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Posted 1/14/2014 3:25 AM (GMT 0)
I'm not sure about Lyme, but am starting to question. A few questions...

1. What were people's early symptoms?
2. Did anyone have GI symptoms? If so, what were they?

3. Does anyone know of a Lyme doctor near the Chicago area? Do Lyme doctors work with insurance?

Thank you in advance!!
Posted 1/14/2014 3:40 AM (GMT 0)
Hi Dmarie, My LLMD is by O'Hare so I don't know if that is too far from you. He doesn't take insurance but he does give you a form that you can submit to your insurance. My insurance does not pay for his visits. He charges $450 for the first visit and $150 for half-hour follow-up visits thereafter.

One of my early symptoms was GI issues. I started with acid reflux that was eroding my esophagus due to a malfunction in my lower esophageal sphincter. My throat, teeth, and ears hurt in the mornings from the acid coming up at night, and I would get real bad acid reflux if I ate anything acidic or spicy.

If you want more responses regarding a LLMD in Chicago, you will need to enable your email address so people can send you the information. It cannot be posted here.

As far as thinking that you have Lyme, what are your symptoms and for how long have you been suffering?

have you had any tests done? and if so, have you been tested for Lyme or any of its co-infections?

Post Edited (Healing98) : 1/13/2014 8:43:44 PM (GMT-7)

Posted 1/14/2014 3:50 AM (GMT 0)
Healing98...thanks for your response. Just out of curiosity...are LLMDs sortof "confidential"? I will enable my email address so that people can confidentially email me. Here are my symptoms...I know I may be WAY off, but I'm very confused because I've had some weird things going on lately. At first glance they don't seem related at all, but because they all began within a month or so of each other, it really makes me wonder. I've been to a GI, neurologist and my internist...all tests always come back as normal and nobody makes notice or any connection of my issues. I've read a few Lyme things online which made me start wondering, so I'm exploring. Here's an overview:

1. First odd thing starting 4 months ago. One day out of nowhere I had nausea that came with excessive belching. The nausea went away after a few days, but ever since then, every single day, I have excessive belching (at it's worst was over 100 times a day). It's better now but extremely persistent still and everyday. No heartburn or sense of acid reflux. My GI has done many tests (endoscopy with biopsies, abdominal ultrasound, barium swallow with small bowel follow through, and H. Pylori breath test in addition to the biopsy just to double check). All normal & negative.

2. On and off mild nausea (no vomiting)

3. Terrible muscle twitching every single day for the last 3 months. All over my body. My neurologist did a nerve conduction study, EMG and CT scan of brain. All normal. He says "benign fasiculations".

4. More nights than not, I wake up in the middle of the night with my hands completely asleep. I can shake them out, but it's weird this suddenly started happening so persistently. I am not sleeping on them or with them above my head or any of the typical causes. This does not happen during the day, only while sleeping.

I know these all seem so weird....any input would be great. I just don't really know where to go from here. If all my tests keep coming back normal, does that mean I'm perfectly fine and just having a bunch of really strange symptoms for no reason?? Help!
Posted 1/14/2014 3:54 AM (GMT 0)
I'm sorry...one other symptom:

Constant feeling of something in my throat (feels "thick" almost like phlegm)...
Posted 1/14/2014 4:16 AM (GMT 0)
dmarie, LLMDs are not confidential. We don't post their names here because it is a policy of this board to not do that. In addition, many LLMDs have lost their licenses so we try to protect those who are trying to help us. It is not easy being an LLMD.

Has your GI doctor recommended anything for your GI issues? I would recommend that you consider taking probiotics with enzymes to help digest the food. Take a look at Walmart's Spring valley probiotics with multi-enzyme. Read the reviews and see if any match your symptoms. You may also want to change your diet and see if it helps. dairy, eggs and gluten can contribute to your symptoms.

The twitching can be a magnesium deficiency. It is possible that because you are having GI issues, that your body may not be absorbing the nutrients from your food and this can be a deficiency.
Try taking some magnesium and see if it helps. Magnesium Oxide (most commonly available) doesn't work too well so if you try it you may not get good results. If you are magnesium deficient, you will see results pretty quickly.

The hands falling asleep. I've had that. It is weird and scary at the same time.

It is hard to say if you have Lyme. Your symptoms are experienced by people with Lyme but we usually have a lot more symptoms, specially after 4 months. I agree with you that it is weird that all started 4 months ago and at the same time. I had the same thing happen to me. Everything started at the same time, but for me, I had 48 symptoms that just hit me like a load of bricks all of a sudden.

You may want to read the thread at the beginning of this forum "new to Lyme" and see if this gives you more information.
Posted 1/15/2014 2:02 AM (GMT 0)
Hi healing98...
Thanks for your input. Does this sound like my issue would be far fetched to tie it to Lyme?

What's strange about the belching (it's really my only GI issue) is I'm not sure it has a lot to do with digestion. It happens on an empty stomach, but is significantly worse after putting anything in my stomach. A sip of water, a small amount to eat...and I'm belching. I've heard the whole "swallowing air" thing, but I'm doing nothing different than before. Although it seems like my stomach literally cannot hold any air suddenly...

As for the muscle twitching...I had blood taken and my magnesium levels were normal. Do you think I could still be deficient or no since my blood was normal? I did recently start taking a low dosage of zoloft prior to the twitching and I wonder if that could be causing the twitching? It's so hard to know.

Would it be way overboard to pursue Lyme? I'm just trying to link these odd things together and don't know if they are linked in some way or if it's really just a big coincidence.

What are your thoughts? It's all got me pretty freaked out but my doctors don't seem concerned. Does Lyme progress quickly? Meaning in 4 months do you think other strange things would have shown up by now?

Thanks...
Posted 1/15/2014 2:57 AM (GMT 0)
Dmarie, Yes, most of your symptoms are seen in people with Lyme. However, Lyme seems to have a broader effect, specially after 4 months. Some type of impact is seen in the central nervous system, eyes, skeletal, muscular, gastro intestinal and seems to also impact more than one organ. It is hard to say if you have Lyme or not.

I would like to think (and hope) that your symptoms may be something else. I was thinking about it all day today and there might be a relation between the muscle twitching and the GI issues. The GI tract is made of muscles that contract to move the food along the pathway. It starts with the esophagus and goes all the way down to the anus. If whatever is affecting the muscle twitching in your body may also be making your GI tract contract when there is no food in it, then that may be why you belch so much.

I like to start simple and go from there. I would first like to work on the food that you consume and see if it may be something that you eat or drink. Many foods and liquids can cause GI issues. Dairy products and some vegetables can do that. If you have intolerance to any particular foods, this can cause the gas and belching. Eliminating dairy products, sugar, and gluten may help a lot. For example, if you have some type of yeast infection in the stomach, the air/gas may be the byproduct of the yeast digesting the sugars. If you eliminate their food, you will starve them and this will make you feel better.

Do you know if your lower esophageal sphincter was checked? It may not be closing properly and this can be causing some of your problems, including the phlegm that you feel in your throat. Does this Phlegm have a taste to it? Can it be bile?

Have you tried Apple Cider Vinegar to see if this helps your stomach issues? It has been known to do wonders in the stomach. The probiotics that I mentioned earlier work great because not only do they replenish your flora (beneficial stomach bacteria) but it also contains stuff that helps your stomach digest food better so there is nothing left to cause gas or belching. It also contains Ox Bile which is great with these types of issues.

As far as being tested for magnesium deficiency; there is like 1% of the body's magnesium in your blood so the test is very inaccurate. A better test is to take magnesium and slowly increase it each day. When the body has too much magnesium, it releases the excess in the form of diarrhea. When you get to this point, you back off on the dosage a bit and that is usually the correct dosage. If you are magnesium deficient, you will begin to feel its benefits almost immediately.

People with Lyme often suffer from a magnesium deficiency so even if you get better with the magnesium, it could still mean that you have Lyme.

A thing about Lyme is that if you go see an LLMD, he/she may prescribe antibiotics to treat the Lyme and they are hard on the stomach. Since you already have stomach issues, it may make you feel worse.

As I said earlier, start with the probiotics and see if they help. Change your diet and see if that helps. Take supplements (B12, magnesium, etc) to see if it is a vitamin or mineral deficiency.

With these types of issues, you have to eliminate things one at a time to get to the bottom of the issue. At the end, it may well be Lyme, but at least you did your homework and eliminated all other causes. Also, keep your senses open for new symptoms. Look at the list of Lyme symptoms so you are familiar with them. This will help identify any of them if they show up.
Posted 1/15/2014 4:26 AM (GMT 0)
Hi there...now I'm scared :( I was hoping you'd say you didn't think there was a connection between the belching and the twitching! Now I'm worried there really is...

The only thing is, the belching does not seem like in "twitch" form if you know what I mean. It's like one belch here and there, unlike multiple frequent twitches at once (the way my muscles are doing it). Does that make sense? I did look at the list of Lyme symptoms and didn't see anything about belching. Have you seen belching specifically as a symptom, or just general GI issues?

I can definitely work on my diet issues and try the probiotics. I wonder if it's a diet issue though because I never had any problems with my diet. And also, plain water makes me belch. You asked if my LES had been checked, and the answer is no. That actually is something my GI doctor brought up. He is suggesting possibly doing a Manometry to check the pressure of the LES. I've wondered if it's possibly weak and simply can't hold the air in, thus resulting in the belching. My only question to that, is if my LES wasn't working properly, wouldn't I feel acid as well? I don't feel or sense any acid.

My prescribing doctor of Zoloft told me the muscle twitching can be a side effect of the medication and SSRIs in general, but again that's something that "could be" and there's no way to know for sure unless I went off. The twitching did start about 6 weeks after I began the medication.

As for the phlegm in my throat--no, there is no taste to it whatsoever. I would have no idea what bile tastes like, but I'm guessing the phlegm isn't bile if there's no taste to it? It sort of just feels like normal phlegm or
how post-nasal drip may feel.

I will definitely try taking the magnesium and see what that does. I also have not tried apple cider vinegar. I really have no other GI/stomach issues other than this annoying belching.

One more question. If I wanted to see a doctor about this in the meantime, what type of doctor would I see? My general internist is no help because she saw no relation between anything and told me to "stop worrying". I typically see doctors at Northwestern Hospital and they do have a few doctors in the "Infectious Disease" department whose specialties are Lyme Disease. That doesn't make them LLMD though does it? Would I start there? Is there any way you could email me your LLMD incase I decide to go that route? Or do you think it would be way too soon to do that? I have a very difficult time just "watching and waiting" because I worry so much...sometimes I just need to see a doctor sooner than later.

If you don't mind me asking, do you actually remember how you got Lyme? Meaning do you remember a tick? Was it in Illinois? Did you have the rash? I never had any of these things but I know that probably means nothing.

Thanks for taking all the time to respond to me, I really appreciate it.
Posted 1/15/2014 4:28 AM (GMT 0)
Healing...one other question. How were you diagnosed? Is it all through talking with the doctors about your symptoms and the blood tests? Or other tests?
Posted 1/15/2014 5:35 PM (GMT 0)
Dmarie. please don't be scared. Remember, I am not a doctor. I am just someone who unfortunately has Lyme and has had similar issues.

With that said, I am glad that you mentioned the SSRIs. They can cause the belching and the muscle twitching. muscle twitching is often associated with the Central Nervous System (CNS). SSRIs affect the CNS and as they work on your brain, they can potentially affect the muscles. You don't mention why you are on SSRIs. Many people with Lyme are wrongly prescribed SSRIs by their doctors because they don't understand their symptoms.

You know your body best and if you don't see a relationship between the belching and the twitching, then that is a good thing. I am also very happy to hear that you don't see other items in the Lyme list that match your symptoms.

Infectious Disease doctors often diagnose Lyme per the results of Lyme tests and not by the symptoms of the patient. Most LLMDs listen to the patient and are willing to work with the patient even if the test come back negative. This is because Lyme tests are inaccurate, based on one type of bacteria when there are about 200 different variants. On top of that Lyme doesn't make blood its home so when the blood test is done, it is very hard to find it in the blood that was drawn and thus the negative results.

Northwestern has great doctors and if some of their ID docs are Lyme literate, they may be able to help.

As far as how I got infected: I used to be an avid runner and biker and would do most of my workout at the forest preserves in the suburbs. I don't remember getting bitten and did not have a rash, but in June of 2012 I began to have neck pain, headaches, eye problems, GI issues, high blood pressure, and heart palpitations and all this within a matter of a few days. I was in the ER a few times and was told it was anxiety.
-- My PCP said it was Fibromyalgia and prescribed SSRIs.
-- My Cardiologist said it was benign heart palpitations and prescribed beta blockers.
-- My Ophthalmologist found a blood clot in my eye and floaters.
-- My Infectious Disease doctor found a EBV infection.
-- My Gastroenterologist found H.Pilori, an inflamed esophagus, and ulcers in my stomach. I was put on PPIs.
-- My new PCP (I fired the last one) tested me for Lyme and although band 23 was positive, all else tested negative so I was told I didn't have Lyme.

I did research on Lyme and I found that I had 48 of the Lyme symptoms. So a year after the initial infection I finally found an LLMD that was willing to treat me and so here I am.

My story is typical of people with Lyme because they are often told that it is anxiety, that it is in their mind, that it is Fibromyalgia, MS, and unless the tests come back positive, they don't get help or are treated for the wrong thing. Because Lyme mimics so many illnesses, people infected with Lyme also see many specialists before finally being diagnosed with Lyme. Very few people are lucky enough to have a PCP that is familiar with Lyme and that makes a quick diagnosis.
Posted 1/15/2014 6:53 PM (GMT 0)
Hi Healing98...

I just don't know what to think. Maybe I am grasping at straws and trying to diagnose myself because I want an answer other than "it's just happening". But now that Lyme is in my head, I feel I need to pursue it. I don't know if I should find a LLMD or go to a ID dr. at Northwestern who specializes in Lyme. It sounds as though LLMD is the best way to go. Can you please email me your LLMD? I have enabled my email address.

I did not know SSRIs can cause belching. Here is the thing. I had been on Paxil for maybe 7 years...no side effects whatsoever. I weaned off, and had been off maybe 7-8 months. Then, I went back on Paxil, and actually 3 days later is when the nausea/belching began. So then after a few days I decided to stop taking it. So once I stopped taking it the nausea went away but the belching persisted. This persisted for about a week of me being on nothing, and then after a week is when my dr. started me on Zoloft instead. I started that and have been on it since (throughout all of this belching).

I can't tell if the medications could really be the cause of the belching. Since it persisted that week I was on nothing...and then persisted when I went on a DIFFERENT ssri...I'm not sure. It's driving me crazy because I have no idea what could cause this in a person, or how it could develop without an actual cause.

Again, if you wouldn't mind directing me towards a LLMD incase, I would really appreciate it. Or any other thoughts are great too.
Posted 1/16/2014 12:09 AM (GMT 0)
Hi there Healing98...
Thank you for your email. I actually called to schedule an appointment, thinking it would take forever to get in. They had a cancellation for end of January, so I took it. I need to decide if I should really go or cancel...if I'm going overboard and it is quite expensive. I have one question for that I would really like a very honest answer not sugar-coated. Because this belching issue is one of my main concerns (combined with the muscle twitching)...have you really seen or heard of excessive belching as a symptom of Lyme? I don't see that listed in the symptoms lists, but I know they probably aren't exhaustive. I might sound ridiculous going to this doctor telling them I only have a few symptoms and am concerned about Lyme. Please let me know...I'm definitely willing to see a doctor if it seems valid.

Also, if in describing my symptoms, it doesn't sound like Lyme, is the dr. able to suggest other ideas of what it could be, or is the specialty only Lyme?

Thank you so much...
Posted 1/16/2014 12:41 AM (GMT 0)
Dmarie, The belching issue is not directly associated with Lyme. However, Lyme causes stomach and intestinal issues such as acid reflux, food intolerance, and irritable bowel syndrome. All of which can possibly cause indirect belching. Lyme also affects the permeability of the intestines and how the body processes the food we consume. It also creates allergies and/or sensitivities to certain foods.

Belching can be associated with bloating and with intestinal gas and it is usually caused by swallowed air or the breakdown of food through digestion. It is for this reason that I had suggested digestive enzymes/probiotics and a change in diet because these are the easiest to change and easy to eliminate as the cause. If this is not the issue, then you have to look at underlying issues such as a impacted villi, acid and bile production, yeast, viral, and bacterial infections, checking the esophageal valve and other things. If you have seen a GI doctor, it may be possible that they may have brought these things up to you before.

Doctor B is a Family Medicine Specialist and Lyme is one of his specialties. He has been working with difficult to diagnose patients for many years. Lyme happens to be one of his many specialties as is digestive and intestinal issues. Look up his reviews and patient comments in Yelp and you will see how he has helped many people whom other doctors could not help. Some of these reviews are from people with intestinal issues so that may be of interest to you.

Whatever you decide to do, please don't give up. This issue that is affecting you is very important to you so you must persist in finding out why it is happening and if indeed you have Lyme, then you need to treat it early on so it doesn't get worse. It took me a year to find a doctor that could treat me. Every day I wonder if I would be OK by now if I had been treated earlier. Don't let that be you.
Posted 1/16/2014 3:53 AM (GMT 0)
What is "impacted villi"? Also, is Dr. B able to helpe find out if an issue is one that you listed (such as viral, bacterial or yeast issue)? Or would I need to go to yet another doctor? I've wondered if a possibility is some type of virus or bacteria but then I wonder if I had that, I'd hope I would have some other symptoms. I'm hoping dr b can help me even if the issue is not Lyme. Sometimes I wonder if this belching issue is just some random strange change my body went through and now it's my new "normal"...
Posted 1/19/2014 1:54 AM (GMT 0)
Hi Healing...I have a question about the LLMD you referred me to. Should I send you an email or post here?
Posted 1/19/2014 3:27 AM (GMT 0)
Hi Dmarie, send me an email please.
Posted 1/19/2014 3:47 AM (GMT 0)
Through the "healingwell" email address that came to me?
Posted 1/20/2014 7:52 PM (GMT 0)
Healing 98, please contact me if you would. I am going to see a LLMD by O'Hare on the 29th. I have some questions about his treatment process. Is it Abx and supplement and herbal? Is it working for you? Please contact me. Thanks
Posted 1/21/2014 12:24 AM (GMT 0)
Hi JJ1974, I just sent you an email.
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