Aa
Here's my experience. Can you advise?
In 2007, I may or may not have had a tick bite. I do remember feeling something on my inner thigh in the shower, but could not see without glasses, and never considered a tick. Then I had serious joint pain and stiffness the same year when my son was a baby. I had a hard time walking in the morning because my ankles were stiff and my spine would jar in pain when I took a misstep. A few years later, while the joint pain persisted on and off, I began to experience sudden, sharp pains in my neck or thyroid, then a burning sensation in my nose when I coughed, deep skin itch, then heart palpitations and chest pain. Also began to experience loss of words. I felt like I wasn't as articulate as I used to be. All symptoms would last a few weeks and then go away.
When I was 6 months pregnant, I found a tick in my ankle. The head broke when I tried to pull it. It was a nymph. But not engorged. I don't think it was in there long. I was not treated.
In January of 2013, when my daughter was two months old, I got braces put on and experienced a slew of symptoms: sharp head pains, extreme fatigue in the morning when I woke up, feet pain at night and upon walking in the morning, more stiffness, imbalance, extreme eye and temple tension and other. It all gradually subsided, but three months later when a thicker gauge wire was put on, I had flu like symptoms, especially in my chest (this is a symptom that I have experienced often over the past few years), scalp pain and more imbalance. Also I noticed that my face had lost all the fat. Hypoglycemia, nausea, cheekbones were sticking way out and my temples were sunken. Eventually, I noticed fat loss in my feet and hands, as well. I also noticed that when I used my smart phone or sat next to my computer, I would have a tingling sensation. This lasted a few days. Also would often get a tingling sensation down my spine and in my shoulder blade, when I stood at the sink doing dishes.
At the suggestion of my NP, I had the braces removed and subsequently, through my own research, I learned about metal toxicity. I also learned about amalgam fillings and was horrified, as I had ten of them and the braces were making the toxicity worse. I had a serious panic attack when I learned about the dangers of metals, AND that's when the rest of the symptoms set in....
muscle twitching, burning sensations, wet skin sensations, crawlees under my skin, vibrations, sound sensitivity, smell sensitivity, touch sensitivity, muscle spasms, muscle soreness, muscle weakness, numbness and tingling in fingers and toes and sometimes heels and hands and feet. All symptoms would be very brief, sporadic, and travel. Burning in my face, tingling/numbness in my face, ringing in the ears. Head pulling sensation. Food sensitivity.
Then I had fillings removed in phase one of amalgam removal. Removing the braces made me feel better instantly with the eye/temple strain, insomnia, fatigue, and visual clarity. So, I hoped the amalgam removal would improve things even more.
Here is my question. On this journey, the question has become Mercury/metal poisoning? Leaky Gut? Candida? Lyme or Autoimmune disease. Two MD's attributed the symptoms to anxiety/somatization disorder. Vitamin D was low (22). No other significant lab findings.
The nutritionist suggested leaky gut and is on board with the candida and lyme.
I went on a gluten free, sugar free, dairy free, corn free diet. Then went back to a normal diet, and that seems to be when a lot of the muscle weakness and food sensitivities set in. They came after the diet. Now, I bouce back and forth between gluten free and not, mainly because I am scared about how much weight I have lost and can feel my bones. And the weak and sore muscles. I can't tell if that is from the diet or disease? I can't tell if I am experiencing muscle wasting, but the facial fat is mostly still gone. I look different, I feel different, I'm scared all the time, I have three young children, and I don't know what is causing my problems. It seems like my whole system is screwed up now, neurologically, metabolically, etc.
However, the skin crawlees, burning, cold, tingling, and wet sensations have gone. The hypersensory stimulation also seems to be gone.
Any insight/experience would be greatly appreciated! I have been reading behind the scenes for months.
When I was 6 months pregnant, I found a tick in my ankle. The head broke when I tried to pull it. It was a nymph. But not engorged. I don't think it was in there long. I was not treated.
In January of 2013, when my daughter was two months old, I got braces put on and experienced a slew of symptoms: sharp head pains, extreme fatigue in the morning when I woke up, feet pain at night and upon walking in the morning, more stiffness, imbalance, extreme eye and temple tension and other. It all gradually subsided, but three months later when a thicker gauge wire was put on, I had flu like symptoms, especially in my chest (this is a symptom that I have experienced often over the past few years), scalp pain and more imbalance. Also I noticed that my face had lost all the fat. Hypoglycemia, nausea, cheekbones were sticking way out and my temples were sunken. Eventually, I noticed fat loss in my feet and hands, as well. I also noticed that when I used my smart phone or sat next to my computer, I would have a tingling sensation. This lasted a few days. Also would often get a tingling sensation down my spine and in my shoulder blade, when I stood at the sink doing dishes.
At the suggestion of my NP, I had the braces removed and subsequently, through my own research, I learned about metal toxicity. I also learned about amalgam fillings and was horrified, as I had ten of them and the braces were making the toxicity worse. I had a serious panic attack when I learned about the dangers of metals, AND that's when the rest of the symptoms set in....
muscle twitching, burning sensations, wet skin sensations, crawlees under my skin, vibrations, sound sensitivity, smell sensitivity, touch sensitivity, muscle spasms, muscle soreness, muscle weakness, numbness and tingling in fingers and toes and sometimes heels and hands and feet. All symptoms would be very brief, sporadic, and travel. Burning in my face, tingling/numbness in my face, ringing in the ears. Head pulling sensation. Food sensitivity.
Then I had fillings removed in phase one of amalgam removal. Removing the braces made me feel better instantly with the eye/temple strain, insomnia, fatigue, and visual clarity. So, I hoped the amalgam removal would improve things even more.
Here is my question. On this journey, the question has become Mercury/metal poisoning? Leaky Gut? Candida? Lyme or Autoimmune disease. Two MD's attributed the symptoms to anxiety/somatization disorder. Vitamin D was low (22). No other significant lab findings.
The nutritionist suggested leaky gut and is on board with the candida and lyme.
I went on a gluten free, sugar free, dairy free, corn free diet. Then went back to a normal diet, and that seems to be when a lot of the muscle weakness and food sensitivities set in. They came after the diet. Now, I bouce back and forth between gluten free and not, mainly because I am scared about how much weight I have lost and can feel my bones. And the weak and sore muscles. I can't tell if that is from the diet or disease? I can't tell if I am experiencing muscle wasting, but the facial fat is mostly still gone. I look different, I feel different, I'm scared all the time, I have three young children, and I don't know what is causing my problems. It seems like my whole system is screwed up now, neurologically, metabolically, etc.
However, the skin crawlees, burning, cold, tingling, and wet sensations have gone. The hypersensory stimulation also seems to be gone.
Any insight/experience would be greatly appreciated! I have been reading behind the scenes for months.
Also, I am not anti-antibiotic. But, I am very pro herbal and natural remedy. Either way, if something has been found to be very effective. I will try it.
I read about the simple diet in Dr. Burascano's Lyme Treatment paper, suggested by mojogal. He wrote that it is imperative that the patient diet must be high in fiber, low in carbohydrate and fat and no simple carbohydrates. Also no caffeine.
And of course, if there is yeast problem, no sugars and varbs whatsoever. I am having my Igenex blood draw tomorrow, hopefully. I went to a lab last week, but they would not draw. They suggested I try the hospital lab.
I will update you all when the results come in.
Also, I touched base with two local support groups.
And of course, if there is yeast problem, no sugars and varbs whatsoever. I am having my Igenex blood draw tomorrow, hopefully. I went to a lab last week, but they would not draw. They suggested I try the hospital lab.
I will update you all when the results come in.
Also, I touched base with two local support groups.
Not to panic. (Remember that anxiety and difficulty making decisions are actual symptoms of Lyme, not character flaws.) Just one step at a time.
Getting to an LLMD is an important step so you and your kids can all be checked out. Just remember that even kids can test false negative if they aren't producing enough antibodies to produce a "positive" result. Transfer of Lyme to a baby isn't automatic, though, so you can't assume one way or the other. Just don't let anybody dismiss developmental delays as "normal" or common. Yes, ADHD is common, but an underlying Lyme infection is far more insidious than ADHD.
Mainstream doctors are very ignorant about this because the IDSA and the CDC pretend there's no congenital Lyme and that everyone with Lyme will test "positive" on CDC testing. Pretending something doesn't exist doesn't mean it doesn't exist, though. That's why you have to get to an LLMD who will do a fair exam. The good ones are honest about saying that not everyone they see has Lyme. Some people who go see LLMDs really do have one or more of the many illnesses that Lyme mimics.
Our best 'expert' at congenital Lyme hasn't been on the forum in a while, but I remember she described her son's behavioral issues starting with inconsolable screaming before he was a year old. By the time he was diagnosed a couple years later, she said he was on the verge of an autism diagnosis. At the time she wrote that, he was excelling in first or second grade after being on long term antibiotics. Kids are really resilient. They just need antibiotics to deal with the infection (the ones who actually have Lyme, that is).
Time matters. The longer the infection is established, the harder it is to treat. The vast majority of people who get long term treatment get better, but it can be frustratingly slow. I had my Lyme, Bartonella, & Babesia for 6 years before I was diagnosed. But I'd had steroids, which make it more entrenched and harder to treat. I was very ill when I was diagnosed.
I was also nearly a year into treatment before we figured out the Babesia, so I'm sure that slowed my whole process down. We also didn't realize I still had Bartonella after we stopped treating it over a year ago.
I am approaching my 2 year mark now. A month ago, I was as sick as I was a year ago. But yesterday, I had a relatively good day. My new batch of big-guns medicines are definitely helping and I'm hopeful that I will feel better during the holidays this year than I did last year.
I believe that many people with disseminated Lyme are cured. But there are other stories of people who got well, only to relapse years later, including some folks here. Because the "official" dogma about Lyme is that Chronic Lyme Disease "does not exist," there aren't any studies going on to see what percentage of people relapse and what kind of treatment they had.
I have finally accepted I may never be cured, but I am still determined to get well. I may have to be aware of possible relapses in the future, but quality of life is what matters, not whether I have a dormant, treatable infection or not. I'll always taken the aggressive approach to treatment and will continue to do so. I do not plan to stop treatment until my doctor says so in order to have the best chance of defeating it.
If you just have Lyme, your chances are better. It seems to me that the people who are hardest to treat are the ones with multiple coinfections. If you have permanent nerve or arthritic damage, antibiotics will not cure that. That's why it's important to find out if you have Lyme or not as soon as you can.
Just remember... IGeneX testing and an LLMD.
Getting to an LLMD is an important step so you and your kids can all be checked out. Just remember that even kids can test false negative if they aren't producing enough antibodies to produce a "positive" result. Transfer of Lyme to a baby isn't automatic, though, so you can't assume one way or the other. Just don't let anybody dismiss developmental delays as "normal" or common. Yes, ADHD is common, but an underlying Lyme infection is far more insidious than ADHD.
Mainstream doctors are very ignorant about this because the IDSA and the CDC pretend there's no congenital Lyme and that everyone with Lyme will test "positive" on CDC testing. Pretending something doesn't exist doesn't mean it doesn't exist, though. That's why you have to get to an LLMD who will do a fair exam. The good ones are honest about saying that not everyone they see has Lyme. Some people who go see LLMDs really do have one or more of the many illnesses that Lyme mimics.
Our best 'expert' at congenital Lyme hasn't been on the forum in a while, but I remember she described her son's behavioral issues starting with inconsolable screaming before he was a year old. By the time he was diagnosed a couple years later, she said he was on the verge of an autism diagnosis. At the time she wrote that, he was excelling in first or second grade after being on long term antibiotics. Kids are really resilient. They just need antibiotics to deal with the infection (the ones who actually have Lyme, that is).
Time matters. The longer the infection is established, the harder it is to treat. The vast majority of people who get long term treatment get better, but it can be frustratingly slow. I had my Lyme, Bartonella, & Babesia for 6 years before I was diagnosed. But I'd had steroids, which make it more entrenched and harder to treat. I was very ill when I was diagnosed.
I was also nearly a year into treatment before we figured out the Babesia, so I'm sure that slowed my whole process down. We also didn't realize I still had Bartonella after we stopped treating it over a year ago.
I am approaching my 2 year mark now. A month ago, I was as sick as I was a year ago. But yesterday, I had a relatively good day. My new batch of big-guns medicines are definitely helping and I'm hopeful that I will feel better during the holidays this year than I did last year.
I believe that many people with disseminated Lyme are cured. But there are other stories of people who got well, only to relapse years later, including some folks here. Because the "official" dogma about Lyme is that Chronic Lyme Disease "does not exist," there aren't any studies going on to see what percentage of people relapse and what kind of treatment they had.
I have finally accepted I may never be cured, but I am still determined to get well. I may have to be aware of possible relapses in the future, but quality of life is what matters, not whether I have a dormant, treatable infection or not. I'll always taken the aggressive approach to treatment and will continue to do so. I do not plan to stop treatment until my doctor says so in order to have the best chance of defeating it.
If you just have Lyme, your chances are better. It seems to me that the people who are hardest to treat are the ones with multiple coinfections. If you have permanent nerve or arthritic damage, antibiotics will not cure that. That's why it's important to find out if you have Lyme or not as soon as you can.
Just remember... IGeneX testing and an LLMD.
rico said:
"You have waaayyyy too much going on to just be food issues. "
I agree. You MAY be gluten sensitive or have other food 'issues' but going to a nutrionist won't help with Lyme, except as a peripheral measure. OR if s/he is willing to rx antibiotics for as long as it takes for most of your symptoms are gone---- then for 3 months more (per ILADS guidelines)
dani asked:
" Are there herbal/holistic treatments I can start in the meantime? "
Yes a person is always able to start those any time. Will they do any good?
Other than perhaps help with some symptoms that aren't related to Lyme and co-infections----- maybe not.
And they CAN impede vital treatments with antibiotics if they interact with them.
Or if a person takes them INSTEAD of antibiotics for Lyme. (That's the worst a person can do if trying to eliminate Lyme disease symptoms.)
And/or if those herbal treatments are of the highest quality and you've researched if they are. Do not depend on a person/site that sells them to give you that information!
dani asked:
"Do I need to adhere strictly to a simple diet to fight this?"
Who gave you the idea that a 'simple diet' would fight Lyme disease? I would suggest that if you were given the idea that a 'simple diet' would help you with Lyme (except as good advice for all people at all times) then you should question that person.
Are you adverse to taking antibiotics? I'm getting that impression. Most of here have been on antibiotics for months, months, years and still alive and as well as we can be.
Remission or cure? Who cares? If they feel the same----pfffft! LOL
"You have waaayyyy too much going on to just be food issues. "
I agree. You MAY be gluten sensitive or have other food 'issues' but going to a nutrionist won't help with Lyme, except as a peripheral measure. OR if s/he is willing to rx antibiotics for as long as it takes for most of your symptoms are gone---- then for 3 months more (per ILADS guidelines)
dani asked:
" Are there herbal/holistic treatments I can start in the meantime? "
Yes a person is always able to start those any time. Will they do any good?
Other than perhaps help with some symptoms that aren't related to Lyme and co-infections----- maybe not.
And they CAN impede vital treatments with antibiotics if they interact with them.
Or if a person takes them INSTEAD of antibiotics for Lyme. (That's the worst a person can do if trying to eliminate Lyme disease symptoms.)
And/or if those herbal treatments are of the highest quality and you've researched if they are. Do not depend on a person/site that sells them to give you that information!
dani asked:
"Do I need to adhere strictly to a simple diet to fight this?"
Who gave you the idea that a 'simple diet' would fight Lyme disease? I would suggest that if you were given the idea that a 'simple diet' would help you with Lyme (except as good advice for all people at all times) then you should question that person.
Are you adverse to taking antibiotics? I'm getting that impression. Most of here have been on antibiotics for months, months, years and still alive and as well as we can be.
Remission or cure? Who cares? If they feel the same----pfffft! LOL
Do I need to adhere strictly to a simple diet to fight this? What is the general consensus with rehabilitated Lyme folks? Can you ever claim to be cured? Or only in remission? I need some glimmers of hope, please.
This is a nightmare!! Please tell me, are we fighting a losing battle? I suspected lyme as early as a few months ago. I have been seeing a nutritionist since late June. All the problems started about February, so it's been almost a year. Are there herbal/holistic treatments I can start in the meantime?
How will they treat a baby? What if my whole family is infected? I have three young children and breast fed all of them!
This is horrible!!
How will they treat a baby? What if my whole family is infected? I have three young children and breast fed all of them!
This is horrible!!
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