22 replies to this topic

[birthdaysuit]

I was recently diagnosed with neurological lyme disease, I have been telling doctors for years that I had lyme but they refused testing and tried to prescribe me anti-psycotics/anti-depressents. I went to numerous neurologists who thought I had POT's and rheumatologists who diagnosed me with the mysterious fibromyalgia. Only recently did I get a iGeneX test that indicated that I indeed had lyme. I remember back in the summer of 2012 when I had a red deer tick on me. There was no bullseye, instead a prickly rash developed over my entire body over the course of a few months. In October of 2014 I started experiencing dullness, insomnia, derealization, anxiety, panic, heart palpitations, depersonalization, extreme episodes of fatigue and energy, inner agitation, emotional instability, stuttering, social anxiety, nerve pain, nervous system deregulation etc. I blamed these symptoms of Lyme on my heavy cannabis and psilocybin use but I guess that really isn’t the case anymore. Although, the THC possibly added panic to my already elevated fight or flight state. When my work colleagues started to notice my odd episodes they informed me that I should go see a doctor. 

 

In late October 2014, two days before my birthday I decided to visit my doctor. She asked a plethora of questions, many of which stumped me and left me  confused. For instance, I did not know when my birthday was nor could I articulate any of my thoughts, I just felt derealized and dull. My doctor feared that I had meningitis and informed me that I should go to the emergency room. I opted out and asked for a Lyme Blood test. She put me on three weeks of Doxycycline, which made me feel a lot better. When my Lyme results came back negative she decided that if I felt better I should consider ceasing Doxycycline. The winter of 2014 and 2015 was great. I felt pretty good and was skiing everyday. No more delay in cognitive thought, more sleep, less spaciness, just all-around a more happy me.  

 

When the Summer of 2015 rolled by I started experiencing many of the same aforesaid symptoms but much more noticeable and intrusive. Major brain fog, zero spacial awareness, depression, anxious for no apparent reason, ADHD, OCD, social phobia, face twitching, joint pains, sporadic headaches, mental and physical fatigue that would manifest itself in episodes followed by a clear, manic like mind with lots of energy. A bizarre void like feeling on the left side of my head, blurred vision, faint feeling, inability to focus at work, inability to talk to people for long periods of time, feeling of impending doom, overstimulation, elevated fight or flight, unable to wake.  

 

In February 2016, I finally ordered my blood work for a iGeneX Lyme test. My IgG test and CDC results were supposedly negative.

 

IgG

Band 31 IND

Band 41 ++

Band 58+

All other bands negative. 

 

IgM

Band 18 +

Band 31 +

Band 39 IND

Band 41 ++

Bands 83-93 IND

All other bands negative; By CDC standards these are negative results by IGENEX they have clinical significance, although they are not positive. My IFA, B. Burgdorferi is pending but as of right now my doctors are telling me that the results are indicative of Lyme Disease.

 

Since Lyme bacteria is cell-wall-defiicent bacteria, supplementation of Vitamin D converts uncontrollable to 1,25-D. Hence, bacteria catalyze 1,25-D conversion process, likely suppressing the immune system making a favorable environment for the lyme bacteria. So vitamin D for the time being will be stopped, I’m looking for anti-bacterial minerals and herbs that help with Lyme. I’m in the process of getting treatment and I would love to hear other people’s experiences!

 

Probiotics, teasel root, grapefruit seed extract, mangosteen, ALA, colloidal silver, olive leaf extract, creatine, coenzyme Q10, magnesium, Lithium Orotate in trace amounts is suppose to be great for protecting the brain. Treatment options working synergistically with antibiotics, RIFE Machine, cold laser therapy? 

 

 

 

 

 

 

 

Edited by birthdaysuit, 05 March 2016 - 10:34 PM.

[birthdaysuit]

I know many people think Colloidal silver is a scam, even if something works to a marginal benefit that’s better than no benefit. I really need input on all of this.

[Vesuvius]

Hello friend,

 

I too was in a similar situation. Had Lyme meningitis. Doctor prescribed Doxy, which cleared me up for about 6 months, but my symptoms returned, persisted and worsened. November 2015 I was at my wit's end. Intense Brain fog, memory problems, trouble sleeping.

 

December 2015 I began the following daily regimen

 

• 400mg pulsed dose Doxycycline
•  65 mg Methylene blue(always taken with at least 2g vitamin C, usually more although I don't think this matters much)
• 600 mg Artemisinin 

 

I also took took the following supplements to deal with Herx reactions and help mitigate the effect of Artemisinin on healthy cells:

• NAC
• Alpha Lipoic Acid
• Curcumin

 

I did this for the entire month of December. 2 weeks into it I began to feel much better. To this day I feel amazing. Luckily in my case, my Lyme presented with a clear neurological symptom. Every time I got a Lyme flare up, I experienced uncontrollable twitching and nerve pain in my right eye. Since ending my regimen, this no longer happens to me, which I take as a clear indication of improvement. I have not experienced any return of symptoms. It's still too early to definitively declare that I am Lyme free, but this is the best I've felt in months. If It get another flare up, I will simply do another round of this regimen. But I am optimistic.

 

My research for this regimen is inspired directly by this paper.

http://www.mdpi.com/2079-6382/4/3/397

I simply chose the most easily accessible and relatively safe substances, but there may be more potent combinations from this large list.

 

This talk was also very informative, although it did not directly inspire this regimen.

 

In short, the logic behind the stack is the following:

1. Doxycycline is a poor anti-biotic choice against Lyme (especially considering cell-wall deficient forms of Lyme, which render Doxy useless). It's not completely ineffective but there are better choices. It still remains as part of the stack however because it is a kind of shotgun style antibiotic.
2. Chronic Lyme symptoms are more likely due to co-infections, mainly Babesia and Bartonella. These infections require malaria medications. Azithromycin and Atovaquone would be ideal here, but they require a prescription which my doctor would not give me.
3. The mechanism of action behind Artemisinin seems very resilient to bacterial resistance. It essentially creates a free radical bomb. This also means that cell-wall deficient forms still will be targeted.

 

I have researched Lyme quite extensively and am glad to answer any questions. I hope this helps you and anyone else suffering with Lyme. It truly is a nightmare.

 

Edited by Vesuvius, 08 March 2016 - 02:25 AM.

[Polyamine]

Your rash sounds more like a Rickettsial rash than it does than a Lyme rash.  Co-infections are common and when you have multiple issues like you are having, it is often a multiple pathogen problem.  I would recommend finding a LLMD, or Lyme literate medical doctor.  I prefer pulsing as Vesuvius mentioned but I don't like using artemisinin alone without another anti parasitic agent.  Resistance can sometimes occur rapidly when used as a sole agent with some strains of babesia. 

 

I've unfortunately been trained in Lyme and co-infection treatment due to several different bouts with vector borne diseases.  The best advice I could give would be to eat much less protein and a lot of green leafy vegetables.  You are hyperacidic and are most likely making too much ammonia.  Eat alkaline foods. 

 

[birthdaysuit]

 

Your rash sounds more like a Rickettsial rash than it does than a Lyme rash.  Co-infections are common and when you have multiple issues like you are having, it is often a multiple pathogen problem.  I would recommend finding a LLMD, or Lyme literate medical doctor.  I prefer pulsing as Vesuvius mentioned but I don't like using artemisinin alone without another anti parasitic agent.  Resistance can sometimes occur rapidly when used as a sole agent with some strains of babesia. 

 

I've unfortunately been trained in Lyme and co-infection treatment due to several different bouts with vector borne diseases.  The best advice I could give would be to eat much less protein and a lot of green leafy vegetables.  You are hyperacidic and are most likely making too much ammonia.  Eat alkaline foods. 

 

 

 

I don’t know if there is a correlation but my sweat has smelt like ammonia, when I use to take l-lysine it was really bad.  

[birthdaysuit]

I found an LLMD about 40 minutes from where I live. I’m going to see them on Wednesday. I’m honestly scared and want to get this treated, I just know it’s going to suck. 

[birthdaysuit]

 

Your rash sounds more like a Rickettsial rash than it does than a Lyme rash.  Co-infections are common and when you have multiple issues like you are having, it is often a multiple pathogen problem.  I would recommend finding a LLMD, or Lyme literate medical doctor.  I prefer pulsing as Vesuvius mentioned but I don't like using artemisinin alone without another anti parasitic agent.  Resistance can sometimes occur rapidly when used as a sole agent with some strains of babesia. 

 

I've unfortunately been trained in Lyme and co-infection treatment due to several different bouts with vector borne diseases.  The best advice I could give would be to eat much less protein and a lot of green leafy vegetables.  You are hyperacidic and are most likely making too much ammonia.  Eat alkaline foods. 

 

 

My rash is barely visible and doesn’t match Rickettsial rash. It’s all around my body light pink, barely visible, prickly like feeling, burns sometimes, and makes it hard putting on cloths. Feels very uncomfortable. I’m going to get tested for co-infectiosn and I’m getting a lumbar puncture as well. 

[chemicalambrosia]

I found an LLMD about 40 minutes from where I live. I’m going to see them on Wednesday. I’m honestly scared and want to get this treated, I just know it’s going to suck. 

 

It is good you found a LLMD. I know several people with Lyme. My advice is don't resist IV antibiotics if other treatments don't seem to be effective. Taking IV antibiotics might suck in the short term, but it can get results where oral antibiotics don't.

[AlmostEasy]

I've heard great success / even better than antibiotic success with the herbal protocols, such as this one:

 

http://www.nutramedi...support-program

 

I'm curious, I have similar symptoms, without the ups and downs though just the chronic unwavering fog / fatigue / spaciness / face void / speech issue type things and I've wondered about Lyme for quite some time.  I had a Quest Diagnostics Western Blot that came back negative, but the amount of faith in that is slim and it's obviously not comprehensive.

 

I've ordered some doxycycline from an overseas pharmacy, how much were you taking a day when it made you feel better initially?

[birthdaysuit]

I've heard great success / even better than antibiotic success with the herbal protocols, such as this one:

 

http://www.nutramedi...support-program

 

I'm curious, I have similar symptoms, without the ups and downs though just the chronic unwavering fog / fatigue / spaciness / face void / speech issue type things and I've wondered about Lyme for quite some time.  I had a Quest Diagnostics Western Blot that came back negative, but the amount of faith in that is slim and it's obviously not comprehensive.

 

I've ordered some doxycycline from an overseas pharmacy, how much were you taking a day when it made you feel better initially?

I am willing to try the Cowden protocol. Heard some great stories about it helping and putting people in remission. 

 

I took 100mg twice daily. After I got back my blood test results which indicated I was negative in Lyme I took doxy three times daily for two days before stopping. Wish I hadn’t though because now it has come back with a vengeance.  

[AlmostEasy]

 

I've heard great success / even better than antibiotic success with the herbal protocols, such as this one:

 

http://www.nutramedi...support-program

 

I'm curious, I have similar symptoms, without the ups and downs though just the chronic unwavering fog / fatigue / spaciness / face void / speech issue type things and I've wondered about Lyme for quite some time.  I had a Quest Diagnostics Western Blot that came back negative, but the amount of faith in that is slim and it's obviously not comprehensive.

 

I've ordered some doxycycline from an overseas pharmacy, how much were you taking a day when it made you feel better initially?

I am willing to try the Cowden protocol. Heard some great stories about it helping and putting people in remission. 

 

I took 100mg twice daily. After I got back my blood test results which indicated I was negative in Lyme I took doxy three times daily for two days before stopping. Wish I hadn’t though because now it has come back with a vengeance.  

 

Yup, that's how MRSA was created.  People feel good then stop, only the most resistant bacteria remnants remain and instead of wiping them out you now allow them to mass multiply into an entire herd of super resistant ones.  That's unfortunate.

 

It seems though you know exactly what is going on, which is half the battle.  These are some good resources I found when researching Lyme:

 

http://ilads.org/

http://www.healingwe...fault.aspx?f=30

[Polyamine]

The blood tests for Lyme are almost useless.  They only detect 1 or 2 strains of borrelia out of more than 100. 

[AlmostEasy]

The blood tests for Lyme are almost useless.  They only detect 1 or 2 strains of borrelia out of more than 100. 

 

The IGeneX one is fairly highly praised, seems to be a lot more consistent than that.  Do you have any solid info on that?  Sources of any kind?

[birthdaysuit]

The blood tests for Lyme are almost useless.  They only detect 1 or 2 strains of borrelia out of more than 100. 

Your correct, however, it is significantly more accurate than the PCR test. 

 

They have patents where tests are 94.5% accurate for Lyme bacteria. 

[odspot]

I've been engaged in a really long health-battle over the past 15 months.

 

Initially I thought it was Adrenal Fatigue, then Hypothyroidism .. then I started to develop neurological symptoms a few months ago that have become increasingly disabling, i.e. POTS, dysautonomia, balance problems when walking etc. 

 

I met with a doctor today who is a strong proponent of seeking out and treating bacterial infections. There is some controversy over how present these are in Australia, however. I have never been bitten by a tic .. but he does believe that a Lyme-like infection is causing my symptoms. He wants to test me for Rickettsiosis, Borrelia/Lyme, Bartonella and Q Fever. However, he said the tests often produce false negatives and he thinks I should start antibiotic treatment anyway.

 

I so desperately want to believe this is my answer because I feel near-death and the neurological/endocrinological symptoms are unbearable. 

 

However, I wonder if I am actually dealing with an enterovirus, rather than a bacterial infection ... and I have read that antibiotics are not effective for the former ..

[Dichotohmy]

One thing to keep in mind is that ticks aren't the only known vectors of so-called tick-borne infections. Borellia in particular can be spread by mosquitos, mites, fleas, and likely spiders and more. If one biting vector spreads lyme bacteria, its logical to assume other insects and arachnids that bite can spread lyme bacteria as well. It might not be such a stretch that these borellia vectors also harbor babesia and bartonella like ticks. I guess the big question is why, when practically everyone has been bitten by some potential lyme vector, that such a tiny percentage develope complications. I would bet that an acquired or inherent immune deficiency is the missing link here.

http://www.morgellon...llons-intro.htm

I would agree with your doctor, odspot not to seek testing too enthusiastically.

[JayZin]

That's scary Birthdaysuit, so any specific ideas for Tackling it?

[Polyamine]

While the literature has found Borrelia burdorferi in mosquitoes in confined tests, there is no current research to verify the transmission of Lyme Disease from mosquitoes to humans.  Having Borrelia inside a mosquito gut and transferring that to humans is a HUGE leap as the Osp proteins have never been shown to change.  Without altering the proteins, the chance of transmission is unlikely.  I won't say it couldn't ever happen, but the chances are very, very low. 

 

What really matters is to be able to change our GI flora back to what they were prior to the Borrelia infection.  IMO, Borrelia causes problems because it secretes a series of proteins that alter the normal flora in the GI tract.  This alteration causes a massive immune response and normal bacteria that are non-pathogenic suddenly can become pathogenic.  There's a whole lot to this that I'm leaving out.   Nitrogen ingestion and intestinal ammonia absorption become an issue.   

[odspot]

While the literature has found Borrelia burdorferi in mosquitoes in confined tests, there is no current research to verify the transmission of Lyme Disease from mosquitoes to humans.  Having Borrelia inside a mosquito gut and transferring that to humans is a HUGE leap as the Osp proteins have never been shown to change.  Without altering the proteins, the chance of transmission is unlikely.  I won't say it couldn't ever happen, but the chances are very, very low. 

 

What really matters is to be able to change our GI flora back to what they were prior to the Borrelia infection.  IMO, Borrelia causes problems because it secretes a series of proteins that alter the normal flora in the GI tract.  This alteration causes a massive immune response and normal bacteria that are non-pathogenic suddenly can become pathogenic.  There's a whole lot to this that I'm leaving out.   Nitrogen ingestion and intestinal ammonia absorption become an issue.   

 

Given that I live in Australia -- where Lyme isn't prevalent, and I also haven't spent any time in the bush -- does that mean my chances of having Borrelia are pretty low?

 

As I said above, I worry my symptoms are post-viral, rather than being caused by something bacterial. Yet this particular doctor has an interest in bacterial infections, so seems more inclined to see everything through that lens. 

[odspot]

One thing to keep in mind is that ticks aren't the only known vectors of so-called tick-borne infections. Borellia in particular can be spread by mosquitos, mites, fleas, and likely spiders and more. If one biting vector spreads lyme bacteria, its logical to assume other insects and arachnids that bite can spread lyme bacteria as well. It might not be such a stretch that these borellia vectors also harbor babesia and bartonella like ticks. I guess the big question is why, when practically everyone has been bitten by some potential lyme vector, that such a tiny percentage develope complications. I would bet that an acquired or inherent immune deficiency is the missing link here.

http://www.morgellon...llons-intro.htm

I would agree with your doctor, odspot not to seek testing too enthusiastically.

 

Well, I want to believe him. My symptoms certainly don't fit the classic depression/anxiety model anymore. They span across all systems -- neurological, endocrinological etc., yet trying to fix e.g. the thyroid or adrenals etc. never really helped. If it was a bug making my life hell, then it would be amazing to find some kind of cause. But as I've said, it also seems like a lot of people with viral-based CFS struggle to recover .. and if this guy is saying that the bacterial tests aren't very sensitive -- and he also has an interest in dx'ing bacterial infections -- then I'm basically placing all my faith in him getting me better .. because I have zero options left at this point.

[Polyamine]

 

While the literature has found Borrelia burdorferi in mosquitoes in confined tests, there is no current research to verify the transmission of Lyme Disease from mosquitoes to humans.  Having Borrelia inside a mosquito gut and transferring that to humans is a HUGE leap as the Osp proteins have never been shown to change.  Without altering the proteins, the chance of transmission is unlikely.  I won't say it couldn't ever happen, but the chances are very, very low. 

 

What really matters is to be able to change our GI flora back to what they were prior to the Borrelia infection.  IMO, Borrelia causes problems because it secretes a series of proteins that alter the normal flora in the GI tract.  This alteration causes a massive immune response and normal bacteria that are non-pathogenic suddenly can become pathogenic.  There's a whole lot to this that I'm leaving out.   Nitrogen ingestion and intestinal ammonia absorption become an issue.   

 

Given that I live in Australia -- where Lyme isn't prevalent, and I also haven't spent any time in the bush -- does that mean my chances of having Borrelia are pretty low?

 

As I said above, I worry my symptoms are post-viral, rather than being caused by something bacterial. Yet this particular doctor has an interest in bacterial infections, so seems more inclined to see everything through that lens. 

 

 

Your chances of having Lyme are low IMO, but I have had others that live in Australia ask me questions and they have similar issues to what you have.  It's a response to a pathogen IMO, but not necessarily Lyme.  There are thousands of pathogens out there that could cause us problems.  It seems like I've seen more amoeba based issues lately.  Technically, it's not one bug causing you hell, it's multiple bugs.  Your normal flora has most likely changed into one that is not conducive to good health.  Bacterial overgrowth, as well as yeast overgrowth, can cause problems on their own. 

 

From what I've observed in people like yourself, you don't have adequate pterin moieties to make tetrahydrobiopterin.  That means eating fruit and bioflavinoid rich foods would probably help.  Eating A LOT of raw greens like spinach helps as well.  But unless you figure out what you have, you most likely won't be able to get back to your old self. 
 

[odspot]

 

 

While the literature has found Borrelia burdorferi in mosquitoes in confined tests, there is no current research to verify the transmission of Lyme Disease from mosquitoes to humans.  Having Borrelia inside a mosquito gut and transferring that to humans is a HUGE leap as the Osp proteins have never been shown to change.  Without altering the proteins, the chance of transmission is unlikely.  I won't say it couldn't ever happen, but the chances are very, very low. 

 

What really matters is to be able to change our GI flora back to what they were prior to the Borrelia infection.  IMO, Borrelia causes problems because it secretes a series of proteins that alter the normal flora in the GI tract.  This alteration causes a massive immune response and normal bacteria that are non-pathogenic suddenly can become pathogenic.  There's a whole lot to this that I'm leaving out.   Nitrogen ingestion and intestinal ammonia absorption become an issue.   

 

Given that I live in Australia -- where Lyme isn't prevalent, and I also haven't spent any time in the bush -- does that mean my chances of having Borrelia are pretty low?

 

As I said above, I worry my symptoms are post-viral, rather than being caused by something bacterial. Yet this particular doctor has an interest in bacterial infections, so seems more inclined to see everything through that lens. 

 

 

Your chances of having Lyme are low IMO, but I have had others that live in Australia ask me questions and they have similar issues to what you have.  It's a response to a pathogen IMO, but not necessarily Lyme.  There are thousands of pathogens out there that could cause us problems.  It seems like I've seen more amoeba based issues lately.  Technically, it's not one bug causing you hell, it's multiple bugs.  Your normal flora has most likely changed into one that is not conducive to good health.  Bacterial overgrowth, as well as yeast overgrowth, can cause problems on their own. 

 

From what I've observed in people like yourself, you don't have adequate pterin moieties to make tetrahydrobiopterin.  That means eating fruit and bioflavinoid rich foods would probably help.  Eating A LOT of raw greens like spinach helps as well.  But unless you figure out what you have, you most likely won't be able to get back to your old self. 
 

 

 

Hmm, well that's a depressing prognosis. I did go for the blood test today .. hopefully it turns up something.

 

Even if I don't figure out what I have, do you think it's still worth giving antibiotic therapy a shot?

 

I just don't have much fight left in me. I spent the past two weeks in a psych ward which was ultimately of no help because they just dismissed all my complaints as psychosomatic. Because of the endocrine disruptions (presumably being caused by the pathogen), I can't even tolerate cortisol-lowering agents like Valium, which makes a lot of my symptoms worse, yet the constant anxiety/agitation is unbearable. I would give anything to go back to the point where (severe) depression and anxiety were my chief complaints. 

 

I was hoping that targeting the pathogen directly might alleviate some of the neurological, endocrinological etc. symptoms, since taking more specific paths like Hydrocortisone or Thyroid supplementation weren't all that fruitful. But who knows if I would even tolerate antibiotics now.

[Polyamine]

In situations of increased stress and elevated cortisol, supplementing phosphatidyl serine often helps.  Eating cherries daily can help as well.  They are a source of melatonin and in situations of chronic inflammation, it acts as an antioxidant.  I would try eating nutmeg daily.  If your acetylcholine levels are high, it may help.  Eating animal protein increases carnitine levels and carnitine can block your thyroid hormones. 

 

 

http://pubs.acs.org/...rnalCode=jafcau

 

http://link.springer...1007/BF00280123

 

http://onlinelibrary...tomisedMessage=

 

http://press.endocri.../jcem.86.8.7747

 

http://www.sciencedi...308814605009660

 

http://www.nepjol.in...ticle/view/8765