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.
I forgot to mention... cilantro and parsley are excellent metal detoxers. You don't have to buy costly extracts, just eat them.
You have waaayyyy too much going on to just be food issues. You sound just like a case of late stage Lyme Disease. You could even have been reinfected with the tick whose head got left behind in your skin, which pretty much guarantees that any pathogens that tick was carrying got transferred to you. Getting infected again often makes someone with a chronic Lyme infection even sicker. Get additional infections, like Babesia, Bartonella, Anaplasma, etc. along with Lyme or even from a subsequent tick bite also makes a Lyme patient sicker.
Pregnancy and child birth are also well known to cause a flare up of an underlying Lyme infection.
I strongly encourage you to get to a LLMD as soon as possible. Please don't wait a few more months to try out a different diet. Leaky gut and food sensitivities are issues that can be secondary problems of Lyme.
Please also take your youngest child with you to an LLMD. A woman with a Lyme infection often transfers it to her baby in utero. Children born with Lyme often have behavioral problems, ADHD, and developmental delays. Sometimes they don't show up for many months or more after birth. You need to get your child tested and examined as well. If the cost is a problem, the ask family for help. It's that important. The vast majority of doctors are oblivious to this problem of congenital Lyme. Many have been taught it isn't possible in spite of the evidence that it is.
Lyme treating physicians in New York are at constant threat of investigation and harrassment by the medical board in the state. The official policy is not to investigate a doctor solely for using long term antibiotics for Lyme, but they'll use any excuse they can to go after one who does. It can't be easy. I can't imagine what their liability premiums cost.
There are other places where you can find a doctor who is a bit cheaper, but then of course you've got travel costs to get there. Just find the one you feel is right for you. Try a local Lyme support group, as there are sometimes local docs who take insurance who will at least get you tested and examined properly without the huge consultation cost. Sometimes you can even get a clinical diagnosis and start treatment from a "mainstream" doctor before you need to switch to a LLMD for longer term treatment.
Keep us posted! The process of figuring out a late stage Lyme infection is not simple or easy.
Pregnancy and child birth are also well known to cause a flare up of an underlying Lyme infection.
I strongly encourage you to get to a LLMD as soon as possible. Please don't wait a few more months to try out a different diet. Leaky gut and food sensitivities are issues that can be secondary problems of Lyme.
Please also take your youngest child with you to an LLMD. A woman with a Lyme infection often transfers it to her baby in utero. Children born with Lyme often have behavioral problems, ADHD, and developmental delays. Sometimes they don't show up for many months or more after birth. You need to get your child tested and examined as well. If the cost is a problem, the ask family for help. It's that important. The vast majority of doctors are oblivious to this problem of congenital Lyme. Many have been taught it isn't possible in spite of the evidence that it is.
Lyme treating physicians in New York are at constant threat of investigation and harrassment by the medical board in the state. The official policy is not to investigate a doctor solely for using long term antibiotics for Lyme, but they'll use any excuse they can to go after one who does. It can't be easy. I can't imagine what their liability premiums cost.
There are other places where you can find a doctor who is a bit cheaper, but then of course you've got travel costs to get there. Just find the one you feel is right for you. Try a local Lyme support group, as there are sometimes local docs who take insurance who will at least get you tested and examined properly without the huge consultation cost. Sometimes you can even get a clinical diagnosis and start treatment from a "mainstream" doctor before you need to switch to a LLMD for longer term treatment.
Keep us posted! The process of figuring out a late stage Lyme infection is not simple or easy.
Some thoughts about what you are going through:
------------------------------------------------------------------------------
1---- Possible gluten issues
About the weight loss and what is causing it, if you are avoiding gluten (which is in wheat, barley and rye and some other things) due to digestive problems, you can still eat the following, according to a website called GlutenFreeLiving:
--Foods made from these grains (and grain-like plants): Corn in all forms (corn flour, corn meal, grits,etc.). Rice in all forms (white, brown, basmati and enriched rice). Also amaranth, buckwheat (kasha), millet, quinoa, teff, sorghum and soy.
--The following ingredients:
----Annatto, glucose syrup, lecithin, maltodextrin (even when it is made from wheat), oat gum, plain spices, silicon dioxide, starch, food starch and vinegar (but malt vinegar might contain gluten).
----Citric, lactic and malic acids as well as sucrose, dextrose and lactose; and these baking products: arrowroot, cornstarch, guar and xanthan gums, tapioca four or starch, potato starch flour and potato starch, vanilla
----Milk, butter, margarine, cheese, plain yogurt and vegetable oils including canola
----Fresh, frozen and canned fruits and vegetables, including beans and peas
----Meat, seafood, eggs, nuts
----Distilled vinegar (but not malt vinegar)
----Mono and diglyceride fats
----Spices. If there is no ingredient list on the container, it contains only the pure spice noted on the label.
--------------------------------------------------------------------------------
2 ------ Possible yeast/fungal infection
Your symptoms of itching, yeast infections, and sugar craving could be related to a systemic fungal ('yeast') infection, separate from gluten sensitivity. When you stop eating food that is feeding the yeast in your body, the yeast die off can make you feel worse.
Once the yeast is treated and gone and your diet sorted out, the mind clears up, the aches and brain fog go away, and the cravings stop. It's not pleasant, but it was very worthwhile for me. I stayed on a simple diet for several months without sugars and grains that could feed the yeast, eating instead mostly 'greens and proteins'.
----------------------------------------------------------------------------------
3 -- Possible food allergies
You may also have food allergies that are undetected. A nutritionist may be able to help you put together a list of foods you can eat, and when to add to it a new food to see if it causes problems.
----------------------------------------------------------------------------------
Do check with your doc/nutritionist before setting a plan, but I would encourage you to give it another try. Once my yeast infection was dead and gone, I waited for quite a while but then began adding back fruit, and recently I have occasionally had lemon sherbet, but not often. The sugar cravings are gone. Hope you feel better soon too.
------------------------------------------------------------------------------
1---- Possible gluten issues
About the weight loss and what is causing it, if you are avoiding gluten (which is in wheat, barley and rye and some other things) due to digestive problems, you can still eat the following, according to a website called GlutenFreeLiving:
--Foods made from these grains (and grain-like plants): Corn in all forms (corn flour, corn meal, grits,etc.). Rice in all forms (white, brown, basmati and enriched rice). Also amaranth, buckwheat (kasha), millet, quinoa, teff, sorghum and soy.
--The following ingredients:
----Annatto, glucose syrup, lecithin, maltodextrin (even when it is made from wheat), oat gum, plain spices, silicon dioxide, starch, food starch and vinegar (but malt vinegar might contain gluten).
----Citric, lactic and malic acids as well as sucrose, dextrose and lactose; and these baking products: arrowroot, cornstarch, guar and xanthan gums, tapioca four or starch, potato starch flour and potato starch, vanilla
----Milk, butter, margarine, cheese, plain yogurt and vegetable oils including canola
----Fresh, frozen and canned fruits and vegetables, including beans and peas
----Meat, seafood, eggs, nuts
----Distilled vinegar (but not malt vinegar)
----Mono and diglyceride fats
----Spices. If there is no ingredient list on the container, it contains only the pure spice noted on the label.
--------------------------------------------------------------------------------
2 ------ Possible yeast/fungal infection
Your symptoms of itching, yeast infections, and sugar craving could be related to a systemic fungal ('yeast') infection, separate from gluten sensitivity. When you stop eating food that is feeding the yeast in your body, the yeast die off can make you feel worse.
Once the yeast is treated and gone and your diet sorted out, the mind clears up, the aches and brain fog go away, and the cravings stop. It's not pleasant, but it was very worthwhile for me. I stayed on a simple diet for several months without sugars and grains that could feed the yeast, eating instead mostly 'greens and proteins'.
----------------------------------------------------------------------------------
3 -- Possible food allergies
You may also have food allergies that are undetected. A nutritionist may be able to help you put together a list of foods you can eat, and when to add to it a new food to see if it causes problems.
----------------------------------------------------------------------------------
Do check with your doc/nutritionist before setting a plan, but I would encourage you to give it another try. Once my yeast infection was dead and gone, I waited for quite a while but then began adding back fruit, and recently I have occasionally had lemon sherbet, but not often. The sugar cravings are gone. Hope you feel better soon too.
I went to Syracuse University. Where is the closest LLMD in NYC?
The doctors in that area and DC, they can be anywhere from $500-$1,000.
Mine here in Fl is a lot less.
Once you have an LLMD they can guide you with dietary requirements, candida and muscle twitching which could be a side effect.
The doctors in that area and DC, they can be anywhere from $500-$1,000.
Mine here in Fl is a lot less.
Once you have an LLMD they can guide you with dietary requirements, candida and muscle twitching which could be a side effect.
I am not 100% positive, but I think most of the fat loss was from the gluten free sugar free diet. That diet also seems to be the cause of the strange muscle sensations, soreness and weakness, which is why I think Candida (herx). Also, I have had chronic problems with a deep skin itch, yeast infections, hypoglycemia and sugar cravings. I also think the eye pain/strain is only a problem when I am on the restrictive diet. So, when I am off the diet, muscles feel better, but joint pain, headaches, and some other symptoms feel worse. Like today, I ate something that caused my face (cheeks) to have numbness (a symptom I hadn't felt in a while).
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