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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.
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Avatar universal
I'm sorry that I never replied, but I wanted to say thank you for your response.  I understand what you mean about anxiety.  I am sure that it is partially what got me here. And  I know that when I make a conscious effort to keep it in perspective, it helps immensely.
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Avatar universal
Thank you.  I'm anxious for the results.  I don't know why, but feel like it may be one of the coinfections.  Or Candida only.  I know for sure, I have a fungal candida problem.  I know what to do about it.  I experienced definite herxing.  Scary reaction.
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1763947 tn?1334055319
I have heard of a few co-infections without Lyme.
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Avatar universal
Well my LLMD doc said that he HAS seen people with just co-infections not Lyme.

Also, I am a strong believer in herbal protocols.  I now know two people who put this into remission with just herbs. Both doctors they went to are in Pennsylvania though, not sure where you are from. Rather inexpensive too. Essential oils are great too. BUT I would do an antibiotic first to really get at it. Both of the people I know did antibiotics first then switched to herbs.

I've seen people beat cancer with just herbs.  Do not lose hope.

Also, not every symptom you have is because of Lyme. People without Lyme have anxiety issues.  I have anxiety because I was hit head on by a drunk driver doing 70 mph. I saw my husband and little brother in law get rushed away in an ambulance. My body went into shock. THIS caused my anxiety, my Lyme did not. Both my husband and brother in law have anxiety now because of it. I've just found that people tend to blame EVERYTHING on Lyme.





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Avatar universal
Ok, I had the test done today.   Has anyone ever had co-infections without Lyme?
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Avatar universal
I think it's worth getting the co-infections test. I'm lucky because my insurance pays for everything.

For a person who has little money and no insurance I still think it's worth it if they don't have to break the bank to do it.

All of these questions can be addressed to a good llmd if and when you get to one.
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1763947 tn?1334055319
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.
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Avatar universal
Is it worth paying the extra $500 for the co-infections tests through Igenex?
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Avatar universal
Thank you, Cave.  I'm glad to hear you are doing well!!
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1763947 tn?1334055319
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.
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Avatar universal
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.
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Avatar universal
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,.........
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.  
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Avatar universal
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!!
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Avatar universal
I forgot to mention... cilantro and parsley are excellent metal detoxers.  You don't have to buy costly extracts, just eat them.  
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Avatar universal
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.  
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Avatar universal
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.

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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'.  

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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.

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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.
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Avatar universal
Aaahhh!  An SU student!  The LLMD is in Rhinebeck.  A little closer than NYC.  
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1763947 tn?1334055319
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.
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Avatar universal
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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