posted
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! 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
-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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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.
Posts: 873 | From WA | Registered: Dec 2005
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posted
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)
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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.
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Thanks, keep me updated. I have Vinpocetine - maybe some effect.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
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.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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?
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
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.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
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.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Raw vegan - Thanks!
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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 Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymeboy
Unregistered
posted
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.
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chiquita incognita
Unregistered
posted
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.
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.
posted
what does BWF's stand for? I don't get the acronym.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by thehause: what does BWF's stand for? I don't get the acronym.
Byron White Formulas
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
These BWF's have worked for people? I'm feeling rather uneducated.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
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.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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!
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
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.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I'll probably give them a try since I'm desperate to get rid of the neuro issues.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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.
Posts: 6 | From Germany | Registered: Feb 2011
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posted
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,
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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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...
Posts: 6 | From Germany | Registered: Feb 2011
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posted
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"?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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. Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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.
Posts: 833 | From Somewhere | Registered: Nov 2010
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posted
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.
posted
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.
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
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?
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
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...
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
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?
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
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.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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posted
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. Posts: 372 | From west of the mississitty | Registered: Jul 2009
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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.
posted
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
Posts: 183 | From ... | Registered: Oct 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
migs--you did that combo every other day?
Posts: 3528 | From US | Registered: Apr 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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.
Posts: 1954 | From Illinois | Registered: Aug 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Get a SPECT done to see how bad your encephalopathy is... Likely causing your neuro issues. They're pricey though...
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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 -
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
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
-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
What if it's not? Then maybe you have another issue... maybe you are hunting the wrong game. Your call.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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?
-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I'm in the same boat... Lots of ABX is all i know, healing, etc.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
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
Posts: 183 | From ... | Registered: Oct 2011
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-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
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.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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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
-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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-------------------- ? 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 Posts: 718 | From Pennsylvania | Registered: Jun 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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'
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Cass A
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Member # 11134
posted
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
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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...
Posts: 2386 | From New England | Registered: Aug 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
What are these hormones and how did you know you needed them?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
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.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
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?
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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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! 
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