 3 LLMD's. Made the most progress with an aggressive LLMD.
 
Posted by surprise (Member # 34987) on :
 
Have you treated Bartonella?

I am currently herxing from new Bart protocol, and find some brain fog is back.

Somewhere (Dr. B., I believe) it says if primarily neuro, look at Bartonella.
 
Posted by thehause (Member # 21237) on :
 
Get a SPECT done to see how bad your encephalopathy is... Likely causing your neuro issues. They're pricey though...
 
Posted by Robin123 (Member # 9197) on :
 
Starting Armour thyroid recently ended my dissociative brain experience - how nice - I feel more present in the world again, like my former healthy days -

My doctor said without adequate thyroid, the body cannot function well, and with it, metabolism can happen better.

Hypothroidism can be easily bloodtested for -
 
Posted by triathletelymie (Member # 26456) on :
 
Surprise - Yup, I've treated bartonella...pretty much most of the 2.5 years...with fluoroquinolones...alternating with cipro, factive and levaquin.

thehause - no, 'never got a SPECT scan done. But, quite honestly, what's the point? Even if it is encephalopathy, what can be done? I am still on antibiotics and fish oil, coconut oil, etc.

Robin - I was already tested for thyroid issues...all negative.

Thanks.

Anyone else?

~tri
 
Posted by thehause (Member # 21237) on :
 
What if it's not? Then maybe you have another issue... maybe you are hunting the wrong game. Your call.
 
Posted by triathletelymie (Member # 26456) on :
 
I had numerous EEGs and brain MRIs but no SPECT scan. The EEGs and MRIs both showed white matter hyperintensities which my neuro said was due to lyme.

I guess even if it is encephalopathy, which my LLMD thinks that it is, what is to be done for it? Any ideas?
 
Posted by thehause (Member # 21237) on :
 
I'm in the same boat... Lots of ABX is all i know, healing, etc.
 
Posted by GiGi (Member # 259) on :
 
Haven't had time to read all the above.

Unless heavy metals and dental toxins as well as chemical toxins are dealt with, neuro-symptoms can and will come and go without warning.

You can't get rid of these toxins with abx alone.

Best to you.
 
Posted by gagamooppop (Member # 34314) on :
 
Tri...just to add to what gigi said and from personal experience..

Ok..my only symptom for 1.5 years now has been this brain fog..go to sleep with it wake up withit but its so intense i cant drive or really do too much...i used to be a rower and worked full time..sometimes trained twice a day..very active...this hit me like a truck 1.5 years ago

Did major anitbiotocs never sought refuge just progressively felt intensely worst...then tried byron whites they were ok

Everyone is different in what helps them but ill jist tell you the route ive think ive found is helping me now but again no repreieve just yet but my body feels the best its felt in a while..just missing that little connection between mind and body

Deep tissue massages, energy healing work, chiropractor, acupuncture, fir sauna detox baths, essential oils

Gigi posted a great link about brain fog the other day

Its a huge puzzle and we have to find the pieces that fit

I honestly didnt think i needed any emotional work bc havent had any traumas or anything and boy was i wrong

Just another piece to the puzzle

I am noticing with this fog that there is no quick fix and its work 24/7

One thing that did shift me in the right direction i felt was having my amalgam fillings removed..got it done properly and immediately i felt a shift in feeling better...lasted about two weeks then kinda slipped back but in all honesty it was probably my emotional component coming out seeking repair

Im looking at this whole journey as a huge puzzle and letting things be healed and then oter areas are being revealed

If you wouldve met me 2 years ago i would never be speakong about energy healing or emotional stuff but after going through intense antibiotocs and not feeling any better and thanks so mich to this site and the info on it i kept searching til i found what i think are all the proper pieces to this puzzle

Hope some of this info helps and you find some refuge. I wish there was a magic bullet but no such luck..just chippin away and cleaning up the mess thats been made since day 1
 
Posted by triathletelymie (Member # 26456) on :
 
up
 
Posted by thehause (Member # 21237) on :
 
Tri -- tried oxygen therapy?
 
Posted by Jennifer70 (Member # 30280) on :
 
minocycline really helped with mine..its come back a little since i went off it, but it's not as bad. mino crosses the blood brain barrier which makes sense that it helped with alot of my neuro stuff.
 
Posted by glm1111 (Member # 16556) on :
 
tri,

Don't remember if I ever spoke to you about parasites as a co-infection of Lyme. Just wanted to give you some hope.

I had ALL of the neuro symptoms you mentioned above. My LLMD found a bullseye on top of my head after 30 yrs. I was on abx for 4 yrs and still sick.

The only thing that turned the corner for me was going after parasites. I find it hard to believe that the co-infection of Filarial Worms is hardly ever discussed by LLMDs.

After 6 mos of LOTS of antiparasitic herbs and salt/c, I had an exodus of EVERYTHING pictured on www.lymephotos.com along with roundworms, threadworms and a tapeworm.

I really suggest strongly that you consider this as a possibility of why you are still so sick. Also google parasite symptoms.

Gael
 
Posted by triathletelymie (Member # 26456) on :
 
thehause - nope, never tried it.

Gael - yes, you've mentioned it to me previously. Thank you! I plan on bringing it up to my LLMD at my next visit. I have three questions for you though...if you don't mind....

1. If I don't/haven't had any gut issues, could I still have parasites?

2. Can you do anti parasitic treatment concurrently with antibiotics?

3. Is it expensive to do? It's more natural stuff, right, not meds?

Thank you!

~tri
 
Posted by glm1111 (Member # 16556) on :
 
1.Myself and others never had any gut issues to speak of and were loaded with parasites. I was always very thin with a flat tummy and I was shocked to see what came out of me. Always tested negative on parasite testing as well.

2. I have read here that others have done herbal antiparasitics while on abx. Not sure about pharma antiparasitics while on abx.

3. The herbals and salt/c are very inexpensive to do.

Tammy N. here one Lymenet goes to a practioner outside of Philly that follows Dr. K. guidlines and has great success treating parasites.

She didn't think she had any either and has a very bad infection of parasites. Some LLMDs are not on board with treating parasites without a positive test, hope your doc is open.

Good Luck
 
Posted by triathletelymie (Member # 26456) on :
 
Anyone else?
 
Posted by AuntyLynn (Member # 35938) on :
 
triathletelymie =
I see you re on IV doxy ... have you ever tried IV ceftriaxone? Ceftriaxone is a "kick butt" form of pennicillin, and the abx most commonly used for neurological infections. Just wonderin'
 
Posted by Cass A (Member # 11134) on :
 
For me, the best handling so far for brain fog was heavy metal detoxing using chlorella 3-4 times a day with cilantro 30 minutes later once or twice a day.

This was from Dr. K.

It at least gave me constant improvement.

I have done parasite handlings, and am doing another, more long-term one right now.

I still have memory issues, especially short-term memory. But, I do recognize where I live, can drive competently, and actually can study (sometimes) with success.

Best,

Cass A
 
Posted by dbpei (Member # 33574) on :
 
I think that getting some regular exercise and practicing yoga (as able) have helped me along with heavy metal detoxing with chlorella and cilantro that Cass A describes.

I think that my brain fog returns or worsens when I am herxing or when there is too much bacteria die-off in my head...
 
Posted by Dekrator48 (Member # 18239) on :
 
My brain fog disappeared after I started bioidentical hormones.

I started sleeping much better, the awful fatigue went away and so did the brain fog.
 
Posted by thehause (Member # 21237) on :
 
What are these hormones and how did you know you needed them?
 
Posted by lyme in Putnam (Member # 11561) on :
 
I know mine has to do with sleep. Eeg shows irregular delta and when I sleep in that state, the depersonalization, concentration, THICK FOG are intense. Going for sleep study. I have other health issues, but I feel sleep has to do with a lot. Hormones, Lyme, cos...all add.
 
Posted by Dekrator48 (Member # 18239) on :
 
My LLMD tested my hormones and prescribed bioidentical hormones to replace what I lacked.

I use topical Estrogen and testosterone, oral Progesterone...all from a compounding pharmacy, and oral DHEA and Vit D3.
 
Posted by Dove7 (Member # 39546) on :
 
Just curious about some replies and desperately need help.

First, triathletelymie, I go for MRI tomorrow and EEG And EMG on Friday. My neuro doesn't seem to believe in chronic Lyme. How did your neuro look at the white meter on the MRI and not jump to MS?

Brain fog, fatigue, and stumbling due to leg muscle weakness have cut me down like a tree felled by an axe. Bedridden some days, lists allow me to function (sometimes, along with a supportive husband and teen).

Don't think I can safely drive right now. Pain throughout body, tremors, etc. also knock me down.

Am on FMLA for a few more weeks, then....I am fearful of that, but have to just go on what each day holds.

Hearing that some of you have turned into people with lives again and little/less brain fog gives me hope.

Why do so many of us have thyroid issues along with all the other crud?
 
Posted by AuntyLynn (Member # 35938) on :
 
Bioidentical Hormones -

Unlike pharmaceutical preparations, are chemically "identical" to the hormones we make naturally. Pharma hormones have been chemically altered to qualify for a patent, bioidenticals have not; and have been found to be much safer than the pharma HRT.

Most bioidenticals are prescribed in the form of topical creams (estriol, progesterone) that are applied to alternating areas of the skin (thigh, buttocks, forearm, breast) and absorbed transdermally. Although, some are also given as sublingual tabs or drops.

Unlike hormone "pills" they are absorbed into the bloodstream while avoiding direct influence upon other organs.

Doctors run blood tests to find which hormones a patient is most lacking, and can supplement them accordingly. It's a growing field in gynecology.

The idea is to replace hormones that are stepping down, or causing an uncomfortable imbalance as a woman transitions through menopause, so as to avoid extreme symptoms. (Hot flashes, insomnia, irritability, etc.) They also tend to help with the "brain fog" that is typical during this time.

An informative and easy read on the subject is Suzanne Somer's book: "Ageless"

As most know, Ms. Somers underwent breast cancer surgery, therefore the "standard HRT" would have been contraindicated for her.

However, one of the first books to advocate for bioidentical hormones was written by gynecologist John R. Lee, MD. His book is entitled:

"What your doctor may not tell you about menopause."

Many libraries will have a copy of this excellent book.

There is evidence that bioidenticals can actually cut the risk for female cancers, and for heart disease.

But bioidenticals are also being prescribed for men - to help reduce "belly fat" and atherosclerosis, and to increase muscle growth.

I have used some over-the-counter estriol replacement products, with good success. But I would love to be able to have a proper screening so as to get the "tailor made" program. Unfortunately, without health insurance, that's a challenge.
 
Posted by Dekrator48 (Member # 18239) on :
 
If any of your health care providers are interested in learning more about bioidentical hormones, my Dr suggests that they be directed to the A4M (American Academy of Anti-Aging Medicine)website.

They can attend conferences on this subject.
 
Posted by ktkdommer (Member # 29020) on :
 
My understanding is the thyroid is another system in the body that runs uneffectively with chronic disease. The body loses its ability to regulate the thryroid properly.
 
Posted by jpsmom (Member # 23895) on :
 
I saw this post and said this had been me b4 i had all my 13 metal amagalam fillings replaced over two years/ then discovered a fairly serious mold condition in our home & had it remidiated after probabaly a year, we were so occupied with away from home hbot treatments then ruined it all by returning to an unnoticed mold issue, BUT now I am brainfog free but not lyme free by a long shot, BUT brainfog is something that is just hard to really describe the severity it causes. I felt like I was out of this world & peopel looked at me like I must be on something other than typical pharmaceuticals for lyme issues. I pray you can achieve this healing as I forget from time to time how bad that it was. Bless you & keep fighting the good fight [group hug]
 
Posted by Robin123 (Member # 9197) on :
 
My doctor explained that an ill body can go into hibernation, such that the thyroid does not metabolize normally anymore, and that by taking thyroid, in my case Armour thyroid, I'm waking up the body again.

Interestingly enough, I didn't have a sense of time passing - I would watch the clock hands go around and not feel time passing.

But now that I'm on Armour thyroid, I'm aware of time passing. I guess more is happening in me now!
 
Posted by thehause (Member # 21237) on :
 
quote:
Originally posted by Robin123:
My doctor explained that an ill body can go into hibernation, such that the thyroid does not metabolize normally anymore, and that by taking thyroid, in my case Armour thyroid, I'm waking up the body again.

Interestingly enough, I didn't have a sense of time passing - I would watch the clock hands go around and not feel time passing.

But now that I'm on Armour thyroid, I'm aware of time passing. I guess more is happening in me now!

I know this exact feeling -- where you have no sense of time, no awareness of what is going on. I used to look at my arms, and still kinda do at times, like they weren't mine. Just all very weird.
 
Posted by Spirocheta (Member # 37889) on :
 
I'm so sorry you're going through this. I have had potential Lyme for 5 years without cognitive symptoms, then got a new infection in November. The cognitive symptoms came on in the course of one day for me and feel crippling. (I thought I had a stroke). I am still dealing with them a month later. I can't imagine going through it for years.

But there seems to be hope that they will improve somewhat, based on what others are posting. We just have to find the right treatment, I suppose? Going through the same process right now.

Do your cognitive symptoms fluctuate throughout the day at all? Just curious. I'm trying to track and see if there is a pattern.

If we all recover from this, we should become doctors. Seriously. We've had years of field-work training already.
 
Posted by thehause (Member # 21237) on :
 
they fluctuate based on how long i've gone without sleep, though that variation is small.

i'm just cloudy headed all the time.
 
Posted by triathletelymie (Member # 26456) on :
 
Up for more comments/thoughts...

Unfortunately I am "upping" the same post from almost two years ago...as I still have the same concerns/issues...

Ugh...

Thanks in advance!

~tri
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Triathletelymie,
Are you still on IV Rocephin and glutathione, as your signature line indicates? Or is your signature line out of date?

I'm asking because Rocephin should help reverse your brain fog, but you might have to stay on it a very long time before that occurs. Here's an abstract from PubMed about it:
http://www.ncbi.nlm.nih.gov/pubmed/?term=Lyme+AND+cerebral+hypoperfusion

Unfortunately, the "cure" might not last very long though. At least, that was our daughter's experience. She was on IV Rocephin for 8 months and the beneficial effects lasted for about a year afterwards before she relapsed and her brain fog came roaring back in full force once again.

There is another factor which can cause cerebral hypoperfusion though and that is celiac. Here is a link to the results of a PubMed search which documents this effect:
http://www.ncbi.nlm.nih.gov/pubmed/?term=celiac+AND+cerebral+hypoperfusion

Our daughter no longer suffers from brain fog as long as she sticks to a strict gluten free (GF) diet, but if she gets "glutened" by accident -- for example, when eating out -- then brain fog is one of her first symptoms to come roaring back, and it can last for several days (or longer) before it finally clears up and she gets her brain back again.

There are a number of topics here at Lymenet which discuss the connection between celiac and Lyme disease. Here's a link to one of them to help you get started:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/122855


Next, let me give you an example of how Rocephin made such a dramatic difference for our daughter, if only semi-temporarily. She was always good at linguistics -- semi-fluent in both German and French -- but her math skills were absolutely abysmal! You see, she had missed all 4 years of high school on the homebound program and had had to take the GED to graduate because of how ill she was from UNdiagnosed Lyme disease. (This was way back in the old days before home schooling was a legal option.)

When she was doing the last month of her IV Rocephin, we decided to help her review math because she felt healthy enough to try to go back to college. At first, she could work for only about 20 min. before her headache would become intolerable and she would have to disconnect her IV drip and take a break. That's how we knew that we were achieving "directed blood flow" in the brain by exercising that part of her brain that had been "asleep" for so many years so that the antibiotics could penetrate into that area. This is a rather long story, so hang on....

By the end of the first week of math review, she could endure 30-45 min. of the IV before her headache got so bad that she had to disconnect and take a break from math. We continued the math drills for the entire last month that she was doing IV Rocephin. Her drips usually took about 90 min. because she was so sensitive to Rocephin that she had to dilute it into the quart/liter bags of saline and set a very, very slow drip rate. She worked up until she could concentrate on math the entire 90 min. of the IV drip by the end of that month without her getting a headache from the Rocephin.

When we first started her math review, we started with flash cards for simple multiplication and division because as a former elem school teacher, I was aware of how deficient her math skills were. Even I was shocked to realize though that she couldn't even add numbers with sums above ten -- ie, in the teens! So no wonder she hadn't been able to balance her checkbook!! (She was about 35 yrs. old at the time.)

Well, her addition and subraction skills came rather quickly, and she had mastered 2nd and 3rd grade math skills by the end of her first week of IV Rocephin -- which was the last month at the end of a total of 8 months of IV Rocephin, BTW.

We spent two more weeks drilling multiplication and division tables with flash cards until she mastered 4th & 5th grade math skills during the hour and a half each day when she was hooked up to her IV Rocephin drip.

We spent the last week of her Rocephin IVs doing pre-algebra with a TV video, but that was easy for her. As an adult, she could handle the abstract concepts easily which young children have so much difficulty with. Just take those stupid numbers out of it and math concepts came easily for her!

Her father is a physics prof who can do complicated math problems in his head, so he got into the game during the last week of her IV antibiotics. We had a blast drilling math skills with her that last week.

When she enrolled in a college math course a month later, after completing IV Rocephin, she insisted on taking their remedial algebra class during the fall semester even though she had tested out of it. She aced that class! Then she signed up for the regular college algebra class during the spring semester although her instructor had told her that she was ready for calculus. Hang on, 'cause this is where the story gets really dramatic....

She began to relapse with Lyme during the last half of the spring semester and she almost failed her final exam in college algebra(!) -- although she still got a good grade (B, if memory serves me right) in that class because her average test score that semester was pretty high. In other words, her cerebral hypoperfusion had returned in full force.

Following her Lyme relapse, she resorted to an experimental protocol on the internet -- namely, the Marshall Protocol (MP) -- which was very new at the time (back in mid-2004). It took 3 years to complete the MP program, but her Lyme went into remission once again. (I don't honestly remember whether her brain fog and math skills got better again at that time or not because it's been too long already and it's all a big blurr for me.) However, here's the really good part of the story.

Within about 3 months after finishing the MP, she had a bad bout of suspected "food poisoning" after eating tainted fish tacos. Her GI symptoms from that episode never really went away, and a few months later she ended up in the ER with severe dehydration from vomitting and diarrhea -- which is what led to her eventual celiac diagnosis a week later.

As soon as she began a GF (gluten free) diet, all of her brain fog and fatigue and depression -- which were the "triad" of her worst symptoms -- ALL went away within just days or at the most only a few weeks.

Since then, her math skills have been good enough that she has succeeded in doing the bookkeeping for her husband's business without any more problems with bad brain fog -- unless of course she gets "glutened" by accident, and then it can take several days before her brain fog clears up again.

There's one more thing I need to add to this story and that's about the role of glutamate in brain fog, but I'm being interrupted now and need to take a break. I'll come back later for that part of the discussion. Stay tuned....
 
Posted by AuntyLynn (Member # 35938) on :
 
TX Lyme Mom - Fascinating!

Especially so for me, as my own Mom has neurological Lyme disease, which was not definitively diagnosed for almost fifteen years.

Are you aware of the Stricker study on IV Rocephin and neuro lyme? The results showed that neuro patients needed between 25 to 52 weeks of IV ABX to resolve their symptoms.

As I understand it, the current protocol is to "treat until symptoms resolve, then treat for two more months" ( But it would seem that your daughter did that - as you say it took a year for her to relapse?)

For the record ...

The Study:

Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease

Abstract

http://www.ncbi.nlm.nih.gov/pubmed/21941449?dopt=Abstract

Full article

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3177589/?tool=pubmed
 
Posted by triathletelymie (Member # 26456) on :
 
TX Lyme Mom -

Thanks for the story...and looking forward to the ongoing discussion relative to the glutamate...

And, in answer to your question, yes, I am currently on IV rocephin. This is my 2nd picc line...the first one was for about 7 months (9/10 - 3/11) at which point I was with a different LLMD than I am now...and I had about five months of treatment starting with rocephin and ending with IV doxy.

Fast forward to August 2012...different doc now...the heavy hitter in NY...started with IV vanco, but had to go off of it after a month due to poor labs. Then went to IV doxy...but at a higher dose than with the previous doc two years ago...four hour infusions...definitely TIME CONSUMING! Well, after about three months of the doxy, I seemed to be improving slowly so my doc kept the picc line, but took me off of ALL meds to detox my system. Although I am not really a believer in the snake oil/detox stuff, I seemed to improve even more...probably got to 60% or so...over a four week period. Although the brain fog never really waned. Then, at week #5 off of all meds, old symptoms that had been gone and/or greatly reduced, began to slowly creep back in. So...now I am back on IV rocephin...2 gms slow IV push over 5 minutes.

So, that's the story...for now...
 
Posted by TX Lyme Mom (Member # 3162) on :
 
OK, I promised to come back to this topic and discuss glutamate, but to be quite honest, I don't really know very much about glutamate at all except that it's (probably) what's causing the brain fog -- if I understand it right that is. Now here's the kicker...

The effect of Rocephin has more to do with getting rid of glutamate in the brain than for any of its supposed antibiotic effects. Don't ask me to explain that 'cause I can't. I'm just parroting what someone else who is smarter than I am taught me.

Anyway, you can check it out by doing a PubMed search for "ceftrixone AND glutamate". I got 88 hits (as of today's date).

http://www.ncbi.nlm.nih.gov/pubmed/?term=ceftriaxone+AND+glutamate

The most interesting ones, IMO, are the earlier articles -- for example the use of IV Rocephin for treating ALS, published back in 2005. (There's no abstract though, just the citation.) These citations are in reverse chronological order, so you have to skip to the last page of citations to find that one.

One of the ILADS doctors, a past president of ILADS in fact, defeated ALS by using IV Rocephin. I met him at an ILADS conference held in San Francisco several years ago. Our old LLMD (now deceased) is the doctor who treated him so that's how we first learned about it.

That's another reason why I'm so interested in the concept of genetic methylation defects because one (among many) aspects of the methylation program is that it helps to balance glutamate in the body.

I've been posting a lot under the methylation topics recently, so you can do a search of my past posts by clicking on the icon for my profile in the line at the top of this message. That will take you to my profile page where you'll have to click one more time to find my recent posts 'cause I don't feel like repeating everything about methylation over again here since it's getting pretty late in the day for me.

I'm still on the learning curve myself and I don't want to post something inaccurate, so I'd better stop now and let others who are a lot smarter than I am figure out glutamate's role in brain fog and how treating genetic methylation defects can correct a glutamate imbalance. Besides, that probably needs a whole new topic heading of its own if anyone else cares to start a topic about glutamate and brain fog.
 
Posted by nefferdun (Member # 20157) on :
 
Two years ago when you first brought this up, I was coming out of the babesia brain fog which was so bad I couldn't follow a train of thought long enough to remember simple math problems. WHen I did an online IQ test, it said I was below normal.

After treating babesia I tested positive for protomyxzoa and began ivermectin. This made the most dramatic improvement I have had during all of my treatment. I also began taking LDM, methyl cycle supplementation and the low fat whole foods vegan(ish) diet.

I am close to normal. I am older so I have short term memory loss but I had that before I got lyme disease.
 
Posted by triathletelymie (Member # 26456) on :
 
nef - LDM or LDN?
 
Posted by thehause (Member # 21237) on :
 
Tri - You need to get a SPECT done!
 
Posted by whitmore (Member # 28721) on :
 
If I had been treating for as long as you with antibiotics without real success, I would be looking at other treatments, especially since these medicines are not benign and any 'improvements' may not even be related to their antibiotic effect. Doxycycline has anti-inflammatory properties also.

A lot of people are seeing if they have issues with methylation either by genetic testing or functional methylation panels. This testing costs a few hundred dollars, but it sounds as if your current regimen is expensive also.

That would be my advice. I know it's scary, but so is taking antibiotics years on end.
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Ditto to what Whitmore said above about methylation!

I've finally found what I was looking for regarding glutamate in relation infections and to methylation. (See my last post above if you've forgotten where it left off because it's taken me a couple of days to find the rest of the info on glutamate.)

At the link below, scroll down to the very bottom of pg 60 (which = pg. pg 79 in PDF format) to the Sub-heading "Infectious Agents" and continue reading through pg 62 (which = pg. 81 in PDF format).
http://www.holisticheal.com/media/downloads/autism-pathways-to-recovery-book.pdf

Also, scroll further down to pgs. 85-89 (which = pgs. 104-108 in PDF format) at the link above to learn more about the role of glutamate in relation to the importance of methylation.


Next, consider this article from PubMed, "Antibiotics That Protect the Brain":
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC548404/

...and also its other related citations from PubMed:
http://www.ncbi.nlm.nih.gov/pubmed?linkname=pubmed_pubmed&from_uid=15710934

These PubMed articles all demonstrate that certain antibiotics, like Rocephin (aka: ceftriaxone), have other effects besides their anti-infective properties.

Because Lyme relapse is so common after these antibiotics have been discontinued, wouldn't it be smarter to look for another approach such as methylation therapy to achieve the same end goal?

Therefore, why not give genetic testing and methylation therapy a trial since there's a very good chance that it could lead to a lasting cure without worrying about frequent relapses.

The more we learn about genetic methylation polymorphisms, the better one can appreciate the cost-effectiveness and the numerous other health advantage of methylation therapy also.
 
Posted by thehause (Member # 21237) on :
 
What is methylation therapy, TX?
 
Posted by glm1111 (Member # 16556) on :
 
Is anyone on this thread tx for G.I. parasites?? KEY to getting rid of brain fog. Google brain/gut connection. Also look into digestive enzymes. Super Digestaway by Soloray plant enzymes are very helpful for brain fog and mycoplasma. They are also antiparasitic.

Gael
 
Posted by TX Lyme Mom (Member # 3162) on :
 
quote:
Originally posted by thehause:
What is methylation therapy, TX?

You'll find the information about methylation therapy in the FREE e-book by Yasko and also elsewhere on the internet.

Notice that it's NOT a "one-size-fits-all" approach, like so many other therapy protocols are, but it's very highly individualized according to the results of each person's genetic test results.

http://www.holisticheal.com/books-and-dvds/audiovisual -- (Click on FREE download, first item on the list on this webpage.)

http://mthfr.net/mthfr-and-methylation-presentation-pdf-version/2012/06/06/ -- also other topics at this website
http://www.holisticheal.com/media/downloads/john-doe-mpa-sample.pdf

http://www.holisticheal.com/health-tests/nutrigenomic-testing

Dr. Amy Yasko has a forum, too, but I'm pretty sure that you have to be tested at her Nutrigenomics lab in order to participate in it.


PS - Edited by TXLM for brevity at the request of thehause (below)

[ 03-01-2013, 07:49 PM: Message edited by: TX Lyme Mom ]
 
Posted by thehause (Member # 21237) on :
 
I am at work and can't read a book right now. Is it possible to just get a brief sentence on what it is? Thanks for all the additional info.
 
Posted by TX Lyme Mom (Member # 3162) on :
 
thehause,
I did the best I could to edit my too long post above to cut it down to just the bare nuts and bolts.

In a nutshell, the aim of methylation therapy is to improve the patient's ability to detoxify -- which is key to overcoming late-stage, chronic Lyme. This is accomplished by looking at one's individual genetic "defects" (polymorphisms) and by using individually tailored nutritional supplements which bypass these genetic "roadblocks" in the methylation cycle.
 
Posted by Catgirl (Member # 31149) on :
 
I second what Gael said (parasites).
 
Posted by thehause (Member # 21237) on :
 
quote:
Originally posted by TX Lyme Mom:
thehause,
I did the best I could to edit my too long post above to cut it down to just the bare nuts and bolts.

In a nutshell, the aim of methylation therapy is to improve the patient's ability to detoxify -- which is key to overcoming late-stage, chronic Lyme. This is accomplished by looking at one's individual genetic "defects" (polymorphisms) and by using individually tailored nutritional supplements which bypass these genetic "roadblocks" in the methylation cycle.

This is helpful. Maybe I should get tested... I hope that is easy enough to do.

Thanks!
 
Posted by VV (Member # 38828) on :
 
Is there a methylation protocol guide for dummies?

I'm getting my 23andme test results soon and my Lyme brain is having trouble deciphering what I need to learn.
 
Posted by TX Lyme Mom (Member # 3162) on :
 
quote:
Originally posted by VV:
Is there a methylation protocol guide for dummies?

I'm getting my 23andme test results soon and my Lyme brain is having trouble deciphering what I need to learn.

If there is a really simple version of methylation therapy, then I'm not aware of it because it still seems like a pretty complicated subject to me, too. However, there is a really good CFS-Yasko Yahoo forum where you can get help understanding the "simplified methylation protocol" which was originated by a CFS patient, Rich van Konynenburg, PhD.
http://health.groups.yahoo.com/group/CFS_Yasko/

Be sure to look at all the links on the homepage of the CFS-Yasko Yahoo forum, including the link to the video of Rich'es talk given at a CFS/ME medical conference in Sweden in 2011.

Rich is an impressive guy. I met him at a big NIH/CDC-sponsored CFS conference in 2004 where he presented a poster during a much early stage in the development of his ideas. Rich (recently deceased) was a nuclear engineer who had had to take early retirement from engineering because of CFS. It has always amazed me me how he could master such complicated biochemistry with a background in nuclear engineering instead of the life sciences.
 
Posted by Bitten in Bergen (Member # 34067) on :
 
Cognitive issues improved with minocycline and pulsed tindamax.

But the most improvement in brain fog came from Diflucan - it also improved my fatigue so that I could actually get things done again.

Very critical - if you are a multisusceptible individual (see HLA DR BQ testing from Labcorp) you might have difficulty in eliminating the toxins that are being killed by the meds.

If that is the case, a good binder like Bio-challenge Bind is critical.

Also important is biofilm treatment with nattokinase, or lumbrokinase. As mentioned elsewhere in this post, lyme likes to hide in biofilm communities.
 
Posted by CD57 (Member # 11749) on :
 
Bergen, interesting because Diflucan and Tindamax are both -azoles, in same family. Did you have the HLA mold gene?
 


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