Aa
Any suggestions for the brain fog???
I went from a near photographic memory before the tick bite to forgetting even basic things, unable to balance a checkbook even, and constant annoying brain fog. Is there any supplements I can take to help out? I have never had treatment and have had this for well over ten years, so it's a part of my everyday life and I am disabled now. The pain is bad at times, but the dang fog in my brain is what really makes this disease a pain in the neck. I space off constantly!!!
Hi Tony, so sorry with what has happened. In my own personal experience, even though my bite was over 20 years (my children remembered it from when they were toddlers) when it finally decided to rear its ugly head, the brain fog was one of the first symptoms.
I tried to hide the fact to the family but it finally got to the point that I couldn't.
I am also on disability. My fog and pain started to improve as I started treatment 18 months ago. It hasn't gone away yet but it has much improved.
I am sure there are specific supplements for brain fog, I don't know anything besides Ginko Biloba.
Its never too late to try treatment. I just read something else you wrote recently on this site so I understand that you live in a state that won't treat chronic Lyme.
Are you able to drive to a neighboring state? If not I know of a pretty well known doctor who will do phone consults and dispense Chinese herbs to you. PM me, if you would like his name and information. Some of the herbs I have tried along with the abx worked well.
I know how alone this can make you feel, especially without supportive family, I am in the same boat. We are here for you. My online friends really helped me through and keep doing so.
I tried to hide the fact to the family but it finally got to the point that I couldn't.
I am also on disability. My fog and pain started to improve as I started treatment 18 months ago. It hasn't gone away yet but it has much improved.
I am sure there are specific supplements for brain fog, I don't know anything besides Ginko Biloba.
Its never too late to try treatment. I just read something else you wrote recently on this site so I understand that you live in a state that won't treat chronic Lyme.
Are you able to drive to a neighboring state? If not I know of a pretty well known doctor who will do phone consults and dispense Chinese herbs to you. PM me, if you would like his name and information. Some of the herbs I have tried along with the abx worked well.
I know how alone this can make you feel, especially without supportive family, I am in the same boat. We are here for you. My online friends really helped me through and keep doing so.
Sage tea contains a GABA inhibitor known as thujone. GABA is an inhibitory neurotransmitter that many microvermin can program your cells to produce. In particular, toxoplasma can do this, and I theorize that other microbes that we've come to know as stealth pathogens can do so.
You want Salvia officinalis, not the stuff you get at the grocery store. An alcohol extract would contain more thujone than tea as the thujone is alcohol soluble. Van Gogh liked thujone containing stuff.
You want Salvia officinalis, not the stuff you get at the grocery store. An alcohol extract would contain more thujone than tea as the thujone is alcohol soluble. Van Gogh liked thujone containing stuff.
Beside helping with the fog, there are a lot of compounds in it that have antibacterial, anti-viral, and anti-cancer properties.
"Inhibitory neurotransmitters: These types of neurotransmitters have inhibitory effects on the neuron; they decrease the likelihood that the neuron will fire an action potential."
http://psychology.about.com/od/nindex/g/neurotransmitter.htm
A person has to be careful when self-medicating, whether with drugs or herbs.
The excitatory/inhibitory balance is delicate.
"It's All About Balance
"A balanced nervous system is necessary to maintain optimal health. When the critical balance between the excitatory and inhibitory systems is lost, it creates a situation that increases the likelihood of a neurotransmitter-related condition developing."
http://www.heartspring.net/brain_improving_happy_balance.html
It's just not as simple as might be perceived when told to use a herb to do 'this or that'.
And look what happened to Van Gogh? He cut off his ear! Oops. BUT maybe I could paint as good as he did if I sniffed some sage. Might be worth it. Or not.
http://psychology.about.com/od/nindex/g/neurotransmitter.htm
A person has to be careful when self-medicating, whether with drugs or herbs.
The excitatory/inhibitory balance is delicate.
"It's All About Balance
"A balanced nervous system is necessary to maintain optimal health. When the critical balance between the excitatory and inhibitory systems is lost, it creates a situation that increases the likelihood of a neurotransmitter-related condition developing."
http://www.heartspring.net/brain_improving_happy_balance.html
It's just not as simple as might be perceived when told to use a herb to do 'this or that'.
And look what happened to Van Gogh? He cut off his ear! Oops. BUT maybe I could paint as good as he did if I sniffed some sage. Might be worth it. Or not.
Nobody is saying take an herb or do this or that. If someone lives in a state where they don't treat chronic Lyme, I used to live in one, and they are also suffering, one needs to think outside the box and make alternative suggestions giving one hope when before there wasn't any.
"Nobody is saying take an herb or do this or that."
I didn't.
You didn't.
There is something called FYI and information for the google impaired.
NutriBob sounded as if he were:
"You want Salvia officinalis, not the stuff you get at the grocery store" when he was addressing Tony. Maybe he mispoke.
I didn't.
You didn't.
There is something called FYI and information for the google impaired.
NutriBob sounded as if he were:
"You want Salvia officinalis, not the stuff you get at the grocery store" when he was addressing Tony. Maybe he mispoke.
The balance is not so delicate. We play with it everyday, unknowingly. Sometimes, we decide what foods we're "in the mood for" based on a subconscious desire to increase or decrease certain neurotransmitters. We're not aware of it, but that's how it works. Sugar cravings, chocolate cravings, "I'd really like a nice thick steak", smoke a cigarette, (kids who smoke score higher on IQ tests), drink an energy drink, stop at the local bar. These are all examples. At times however that subconscious desire isn't us, it's the micro-vermin saying what they want!
"It's just not as simple as might be perceived when told to use a herb to do 'this or that'."
I put out information so people can research and decide for themselves. As far as do this or that goes, there are many people who would take arsenic if a physician told them to, unquestioningly. "Well you're the doctor". If I had blindly followed the doctor's orders in my life, I probably wouldn't be alive now. A degree doesn't make a person infallible or all knowing.
Yes, a balanced nervous system is necessary to maintain optimal health. Thing is, the infectious agents, aka micro-vermin, throw the nervous system out of balance. "I can't think." That's out of balance. The OP asked for a suggestion to help with the fog, I made a suggestion, one that I know works for me. OP, "Your mileage may vary", which is another way of saying, what works for me might not work for you.
Salvia Officianalis is the species of sage that contains the most thujone. The grocery store variety doesn't have as much, however, it too contains some awfully good antibacterial compounds. If you all knew just how much better I've gotten with herbals, you'd throw your big pharma produced drugs out and start eating weeds! Parsley, sage, rosemary and thyme....
"It's just not as simple as might be perceived when told to use a herb to do 'this or that'."
I put out information so people can research and decide for themselves. As far as do this or that goes, there are many people who would take arsenic if a physician told them to, unquestioningly. "Well you're the doctor". If I had blindly followed the doctor's orders in my life, I probably wouldn't be alive now. A degree doesn't make a person infallible or all knowing.
Yes, a balanced nervous system is necessary to maintain optimal health. Thing is, the infectious agents, aka micro-vermin, throw the nervous system out of balance. "I can't think." That's out of balance. The OP asked for a suggestion to help with the fog, I made a suggestion, one that I know works for me. OP, "Your mileage may vary", which is another way of saying, what works for me might not work for you.
Salvia Officianalis is the species of sage that contains the most thujone. The grocery store variety doesn't have as much, however, it too contains some awfully good antibacterial compounds. If you all knew just how much better I've gotten with herbals, you'd throw your big pharma produced drugs out and start eating weeds! Parsley, sage, rosemary and thyme....
Thank you nutribob,
I agree with most of what you say about 'what works'. For instance:
"I put out information so people can research and decide for themselves."
That's a bit different than saying "You want Salvia officinalis' but maybe that's splitting hairs.
I've seen too many naive people (about medicine especially) who will abandon antibiotics in favor of herbs/supplements.
One person in particular, not in this group, advised people to use Frontline-Plus (That's a tick and flea product for dogs) on themselves to cure Lyme. He and his mother drank it and other 'naive' people were asking how much to drink or to rub on their own bodies!'
He presented all the half-truths available from toxicology sites, pubmed etc about using it. Fipronil was the compound he talked about the most.
So, people sometimes DO have to be given more precise information especially when in the 'confused and ill' state as some members are said to be.
That person also posted this, about Fipronil:
"Fipronil works on INSECTS gaba receptors" and therefore won't hurt humans.
Since you're our resident expert on insects, what do you know about the dangers of using Fipronil, either orally or on the skin?
But here's my disclaimer----- in full caps. DO NOT EVEN CONSIDER USING FIPRONIL ON YOURSELF or if you use it on your dog, take all precautions not to get it on yourself or to breathe it in.
I heard many years later that he had died but no information as to what killed him.
I agree with most of what you say about 'what works'. For instance:
"I put out information so people can research and decide for themselves."
That's a bit different than saying "You want Salvia officinalis' but maybe that's splitting hairs.
I've seen too many naive people (about medicine especially) who will abandon antibiotics in favor of herbs/supplements.
One person in particular, not in this group, advised people to use Frontline-Plus (That's a tick and flea product for dogs) on themselves to cure Lyme. He and his mother drank it and other 'naive' people were asking how much to drink or to rub on their own bodies!'
He presented all the half-truths available from toxicology sites, pubmed etc about using it. Fipronil was the compound he talked about the most.
So, people sometimes DO have to be given more precise information especially when in the 'confused and ill' state as some members are said to be.
That person also posted this, about Fipronil:
"Fipronil works on INSECTS gaba receptors" and therefore won't hurt humans.
Since you're our resident expert on insects, what do you know about the dangers of using Fipronil, either orally or on the skin?
But here's my disclaimer----- in full caps. DO NOT EVEN CONSIDER USING FIPRONIL ON YOURSELF or if you use it on your dog, take all precautions not to get it on yourself or to breathe it in.
I heard many years later that he had died but no information as to what killed him.
Since we are all different, and Bob has stated that he feels better on herbs, how can you state that naive people shouldn't drop antibiotics for herbs?
Personally I have been on both together at the same time and I definetley say that for my Bart's, I get more help from herbs then abx. If I run out of my herb I ALWAYS breakout in more lesions. I am certainly not naive although I do have lesions in my brain that have reduced as a result of herbs.
Personally I have been on both together at the same time and I definetley say that for my Bart's, I get more help from herbs then abx. If I run out of my herb I ALWAYS breakout in more lesions. I am certainly not naive although I do have lesions in my brain that have reduced as a result of herbs.
Thank you for your unique contribution about your experience.
Perhaps I hadn't made myself clear------I was talking about people who took NO antibiotics but instead used ONLY herbs or supplements---- for Lyme or cos,
Perhaps I hadn't made myself clear------I was talking about people who took NO antibiotics but instead used ONLY herbs or supplements---- for Lyme or cos,
Correct, I think that Bob told us that he felt so much better just on herbs so I understand where he is coming from.
What medications or supplements are you currently taking?
I know that I was on antibiotics for several months, but it wasn't until I tried Low Dose Naltrexone that my brain fog has improved substantially. Some docs who are well educated will prescribe it without a problem (since initial dosage is only 1.5 mg and max dosage is only 4.5). Many docs are unaware of the MANY MANY MANY uses for naltrexone, so be prepared to go to your doc with your own printed out research findings. The Mayo Clinic recognizes LDN therapy, so that is a good one, as docs trust Mayo Clinic findings. Also, NIH has many documents showing it's benefits. If your doc is still wary (though, I can't understand how, it really doesn't have any side effects and no clinical trials have ever shown any adverse findings (to my knowledge)) your LLMD will be willing to prescribe. If you don't have an LLMD, holistic doctors, chiropractors, osteopaths, homeopaths, etc... all are willing to prescribe.
It really is wonderful. I'm not 100%, but I've GREATLY improved with LDN. Google LDN and brain fog and you will see a myriad of great success stories:) If you have any questions feel free to PM me.
I know that I was on antibiotics for several months, but it wasn't until I tried Low Dose Naltrexone that my brain fog has improved substantially. Some docs who are well educated will prescribe it without a problem (since initial dosage is only 1.5 mg and max dosage is only 4.5). Many docs are unaware of the MANY MANY MANY uses for naltrexone, so be prepared to go to your doc with your own printed out research findings. The Mayo Clinic recognizes LDN therapy, so that is a good one, as docs trust Mayo Clinic findings. Also, NIH has many documents showing it's benefits. If your doc is still wary (though, I can't understand how, it really doesn't have any side effects and no clinical trials have ever shown any adverse findings (to my knowledge)) your LLMD will be willing to prescribe. If you don't have an LLMD, holistic doctors, chiropractors, osteopaths, homeopaths, etc... all are willing to prescribe.
It really is wonderful. I'm not 100%, but I've GREATLY improved with LDN. Google LDN and brain fog and you will see a myriad of great success stories:) If you have any questions feel free to PM me.
I forgot to mention the best part... LDN is super-inexpensive! It's roughly $10 for a month supply (at 1.5mg dose).
Here's a good go to website:
www.lowdosenaltrexone.org/
But again, when going to your doc better to be armed with info from Mayo Clinic and NIH.
Here's a good go to website:
www.lowdosenaltrexone.org/
But again, when going to your doc better to be armed with info from Mayo Clinic and NIH.
Thanks to Leila, I am on it also, and I feel better after a week. Hoping with more time my brain fog improves. I didn't realize it could so I am excited.
I mostly adhere to the concept of evidence-based medicine not testimonials. The ILADS Guidelines are comprised of "Evidence-based guidelines for the management of Lyme disease" and there's no mention of herbs in the Guidelines.
I think we all agree that the ILADS Guidlines are good ones to follow. At least I do. But that's just me.
People that state they feel better on herbs are reporting their personal experience/testimonial. I believe them and would never say they didn't feel better on herbs.
The definition of evidence based medicine is:
"The process of applying relevant information derived from peer-reviewed medical literature to address a specific clinical problem; the application of simple rules of science and common sense to determine the validity of the information; and the application of the information to the clinical problem."
I think we all agree that the ILADS Guidlines are good ones to follow. At least I do. But that's just me.
People that state they feel better on herbs are reporting their personal experience/testimonial. I believe them and would never say they didn't feel better on herbs.
The definition of evidence based medicine is:
"The process of applying relevant information derived from peer-reviewed medical literature to address a specific clinical problem; the application of simple rules of science and common sense to determine the validity of the information; and the application of the information to the clinical problem."
I have met two people with MS and both within weeks of LDN treatment improved dramatically (from wheelchair confinement to being fully mobile).
The hardest part for them was finding a willing doctor to sign the script (it's off label & an "orphan" drug, so most doctors will not)
Anyway, has anyone tried Coconut Oil?
It is considered the superfuel for the brain.
With it's medicinal properties like ant-fungal, anti-microbial, anti-parasitic, anti-protozoan, anti-viral...Is there anything else? It is one of the top "Functional" foods.
Anybody on ABX treatment for Lymes Disease SHOULD consider taking it.
It is more effective than any anti-fungal meds and without any side effects.
By the way, some of the brain fog people are experiencing could be associated with Candida or fugal infection ( the main culprit for this being antibiotics)
But, please don't take my word, for it, nor your Doctor's, as he may be
a. clueless, b. biased c. muzzled d. misinformed.
Please Do you own research.
You may want to visit the coconut reasearch center website for details.
(I have a collection of 100s of studies on coconut oil).
Daily consumption of 4T virgin organic coconut oil, daily "Oil Pulling"
with the same (just look it up if not familiar with it), meditation, self-hypnosis,
along with daily physical activity and some key supplements, have kept me
infection and disease free for years.
This is not intended as a substitute for medical advice.
Love & Peace to all.
Niko
The hardest part for them was finding a willing doctor to sign the script (it's off label & an "orphan" drug, so most doctors will not)
Anyway, has anyone tried Coconut Oil?
It is considered the superfuel for the brain.
With it's medicinal properties like ant-fungal, anti-microbial, anti-parasitic, anti-protozoan, anti-viral...Is there anything else? It is one of the top "Functional" foods.
Anybody on ABX treatment for Lymes Disease SHOULD consider taking it.
It is more effective than any anti-fungal meds and without any side effects.
By the way, some of the brain fog people are experiencing could be associated with Candida or fugal infection ( the main culprit for this being antibiotics)
But, please don't take my word, for it, nor your Doctor's, as he may be
a. clueless, b. biased c. muzzled d. misinformed.
Please Do you own research.
You may want to visit the coconut reasearch center website for details.
(I have a collection of 100s of studies on coconut oil).
Daily consumption of 4T virgin organic coconut oil, daily "Oil Pulling"
with the same (just look it up if not familiar with it), meditation, self-hypnosis,
along with daily physical activity and some key supplements, have kept me
infection and disease free for years.
This is not intended as a substitute for medical advice.
Love & Peace to all.
Niko
It is amazing isn't it?! I was rapidly going downhill before starting it. Even after starting my abx regime, I was probably having extremely BAD days 85% of every month. Now, it is pretty much a 50/50 shot as to whether I'm going to have a good day or a bad day. Even the bad days are more moderate than severe. Energy was the first improvement, then brain fog, bottom of the feet pain, joint pain, appetite, irritability, anxiety, dry/brittle nails, hair loss, double vision... all are greatly improving! This is all after a month on the lowest dose. This month I step up to 3mg and I hope to see improvement in muscle weakness, tremor, and for the love of God some lymphatic relief would be WONDERFUL!
The only thing that I've noticed since starting it is that I pee all of the time and have mild nightsweats. The nightsweats are apparently out of the norm, so it might not be related. I also have just started seeing very mild insomnia, but it's not bothersome. I welcome the energy after barely being able to move for months:)
It's crazy how many conditions LDN treats. I found out a couple of weeks ago that it is approved treatment for autism in children. My sister in law had nearly given up on my niece with Asperger's, but now has hope with LDN:) Truly remarkable!
The only thing that I've noticed since starting it is that I pee all of the time and have mild nightsweats. The nightsweats are apparently out of the norm, so it might not be related. I also have just started seeing very mild insomnia, but it's not bothersome. I welcome the energy after barely being able to move for months:)
It's crazy how many conditions LDN treats. I found out a couple of weeks ago that it is approved treatment for autism in children. My sister in law had nearly given up on my niece with Asperger's, but now has hope with LDN:) Truly remarkable!
I don't consume coconut oil, but a couple of weeks ago I started lathering it all over my dry skin. I use it now instead of lotions/topical ointment. It works wonderfully! The best part is that I smell like coconut cake all day:)
I cook with coconut oil------ mostly when I cook Indian food---- and I love using it.
I should clarify that in Candida, in regards to brain fog, the main culprit as a causative agent is antibiotics and not necessarily the same for Neurological Lyme disease mental fog symptoms. Two separate presentations, however,
easily co-existing while on antibiotic treatment for Lyme Disease.
Cheers!
Niko
"The appropriate dose of coconut oil depends on several factors such as the user’s age, health, and several other conditions.
At this time there is not enough scientific information to determine an appropriate range of doses for coconut oil.
Keep in mind that natural products are not always necessarily safe and dosages can be important. Be sure to follow relevant directions on product labels and consult your pharmacist or physician or other healthcare professional before using."
"Some coconut oil products are referred to as “virgin” coconut oil. Unlike olive oil, there is no industry standard for the meaning of “virgin” coconut oil. The term has come to mean that the oil is generally unprocessed. For example, virgin coconut oil usually has not been bleached, deodorized, or refined.
Some coconut oil products claim to be “cold pressed” coconut oil. This generally means that a mechanical method of pressing out the oil is used, but without the use of any outside heat source. The high pressure needed to press out the oil generates some heat naturally, but the temperature is controlled so that temperatures do not exceed 120 degrees Fahrenheit.
Coconut oil is used for diabetes, heart disease, chronic fatigue, Crohn's disease, irritable bowel syndrome (IBS), Alzheimer’s disease, thyroid conditions, energy, and boosting the immune system. Ironically, despite coconut oil’s high calorie and saturated fat content, some people use it to lose weight and lower cholesterol.
Coconut oil is sometimes applied to the skin as a moisturizer and to treat a skin condition called psoriasis.
How does it work?
Coconut oil is high in a saturated fat called medium chain triglycerides. These fats work differently than other types of saturated fat in the body. However, research on the effects of these types of fats in the body is very preliminary.
When applied to the skin, coconut oil has a moisturizing effect."
http://www.webmd.com/vitamins-supplements/ingredientmono-1092-coconut%20oil.aspx?activeIngredientId=1092&activeIngredientName=coconut%20oil
At this time there is not enough scientific information to determine an appropriate range of doses for coconut oil.
Keep in mind that natural products are not always necessarily safe and dosages can be important. Be sure to follow relevant directions on product labels and consult your pharmacist or physician or other healthcare professional before using."
"Some coconut oil products are referred to as “virgin” coconut oil. Unlike olive oil, there is no industry standard for the meaning of “virgin” coconut oil. The term has come to mean that the oil is generally unprocessed. For example, virgin coconut oil usually has not been bleached, deodorized, or refined.
Some coconut oil products claim to be “cold pressed” coconut oil. This generally means that a mechanical method of pressing out the oil is used, but without the use of any outside heat source. The high pressure needed to press out the oil generates some heat naturally, but the temperature is controlled so that temperatures do not exceed 120 degrees Fahrenheit.
Coconut oil is used for diabetes, heart disease, chronic fatigue, Crohn's disease, irritable bowel syndrome (IBS), Alzheimer’s disease, thyroid conditions, energy, and boosting the immune system. Ironically, despite coconut oil’s high calorie and saturated fat content, some people use it to lose weight and lower cholesterol.
Coconut oil is sometimes applied to the skin as a moisturizer and to treat a skin condition called psoriasis.
How does it work?
Coconut oil is high in a saturated fat called medium chain triglycerides. These fats work differently than other types of saturated fat in the body. However, research on the effects of these types of fats in the body is very preliminary.
When applied to the skin, coconut oil has a moisturizing effect."
http://www.webmd.com/vitamins-supplements/ingredientmono-1092-coconut%20oil.aspx?activeIngredientId=1092&activeIngredientName=coconut%20oil
Cave, I can answer most of your questions in detail and also expand on some of the information you posted.
As I'm still at work, so this may take some time to put together, though.
So, it will be in another post with some references where applicable.
Best quality will be usually available through reputable suppliers/dealers.
I purchase mine wholesale in 10L containers from a Dutch family operation
in Southern Ontario (Klassic Coconut brand) and I'm hoping to visit their processing facility this summer. It's excellent quality and I've been buying it for years. I have an informal holistic/alternative/natural co-operative club.
Services, education, seminars, classes and products at member prices.
(bricks and mortar, not online)
Be careful with "medical" websites, or biased special interest websites that offer a lot of "pseudoscience" as scientific proof.
As far as psoriasis, I have prepared a comprehensive report, detailing an
natural alternative treatment protocol with similar results to biologics,
but without the serious side effects (they are immumo-suppressants) and
without the outrageous costs!
The "preliminary" aspect of some studies and research is NOT accurate!
Remember, Coconut oil is natural, therefore not patentable!
Being one of the most effective medicinal foods for a gazillion health conditions, special interest groups like the canola and corn and soy industrial mega farmers along with their biotech partners and chemical/pharmaceutical manufacturers, are putting up a fight.
You were probably very young in the 80s to remember, this, but there was such a huge propaganda against saturated fats and specially Coconut Oil.
Nowadays, my supplier cannot keep up with the demand! It's crazy.
More another time.
Blessings!
Niko
As I'm still at work, so this may take some time to put together, though.
So, it will be in another post with some references where applicable.
Best quality will be usually available through reputable suppliers/dealers.
I purchase mine wholesale in 10L containers from a Dutch family operation
in Southern Ontario (Klassic Coconut brand) and I'm hoping to visit their processing facility this summer. It's excellent quality and I've been buying it for years. I have an informal holistic/alternative/natural co-operative club.
Services, education, seminars, classes and products at member prices.
(bricks and mortar, not online)
Be careful with "medical" websites, or biased special interest websites that offer a lot of "pseudoscience" as scientific proof.
As far as psoriasis, I have prepared a comprehensive report, detailing an
natural alternative treatment protocol with similar results to biologics,
but without the serious side effects (they are immumo-suppressants) and
without the outrageous costs!
The "preliminary" aspect of some studies and research is NOT accurate!
Remember, Coconut oil is natural, therefore not patentable!
Being one of the most effective medicinal foods for a gazillion health conditions, special interest groups like the canola and corn and soy industrial mega farmers along with their biotech partners and chemical/pharmaceutical manufacturers, are putting up a fight.
You were probably very young in the 80s to remember, this, but there was such a huge propaganda against saturated fats and specially Coconut Oil.
Nowadays, my supplier cannot keep up with the demand! It's crazy.
More another time.
Blessings!
Niko
Is it not the overall lack of evidence for chronic Lyme and/or its treatment that has us all in such a debacle?
While undiagnosed, I poured over mainstream medical literature, which is strongly opposed the existence of chronic Lyme, as well as the efficacy of long-term antibiotics.
There is a dearth of evidence-based scientific studies on chronic Lyme and co-infections in the high-impact (highly regarded) medical journals, which is why LLMD's base a lot of diagnoses on clinical evidence and treatment on experience within their practices.
Personally, the lack of evidence-based medicine regarding chronic Lyme is why patients forums are of such value to me. In the absence of better science, I do value patient testimonials.
My own case was clinically diagnosed, and my excellent improvement to years of antibiotics is supported by mainstream medical studies. I share my story to give other people ideas of what to consider for their own situation, because I know my experience counters mainstream medicine.
Had I adhered to mainstream evidence-based medicine, I would have never been diagnosed with or treated for Lyme. In fact, like many other Lyme patients, I had numerous doctors (neurologists and other specialists) emphatically deny the possibility of Lyme as a cause of my symptoms, and my primary care physician all but told me to leave and never return if I was going to pursue Lyme treatment from an LLMD.
As a lay-person, which is all anyone on a patient forum such as this can be considered, even if you cite papers from PubMed, etc., you do not have the authority or expertise to evaluate the validity of such studies. You might find a reference from the literature supporting the existence of chronic Lyme, but then how do you know if the journal is highly regarded? How do you know if that paper has been debunked since publication?
Testimonials and bad references can both give misleading information. We all need to apply judgement to anything we read online, whether it is a personal statement or in reference to a scientific study. Personally, and this is just my opinion, I think patients testimonials can be of interest and value to readers of patient forums such as this. If anything, (and again this is just my opinion), I am highly skeptical of posts in which the user "cuts and pastes" heavily from literature sources that, so far as I can tell, the poster is not qualified to critically evaluate.
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