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 live in in Upstate, NY near Syracuse. The ticks seem to be everywhere now. I saw a video that guessed up to half of the American population is infected with Lyme and other vector born illnesses. But, no one is advertising this. We are all living in the dark.
Thank you. I will look at Gurascano's treatment. I found a LLMD, but 5 hours away. I may be able to meet him at office three hours away. First visit is almost $1000. I this standard?
Thank you for all of the guidance and support. I find myself wondering if I should follow through with the Leaky Gut protocol before I think about Lyme, because I know for sure of the metal and food sensitivities, and candida. It may make me feel better and Lyme is so hard to definitively diagnose.
Is the muscle twitching a hallmark symptom of late lyme?
Is the muscle twitching a hallmark symptom of late lyme?
Hi, sorry for all you have been through. I just wanted to add a few things to what Jackie said.
She is right you need to find a Lyme literate Dr (LLMD) to get proper treatment. They will use a more specified lab called IgeneX. They will test for Lyme and I would also ask for the co-infection panel. The co-infections don't always show positive but a good LLMD can treat based on symptoms alone.
If you are up to it, go to ILADS.org and read Burascano's treatment guidelines. He explains the co-infections and what the symptoms are which helped me when I was in your shoes.
Lyme can give you vitamin and mineral deficiencies or could play with your thyroid.
We are for you if you have other questions.
She is right you need to find a Lyme literate Dr (LLMD) to get proper treatment. They will use a more specified lab called IgeneX. They will test for Lyme and I would also ask for the co-infection panel. The co-infections don't always show positive but a good LLMD can treat based on symptoms alone.
If you are up to it, go to ILADS.org and read Burascano's treatment guidelines. He explains the co-infections and what the symptoms are which helped me when I was in your shoes.
Lyme can give you vitamin and mineral deficiencies or could play with your thyroid.
We are for you if you have other questions.
You really have been through the wringer, haven't you? Oh my.
Are you in NYC or upstate? The bad news is, there are lots of Lyme ticks in NY, but also some good Lyme docs.
Have you seen posts here by Murphgolf? He is also having what sounds like the loss of fat tissue, and he's been looking into how to deal with it. You might touch base with him to get ideas on how to find a doc who understands this particular manifestation of Lyme. From the brief reading I have done, it sounds like the loss of fatty tissue is one of the possible manifestations of Lyme, which is why finding a doc who understands Lyme can be so important.
If you search -- lyme lipodystrophy -- you may find some information that leads you to a doc who understands it. I've done a little reading on it, and you are definitely not alone.
Also, have you emailed to
contact [at] ilads [dot] org
to ask for a referral to a Lyme specialist near you? As you already know, not all docs are created equal when it comes to understanding Lyme, so sometimes it takes several tries.
Just Lyme, without lipodystrophy, is hard enough, and you are dealing with that too -- you might try a few things to lighten the load on your body, like taking antifungals -- I got a systemic yeast infection and was on Diflucan (by prescription) for a while, then when that was done, I started taking a supplement called YeastCleanse that helped a lot. Diflucan needs a prescription, but YeastCleanse is available online and at some drug stores -- it's not antibiotics, but various herbs. Being on antibiotics can kill off the healthy bacteria and then yeast (a fungus) can move in and stay till you kick the yeast out. If you lower your intake of very sugary stuff, that can help too, tho I know you need the calories.
It may take a few tries to find a doc who can put all the pieces together, but it's worth it. When I was done with my Lyme treatment (antibiotics), I had bad systemic fungal infection too, and it's gone now. So it's doable. Your other sensitivities may fade away too once things are back in balance.
But mainly, I would find a Lyme specialist who things big thoughts about nutrition and so one. If you email to ILADS to find a Lyme doc, ask for one who is interested in nutrition and yeast infections. And I'd also say, be careful of yeast-based probiotics like Florastor aka S. boulardii -- it is yeast in capsule form. It's supposed to help keep the gut replenished with 'good' yeast, but some people like me, and maybe you, are sensitive to it. My Lyme doc said he had never seen that happen before, but there I was.
Email to ILADS and ask for a doc near you who is interested in nutrition as well as antibiotics, if they can look into the doc's bio for you. Also if there is a local Lyme group, ask them. Local people know all the inside scoop about each doc and who does which kind of treatment approach.
You might also find that your metal sensitivities decline or go away as your immune system is not on hyper alert all the time, fighting everything that comes along.
I decided to go gluten free a couple of years ago, and I feel better than I used to. I loved bread of all kinds, yum yum. But once I cut out bread when I had the massive yeast infection (blood shot eyes, loose teeth, brain fog, bloated gut) and avoided anything made with yeast, I got better and stayed that way.
It's not that hard to avoid gluten or yeast, I have found. Instead of wheat, there's rice and corn and quinoa. I don't eat much packaged food, and instead eat veggies and fruit and non-gluten grains, and salmon and tuna and other fish. (You might want to avoid tuna till your system straightens out ... tuna can have high levels of mercury and other things sometimes.)
Are you taking magnesium supplements? Lyme bacteria use up magnesium (Mg) in your body, and Mg is needed to carry message between your cells. Not enough? Twitching, muscle cramps, brain fog, hard to sleep deeply. I read also that there is often low Mg in the American diet because of the way foods are processed, so many of us may be deficient.
I still take Mg every day, and I sleep very well (like a baby after a bottle ... milk has a lot of Mg in it). Any kind of Mg ending in "-ate" is supposed to be most absorbable: Mg malate, orotate, citrate, aspartate, etc. But NOT the blend of Mg and calcium like CalMag -- it doesn't work as well, for reasons I don't know.
I had one skeptical doc tell me I would damage my kidneys (?) with too much Mg, but I did some reading and it said you'd get diarrhea before you'd get kidney damage, so that would be a signal to cut back. I take 425mg of magnesium per day now (half with breakfast, half with dinner), and have no problems at all -- and I'm totally a lightweight.
You've got a lot going on inside your poor ailing body, so feed it well with healthy foods -- extra virgin olive oil, vegetables, some fruit (but not a ton until the yeast is done), protein (eggs, meat, chicken, salmon), dairy.
And about dairy, I am lactose intolerant, always hated milk because it gave me a stomach ache and made me crabby. Now that they make lactose-free milk, I love milk for the first time in my life!!! It is good for calcium intake, and I feel better now that I'm taking it. It's a little more expensive, but SO worth it. (You can still give your kids regular milk, since it's cheaper, unless you think they are sensitive to lactose too.)
You say, "I went on a gluten free, sugar free, dairy free, corn free diet." You might be okay on some of those things, so try eliminating one at a time and give it a week or two or three and see if you feel better. You'll know if you feel better when you're not taking one of them. If you eliminate a bunch of things all at the same time, it's hard to tell what the problem food was.
If you have insurance or enough cash and patience, you could have skin testing done maybe, to see what foods you react to. But otherwise, if you do an elimination diet of one thing at a time for a couple of weeks for each one to see if you feel better, that could work, tho it takes a bit of patience.
You are handling a lot, being so ailing and taking care of your family. Nap when the kids nap, let neighbors/friends do your shopping, keep a chart taped to the wall in the kitchen to note what you eat each day and how you feel. Eliminate one food at a time, for at least a week and maybe more like two or three weeks, or (better) ask your doc how to do an elimination diet, or look online. I never did an elimination diet, so I'm not the one to say how to do it.
Vitamin D supplements (I take capsule form, with liquid inside) are pretty cheap, and I take it every day. Especially because I don't get a lot of sun, and in winter, you won't either. I don't buy the most expensive vitamins and supplements, but I do try to by good brands. There is a Whole Foods market near here, and their selection is pretty good, if a little pricey. Once I find a label I like, I then look on line to buy it even cheaper there. There is a website I use called Vitacost and they have good quality and good prices and service, and it ships to your door. There are others too, I am sure.
Sorry to run on here, but you are carrying a heavy load and I hope some of these ideas help. If you can afford it, hire a high school kid to come tend to your kids for a few hours so you can sleep. You take care, okay? Keep us posted.
Are you in NYC or upstate? The bad news is, there are lots of Lyme ticks in NY, but also some good Lyme docs.
Have you seen posts here by Murphgolf? He is also having what sounds like the loss of fat tissue, and he's been looking into how to deal with it. You might touch base with him to get ideas on how to find a doc who understands this particular manifestation of Lyme. From the brief reading I have done, it sounds like the loss of fatty tissue is one of the possible manifestations of Lyme, which is why finding a doc who understands Lyme can be so important.
If you search -- lyme lipodystrophy -- you may find some information that leads you to a doc who understands it. I've done a little reading on it, and you are definitely not alone.
Also, have you emailed to
contact [at] ilads [dot] org
to ask for a referral to a Lyme specialist near you? As you already know, not all docs are created equal when it comes to understanding Lyme, so sometimes it takes several tries.
Just Lyme, without lipodystrophy, is hard enough, and you are dealing with that too -- you might try a few things to lighten the load on your body, like taking antifungals -- I got a systemic yeast infection and was on Diflucan (by prescription) for a while, then when that was done, I started taking a supplement called YeastCleanse that helped a lot. Diflucan needs a prescription, but YeastCleanse is available online and at some drug stores -- it's not antibiotics, but various herbs. Being on antibiotics can kill off the healthy bacteria and then yeast (a fungus) can move in and stay till you kick the yeast out. If you lower your intake of very sugary stuff, that can help too, tho I know you need the calories.
It may take a few tries to find a doc who can put all the pieces together, but it's worth it. When I was done with my Lyme treatment (antibiotics), I had bad systemic fungal infection too, and it's gone now. So it's doable. Your other sensitivities may fade away too once things are back in balance.
But mainly, I would find a Lyme specialist who things big thoughts about nutrition and so one. If you email to ILADS to find a Lyme doc, ask for one who is interested in nutrition and yeast infections. And I'd also say, be careful of yeast-based probiotics like Florastor aka S. boulardii -- it is yeast in capsule form. It's supposed to help keep the gut replenished with 'good' yeast, but some people like me, and maybe you, are sensitive to it. My Lyme doc said he had never seen that happen before, but there I was.
Email to ILADS and ask for a doc near you who is interested in nutrition as well as antibiotics, if they can look into the doc's bio for you. Also if there is a local Lyme group, ask them. Local people know all the inside scoop about each doc and who does which kind of treatment approach.
You might also find that your metal sensitivities decline or go away as your immune system is not on hyper alert all the time, fighting everything that comes along.
I decided to go gluten free a couple of years ago, and I feel better than I used to. I loved bread of all kinds, yum yum. But once I cut out bread when I had the massive yeast infection (blood shot eyes, loose teeth, brain fog, bloated gut) and avoided anything made with yeast, I got better and stayed that way.
It's not that hard to avoid gluten or yeast, I have found. Instead of wheat, there's rice and corn and quinoa. I don't eat much packaged food, and instead eat veggies and fruit and non-gluten grains, and salmon and tuna and other fish. (You might want to avoid tuna till your system straightens out ... tuna can have high levels of mercury and other things sometimes.)
Are you taking magnesium supplements? Lyme bacteria use up magnesium (Mg) in your body, and Mg is needed to carry message between your cells. Not enough? Twitching, muscle cramps, brain fog, hard to sleep deeply. I read also that there is often low Mg in the American diet because of the way foods are processed, so many of us may be deficient.
I still take Mg every day, and I sleep very well (like a baby after a bottle ... milk has a lot of Mg in it). Any kind of Mg ending in "-ate" is supposed to be most absorbable: Mg malate, orotate, citrate, aspartate, etc. But NOT the blend of Mg and calcium like CalMag -- it doesn't work as well, for reasons I don't know.
I had one skeptical doc tell me I would damage my kidneys (?) with too much Mg, but I did some reading and it said you'd get diarrhea before you'd get kidney damage, so that would be a signal to cut back. I take 425mg of magnesium per day now (half with breakfast, half with dinner), and have no problems at all -- and I'm totally a lightweight.
You've got a lot going on inside your poor ailing body, so feed it well with healthy foods -- extra virgin olive oil, vegetables, some fruit (but not a ton until the yeast is done), protein (eggs, meat, chicken, salmon), dairy.
And about dairy, I am lactose intolerant, always hated milk because it gave me a stomach ache and made me crabby. Now that they make lactose-free milk, I love milk for the first time in my life!!! It is good for calcium intake, and I feel better now that I'm taking it. It's a little more expensive, but SO worth it. (You can still give your kids regular milk, since it's cheaper, unless you think they are sensitive to lactose too.)
You say, "I went on a gluten free, sugar free, dairy free, corn free diet." You might be okay on some of those things, so try eliminating one at a time and give it a week or two or three and see if you feel better. You'll know if you feel better when you're not taking one of them. If you eliminate a bunch of things all at the same time, it's hard to tell what the problem food was.
If you have insurance or enough cash and patience, you could have skin testing done maybe, to see what foods you react to. But otherwise, if you do an elimination diet of one thing at a time for a couple of weeks for each one to see if you feel better, that could work, tho it takes a bit of patience.
You are handling a lot, being so ailing and taking care of your family. Nap when the kids nap, let neighbors/friends do your shopping, keep a chart taped to the wall in the kitchen to note what you eat each day and how you feel. Eliminate one food at a time, for at least a week and maybe more like two or three weeks, or (better) ask your doc how to do an elimination diet, or look online. I never did an elimination diet, so I'm not the one to say how to do it.
Vitamin D supplements (I take capsule form, with liquid inside) are pretty cheap, and I take it every day. Especially because I don't get a lot of sun, and in winter, you won't either. I don't buy the most expensive vitamins and supplements, but I do try to by good brands. There is a Whole Foods market near here, and their selection is pretty good, if a little pricey. Once I find a label I like, I then look on line to buy it even cheaper there. There is a website I use called Vitacost and they have good quality and good prices and service, and it ships to your door. There are others too, I am sure.
Sorry to run on here, but you are carrying a heavy load and I hope some of these ideas help. If you can afford it, hire a high school kid to come tend to your kids for a few hours so you can sleep. You take care, okay? Keep us posted.
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