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 weird muscle sensations and actually probably at least a dozen other symptoms.
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.
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.
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?
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?
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.
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).
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.
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.
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.
I forgot to mention... cilantro and parsley are excellent metal detoxers. You don't have to buy costly extracts, just eat them.
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!!
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.
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
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.
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.
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.
Ricobord, thank you for sharing your experience. I am hoping to get to the MD very soon. I will try to keep my emotions in check. And not panic. I just started a new job last week, that I really, really need. So it is going to be tricky, pursuing this and not raising red flags.
What kills me is that the doctor tested me for it 6 years ago. If only, I had started treatment then. Also, a different doctor tested me a few months ago. So, their instincts are right, based on the symptoms, and they are being thrown of the scent by the negative test. That is what needs to be addressed.
Of course, like you said, this is all preemptive, as I have not been to the LLMD, yet. But based on my own research and my tick exposures,.........
What kills me is that the doctor tested me for it 6 years ago. If only, I had started treatment then. Also, a different doctor tested me a few months ago. So, their instincts are right, based on the symptoms, and they are being thrown of the scent by the negative test. That is what needs to be addressed.
Of course, like you said, this is all preemptive, as I have not been to the LLMD, yet. But based on my own research and my tick exposures,.........
I'm glad you're getting tested by Igenex---- but be prepared for a possible negative on the Western Blot. I always had negatives (through Igenex) but did have Lyme an astute Lyme specialist started treating me based on symptoms and other things.
I started to improve right away. Then I had a lumbar puncture (for insurance reasons) and I was lucky (!!!) and was positive, proving that a negative WB doesn't have to mean you aren't positive.
My remission of 4 years came after starting bicillin and had almost nothing to do with Dr. B's diet recommendations. I ate healthily but didn't avoid anything.
I feel Dr. B is spot on about his antibiotic treatments. But when he wanders into supplements etc ------ meh. Perhaps a holdover from his financial support by FAIM (Foundation for Alternative and Integrative Medicine).
But I encourage you and all others to follow all his advice if you think it will help.
I started to improve right away. Then I had a lumbar puncture (for insurance reasons) and I was lucky (!!!) and was positive, proving that a negative WB doesn't have to mean you aren't positive.
My remission of 4 years came after starting bicillin and had almost nothing to do with Dr. B's diet recommendations. I ate healthily but didn't avoid anything.
I feel Dr. B is spot on about his antibiotic treatments. But when he wanders into supplements etc ------ meh. Perhaps a holdover from his financial support by FAIM (Foundation for Alternative and Integrative Medicine).
But I encourage you and all others to follow all his advice if you think it will help.
I understand how you feel. I have been sick over 20 years and nobody thought of Lyme. If I was treated back then it would have been much easier but at least you are going to test now.
I most definetly would get the co-infection test. My Bartonella is on record now to get insurance reimbursement. It came out positive.
I was treated for Babs and cured and now being treated for mycoplasma. Both of those showed negative on my co-panel tests. Luckily my insurance covered my meds. Some peoples won't with out a positive test.
I was treated for Babs and cured and now being treated for mycoplasma. Both of those showed negative on my co-panel tests. Luckily my insurance covered my meds. Some peoples won't with out a positive test.
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