My story

Hi everyone,

I just wanted to share a bit of my story and what has been really helping me so far in healing my Lyme.

It started for me last May 2017. I had very severe throat pain, I was extremely fatigued, had low energy and would get out of breath easily (gong up a flight of stairs tired me and I had ran a half marathon 5 months prior and was training for a triathlon!). Growing up I always had recurring strep throat so I went to the doctor, expecting it to be just another strep infection. I went through two rounds of penicillin and a round of clindamycin and it seemed to help at first but then made things a lot worse. Almost every doctor I saw told me it was either a virus, or in my emotions.

Over the summer my tonsils continued to be swollen and extremely painful. I had suicidal thoughts daily because of the pain, as well as regular trips to the emergency room to beg them to take my tonsils out but they wouldn’t move my surgery date booked in September. Needless to say, I started developing extreme anxiety and depression on top of the other issues. I had heart palpitations, and panick attacks as well as night sweats (at the time I thought my night sweats was just because of summer, but they continued into the fall and winter months).

My doctors blamed all of these issues on my tonsils, emotions and the extreme pain I was having. However, I didn’t accept this diagnosis and kept looking for answers. One thing I noticed was that my platelets were low and I had a high MPV all through the summer (which my doctor never even mentioned to me!). Given this was the only off result in my blood tests I started to look for more answers. We did more testing for blood cancers which came up at a dead end based on blood tests. I was specifically concerned about lymphoma because I had been having lymph nodes swollen all over my body all summer but an ultrasound report said nothing to worry about.

Given that after my tonsils were removed all my problems continued, my next mission was looking into Lyme disease since a lot of my symptoms fit, even though I don’t remember a tick bite. In fact, I actually pulled a tick off my friend while listening to shania Twain and chatting about Lyme disease. I think this was a sign from angels, because after that moment I dug deeper into looking into Lyme. I previously had the Elisa test come back negative, but then found out that this test is often not reliable.

I sought out a naturopath In my region who specialized in Lyme and sent my blood to Igenex. Meanwhile, based on my symptoms, she gave me grapefruit seed extract by nutribiotics while we waited for the test results. When I started taking the nutribiotics I felt my yeast issues worsen (another issue I was battling all summer... I had a throat fungal infection and Brian fog as well as yeast infections).I stopped taking the grapefruit seed extract and then everything got worse. I started having shooting pains, back pain, and my forehead started to have tingling sensations. I thought hmmm.. this must be doing something. So I started on them slower and worked my dose up. I think at this point I knew it was Lyme, and the test results confirmed it.

I then started digging into a bunch of research and did a ton of reading...and continue to do a lot. I love research! Anyway, I first started on Bhuners protocol in December which seemed to help a bit for. A while but then I started getting extreme heart pain. The heart pain was soooo bad I went through a plethora of more tests and everything, surprise surprise, came back negative again. My anxiety heightened because I read so MAny scary stories about Lyme and heart issues.

Fast forward to where I am today.. I am doing a lot better! I am definitely making slow progress. But I would have to say that the medical medium books is what have actually helped me the most. After reading them, everything started to make sense to me.

In his books, Anthony Williams explains how Lyme is not actually caused by Borrelia, but rather the EBV. At first I was sceptical because he doesn’t have any medical credentials and gets his information from a spirit. But the more I thought about my past and his explanations through the book, the more and more things aligned. He mentions that EBV causes thyroid issues, cytysis, UTIs, and that strep is the number one co-factor (he also says strep causes utis). He also mentions that EBV can be triggered into its final stage (Lyme disease) from hormonal changes, stress, among many other reasons (he does list a tick bite as well, but because of the initial infection from the bite).

I started to think more about my past. I had recurring utis and strep since I was in highschool. I did test positive for EBV antibodies and all the doctors I saw when I first started having issues thought it was Mono. Even more, I started going downhill after I took 3 different birth control pills in the span of a months time (I was trying to find one that worked for me). Every time I tried a birth control pill in the past my hair started to fall out on an extreme level and I would have cytisis issues. I thought hmm.. this lines up exactly with what Anthony says in his books! No wonder I never really found a birth control pill that worked for me,.. apparently EBV feeds off of hormones!!! And antibiotics... which also made sense why I got so much worse after taking them.

I started reading more on Internet forums and have found in mono forums a lot of people complain about the same issues we have with Lyme. One post I read explained Bartonella symptoms perfectly (started with mono than months later had extreme headaches, shin pain, foot sole pain). There seemed to be proof of what Anthony explains in his books in my life, as well as in forums on the internet. Moreover, people who were following his advice have success stories all over the internet. I even discovered that cats claw is one of the supplements he recommends for EBV... which could explain why Bhurner protocol does have so much success!

I started on his protocol right away.i noticed small differences... but it wasn’t until I started adding lysine that things started to improve. In fact, I happened to stumble upon a supplement for mono that was given to me last summer and I thought I would try it out to see if it helped out. And boy am I ever glad that I did!

It’s called super immune by quantum health. You can get it for $15 on iherb. It has lysine, olive leaf, and astragalus. I have even read posts on this forum about olive leaf helping people with Lyme. I have been taking this for about two weeks now (3 caps 3 x daily) and have notice some great improvements in my heart pain and headaches, and just overal sense of being.I will continue to update and share my progress with it. I’m not nearly healed but I definitely think that the grape fruit seed extract (which also kills viruses), the super immune, and Anthony William have all played a MAJOR role in the amazing progress I have made so far. I do take quite a few other supplements (vitamin c, cats claw, andrographis, jap knotweed, monolaurin, essiac tea, etc.), but it’s definitley the GSE and super immune that has helped the most.

I really hope this story helps anyone who is willing to read through it all!

Blessings,
Brin

Post Edited (Brinb) : 2/4/2018 1:05:03 PM (GMT-7)

Erin,

I'm new to the forum. I got chills when I read about your saga with painful sore throat and heart pains. I have many of the exact symptoms which I'll describe here, if it helps anyone.

I thought I had mono last year. I got strep C when I was younger (very rare, only 5% of strep is strep C and it's tough to get diagnosed) so I kept asking for strep C testing two winters ago after many, many weeks of painful sore throat and swollen glands and bad headaches. 12 weeks of painful sore throats and extreme tiredness...I was miserable. I went to my primary care dr. twice during this time, and I was refused antibiotics (doctors don't seem to want to prescribe them around here). I asked for mono testing and that was also refused. They told me it was a cold virus and that I was just an older mom and that I don't recover as fast as younger people (gee, thanks for the insult!). Then after the 12 weeks, I got throat improvement after taking antibiotics for a bad ear infection. The summer went ok, and then the brain fog started. I was saying the wrong word and forgetting words on a daily basis, and still am. I kept blaming it on being an older mom with a toddler and not getting enough sleep. Then the sore throat and ear infections started back up this fall and winter. I have had strange arthritis and tingling in my left toe on random days for almost 3 years and yes, a shin pain occasionally. I also have had arm and finger tingling at random times and a sudden knee pain recently.

I went to the cardiologist three times in the last two years for recurring chest pain and palpitations (mostly at night). All kinds of tests and nothing came up. The chest pain was as frightening to me as the brain fog. It was like a burning pain and sometimes sharper. I thought it was from the gym, gluten, etc. but it would happen in the middle of the night and it was not making sense. I have a heart condition that is called SVT (a mild form of a-fib) which is why all this time I thought my heart issues were just SVT related.

I've had night sweats for years. Oddly, my TSH thyroid was elevated last year to a 6.0 and I think it's supposed to be under a 3.0. My dr. prescribed a thyroid medication for hypothyroidism (I have always been cold when others are warm...I was no longer cold on the medication but it made me have immediate chest pain so I had to stop). My TSH levels are somehow normal now without any medication so I'm not sure what that was about.

As far as your issues with birth control and yeast infections, I have also had lots of yeast infections. I can't take birth control any longer for reasons too long to explain here. I have also had two unexplained miscarriages in the last 3 years. After being able to get pregnant very easily for each of my three pregnancies, I've been infertile for the last two+ years. I'm curious if anyone else out there has had fertility issues related to lyme.

I started wondering recently if I have early dementia. I'm not sure if anyone is able to comment on describing their brain fog, but for me it's not just a matter of leaving my glasses on my head or something silly like leaving a salt shaker in the refrigerator; I literally forget names of people and objects, like I have to think for more than 5-10 seconds sometimes for simple words. As one example, last year I was in the grocery store looking at a cantaloupe for about 3 minutes until the word came to me. It is this panicky feeling I get when I forget words and I get very depressed about it when it happens. It is really frightening me lately. I am in my early 40's and shouldn't have this much brain fog. I have had problems at work in the past due to memory issues (that seem minor now in comparison) and I'm wondering if that was from lyme now.

I garden regularly and was bitten by a tick two years ago but I took the Doxycycline for the bite immediately. However, due to my years of symptoms that seem to get worse over time, I think I've been struggling with lyme or a related infection for years from a prior bite.

Over the last two years I would get headaches that were bad and I thought they were migraines but I would get them for days at a time, and they would disappear for many weeks at a time, and didn't seem to have the same triggers as migraines do.

Recently, I started taking wild oregano oil for my sore throat and that really helped. The heart palpitations went away, as did the chest pain, after taking wild oregano oil. I went to another cardiologist recently and asked him to prescribe a Western blot and it found evidence of Lyme. I'm going from there.

I just wanted to say that reading your story and others like it is of course upsetting, but also a huge relief, because I see that others have had the same issues.

I am so glad you are doing better and I'm going to look into what you took. I take lysine already but I'll be taking more of it. I'll read the book you mentioned, too. I'm reading a couple of books by Richard Horowitz. Thanks so much for sharing your story and what is working for you.

Hi Brinb,
I'm really sorry for all that you went through, but I do have to say that Lyme disease is NOT caused by EBV. Lyme disease IS caused by Borrelia 100% of the time, even if tests come back negative for it. That's the nature of the bacteria, not that it's not what causes the infections.

There is literally hundreds of articles proving this, so it doesn't matter who says it's not caused by Borrelia, because opinions just don't change facts. I wish they did!! I'd definitely have the opinion that I don't have these infections and I could just treat the EBV (which I do) and be all healed - but that's just not the case.

Many of these infections can cause many of the same symptoms, so the fact that you felt better on Lysine is not surprising, because lowering the symptoms (or even eliminating a few) will be helpful and will be felt - which is why I stay on my Lysine as well. But, I've been taking high dose Lysine for years now, and that alone is not enough to help us heal completely.

I wish you continued luck in healing and hope we can add your 'success story' to our little collection sooner than later!!!

It seems you made some good decisions and took your health into your own hands.

Since I have been using Olive Leaf and Lysine I have had major improvement in a cyst that used to flair and was painful when it did. I suspect it was closely tied to a virus, but doctors didnt offer to do anything after diagnosing the epididymal cyst nor indicate that it was related to any virus.

The thyroid hormones definitely get out of wack with this condition for which Nascent Iodine helped immensely. I think my pains were more spleen than heart but it has been asymptomatic for a good while.

I threw a lot of meds and supplements at this, allopathic and naturals of which some of each helped greatly. Now I focus on nutrition and replenishing beneficial bacteria.

Thanks for sharing your story and perspective.

GardenGirl12 said...
I started wondering recently if I have early dementia. I'm not sure if anyone is able to comment on describing their brain fog, but for me it's not just a matter of leaving my glasses on my head or something silly like leaving a salt shaker in the refrigerator; I literally forget names of people and objects, like I have to think for more than 5-10 seconds sometimes for simple words.

The salt shaker... I call that drunken autopilot. Ditto on name/word recall; it started in my 20s. My LLMD joked that I have the earliest case of early onset Alzheimers ever seen (he's making fun of the medical establishment that has no explanation for these symptoms in young people).

Most people in the US have EBV - whether they have had symptoms or not. In some it's a "silent" infection, it's not causing any symptoms because the levels of virus are not high enough, but they will test positive. I believe the actually percentage is around 98% of the American Public has EBV.

So, the fact that many have EBV before Lyme does not make it a causal factor - other than the possibility of having lowered the immune system making it easier for the Lyme bacteria and others to 'take hold' in the body.

Gardengirl I've been down to stage 6 of dementia at one point in time, so I do understand!! And it is scary!! If you wish to talk about this, you can start a new thread, so we don't steal this one. Chart I went by to determine what stage I was in: /www.dementiacarecentral.com/aboutdementia/facts/stages/

As far as the Medical Medium, I'm only trying to show you what is known about these infections. If you gained some good information from the Medical Medium's book(s?), then I applaud you!! But, I do know that he got that wrong.

It's not the spirochetes that cause the bulls eye rash, which is why not everyone has one. In my 45 years of living with this disease, I have yet to have one single EM rash. This has nothing to do with my having these infections though. At this point, it's believed that the rash is created by an allergic reaction to the tick's saliva, which contains many chemicals, including, but not limited to, blood thinning compounds (so the blood doesn't clot while they are feeding), and a 'numbing agent' so we don't feel when they attach so easily, as well as other compounds. So it actually makes sense that since it's an allergic reaction type of thing, as to why not everyone that has Lyme actually sees a Bulls eye rash. It's not connected to the Borrelia bacteria at all, but it's transport (the tick/mosquito/or whatever).

I am in strong support that EBV needs to be treated! But it is not necessarily tied to having Lyme. We have had a handful of members have Lyme without ever testing positive for EBV.

Thanks for the info ...bee venom is anti viral too btw ...welcome to the forum