I saw an amazing LLMD this morning, and as I suspected, the clinical dx is positive: Chronic persistent Lyme disease + bartonella (and possible other bacterias).
Blood samples have been sent to IGeneX and to another lab (FISH?). I will get all the results in about 3 weeks.
I should start abx in a few days (Zithromax, then Plaquenil, then Doxycycline).
Gotta admit I'm apprehending the Herx reaction... Fear of the unknown.
****************
I've been experiencing yet another symptom since last week, and it seems to be getting worst (especially today): my mouth, jaw, tongue, palate & lips are extremely tense. It can get so bad that I think I will have a "mouth paralysis"! I sometimes have a hard time swallowing my saliva.
I thought the cause of that symptom was intense anxiety, but even when I take 2 calming pills, I see no improvement.
Does anyone know what I'm talking about?
If I'm told it's one more Lyme-related symptom and that it's not serious, then I'll tame it and learn to live with it. But if not, should I pay another visit to the ER?
Thank you in advance for your answers,
Julie
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
YEP JULIE,
That's what it is! The jaw has a wonderful nerve in it that can give you some nice pain(TMJ). First however
you'll have difficulty swallowing, a lot of us do, so take care whenever you try to swallow
some of those bigger antibiotic or probiotic or alternative pills.
I had sensations of my lower jaw clamping like forward like MS folks can get. I also had some
good ole Bell's Pawlsey! Where ya kinda look like one side of your face melted!....
these things will come and go so no need to run to the er....
I am a little tiny bit curious about the choice of abx your llmd is starting you off with....
however he may be trying to clear Bart or possible Babs or MICOPLASMS before he goes after Bbs.
Sounds like you're on your way!
good luck zman
good luck zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm glad you are getting help. Now you need to learn the word patience. Being patient with treatment is very difficult.
We are all in a big hurry to eliminate these bad guys as quickly as possible. It doesn't seem to work like that.
Even though you have a doctor guiding you...I would recommend that you hear his dosages. But start slow and work up.
Remember your body will dictate how quickly it can handle the die off of this lyme & company. There's much more involved than just taking abx also. Much more!!!!
Reading this board will give you ideas on how you can aid your body in detoxing. What supps/vitamins, probiotics, and other things that will support your major organs while the abx is doing it's job.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
It sounds like you're seeing a good LLMD. You will be hitting various bugs and from all angles with those drugs.
Just start one at a time .... after three or four days, start the next. That way you will know what reaction is coming from what drug. If you are having a significant reaction, don't start the next drug for a couple more days.
Focus a lot on detoxing. Read up about it here, there's a lot of info. At the very least, drink lots of pure water. Lemon/lime in the water can help.
Congratulations on the diagnosis! I'm not curious about the abx choice -- all three go after Bb .... Plaquenil also makes the abx work harder.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Do you think you could possibly give a listing of ALL of your symptoms? Did you have a known tick-bite?
IMO, this seems like a pretty major symptom, the way you are describing it.
I just did a quick search on wrongdiagnosis.com, based on the few symptoms I was able to find posted for you & I personally wouldn't be comfortable telling you to ignore this.
Others may know more about you or this specific symptom than I do.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
You asked for a list of my symptoms, here it is! (It's the one I prepared for the LLMD). I hope you like reading...
When I was 19: Left arm + hand weak for ≈ 1 or 2 weeks. Dropped everything. Problem faded on its own.
When I was 29: Legs suddenly very weak. I was at work and could not get off my chair to get to a file cabinet. I had to roll to it in the chair and come back to my desk. I returned home on my scooter and had just enough strength to climb in my bed. But even then, my legs still felt ``tired'', as if they couldn't rest. They didn't hurt per se, but they were bothering me and it felt like I had to move them constantly. That episode lasted a few weeks, and gradually faded. Followed by pain in arms.
When I was 31: After a day at a lake, got really sick: Killer migraine and repeated vomiting. Next day, I was so dizzy I could barely function. Vertigo lasted ≈ 4 months. Also: Stabbing pain in left ear for months. Problem gradually faded away. Also had a few numb fingers, toes, chin for a few weeks.
When I was 35: Numb chin, fingers for several days; part of right arm numb and very weak from elbow to wrist. Weak legs for a long period of time. Rash on legs (many small red dots) very itchy (scratched to blood) for many weeks.
Starting Jan. 2004: Great pain in hands, wrists and forearms upon waking up in the morning. Lasts a few months. Aching skin in the evening, almost every winter. Sore throat most of the time. I always think I'm on the verge of getting a flu. Pain in legs, arms, back on and off.
Migraines every month during my periods since mid-20. Pain was always behind left eye, left side of forehead & left cheek and would last 2-4 days. First icepick headache in May 2006. Had about 5 episodes since.
For as long as I can remember: Heartburn on & off. Runny, stuffed-up nose. Panic attacks, anxiety.
For about a year now: Always thirsty, drink tons.
Starting early March 2007:
Persistent acid reflux: Nexium had NO effect. Problem lasted about 2 months.
Spasms and pulling in face (cheek, forehead, chin)
Starting March 20: Strange sensation under feet, then hands: tingling, almost itchy + skin feels too tight for the flesh beneath it. Heat in palms + under feet. Later: pain in fingertips.
March 25 to 31: Face, ears, chest flushing (with redness). Heat in face, itchy face + scalp.
March 31: Flare up of symptoms. Red + itchy face, ears. Whole body's a bit itchy. In the early evening, I get very weak, tired, feel like I'm going to faint. My whole body feels ``poisoned'', as with an allergy.
May: Lots of atrial & ventricular extra-systoles. Lasts ALL summer and early fall. Some light tachycardia also. (First time I had A and/or V extra-systoles: Nov. 2003) Now: extra-systoles on and off, especially when I go to bed and am calm. They also kick in when sudden scare (ex.: avoiding car accident).
June 1st: Mental confusion while cooking and talking with boyfriend. Can't express myself properly or understand fully what he's saying, jaw feels frozen-stiff, pressure in head (like rush of blood), invisible tourniquet around base of neck where blood flows, difficulty breathing deeply, sudden weakness, numb limbs.
The tourniquet around my neck stayed most of the summer: face feels hot, head seems to be filled with too much blood, too much blood in my jugulars, like they're about to burst. Cannot put my head lower than its normal position, it seems to fill up even more.
During summer: Red (non itchy) pimples behind both knees. They last for several weeks. My breath sometimes seems to smell like mothballs.
Late July: Bad cold for 1 week. After, dry cough that lasts for more than 3 months.
Since mid-August: Tight skin on fingertips and toes comes back. Face always feels hot, especially cheeks, but is never red anymore. Feels like I have a sunburn on face, palms, finger pulp + under feet. That problem has never left me since.
Pain in joints (knees, elbows, fingers, feet). It's sometimes hard to get out of bed, like I'm 100 years old... Bending down + getting up is hard. Stiff. Pain sometimes in ALL of my body. Toes + fingertips hurt A LOT.
Feels like I'm wearing thin rubber gloves all the time or that my epidermis has gone really thick: tactile perception is dim. Same with soles.
Diarrhea, gas, queasiness, heavy fatigue, weakness.
The sensation in my extremities sometimes spreads to my whole body: burning sensation from the inside, like a poisoning or a fever (but always below normal body temperature). Need to take a cool bath. Extremely weak.
When I have an emotion (good or bad), face instantly feels hot, and it lasts... Never red.
Starting August 25th, for a week or so, on & off: Numbness, tingling in feet + hands that reaches knees + elbows. Pins & needles. Arms + legs go numb for no reason, like when you lie on a limb for too long. I always wake up with a numb arm or other numb part.
Sept. 1st.: 5-day migraine preceded by icepick headache.
Beginning of a new sensation: cold feeling around and/or inside feet. Cannot even describe... Fingertips lose more and more sensitivity. Tension in jaw, hard time articulating. Cold feeling ``under'' the skin of my whole body. Intense heat in face.
Oct. 1st.: Intense icepick headache in right temple (≈ 10 min), then all left side goes numb (except torso) for about 5 hours. Since then, left cheek is numb pretty much every day for several hours. Chin has also been numb. Left cheek is numb / tight / pulling most of the time, like gaffer tape on it that is being pulled. It used to be the whole cheek, now it's just a narrow strip under my eye, just below the twitching spot. Right cheek and forehead also started feeling numb.
Buzzing under left foot. Sometimes, I get it in my head (rarely, but I've had that for years). Numbness in left shin.
Low pressure and buzzing ears when standing up after lying down or crouching. Stabbing but short-lived pain in left ear. Right ear often plugged.
Twitching under left eye (non-stop for months). Sometimes this fall, pressing on left temple with finger seemed to trigger the twitching and hurt temple.
Tingling sensation on sides of tongue and middle of palate (ant crawling).
Burning sensation under scalp, nose skin, palate, middle of upper lip. Can feel my heart pulsating under my skin.
Deep burning sensations on spots of arms. They last a few hours and go. Light touching is very painful.
Stabbing pain in chest (wakes me up one night). Costochondritis?
Pain all over (legs, feet, toes, hands, arms, fingers): I ache all over, but not every day.
Light flashes in peripheral vision. Bigger dark shapes also.
Frequent headaches that migrate from a place to another.
Pain at the junction of skull and neck. Torticollis-like. Frequent cracking. Stiff neck. Lumbar pain since forever. Some false move = electric shock in spine.
Early Dec.: Left cheek numb (as always) + ant crawling on it, at he same time as another ant is crawling on the back of my left hand. I rub, it stops, then comes back. One or two days only.
Leg weakness-sometimes I can barely stand up. Rubber legs; Leg spasms; Left hip, buttock + thigh feel ``restless'', especially when sitting down.
Pain on left foot which moves under foot and back up again.
Since Mid-Dec.: Strange taste in my mouth of dish soap or sweet, strong licorice. My breath sometimes seems to smell like mothballs. Now, foods appear to be more bland.
Crisis (a few times a week): Burning face, numb cheek, pain in extremities, weakness, intense bowel movements, taste of soap/anise in mouth.
Some days I'm extremely tired. I fall asleep watching the 6 o'clock news, nap for 2 hours...
Nausea, dizziness, rubber legs. Burning behind left eye and inside forehead.
Get quickly out of breath, heart races during very small exertion, low stamina. Shortness of breath, can't get full breath.
Hands and feet hurt every day. Left index hurts when used to lift things or applied pressure on, as if I injured it without realizing it and it is not improving much (1 1/2 months).
Moving pain here and there (mostly chest near heart, and legs).
Intense pain in jugular (both sides, but more to left). Intense but short pain in back of throat (once or twice).
Very puffy eyes in the morning (no pus). Throat, tongue, mouth felt puffy once or twice recently. Sometimes it's hard to swallow my saliva; tension in jaw, tongue and neck. Pain in palate.
Dizziness, brain fog, blurry vision.
Last week: light tremor in my body all afternoon. It happens once in a while.
Sometimes, when I walk, hip suddenly feels like it's going to break and I start limping. I've had that on & off for several years.
Mood swings, irritable, no patience, over-emotional reactions, cry all the time, poor memory, no motivation. Very slow, procrastination. I get confused, have difficulty thinking, concentrating. Confusion very scary at times, as though I can't interpret the reality around me, like I don't understand the world and what I'm supposed to do or be. ``D�j�-vu'' by the dozen.
OUF!!!
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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posted
It can be serious, dont mess around with it. Cant hurt to get it checked out more....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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tailz
Unregistered
posted
Tension in my jaw/teeth is one of my worst symptoms right now. It's not so much pain (usually), but I feel like I'm clenching my teeth. In fact, I've sawed my bottom teeth down over the years and had this plastic thing made to protect my teeth, but I ended up chipping my top teeth on that even.
Though I think one of these bugs is involved, and probably metals since I often get a metallic taste in my mouth when my jaw is especially tense, a meter that measures electromagnetic and microwave fields has proven to me that this tension increases in the presence of increased EMF/RF - everything from cell phones to power lines to even solar flares.
I would investigate the possibility that your Lyme is an offshoot of the wireless boom and electromagnetic hypersensitivities.
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