posted
My symptoms started in January with the following: achy, tired, flulike feeling blurred vision in my right eye tingling sensations in my extremities stabbing pains beneath heels of feet glandular cyst on foot fatigue joint pain (wrists, hip, fingers, elbow), stiff joints upon waking slight malar rash sore ribs/bones dry patchy skin shortness of breath, weird palpatations oversensitivity to noise toes turn beet red after exertion/shower (heat?) fingertips turn white when touching cold objects fingers shake, legs jerk upon resting shifting wbc (4.8, 5.4, 3.7.. i think i was on antibiotics when the 3.7 came, havent been retested since) (all symptoms heavily worsened last week while on zithromax for strep) HERX?
**i would like to add that i was tested for lupus (ana, anti-ro, anti-la, anti-dna) all negative, but i was told with lupus the antibodies could take a while to come out (afraid to be retested)
i was in the catskills from dec. 23-26th of 2005 and the symptoms started jan. 06. no recollection of a bite, but weather was very mild, cabin was dusty, rustic.
i am sorry this is so long but i am basically very scared that i will test negative for lyme because if it isnt lyme, it must be lupus (judging from malar rash, fingertips turning white, dry patchy skin)
i am seeing a dermatologist tomorrow for a weird brown spotted mark i have on my neck that i don't think was ever there. i will have her look at my malar rash but it is very faint, i am not even sure if she will notice it. no one else seems to. i am only 19 and very depressed from all this. getting tested with igeneX next week.
if she biopsies the rash, will she be able to tell if it is caused by lupus?
i just need a little push in the right direction from you beautiful people. i just can't help but be so afraid of lupus. it is a terrible disease. i just need to get that igeneX test. if it is negative, it will be negative..
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi michelle,
I have had or have many of the symptoms you describe (with lyme).
I have heard others with bartonella state they have pain in the bottoms of their feet.
Even if your igenex test comes back negative you may still have lyme. Yes, Igenex is a great lab...
but when it comes to lyme and coinfections even the best tests are not 100% accurate.
I have no medical training but the symptoms getting worse may very well be a herx...
And that right there tells ya you got something bacterial going on (lyme, coinefection)...
I am sure others will agree with me on that point.
Are you seeing a llmd now? I hope so if not get one asap. Because if it is lyme they ar ethe best to treat it. And if it isnt well they can treat whatever it is.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I was dx w/ lupus. But it's a miracle!!!! I don't have it anymore.
The symptoms have slowly and surely started to clear up w/ meds. I've been taking antibiotics for aprox 17 months.
I can go in the sun and take a hot shower and my ana has gone back to normal. The butterfly rash on my face is faint now.
I can't think of more symptoms of lupus that have gone away but am sure there was more.
Anyway if a duck dx w/ lupus take the plaquenil it helps w/ lyme if you use it w/ biaxin.
I know it's scarey. Good luck. You are on the right track. There is plenty of oppurtunity to get better.
I'm living proof.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Michelle, Be sure NOT to wear makeup when you go to the doctor's appointment.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Lupus is not particlalry nice but neither is Lyme. The imporatnt thing is to figure out what the problem is ten treat it.
There have been some reports of the lupus tests going positive as a result of Lyme but nothing concrete yet.
How long did it take for the symptoms to get worse after start of the ABX. If is was less than 4 days then it was not a lyme reaction, maybe it was bartonella (which also has a herxhiemer effect).
In either case, the sooner to get it confirmed the better your chances of a succesfull recovery. Not knowning is worse than knowing. At least you can plan your strategy. You won't likely die from either disease so it comes down to minimizing the impairment and damage.
Best to get tested right away for what ever the Dr's are suggesting.
Posts: 1184 | From north america | Registered: Feb 2003
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you say if the symptoms were worsened before 4 days after antibiotics it wasnt a herx? i thought you could herx immediately? i started the antibiotics tuesday and had worsening of symptoms by thursday-- but it was bad.. the worse i have ever felt (spastic leg jerks, spastic eyes, seeing lights and spots, horrible pressure and heavy feeling in head, bug crawling sensation, tingling) the works. if this is not a herx, what is it? i was also taking a tsp. a day of colloidal silver.
Posts: 55 | From portland, or, | Registered: Apr 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi
i didn't mean to say t was not a herx, but rather likely a herx from a different bug. Bartonella will do this. Syphlis is also one that does this. i am sure there are others but I don't recall right now.
I re-read what I wrote and it should have said not LIKELY a Lyme reaction, anything is possible. But the general trend that seems to have been observed with most people is 4 days or so.
If it is different, then be on the lookout for co-infections (which can be worse than Lyme, partilcalry since they are even less well understood.
Sorry for the confusion.
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
3 times I've been dx w/lupus; no treatments to date!
I received a 5 page summary of my 4-20-06 newLLMD/holistic dr. report today plus 1 blood lab of info galore.
It's all puzzling to me, so I am NOT going to report on my findings until ALL my blood labs, urine, mouth swabs, BM, ewtc. are ALL BACK.
It's puzzling. Read more terms of new illneses I have now; thank you, but I've had my FILL of them thank you!
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Michelle,
I've rarely herxed during my two years of treatment so far, but I herxed the very first night of antibiotics. So by everything you are describing in terms of worsening symptoms from antibiotics, that clearly sounds like herxing due to a bacterial cause.
And I've had most of the symptoms you describe - and yes, some can be due to coinfections (I'm suffering with the sore heels now - probably Bartonella).
I don't have lupus, but have been tested for it all my life due to a couple of lupus symptoms and a positive ANA - this was long before I was bitten by the tick. Yet upon more definitive screening, it was ruled out.
I know women with lupus, it's a terrible disease, but unfortunately so is Lyme. I agree with the other posters - your fear shouldn't just be about one disease, you should be trying to get an accurate diagnosis.
My Lyme was misdiagnosed as MS and several other things until I figured out what I had and saw a Lyme specialist. At first I was terrified about the thought of having MS. So many of us have been in your shoes of being frightened about the thought of a specific disease, when we really need to be doing what you're doing - seeking a correct diagnosis, whatever it is.
Please keep us posted. Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I herxed within 10 minutes of taking antibiotics. Bacterial load was very high according to LLMD. Continued herxing very severly for a long time.
It was so bad, I thought I was literally dying. Called all my friends to say goodbye.(no joke) I had been bitten hundreds of times daily in late 70's. wasn't diagnosed until 1999. I think there are others who can relate. I am confused as to why you think you can't herx within 4 days.
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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posted
I herxed after taking my first abx for Lyme!!! [ the first DAY]
Lyme Disease Symptoms List 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
I had many of the same symptoms you have [with Lyme]. Get tested thru Igenex, get treated, and see what happens. I'd be willing to bet that many of your symptoms will go away.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I took one abx and herxed so badly within hours (and my stomach digests slow) I ended up in the ER.
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