I have recently been down a path that is probably familiar or similar to many on this board but I am having trouble convincing myself that what I have is lyme as opposed to MS are ALS and I am hoping to get as many thoughts and opinions as possible. Let me mention that I can not absolutely remember a tick bite within the last few years but I do have a couple of situations that I can confirm. I know that I had at least a couple of ticks removed as a child after camping in the woods of Kentucky (30 years ago - Now 41 years old). I also know definitively that I have removed two ticks from my dog within the last three years (inside dog - this was weird). Lastly I vaguely remember a few years ago thinking that I must have had an allergic reaction to a bug bite due to a small rash that I found on my leg.
With that said I have listed below the chain of events since Jan. 2003 until now that brings me to this post. Again sorry for the length but hoping to gain insight. I may not be able to respond right away due to a business trip but I will reply as quickly as possible.
Thanks again
Lazarus
Jan 2003 - Oct 2004 Symptoms
Noticed a mild negative change in energy mid-year of 2003.
Nov. 2003 had a routine physical with a stress test showed a right artery block (couldn't have been more surprised) but quickly resolved when resting. Sent to Cardiologist for echocardiogram and nuclear test. Imaging came back completely normal but EKG still showed block.
Cardiologist said they were 85% sure it was something called diaphragmatic attenuation (sp). I insisted on a Heart cath to confirm and results- came back completely normal or in his words ``wide open''.
Also have had occasional heart palpitations for many years but increasingly in the last two years.
Chronic sinus issues for years - not debilitating just annoying.
Sporadic issues with inability to sleep about 10-12 times per year.
I often wake up with persistent itching neck ( pins and needles) especially after being in the sun all day.
Migrating muscle spasms occasionally eyelids , biceps
Sporadic twitching (fasciculation's) of calf muscles began, especially at night. 80% calves 5%eyes 5%mouth and 10% other parts of the body. This started in calves on and off for at least a year and a half. Neurologist was not concerned.
Constantly felt like I was fighting some type of infection. Somewhat energetic in the morning but I seemed to crash around 2 PM each day. Naps seemed to help
Jan. 2004 - Injured the nerve running to index finger on right hand (Pretty severe weakness) using a chipping hammer to renovate bathroom. Placed on steroids by Neurologists but discontinued steroids quickly (4 days) due to sudden onset of weird symptoms. This was all well before I new anything about Lyme. Weakness resolved after a couple of months.
Began to notice bouts of stiff neck. Cracking and creaking often with movement
Began to notice tingling on scalp especially around where sunglasses touched scalp
Started to notice mild arthritic pain in three of the fingers on right hand. Comes and goes.
.Aug. - Oct. 2004 continues problems with mild nausa , constipation, reflux and lack of energy. Visited gastro doc and had colonoscopy and endoscopy witch came back negative.
Most of these symptoms by themselves seemed fairly mild and tended to come and go.
I attributed most of them to getting older.
Dec 2004 - March 2005 - every thing changes with stress of mother passing away
Began noticing a substantial decrease in energy daily through Nov. 2004
Increase in irritability and feeling of stress. Originally went to Neurologist for mild random tingling or mild numbness in feet. Discussed twitching at that time. This started at least a year and a half ago. Performed - EMG Negative
Visited Primary care Dr. 3 times for fatigue and chronic sinus problem
Dec. 21 - Mother visits for Christmas and within one week she is in the hospital and diagnosed with lung cancer.
Dec 27th onset of a rash on front abdomen (non bullseye) - itchy crusted over healed with continued breakout on back. Coincided exactly with diagnosis of my mothers lung cancer (stress)
Pulling or small twitching in calves and other parts of the body increased significantly suddenly.
Days when legs feel like jello and hands tingle and feel a little uncoordinated.
Mother passed away Jan 4 from Lung cancer (1 week from diagnosis to passing - Amazing). Extreme onset of additional stress.
Burning under arms, elbows and legs during extreme stress. Also tingling and burning in hands during this stress.
Muscles became very sore and cramped easily. Hot baths are the only thing that seems to help this.
Lost 15 pounds during the stress after mother passing. This is when the symptoms were at their most extreme.
Extreme lack of sleep from Jan 6thth to Jan 24th
Severe anxiety (panic) and detachment from family
January 27 - Dry eyes and mucous membranes. Onset of tingling jaw and tightening around the mouth. Dry throat (red) and tongue at times feeling irritated but not sore. Maybe affecting speech.
Facial muscles twitching began. Not visible but I could definitely feel these.
Scalp tingling with face and neck feeling sensitive to heat and cold. Tongue began to tingle accompanied by a raw or burnt mouth feeling.
Visited another Neurologist for fear of ALS. He did not think I had anything but did another EMG to satisfy me. After test he still did not see anything that particularly concerned him. He prescribed an SSRI (?) for the anxiety and possible depression but I did not take these as I did not want to go down that road.
Pain in bottom of feet and palms of hands. (Feels like tendon and bone pressure pain.)
Friend from church mentioned possibility of Lyme . This friend has had it for a while and sent me to his doctor who also has Lyme. She sent blood work to IGeneX Lab and the results came back as follows:
Lyme IGG Western Blot - Positive
18 kDa +/-
22 kDa -
**23-25 kDa -
28 kDa -
30 kDa +/-
**31 kDa +/-
**34 kDa -
37 kDa -
**39 kDa +
**41 kDa ++
45 kDa +
58 kDa +
66 kDa +
73 kDa -
83 kDa -
**93 kDa ++
Lyme IGM Western Blot - Positive
18 kDa -
22 kDa -
**23-25 kDa -
28 kDa ++
30 kDa +/-
**31 kDa ++
**34 kDa +/-
37 kDa -
**39 kDa +/-
**41 kDa +
45 kDa +/-
58 kDa +/-
66 kDa +
73 kDa -
83 kDa -
**93 kDa -
Symptoms while on Abx
Anxiety and severity of most symptoms reduced after getting test results but before starting antibiotics.
Doc put me on 100mg TID until I could see a LLMD that she referred me to.
Leg muscle twitching was still significant at this time.
Significant increase in cranial/ facial twitching, tingling, and itching.
Tongue seems desensitized or even tingling at times accompanied by dry mouth
Sudden onset of new Sacrial pain (arthritic ache) migrating to lower back lasting two to three days then disappearing without return.
Leg strength tends to wax and wane with only minimal feelings of pins and needles.
Burning under arms and down arms continues but seems reduced.
Feels that I have the inability to sweat.
Finally, I saw the LLMD that I was referred to last week and he took me of the doxy that I had been on for six weeks and is starting me on IV rocephren with tindamax that I will start next week.
Immediately after coming of the doxy most symptoms came back strong - especially fatigue and muscle soreness. Can't decide if it was the doxy or stress from thought of going on IV antibiotics.
Why didn't you go straight from doxy to the IV? How many days in between?
Where do you live, approximately.
Did you feel pleased with the visit with your LLMD?
My doc tried to give me several other dx in the beginning. Now, a little over a year later I am getting better on ABX. It is lyme.
I am not a doctor but, you read like a great "lyme classic".
Hang on, be sure to breathe, it's a ways down the road.... i am still travelling also, you will get better.
Don't forget to breathe,
robi
If you don't have Lyme, I'll eat my hat. You can choose which hat!
If you had only band 93, I would say you DEFINITELY had Lyme....but you have that one and several others that could only be from borrelia!
Have you read this explanation of the Western Blot? It explains every band and why the presence of even ONE band could mean that you have Lyme.
Then there are all your symptoms....everything points straight to Lyme. I don't see how it could be anything else. But I'm not a dr!
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
------------------
oops!
Lymetutu
[This message has been edited by Lymetoo (edited 10 May 2005).]
What would it take to convince you? Are you willing to put off treatment while waiting for a visit from an angel bringing the message that you have lyme? Or maybe that would be a devil!
Faced with the choice of Lyme, ALS, or MS and having lot of evidence and testing that points to Lyme, why wouldn't you go with this, at least for long enough to see whether treatment helps? This might take a while.
Guess I don't understand your hesitation. OK, IV is a big deal to medical novices. That I could understand, having felt that way myself. But I did it because it was clear I was dealing with late stage lyme, with some severe symptoms that scared the heck out of me. More scared of the disease than I was of the treatment.
yep, I was way more afraid of the illness than the treatment! I saw what it did to my parents. Not good.
You can get well without IV, by the way.
And I meant to give you my condolences on the death of your mom. I'm very sorry.
----------------------------------------
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol
[This message has been edited by Lymetoo (edited 10 May 2005).]
You documented your symptoms so precisely. My guess is that you are a careful, meticulous, and cautious person in most areas of your life. Your health is one area where it can feel out of control. I have the need to feel in control by gaining as much knowledge about the illness as I can, almost to the point of obsession. It is a coping stategy in the early stages of diagnosis and treatment that is normal and almost necessary. Like someone said here, there aren't many other diseases where the patient is almost required to know as much as the physician. Would that it were not so.
It will take a while for the information and the diagnosis to settle and to feel right to you. It is a major adjustment in thinking. Borreila does not play by the rules of disease and it is hard to fit into our constructs of disease. It is mind-blowing that the more a person learns about lyme and co-infections, the more puzzling it becomes.
I have been diagnosed for about 9 months and am just letting the whole co-infection thing sink in. When i allow myself to acknowledge that I have lyme disease, I begin to see how deeply it has affected my life because I did not know that I had it for a long time. It takes much getting use to. One's entire life changes to accomodate this disease. It is not easily understood and it is more isolating than many others. A person can be as sick with lyme as someone with ALS or MS yet society recognizes and supports those diseases as devastating. Lyme does not get equal treatment, so in that way it is harder to endure. The good thing about lyme is that the treatment usually works to some degree.
Allow yourself time to let it sink in. Come here and ask questions. You will know in your heart the truth. This is a great place to go through the questioning process. No question or concern is too small or too unusual here.
Sorry you had to be here, but know you are not alone on this journey! As your name implies, you will come to life again!
-pippy
Anxiety and stress most definately have a tremendous impact on this illness!!!! Iknow that first hand. I too was spooked in the beginning that i had ALS or some deadly diseas.
Ive been sick off and on for 6 years and was just diagnosed a couple months ago. I personally was relieved to find out what the heck I was dealing with!!
Stick with your LLMD and give the antibiotics a good try.
Nancy
I'm not being critical, I am just trying to learn more about testing and wonder what you've heard. People like the Bowen test, for example, because it gives you pictures of the bacteria, but I understand there is some criticism of that test for giving too many positives.
For the GI symptoms, you might want to check for gluten sensitivity, or just try a gluten free diet and see how you feel. Like Lyme, gluten sensitivity is underdiagnosed and ignored by most doctors, and can have disastrous effects. www.enterolab.com
Others have laid it on the line, so you must know you have Lyme. But there's some other weird stuff in there, too. I don't know much about brucellis and other more unusual co-infections, but you might want to check in detail. Also, the sleepless, crinky neck, anxiety and short fuse are big bartonella symptoms.
If you need gory "fear factor" encouragement to pursue this diagnosis, please be aware that having Lyme along with brucellis or bartonella can be lethal, and can also make people flat-out nuts. It's a threat you cannot take chances with.
To answer a couple of questions that were asked: My western blot was done at IGeneX and yes I was tested for coinfections but both came back negetive. Also, I began IV rocephrine and Tindamax with Urso yesterday and have an appoitment with my LLMD in five weeks to reevaluate.
Lazarus
Newbies List 2005
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
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Dr. Burrascano and Bleiweiss have noted many Lyme patients have a morbid fear of another hidden illness. I think I fall in to that category.
In fact, after 18 months fo treatment, and an equivocal to begin with , I just came up POSITIVE for lyme. Am I a bit depressed? sure. Am I in denial? Uh huh, all over again. But I have to look on the bright side and not drone on this: I could have an inretractable, uncurable disease. BUT, I don't. And NEVER EVER stop for one second to hear your brain think that Lyme IS just that. Your lyme WILL hear you, and laugh. Alot. This is all hard, especially with the herxing, and the aches and the pains being made worse by treatment, etc. You will be able to look at all this and go "I had lyme, and I beat it" while doing whatever it is you can no longer do DUE to lyme. Or in 5 years , if you had been resistant to the tx of lyme ( which I know you're not) you could by then, probably be given a diagnosis of ALS and told you are not going to make it. Kick this diseases butt. Don't let it hear what you're thinking. Besides, it likes that. It stresses you out, lowers your immune system and then has a party in your system when you're down. Now, after you have been giong through this for three years, and start out equivocal and come up positive, lemme hear ya roar. JUST KIDDING
Your history and symptoms match mine almost to a "T". I'm 37...may have pick mine up in Indiana as a kid. Muscle twitches/spasm in my lef calf. Did a topical steroid for an unrelated issue, and had wierd symptoms (mainly in mucous-membrane areas) what were your reactions? Short bouts of arthritis in my left shoulder. Facial tremors/spasms. I considered all of my symptoms a bother, but not severe. Slight energy reduction as well. Did a Spinal tap to rule out MS. I am currently on oral ABX, but am dealing with an increase in facial spasms/tremors. I just received POS IgeneX results about 3 weeks ago, but continue to second guess, since all of my issues seem to be neuro. I am moving fwd with the treatment for Lyme and co-infections as well...hoping that it IS LYME, and not something worse like ALS. Stay in touch...email me if you'd like... Bill in ATL
Sounds like you have the right attitude to beat this. Be careful with the Rocephin, it has a common side effect of causing galstones. If you can, get a baseline ultrsound picture of your galbladder. That way they can monitor it throughout treatment .... comparing it to the original. Ask you LLMD about it. Maybe you've already done this. - Mike Lazarus
There are some things that might help if you are not already doing them. Hot baths while on antibiotics dialate cappilaries and drive antibiotics deeper into tissue and in 1942 chicago, penicillin studies on tertiary syphilis showed that a body temperature of 102 F delivered three times greater concentrations of penicillin to the brain. Magnesium competes for sites on the nerves and neurons and sometimes helps with twitches and fuzzy headedness. Magnesium oxide is about $5 a bottle even at grocery stores. Finally and perhaps a bit off topic: The non profit organization MIBDEC is currently conducting a small investigation of using dextromethorphan in Lyme patients with MS-like symptoms. Dextro (DM) blocks the NMDA receptors on neurons and increases depolarization threshholds and often helps brain fog and fatigue and "brain-storming" events without the use of sedating antiseizure meds. 60 mgs seems to be the effective dose. There are no long term studies of side effects for this usage of DM so patients are advised to read the label and consult their doctors. Several patients in our LDSG have already responded favorably even after 10 years of chronic fatigue. One possible mechanism is that it competes for the receptor that the neurotoxin quinolinic acid overstimulates. Dextromethorphan is being abused by some kids to get high but they take 600--1200 mgs or more per dose. Those kind of dosages have known brain damaging effects. Longterm studies have not been done on lower doses. Equate brand of Tussin DM at Walmart seems to be the least expensive. I'd be curious to hear back from MS/Lyme patients about good and bad side effects? I will post a brief article in a few days on this topic from my article on neurocascade events. I have not heard of Dextromethorphan being used for MS but it seems like a good possiblity with the known minimal risks and side effects associated with this OTC cough medicine, to minimize neuroexcitoxin stimulation and demyelination from N-methyl-D-asparate receptor agonists like quinolinic acid. Tom Grier
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Posted by aliyalex (Member # 6976) on :
Lazarus,
Posted by duke77 (Member # 5051) on :
Yes, I think lots of people are in denial after the diagnosis. Myself after many of the same symptoms that you have had and a positive LUAT, PCR tests I still was not coinvinced. Mainly because I didn't have a rash as proof, but the minor symptoms I have been having for years sounded like Lyme symptoms.
Posted by TheCrimeOfLyme (Member # 4019) on :
I go aroudn with this in my head sometimes, but really only on good days and I'll start thinking "lyme? nah". Till I get hit again with those familiar symptoms.
But look at it this way also, in 2, 3, 4, heck maybe 5 years?
Posted by Bill ATL (Member # 7817) on :
Laz...
Posted by quic (Member # 5262) on :
Laz,
Posted by Lazarus (Member # 7042) on :
Sorry for the delay in responding. Thanks to all for the support. Bill, the facial twitches are very frustrating! Stay in touch so we can compare notes.
Posted by Bill ATL (Member # 7817) on :
Hey Laz...I posted another thread about my facial twitching/tremors and numbness. I called my LLMD about it Tuesday, and they are starting me on Mepron...which is an anti-malarial and used to treat Bell's Palsey (although I'm not to that stage). It works against Babesia which I was also slightly positive for. I will let you know if it helps me with the facial stuff...if so, you might want to see if your Dr. will prescribe.
Posted by Tom Grier (Member # 7025) on :
Helo Laz,
Posted by Tom Grier (Member # 7025) on :
Thank you Riverzinger,