I have often heard the brain "is the last thing to come back." I've been on IV meds for awhile now, but I can't say my brain has really come back much so far. I feel like I should be looking for the first signs of "Spring" or something -- a little sunlight in those dark recesses of brain tissue that have been so messed up for so long from Lyme and co's.
Has anyone not seen real brain improvement until after fully stopping meds? I have heard that is possible (a sort of brain reboot after the fact).
What supps do people take for other brain drain like ammonia detox, quinolinic acid detox, brain inflammation feeling, etc.? Honestly, nothing I've tried for this has ever seemed to do much at all.
How did you know your brain was coming back, if it ever did? Maybe that's a dumb question, but I'm just saying, what little signs of life made you realize your brain was starting to revive itself a little bit after years of Lyme/years of treatment? I'm just wondering if mine has flown the coop for good or what.
Posted by TF (Member # 14183) on :
I never heard that the brain is the last thing to come back.
I have always heard that the first symptom to come is the last symptom to go. The reason for that is that the first place lyme attacked is the most entrenched place in your body.
The last symptom to come is the first symptom to go because that is the place where the lyme is least entrenched.
So, based on that rule, perhaps you will be able to predict when you may get your brain back.
A good lyme doc I know once told a friend that if she had not had any moments of brain clarity in the last year, then the doc couldn't guarantee that the patient's brain would come back with treatment.
This friend had NOT had any moments of brain clarity in well over a year. Still, with good Burrascano-type treatment, her brain came back completely!
This lady had had a professional job (was very educated) but had become so "stupid" in her brain that she had to chang jobs and become a bank teller. She was about to be fired from the bank teller job for forgetting to follow a rule and causing the bank to lose money.
She routinely got lost driving home from work.
So, when she got to the doc I recommended, she had to ask for her to complete paperwork to get her a 3 month leave of absence so that she would not be fired.
In that 3 months of good lyme treatment, she made such progress that she was able to return to her job and not make anymore mistakes.
So, be encouraged! This lady was most likely born with lyme, misdiagnosed her entire life as fibro. She was about 50 years old when I met her and sent her to a lyme doctor. Still, she returned to normal.
I also had a friend who had become so "stupid" from undiagnosed lyme that she was as slow as a 90 year old woman--in her movements, talking, responding to what someone said to her, etc.
It was totally sad to see how this woman had become.
I am so happy to tell you that with a Burrascano-type lyme doctor, she is fully recovered and has a good mind again like she did before she suffered with lyme.
She had had "fibro" for years and even was approved for Social Security Disability benefits because she was so ill. Turns out that it had been lyme all those years. (at least 20 years)
At her first lyme doc appointment (I drove her and sat in on it), the lyme doc told her to videotape herself once per month so she could see the progress she was making with treatment. He said to her, "You really don't know how sick you are."
That was so true! His advice to her went right over her head. She didn't understand it at the time or even remember what he was saying. As time went by, I began to see my old friend "re-emerge" from under the brain fog. It was wonderful.
So, the 2 notable brain cases that I am familiar with both turned out wonderfully!
I guess you will first notice temporary moments of clarity. Whatever brain symptoms you have, you will notice that you have a "good day" here and there. Then, after so long, you get more and more good days. Then, you are off and running.
Posted by lymeandceliac (Member # 48492) on :
Yes - I am wondering too. The brain fog is what makes every day a living hell, torture from beginning to end without a single second of peace or happiness. Six years of total misery - I certainly hope it's not true the brain won't come back because this is the worst possible fate a human can suffer.
Posted by Robin123 (Member # 9197) on :
My high prolactin brain marker fell steadily back to a normal low level. I did clindamycin antibiotics, and drink mangosteen juice, take turmeric capsules, and have drunk noni juice and taken grapeseed extract capsules. These supplements are very anti-inflammatory.
I fixed my brain fog by going on Armour thyroid. I tested hypothyroid, and that's the form of thyroid I can take.
Posted by bluelyme (Member # 47170) on :
bee venom 1 year and its starting to lift ,,even multitasked today
Posted by BartHeart (Member # 49759) on :
Wow, naturally I forgot I even posted this until just now! Nice brain!
Blue, I've looked into bee venom therapy for some time, but feel I can't start yet b/c of counterindicated item (heparin) I have to be on for now. But I'm curious to hear how often you're doing stings and how you taught yourself.
And TF, it really helps to hear about "hopeless" cases who turned around, so thank you so much for sharing that. By Burrascano-style, are you really talking ILADS docs or something more specific? I know the Burrascano guidelines but there seem to be a lot of variations that still stay within ILADS by and large.
(breaking up the post for easier reading for many here)
[ 02-02-2017, 02:31 AM: Message edited by: Robin123 ]
Posted by TF (Member # 14183) on :
I am talking about the principles Burrascano put in his Guidelines document.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
The required exercise is one continuous hour of weightlifting every other day. A full body workout each time. (This is to boost the immune system and eventually return it to normal so that you will not relapse when treatment ends.)
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do.
Posted by BartHeart (Member # 49759) on :
Thanks TF, I do respect Burrascano's guidelines and think of them as the gold standard, though it has been harder to find docs who are all the way on board.
The only weird thing for me is that, while I was alcohol-intolerant for years so never drank it anyway, I started *craving* red wine after getting bart -- I think for the resveratrols but also b/c it helps with stimulation-sensitivity (via GABA receptors in brain).
So I'm not entirely off of alcohol and I know he's firm about that. (and taking other versions of resveratrol doesn't have same benefit for me). Low/no sugar isn't a problem though, or no smoking.
I do have babesia duncani too though.
It seems like Dr. H. actually follows most of this too in his book (and probably the new book coming out soon) -- that is, testing and treating endocrine issues, dietary considerations, deal with mold and metals, etc., etc.
I have also had a hard time getting high enough doses of some things, b/c docs have reluctance around that piece not understanding the need to kill bugs all the way to prevent resistance.
Do you know if Burracano is okay with alternate forms of cyst-busting (i.e. grapefruit seed extract)? -- I can't do Flagyl (or any in that class) b/c it gave me severe peripheral neuropathy, a rare side effect.
So I only have alt. options for that. I'm doing EDTA and some other things to dissolve biofilms (nattokinase too).
And yes, I've had most of my testing through Igenex (my babs duncani and Lyme, whereas bart was through Fry).
Does Burrascano treat all coinfections *simultaneously*? I know he treats all, but is that all-on coverage at the same time? Or pulsing but in the same time frame?
(breaking up the post for easier reading for many here)
[ 02-09-2017, 07:09 PM: Message edited by: Robin123 ]
Posted by TF (Member # 14183) on :
Dr. H is a Burrascano-type doctor. He has even gone beyond the Burrascano protocol and improved it in many ways. A few other doctors have also done this.
You are correct that it is difficult to find Burrascano-type doctors. There are not that many of them. It takes courage to treat patients the Burrascano way.
If you can't take the antibiotics that are cyst busters, then you will have to use whatever alternate methods exist. Perhaps once you get the germ load down, this will change and you will find that you can take tinidazole, for example.
Lyme doctors have to work around the allergies and sensitivities (including intolerable side effects to meds) of all of their patients.
When I was treating, I could not take the typical Burrascano treatment for babs. So, my Burrascano-type doctor knew alternate treatment that did the trick for me.
Burrascano always said to use "good reference labs" for diagnosing these diseases. He would name Igenex as one. There are a few other good reference labs, so you don't have to be tested just by Igenex.
Burrascano does not say that you should or should not treat all coinfections simultaneously. I was not treated simultaneously. I was first treated for lyme, then bart, and then babs. My doc thought he would have to go back and re-treat me for lyme at the end, but that proved unnecessary in my case.
Thanks to the weightlifting boosting my immune system, my body was able to take care of any lyme that was left without retreatment.
Top notch lyme docs like Dr. H and others are able to prescribe complex treatment protocols that hit lyme, babs, and bart simultaneously.
Other lyme docs know enough to treat two infections simultaneously. This knowledge saves the patient time toward getting well. So, if your doc is sophisticated enough to do this and your body can handle it, that is great.
I do not use the term "pulsing" in regard to the Burrascano protocol except in the case of IV medication which he says can be given 4 days in a row each week. See page 16 of the Guidelines.
If you take a med Mon, Wed, and Friday of each week, that is not pulsing. At high enough doses, some meds can be take every other day and still maintain a high enough blood level in the body.
There is at least one well-known lyme doctor that pulses treatment. I do not see that in the Burrascano protocol. For example, if you are told to take a med for a week and then see if you can go 3 to 7 days without the med waiting until you get sick again. That is pulsing. You are continually starting and then stopping your medication.
If a person cannot completely clear these infections, a Burrascano doctor may eventually put such a patient on one week of antibiotics per month. This is known as "maintenance therapy" and can be done as long as the patient needs such treatment.
Those who I have known who were put on such treatment by Burrascano-type doctors eventually were able to stop even this treatment. I believe it occurs when the immune system is fully able to handle whatever germs remain in the body. Until that time, one week per month of meds is enough assistance to the immune system to keep the person healthy.
Many underestimate the importance of the weightlifting in the Burrascano protocol. Boosting your immune system to get it back to normal is ESSENTIAL for recovery. My lyme doc told me at my first appointment that I would NEVER get well if I didn't do this exercise.
My first and main symptom of lyme was extreme muscle weakness. I could only stand for 1 minute. I could only hold the phone to my head for 30 seconds. I could not hold my mouth open to have my teeth cleaned. Still, I began the weightlifting and persevered until I was ultimately doing one continuous hour of weightlifting as required.
I made great strides due to the weightlifting. I credit it and a good doctor for my total recovery from lyme disease.
I became symptom free in 8 months with my Burrascano type doctor. My doc had me stop treatment totally after 13 months. (I had to keep taking meds all winter long because he won't allow any patient to stop treatment if winter is approaching or if you become symptom free in winter.)
I saw two other doctors before my Burrascano type doctor. It was a waste of time. I wasted a little over 2 years taking their antibiotics. The doc is the key to getting rid of this horrendous disease. I cannot emphasize that enough. The doc is the key.
If you have never done so, you may want to read my post "What Makes a Lyme Doctor Top Notch." Here it is:
What I don't get on the weightlifting - and I'm not doing it for this reason - it says no aerobic exercise. For me, my pulse is about 150 after about two minutes of super mild weightlifting - I've always been that way.
So - isn't the idea not to elevate the pulse? If so, then what should I be doing instead? Should I be doing something like one pound weights?
An hour of even mild weightlifting is a lot more than my sore back could take before Lyme. Honestly, I'd be at death's doorstep if I did that right now!
Posted by TF (Member # 14183) on :
The idea is to exercise one muscle group at a time, to drive the medications deeper into the tissues, raise the body temperature, increase oxygen levels, mobilize lymph and enhance circulation.
as it says on page 31: "NOTE: a cardiac stress test may be necessary prior to exercising to ensure safety."
Burrascano never says to take your heart rate while doing the weightlifting, so I never checked mine. I don't think the idea is not to elevate the pulse. I would bet that mine went up big time, especially when I first started and it was so difficult for me.
"The program must evolve into a graded, ultimately strenuous exercise program" (page 31)
Surely this would raise the heart rate of nearly everyone.
I worked up to the one hour over a period of months. So, do what you can--10 minutes, etc.
Posted by Beverly (Member # 1271) on :
It has been a while for me, I did many things to get my brain back and I would say I'm never gonna be like someone without Lyme Disease, but I can work.
I did treatment for co-infections..Babesia long term /years.
Got my mercury fillings out, detox, chelation for heavy metals, have not touched Tuna since 2004.
Changed my diet, no gluten, watch my food allergies, try to heal by gut, eat lots of broths/soup and cut the sugar out I use stevia instead. Use coconut oil, lots of supplements, Vit C etc.
I do cheat sometimes, but I always feel worse if I do. And finally try to stay away from GMOs
Posted by Brussels (Member # 13480) on :
Beverly, why don't you try the violet ray?
It detoxed my nerves as NOTHING else did.
It was very painful in the beginning (I mean, when nerves put out toxins, I was achy, whole body, no exaggeration).
But again, any treatment without binders = more fog, more fatigue.
Even without lyme, many people suffer from lack of sharp mind. Specially with candida, colds, allergies, bad food, electrosmog.
And anyway, heavy metal chelation is for life.
Dr. K. is THE pioneer on that (he started doing that before any physician I heard of), decades ago.
No one treating lyme back then knew about that problem, most never believed heavy metals had any role in lyme.
He himself had lyme, had a poor health since a child, bad kidneys etc.
He is still using chelators for himself!! It's a life long must do, because we pulled so many metals from the earth and dumped them in food, air, water, clothes, cosmetics, cooking pots...
Go to any public space and people are breathing out heavy metals, so we breathe them in (and out too).
Posted by BartHeart (Member # 49759) on :
Beverly it sounds like babesia was a big factor for you? Are you saying you treated *that* for years, or all of them for years, w/ babesia as part of that. I know Michigan (where I went a lot as a kid) has a high incidence of babesia.
I feel like babs is the last lingering worse infection for me, but doc feels it's bart. I really don't know. It's so many things at this point.
I had fillings out yrs ago but didn't really help me, though now I'm thinking I didn't adequately chelate so am doing some EDTA chelation. I'm hoping this will make a diff. also b/c EDTA dissolves biofilms. . .
Brussels do you have a link to the violet ray? And when you say it helped nerves, are you talking about nerve pain, the cranial nerve symptoms, brain symptoms, other?