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» LymeNet Flash » Questions and Discussion » Medical Questions » BRAIN FOG! Anyone have it LONG and it went away completely?!? (Page 2)

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Author Topic: BRAIN FOG! Anyone have it LONG and it went away completely?!?
AuntyLynn
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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.

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Dekrator48
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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.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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ktkdommer
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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.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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jpsmom
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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]
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Robin123
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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!

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thehause
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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.
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Spirocheta
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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.

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thehause
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they fluctuate based on how long i've gone without sleep, though that variation is small.

i'm just cloudy headed all the time.

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triathletelymie
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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

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

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TX Lyme Mom
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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....

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AuntyLynn
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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

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triathletelymie
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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...

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

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TX Lyme Mom
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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.

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nefferdun
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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.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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triathletelymie
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nef - LDM or LDN?

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

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thehause
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Tri - You need to get a SPECT done!
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whitmore
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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.

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TX Lyme Mom
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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.

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thehause
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What is methylation therapy, TX?
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glm1111
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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

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

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TX Lyme Mom
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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 ]

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thehause
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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.
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TX Lyme Mom
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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.

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Catgirl
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I second what Gael said (parasites).

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

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thehause
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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!

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VV
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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.

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TX Lyme Mom
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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.

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Bitten in Bergen
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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.

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CD57
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Bergen, interesting because Diflucan and Tindamax are both -azoles, in same family. Did you have the HLA mold gene?
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