"Lyme titers" are notoriously unreliable, and horrendous screening instruments. To definitively rule out Lyme and other tick-borne illness co-infections, it is VITAL that you INSIST on a Western Blot (both IgG and IgM) to be run by a laboratory specializing in tick borne illnesses (e.g., Igenex, MDL, Bown). "Big box" labs are NOT the way to go on this one. They typically do not report all bands, and diagnose strictly by CDC criteria (which is inappropriate, as the CDC criteria were NEVER to be considered diagnositic...only were to be used to surveillance purposes).
I strongly encourage you to seek out a lyme literate physician. Lyme is an extraordinarily complex illness with myriad manifestations which can mimic a number of other diseases. The symtpoms you described above have been described by persons with Lyme disease and other common, tick-borne co-infections (e.g., erlichia, babesiosis, bartonella).
Best of luck to you,
p.s. Unfortunately, MANY infectious disease doctors (as ironic as this may appear) are WOEFULLY undereducated when it comes to the dx and tx of Lyme disease. Please do not fall into the trap of assuming that since a doc told you your lyme titer was negative, that you do not have lyme disease.
Thanks for your input! A lot of people have suggested lyme to me. I used to go camping almost every year and never noticed a tick bite but that doesn't mean it didn't happen. Does chronic lyme get worse before it gets better? I thought the symptoms primarily affected the joints and not the muscles. I'm going to have my spinal fluid tested for lyme as well. How do I go about finding a LLMD? I hear a lot of them are being persecuted by the insurance companies and are kind of "under the radar" so to speak. Not sure how to locate one in my area, I'm in Massachusetts. A family from my town recently have been very sick with no explanation, all tests normal. They went and had to pay a RIDICULOUS amount of money for a test their insurance wouldn't cover which came back positive. New England is notorious for lyme and it's getting worse. I DID have a western blot test done (took two weeks) and my ID doctor seems very knowledgeable about lyme. He assured me I didn't have it. Any additional advice StrictlyTopSecret, as well as others? Thanks so much.
My first piece of advice to you would be to request the results of your Western Blot. Which bands (if any) were positive? The bands reported on a WB from "big box" labs such as Quest and LabCorp frequently do NOT include a few lyme specific bands (ostensibly because the ill-fated Lymerix vaccine, which a patient could have received, could lead to a false positive on those bands).
My second word of advice to you would be to have your WB repeated if it was not performed by a lab specializing in the dx of tick borne illnesses. The leader in this area is Igenex in California. I cannot emphasize enough how important it is to have your WB run by a lab such as Igenex , MDL, or Bowen. It truly can make all the difference.
Thirdly, although finding a lyme literate physician can, indeed, be difficult, it can also mean the difference between getting better and deteriorating. I do not know whether or not you have lyme (or co-infections). I do know, however, that if you have lyme, that it is highly unlikely it will spontaneously remit on its own.
Borrelia burgdorferi (the spirochete shaped bacteria that causes Lyme diseae) is an infuriatingly clever, adapative organism. If you had it for any length of time, 3 weeks of doxycycline probably won't cut it (particularly if your dose was merely bacteriostatic rather than bacteriorcidal). This bacteria has a number of forms, one of which is the (alleged) "cyst" form which essentially enables it to "hide" from antibiotics. Certain antibiotics theoretically work as "cyst busters", while others are more amenable to conquering the other forms of this bacteria (spirochetal bacteria are the same sorts of bacteria that cause syphillis).
You are correct in noting that many LLMDs do not accept insurance. For good or ill, this is often the case. With some, you can be at least partially reimbursed at "out of network" levels.
One important caveat: there are SOME LLMDs (note: I said SOME, not all) who practice on the fringes of medicine. If you are not "into" alternative healing (I am not), you would be well served to overtly ask the practitioner (before plunking down $350 or more for an initial consult) whether or not he/she condones/uses "holistic" or "alternative" type approaches. I am of the opinion that hard science is the way to go with this disease. I recently had the unfortunate experience of running into an LLMD who was one of these "fringe" type docs. After asking her if she was nuts, I walked out of her office.
ILADS.org and LDA.org are two places to start if you need a referral for a lyme literate physician.
Again, I don't know whether or not Lyme (or other co-infections) are a factor for you. I really encourage you, however, not to rule out the possibility.
Best of luck,
p.s. It is often the case that you feel worse before you feel better if you have Lyme and are on antibiotics. This has to do with neurotoxins being released as the bacteria die off. It is called a "herxheimer reaction", and it is not at all uncommon.
p.s. Lyme can manifest itself in a number of ways. One common manifestation, as you mentioned, involves joints and muscles. Neuroborreliosis, however, manifests itself neurologically (e.g., neuropathic pain, encephalitis). My lyme disease has manifested both neurologically and in terms of joint/muscle issues.
Thanks for the quick response. Is there any chance of Tetanus, do you think? A mild form or a slowly progressing form? I know how severe and potentially life threatening that disease can be and my first neurological symptoms was a DAY after my wound, the Dr. said I'd be dead within a week with that kind of infection, but I was on Augmentin at the time and received a tetanus shot within 24 hours, which I've been told can slow down the progression of the disease, but no doctor seems to be able to tell me by how much.
A lot of my symptoms seem to mimic the early stages of that disease, and it is so rare and uncommon in this country now that most doctors have never seen it, let alone have the qualifications to diagnose it. Every doctor I've seen assures me that is impossible though I feel like there is something coursing through my veins, slowly poisoning me. I just don't know what do to. I've written to the foundation about finding an LLMD and will have my WB repeated. I'm wondering if this could be Lyme, or perhaps some kind of poisoning. All input is appreciated. Thanks to everyone. :)
You should thoroughly investigate the lyme disease. My sister in law was the first reported case in Illinois 17 years ago. She was so very, very sick for more than a year before they dx'd her (she was about 25 at the time). She had meningitis three times and, as you, just felt as though she was dying. No one could figure it out and I don't know how they finally pursued the test for lyme as it was very uncommon and just coming to the forefront back then. But she had been in Minnesota for business and that is where she was bit - she never realized she was bit either. The disease did manifest itself in many different illnesses but most serious was the menengitis.
Follow the testing from the above post and best to you........
There is no chance you have tetanus. Tetanus is a very serious, life-threatening disease. If you had it, you would be dead already or paralyzed and on life support,or nearly dead. You can x this one off of your list. I've been a nurse for more than 20 years. I have never seen a case of tetanus. I think lyme disease is a very likely probability. I agree with the above posters about the testing etc.. Do not rule this out based on testing alone. Good luck.
Yes, I realize how unlikely it is. I find it interesting that this all seemed to start with dental pain, and infection, and now my jaw is swollen and I'm having these muscle symptoms and jaw tightness, bad taste in mouth. I had read that if an infection (such as a dental infection or sinus infection) becomes anaerobic it can produce these kind of potentially serious neurological symptoms and can cause all kinds of problems. I had my teeth looked at a few months ago but there was no sign of abscess. I'm having a lumbar puncture on tuesday and an MRI of my neck and jaw next week so I'll see what that shows. I'll post my results. Would the MRI show any kind of infection, or pockets or abscesses in the jaw or anything like that? Thanks!
Yes, please post your results. We are all trying to find out what we have. It helps to talk to others and find out what they have had done, results etc..Good luck with the spinal tap. Make sure you stay flat on your back for the time period they tell you and drink lots of fluids so you don't get a spinal headache. I got one. It was so bad I had to be admitted.
Is it possible that I have a viral infection that is attacking my skeletal muscles? Would it be worth having a muscle biopsy if my doctor is willing to order it? EMG is normal, but I don't think that would show muscle abnormalities as a result of a virus, though I could be mistaken. I understand they often times only have to take small tissue samples. Everybody is trying to reassure me that I'm not dying because almost every single test result so far has been negative, but I truly feel like something terrible is going on. How does the spinal feel? From what I've been told it's a feeling of pressure and it's uncomfortable but not excrutiating or anything like that. Drink lots of fluids before or after? (or both?)
Hi, I'm sorry for all you're going through. It sounds truly dreadful. I think the suggestions that you've been given are good ones. I think you should have the definitive Lyme testing with Igenex . However, I have one idea that is a little off the wall, especially since 2 neurologists have felt you do not have anything neurological, so that implies your neuro exam was normal. I was also told by a highly respected neuro that nothing was wrong with me, when I did, in fact, have MS, so I know that docs are fallible (and sometimes lazy or stupid...)
I would like to ask a couple questions.
I saw the reference to a normal EMG, but I did not see a NCS Nerve Conduction Study ( also called a Nerve Conduction Velocity). Have you had one of these? It would certainly be proper to do with your history of paresthesias.
Are your reflexes normal, hyperactive or reduced/absent?
Your need to find out more about the abnormality on MRI. As far as I know there are no abnormalities characteristic of CFS. Lesions consistent with Lyme also are consistent with MS. (and some other things - see below)
The reason I ask these questions has to do with an illness called Guillain-Barre syndrome and it's more chronic relative, CIDP - Chronic Inflammatory Demyelinating Polyradiculopathy. They both can follow a viral infection and have both been known to follow EBV infections. CIDP is a disease of the peripheral nerves in which they undergo auto-immune attack on the myelin (like in MS, but in the peripheral nerves instead of the central nervous system). They are characterized by muscle weakness, sometimes paralysis, and often severe muscle pain. Some forms may also have strong sensory (parasthesia) components. The MRI's may be normal (or may show some non-specific white matter irregularities) but the NCS will show slowed conduction velocities.
There may be a tight feeling to the muscles, but not true spasticity. The tendon reflexes are usually absent (whereas they are more likely to be hyper in MS).
CIDP can affect the autonomic nervous system and cause cardiac arrhythmias, gastrointestinal disturbances, abnormal sweating, orthostatic hypotension, etc.
Cranial nerves are also often affected and can cause facial, jaw pain spasm, paresthesias, etc.
GBS typically follows the infection fairly promptly and resolves over a few months. CIDP is persistent, but tends to have a relapsing-remitting (up and down) course.
The spinal tap usually shows elevated protein levels.
You can search for CIDP - but I should caution you about one of the main sites you'll find. cidpusa.org has some good discussions of the disease itself, but they are way off the wall when it comes to the other claims that most diseases are autoimmune and that they can cure them all with diet. I would use them, if at all, only for their descriptions of the disease. But, there are also scientific articles such as the one on emedicine.com.
Also, as a physician, I can tell you that you do not have tetanus. That's one worry you can drop.
A muscle disease would be very unlikely given your normal muscle enzyme tests. When there is so much muscle pain it's hard to believe the muscles aren't being destroyed, I know. I don't think a muscle biopsy is your next best test. You need a spinal tap. I had mine under guided fluoroscopy and it was a painless breeze. I've had others unguided and had not problems with them either. Be well hydrated and stay flat. Bring along a caffeinated drink. If you have to pee before it's time to get up, doing it lying down - you're so lucky you can do that...
Good luck, Quix
Thanks for the advice!
I'm going to ask my doctor about that CIDP. Does it get progressively worse before it gets better, and is there treatment for it? These neuromuscular symptoms have been going on for about 3 months now and seem to be getting steadily worse. I had the nerve conduction study with the EMG where they sent electrical charges through me, and all the results were within normal range. Should I have this test repeated? Also, to the best of my knowledge, there is no history of motor neuron disease in my family. I also had a comprehensive neurological exam and my reflexes were normal. The doctor said my reflexes would be much worse if I had true spasticity, but I do have muscle stiffness and burning sensations, and weakness upon repeated movement. Could I have been poisoned or something? I'm going to have a heavy metals test done by my primary care. Thanks for any advice!
Forgot to mention,
All muscles feel tight for the most part. I have some stabbing sensations under the throat and sometimes have difficulty swallowing, or have the sensation of being choked, it's really terrifying. The jaw tightness feels almost unnatural and that's why I suspected tetanus at first because I had read that was one of the early symptoms.
I have a friend who had many of of my symptoms. She went for years trying to find out what was wrong with her. All her tests were normal including CPK, EMG, etc...Her exam was normal except for hyperreflexia. An astute neurologist ordered a muscle biopsy to look for metabolic or mitochondrial disorders. She didn't have either or those but what she did have was a myopathy(polymyositis). This is a serious, rare disorder. Anyway, she did not present in a typical manner, usually the CPK is elevated, but all her testing was normal. I don't know if a virus would show on a muscle biopsy but myositis(muscle inflammation) would. I'm having an EMG of Tues. I would like a muscle biopsy myself.
Regarding the spinal tap, I am a very difficult spinal tap for some reason. My spinal pressure is low and they have trouble getting fluid. The tap itself is painless except for a pinprick when they give you the local anesthetic. Many people have no problems at all. Drink fluids before and after. They told me to drink Mountain Dew because of the high caffeine content, after I got the headache. The headache was horrific so try to prevent it.
Thanks for the advice, I'll heed it. I'll bring plenty of water. I suffer from heart palpitations so having something with a boatload of caffeine is not the best option for me. Will drinking plenty of water be OK? Also, would an MRI show muscle inflammation or swelling? I've been having the jaw tightness and weird sensations and my right jaw muscle looks a bit swollen and I've been having the throat tightness as well. My primary care called the radiologist and asked him the best way to evaluate the muscle tissue as well as some of the bony tissue, and MRI of jaw and neck was recommended.
Another question: I've been OBSESSED with this - non-stop, as in, pacing, needing to be on Xanax, convinced I have a terminal illness, severe depression, and non stop anxiety. I've lost a lot of weight and have not been leading a normal life. I have one foot in the grave, basically. How serious an effect can this have on the body? Can stress, anxiety and severe depression really mimic the symptoms of dangerous conditions or exacerbate them?
The reason I was thinking tetanus is because these muscle symptoms started the day after my injury and I hadn't had a tetanus shot in 11 years. It started with a severely stiff neck, muscle weakness, and an uncanny feeling of tightness in the jaw. I've heard of mild cases of tetanus with jaw swelling, muscle pain (and sometimes spasms), extreme jaw tightness, difficulty swallowing, etc. I did a lot of research on this condition and found that these cases are very difficult to diagnose. So you feel that there is no possible way that this could even be a mild case of tetanus? Thanks, and if you feel the need for the muscle biopsy, I'd demand it. I'm thinking of asking for one. Does the patient have the right to demand a test?
I'm not sure about the MRI question about muscle swelling etc.. You might want to ask QUIX what she thinks. When I first came down with these horrible symptoms I too was very depressed, lost a bunch of weight, obsessed about it night and day. I was horrified with the whole thing. I still am stressed about it and worry all the time but I've settled down a bit. It's been two years, no answers. What will be, will be. I can't change anything. I do think the anxiety about it makes it worse but how can we cope with the unknown? Neuro symptoms are very scary. I'll never stop looking. I have constant burning, twitching, tingling, weakness, pain etc...I know what you are going through. I still don't think you have tetanus. I want back and read your initial post. I guess it's possible you could have had a vaccine reaction. I had lots of muscle pain and even a fever after my last tetanus shot but it only lasted a couple days. This was years before my illness started. Water is fine for the fluids. Just make sure you drink plenty and good luck.
Just want to say thanks to all for the advice. Based on the tests I've had so far, would you say the fear that I am actually dying is irrational? I live at home, and discussed this with my father who says I'm just spiraling out of control, and the depression and anxiety is making my symptoms (most likely) worse. I read on the net that MRI is a great tool for evaluating muscle tissue inflammation, and is often used by neuros to decide what regions to peform a muscle biospy on (if they feel it's warranted). I've been having a lot of constipation issues as well, could this be caused by the mixture of the benzodiazapine I'm taking and the beta blocker atenolol? I'm taking about 3mg of Xanax per day and 50 mg of atenolol per day (once in the morning and once before bed). I've been taking metamucil too which is helping. They did a ct scan of my stomach down to my bowel and everything in between and didn't see anything out of the ordinary - my pcp said if something was pushing on my intestines or causing a blockage or what not, this would show. Is that accurate? Thanks so much, gotta head to bed, nervous about this spinal tomorrow.
Thanks for all your help. One more question. My neuro said he doesn't think from what he's seen that I have a neurological disease, but that doesn't mean there isn't something CAUSING the neurological symptoms. He asked me about my primary care and said that I required a FULL medical workup. What exactly does that entail besides physical exam and bloodwork? Thanks
My neuro's said they didn't think it was primarily a neurologic disease as well. It sure feels like it! It feels neuromuscular. Be careful with the xanax. 3 mg per day is a pretty hefty dose. If you ever stop it you'll need to wean it gradually or you may go through withdrawal. Talk to your doctor about it. I looked up your medications in my drug book. Neither said constipation as a side-effect. Even so, I would not discount this as a possibility. An intestinal blockage is extremely unlikely. You would be extremely ill with vomiting, abdominal pain etc.. Lack of physical activity because of weakness etc.. can cause constipation. A full medical work-up would include testing for all the autoimmune diseases, endocrine disorders like thyroid prolems etc...You may have had all this done already. Good luck today.
Another thing I noticed is there is what looks like undigested food in my stool. I cannot seem to gain weight. I have been eating protein bars, lots of fiber, lots of carbs (and not a lot of veggies, probably contributing to constipation). I gain weight (i was up to like 155), and then weigh myself a few days later and my weight is back down to 143. My weight has been fluctuating quite a bit. I started losing weight when I stopped my normal eating habits when this condition began and the anxiety started. Could the extreme stress, anxiety and depression be causing digestion problems and weight loss?
Just got home from the spinal. It went OK. My anatomy didn't cooperate and it took an hour and a half for the procedure total. It was rather uncomfortable. Apparently my neuro ordered a BATTERY of tests which makes me feel good (the Dr. doing my spinal said she hadn't even heard of some of them), checking proteins, for viral or bacterial infections, fungual infections, etc. Thankfully I didn't get the massive headache but I drank a LOT of water today :) My back is sore but other than that I'm doing OK. I'll post my results when I know.
Mine took that long too. Hope you are doing well.
Just got some of the results of my spinal fluid analysis. My cell counts were normal, and I asked about my protein. I guess it is in the normal range. They said it was a scale of 0-44, and mine was a 31. Is that somewhat elevated? They're still waiting on the results of six more tests. I'll post when I get them. Any insights to this? I've been having digestion issues, IE, being starving again, 2 hours after eating a big sandwich, constipation, constant dry mouth, etc. I'm really starting to lose hope, I feel like I should just check myself into the hospital and have every test under the sun performed.