Lyme Disease, Anyone Have it?

qazwsxedc34

Active member
I was recently diagnosed with neurological and possibly latent lyme disease, I have been telling doctors for years that I have had lyme but they refused to do testing and tried to prescribe me anti-psycotics/anti-depressents. I went to numerous neurologists who thought I had POT syndrome and rheumatologists who diagnosed me with the mysterious fibromyalgia. I want to emphasize that if you’re living in the Northeast and you feel even slight symptoms which I have mentioned below it would be wise to get checked for Lyme. That’s if you doctor even allows it.

My 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. These symptoms hit me in waves; sometimes I would feel like any normal extroverted person and a few moments later I felt screwed up. I blamed these symptoms of Lyme on my heavy cannabis use but I guess that really isn’t the case anymore. Although, the THC possibly added anxiety to my already elevated fight or flight state but I still love weed.

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 and smoking dank sour diesel everyday. No more delay in cognitive thought, more sleep, less spaciness, just all-around a more happy me. I should make it clear that if you took a three week regime of Doxycycline for Lyme Disease it likely did not kill the Lyme Bacteria. The Bacteria will lie dormant in your body and could in the future drastically effect you.

When the Summer of 2015 rolled by I started experiencing many of the same aforesaid symptoms but much more noticeable and intrusive. Brain fog, zero spacial awareness, slight depression, anxious for no apparent reason, ADHD, intrusive thoughts, face twitching, joint pains, sporadic headaches, mental and physical fatigue that would manifest itself in episodes followed by a clear 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, overstimulation, elevated fight or flight, unable to wake. I legitimately thought I was going crazy but concealed these problems and often pushed them to the side. I thought most of these problems were embedded deep within my subconscious mind but in the end it was a manifestation of a physical problem.

If you do have Lyme try not to take Vitamin D. 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. Any immune-depressant like Mercury in Tuna should not be ingested, especially if you have Lyme. I KNOW many Newschooler’s have lyme disease 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? Has anyone tried any of these options?
 
Didnt read all of that closely, but one of my best friends has lymes. He struggled to get it diagnosed for a few years when he had terrible joint pain and some of the symptoms you described and when it finally was he went on a very strict diet to not feed the lymes for like a year and a half, taking tons of supplements to put it into remission. That was about 4 years ago and now it kinda comes and goes he says, depending on how his body is doing. Very interesting disease. He still takes supplements daily for it, but takes like 2 now instead of 15
 
I had lymes this past summer, my case wasnt really that bad, i went to the doc right away when i found the tick on me, I just had to take pills for like a month. I was really tired for about two weeks tho, lymes can take u out of it
 
13648371:pops. said:
I had lymes this past summer, my case wasnt really that bad, i went to the doc right away when i found the tick on me, I just had to take pills for like a month. I was really tired for about two weeks tho, lymes can take u out of it

you still HAVE it if you got it, it doesnt really work like that I dont think. If Im not mistaken it usually takes years for symptoms to come out
 
13648371:pops. said:
I had lymes this past summer, my case wasnt really that bad, i went to the doc right away when i found the tick on me, I just had to take pills for like a month. I was really tired for about two weeks tho, lymes can take u out of it

Usually a month of doxycycline will not kill of the Lyme bacteria. It will lie dormant in your tissue and cells, sprouting up again when it has a more favorable environment.

Lyme is a very odd disease and it is often misdiagnosed as other Diseases and Disorders. I’m kicking myself in the butt because I should have forced myself to go to the Lyme specialist back in 2014 when I had the severe symptoms.
 
I had/have it.

I got sick in June 2013. I woke up with 104.5 degree fever and the worst headache imaginable doctors tested for lyme and it came back negative, so no treatment was given. The fever continued for 10 days until I finally broke out with the rash. Not one bullseye, but about 20-30 of them all over my body. I was prescribed 4 weeks of Doxycycline and started to feel better, but not great.

The rash was gone but slowly the symptoms started to return. This is where things get bad. Not a single doctor would prescribe me more antibiotics because according to the CDC, NIH, and IDSA "Lyme disease can not exist in the body after 4 weeks of antibiotics." It took me over 20 phone calls, 5 different doctors, and two months to find a Doctor who would acknowledge the fact that I had a persistent infection. During this time I kept getting sicker. He started me on a heavier, longer dose of antibiotics and I slowly recovered. After 6 months of Antibiotics I was back to almost 100%

Its been almost two years now since I've been on antibiotics and I'm still doing great thankfully. There are too many who are not as lucky.

Lyme Disease is a menace and in my opinion the biggest health concern that this country currently is facing. This year around 1 million people will contract the disease, with a diagnostic test that in a recent study has been shown to be as low as 31% effective, with an inadequate treatment protocol, and doctors who are not trained to spot the disease.

Sorry for the wall of text, I lost a year of my life to this disease and know many people who have lost much more than that, and it's something that I am really passionate about. If you any questions feel free to ask away and if you have Lyme disease or think you have Lyme disease please find yourself a Lyme Literate Medical Doctor 'LLMD'. http://www.ilads.org
 
So I went to see Dr. Jones who was featured in The Under Our Skin documentary. He's an 87 year old LLMD, I'm going to start one round of a doxycycline oral derivative, I'm also being tested for te various tick borne coinfections. I'm wondering what others have done for detoxing and if herbal approaches are worth it?

Post here or message me!
 
13648674:CubanLinx said:
I have chlamydia so I think I'm kind of in the same boat as you.

chlamydia is an intracellular organism too, just like the bug that causes lyme disease.

lyme disease is tough to diagnose, as the symptoms imitate a lot of other diseases, and the tests for it are really inconsistent and can give a lot of false positives or negatives. the "bulls eye" rash isn't super common either.

best thing to do is catch it early if you can, especially if you live in the north east. after being outside in the woods or fields, check your body for ticks! they have to be embedded for 24 hours to transmit the disease, but still, if you got bit, go to a doctor.
 
13660035:Peter. said:
chlamydia is an intracellular organism too, just like the bug that causes lyme disease.

lyme disease is tough to diagnose, as the symptoms imitate a lot of other diseases, and the tests for it are really inconsistent and can give a lot of false positives or negatives. the "bulls eye" rash isn't super common either.

best thing to do is catch it early if you can, especially if you live in the north east. after being outside in the woods or fields, check your body for ticks! they have to be embedded for 24 hours to transmit the disease, but still, if you got bit, go to a doctor.

They don't need to be engorged for 24 hours to transmit, especially in regards to the numerous coinfections. The 24hr to 36hr Lyme transmission is a myth.
 
13660218:fuckmekevin said:
They don't need to be engorged for 24 hours to transmit, especially in regards to the numerous coinfections. The 24hr to 36hr Lyme transmission is a myth.

Not so much a myth, but based off shitty science done 30 years ago. As mentioned above ticks can transmit numerous diseases almost as soon as they latch on.

To go further, the one doxycycline treatment used to stop Lyme disease from developing from a recent tick bite is based on one old poorly done study, that only showed one doxycycline helped to stop a rash from developing. Nothing to do with the actual contraction of the disease.
 
13660229:AT-AT said:
Not so much a myth, but based off shitty science done 30 years ago. As mentioned above ticks can transmit numerous diseases almost as soon as they latch on.

To go further, the one doxycycline treatment used to stop Lyme disease from developing from a recent tick bite is based on one old poorly done study, that only showed one doxycycline helped to stop a rash from developing. Nothing to do with the actual contraction of the disease.

The most recent info I have suggests there is no reason to treat unless the tick has been attached for greater than 36 hours as it's unlikely to have transmitted the disease
 
I had lyme for 9+ months and it was hell. It got so bad I could not get out of bed for two hours every morning because of the pain in my knees. When ever I got home from school I would collapse on the couch for three hours because it made me so tired. Along with the pain and tiredness I had to take 8-12 pills a day. Doctors denied it for a while, but my mom knows a lot about it and is also a doctor and she kept arguing with them until they did the proper tests. A lot of insurance companies don't cover the meds for it and it is expensive for tests. There is three stages of lyme:

1. the "bulls eye" bite mark

2. Being tired, joint pain, ect.

3. Extreme head aches.

some people have lyme for up to 9 years, but you can die from it if I goes untreated. I went straight to the second stage, and never found any bite marks. I live in Mass so ticks are quite common. I did not take any extra treatment, and lived with the pain. It fucking sucked
 
13648423:fuckmekevin said:
Usually a month of doxycycline will not kill of the Lyme bacteria. It will lie dormant in your tissue and cells, sprouting up again when it has a more favorable environment.

Lyme is a very odd disease and it is often misdiagnosed as other Diseases and Disorders. I’m kicking myself in the butt because I should have forced myself to go to the Lyme specialist back in 2014 when I had the severe symptoms.

I tried taking doxycycline but it just killed my stomach and I id not eat anything and was always throwing up from it. Minocycline worked the best for me, but it still had a ton of draw backs. I still have a bottle of doxycycline in my house just incase of another bite.
 
13660549:Jihaddist_jibber said:
I tried taking doxycycline but it just killed my stomach and I id not eat anything and was always throwing up from it. Minocycline worked the best for me, but it still had a ton of draw backs. I still have a bottle of doxycycline in my house just incase of another bite.

So how did you eradicate the Lyme? I'm taking a dirivative of doxycycline which is suppose to get into the tissue better. Although, I'm unsure if I need a cyst buster drug to work synergistically with the antibiotic. I'm in stage three, I had the meningitis like symptoms and then, no symptoms, then relapsing fever and then all the neurological and nerve problems. I've had it for two years but wouldn't doubt if I had it since childhood.
 
topic:fuckmekevin said:
I was recently diagnosed with neurological and possibly latent lyme disease, I have been telling doctors for years that I have had lyme but they refused to do testing and tried to prescribe me anti-psycotics/anti-depressents. I went to numerous neurologists who thought I had POT syndrome and rheumatologists who diagnosed me with the mysterious fibromyalgia. I want to emphasize that if you’re living in the Northeast and you feel even slight symptoms which I have mentioned below it would be wise to get checked for Lyme. That’s if you doctor even allows it.

My 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. These symptoms hit me in waves; sometimes I would feel like any normal extroverted person and a few moments later I felt screwed up. I blamed these symptoms of Lyme on my heavy cannabis use but I guess that really isn’t the case anymore. Although, the THC possibly added anxiety to my already elevated fight or flight state but I still love weed.

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 and smoking dank sour diesel everyday. No more delay in cognitive thought, more sleep, less spaciness, just all-around a more happy me. I should make it clear that if you took a three week regime of Doxycycline for Lyme Disease it likely did not kill the Lyme Bacteria. The Bacteria will lie dormant in your body and could in the future drastically effect you.

When the Summer of 2015 rolled by I started experiencing many of the same aforesaid symptoms but much more noticeable and intrusive. Brain fog, zero spacial awareness, slight depression, anxious for no apparent reason, ADHD, intrusive thoughts, face twitching, joint pains, sporadic headaches, mental and physical fatigue that would manifest itself in episodes followed by a clear 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, overstimulation, elevated fight or flight, unable to wake. I legitimately thought I was going crazy but concealed these problems and often pushed them to the side. I thought most of these problems were embedded deep within my subconscious mind but in the end it was a manifestation of a physical problem.

If you do have Lyme try not to take Vitamin D. 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. Any immune-depressant like Mercury in Tuna should not be ingested, especially if you have Lyme. I KNOW many Newschooler’s have lyme disease 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? Has anyone tried any of these options?

And you've still yet to quit weed for even a few months? Smh .

May want to give that a shot too before contributing all of these symptoms to Lyme disease.
 
13660690:Pachankz said:
And you've still yet to quit weed for even a few months? Smh .

May want to give that a shot too before contributing all of these symptoms to Lyme disease.

I quit for the time being. No cannabis, no alcohol, no drugs.
 
^ i have no idea what keeps on going on with my posts. NS why you be bugging? Below is the continuation of my two previous posts.

"A literature review has determined that in animal models, transmission can occur in under 16 hours, and the minimum attachment time for transmission of infection has never been established.....Borrelia infection can occur in humans within a short time after tick attachment."

Ticks also carry more than just Lyme; Bartonella, Babesia, Powassan, Rocky Mountain spotted Fever, Erlichia, etc. I'm not to familiar with their transmission times, but to not take a tick bite seriously because you deem it to not be attached for more than 36 hours would be foolish IMO.
 
The couple that my brother is renting a room from in kelowna, the wife has lyme disease. I think she has a blog with her experiences with it and some tips. All I remember is that it seems super shitty, is hard to get diagnosed, and it's really hard to sleep
 
Did you guys all end up seeing the ticks that bit you or they bit and fell off? What sort of circumstances played out before hand, like we're you camping for a few days or? I don't think I've ever seen a black legged tick in my time in the trees. From what I understand though they're relatively small in comparison to wood ticks, so I'd imagine they're harder to see.

Personally I think I'm going almost full mole rat this MTB season, as weird as that is, solely for the purpose of spotting ticks. I'm so paranoid about Lyme after watching a family friend go through it that I want to be as vigilant as possible even if that means shaving like a euro model. I've definitely found ticks at home in the shower though on the classic "lift your sack and spread your cheeks" check and that drives me insane. Fuck ticks.
 
13660951:NinetyFour said:
Did you guys all end up seeing the ticks that bit you or they bit and fell off? What sort of circumstances played out before hand, like we're you camping for a few days or? I don't think I've ever seen a black legged tick in my time in the trees. From what I understand though they're relatively small in comparison to wood ticks, so I'd imagine they're harder to see.

Personally I think I'm going almost full mole rat this MTB season, as weird as that is, solely for the purpose of spotting ticks. I'm so paranoid about Lyme after watching a family friend go through it that I want to be as vigilant as possible even if that means shaving like a euro model. I've definitely found ticks at home in the shower though on the classic "lift your sack and spread your cheeks" check and that drives me insane. Fuck ticks.

I either got it doing yard work or hiking, not sure. Never saw the tick. It got me in my pelvic area. The nymph stage deer tick is the most contagious and it is the size of a poppy seed, most likely the reason that most people who contract Lyme have no remembrance of a tick.

From april-October I keep a clothes barrier, wearing spanks, tucking in my shirt and keeping my sleeves tight when doing yard work or when I'm hiking. My clothes are also treated with permethrin. I'm paranoid and won't even think about walking through brush or tall grass.
 
I live in mid nh/vt, went for a walk 2 weeks ago lookin for deer sheds, 25 mins in I felt one crawlin on my wrist plucked the little fucker off an cut him in half. Then I was curious if there were some on my pants which were black, no joke started pulling them off and stopped counting after 25. That was the end of that hike, right back to the house.This is a very very bad year again with the lack of snow.
 
Had a lyme scare when I was 9 years old. One day I woke up for school and found a tick halfway through my leg. Thankfully I didn't get Lyme disease after finding out through blood tests.
 
Just wanted to give people an Update.

So I was tested for other tick-borne infections. Not only do I have Lyme which I probably got as a child, but I also have Babesia Ducani, a malaria like infection that I most likely got in California on my road trip and Bartonella, which is causing all of my neurological problems. Bart is easy to treat, Babesa is harder to kill than Lyme.

Really sucks. I wouldn't doubt that a lot of other people suffering from depression and anxiety have tick-borne diseases without knowing.
 
I want to ask if anyone knows ways to at least beat the fatigue associated with Lyme and treatment. I'm getting worse physically and my joints are arthritic and I have bouts of rage and anger, which I have never experienced before. Like I just don't want to do anything and I had to drop out of school and I went from working 55 hours a week last fall and summer to quitting because I can't even drive anymore. I use to be full of energy and now I'm exhausted.

I'm asking if anyone else has had chronic Lyme/persisting Lyme or has had friends with it and how they treated it.
 
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