Topic: I'm not sure, but I don't like it. Would someone read and give opinion?
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hello all:
Just registered on this forum because I've been stuck on suspecting I have Lyme for a couple months. I am wondering if someone can read this over and tell me what they think. It's a little long but I wanted to include everything and I am trying to decide what to pursue. I don't want to get into a *very* long story but --
Starting in around May. Achiness in hands and feet and a rash across my face. I thought it might be from the heat ( Florida) but I have never had arthritis before. Fatigue, trips to the bathroom, increasingly bad stomach.
August, stomach stuff is not going away. I am getting chills across my back, depression, strange moments and strange ideas. I think it's stress, or maybe a bug.
September -- stomach is getting really bad. I now have a tremor when I pull my chin into my chest, a head tremor I have to steady.
I get a botox injection for my glabellar lines. I am now starting to feel exhausted, sick to my stomach, still have chills, night sweats that are getting worse. I go to the doctor, she does an ANA panel, finds I am positive and then only one antibody: anti-ssb.
Mid-November -- suddenly starting to dissociate. Still having night sweats, then what I think is an ear infection. Occipital neuralgia.
Then parotitis. I also have a rash on my face and fingers and my face is swollen everywhere including my eyes. My ankles are swollen too. I look weird, I feel weirder. I have no fever.
I go to the doctor, get Levaquin. Now the arthritis is back. I'm thinking it's a reaction to Levaquin. But finally the stomach problem is gone. When I get up from where I am sitting one day, my sacroiliac joint pulls away from my spine and there is functional weakness on my left side, from then on.
My vision goes double. My ear is still pulsing and full. When I wake up in the morning my face is bright red and swollen and I have a patchy rash on both cheeks. I have swollen lymph nodes down the back of my neck and I think I have meningitis. I go to the doctor again, she says I can't possibly have meningitis, and I get Sulfa.
I am running across the street and the c5-c6 vertebral disc herniates.
I wake up in the morning and have no positional stability. My eyes are wandering and cannot focus. I have fasciculations, tremors, and my right jaw is cocked back into my neck.
At this point I have been to the ER twice. I go into the clinic and ask them to test me for Lyme.
It comes back three weeks later. I am negative on the IGG and positive for only two bands on the IGM, 41 and 66.
I end up going to neuromuscular therapy and craniosacral therapy. Then water therapy. I have vertigo, floaters, tremors back and forth and to and fro. I can not focus on people when I talk to them. I can't think. I have a positive Lhermittes Sign. My jaw is still cocked back under my ear.
I take my MRI of my herniated disc to a neurologist. He doesn't think the disc is a serious problem and puts in tests for syphilis and Epstein Barr, Sed rate, all that stuff. I have an appointment February 10.
After a month of physical therapy, I am a little better. I have neck pain, a frozen shoulder, left sided weakness, tremor ( but much better), paresthesia all over my body including my face, and the lhermittes still hasn't gone away. The paresthesia worries me, little pinpricks, like tiny raindrops. Not just on my arms and legs but on my cheeks and upper lip and forehead. My vision is better but still slightly double and unfocused.
In the past two months I have been on Levaquin 500 for 5 days, Sulfa for seven days, Cipro 500 for eight days, and doxycycline for ten days.
In my opinion what happened can only be three things:
Systemic Botox Reaction, potentially resulting in whiplash injury Floroquinoline Poisoning, potentially resulting in tendonitis and whiplash injury Lyme Disease
Or maybe all three.
I would be grateful for an opinion. My feeling is that if it is the upper two, then I'll eventually get better. But...if it's Lyme...I won't get better without treatment.
Please let me know what you think. Thanks in advance.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Welcome to the wonderful world of tickborne diseases.
In my opinion you most likely have lyme and also possibly bartonella. The fact that your G.I. symptoms improved with the levaquin is a big red flag for bartonella. Also the swollen lymph nodes could be from that infection.
Post in seeking a doctor. Without the help of a true LLMD or someone willing to think outside of the box you could end up running to specialist after specialist with no end in sight and little if any improvement.
The sweats are also an indicator of an infection of some sort - lots of possibilities including bacterial, viral and protozoan.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Absolutely you fit the profile with numerous symptoms leading to multiple diagnoses and yet no conclusions.
I started out with a PA dr, and loved, love, loved him! He knew all of the areas to probe, was very experienced and knew how to get my body back to functioning by seeing my symptoms as an overall picture without a label.
He segregated possiblities as mentioned above like the Bartonella by testing and treating them as they came up. He peeled back the layers of possibilities exposing them and getting to the core of things. Many times the answer was giving me back my immune system.
I endorse him highly.... Good luck .... I'm sorry you've had to suffer so much.
Consider this article: When to suspect Lyme Disease.
posted
You seem to have had a tick borne infection compounded by levaquin poisoning. I just finished 5 days of Ciprofloxin (11 days ago) and have loose joints, pain in tendons and muscles and fatigue when I walk. That is on top of the previous symptoms of lyme disease. Cipro is similar to levaquin.
While you need to treat Lyme disease, it is very important that you also heal from Levaquin toxicity syndrome. You can look this up.
For most people it is not permanent-but detoxing, magnesium supplementation (massive) , anti-oxidant supplementation and patience are important.
I also got frozen shoulder two years ago after taking a course of levaquin but at the time did not relate the two events.
Many of your symptoms (except rash and stomach) especially the neuromuscular ones, are very similar to mine.
I'm sorry this has happened, you have quite a road ahead of you but healing is definitely possible. You can PM me if you like.
Do not take steroids or NSAIDS as this can make things worse. Good luck.
...............................................
Breaking up a paragraph for easier reading for many here -
While you need to treat Lyme disease, it is very important that you also heal from Levaquin toxicity syndrome. You can look this up. For most people it is not permanent-but detoxing, magnesium supplementation (massive) , anti-oxidant supplementation and patience are important. I also got frozen shoulder two years ago after taking a course of levaquin but at the time did not relate the two events. Many of your symptoms (except rash and stomach) especially the neuromuscular ones, are very similar to mine. I'm sorry this has happened, you have quite a road ahead of you but healing is definitely possible. You can PM me if you like.
Do not take steroids or NSAIDS as this can make things worse. Good luck.
-
DITTO!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hi there:
I agree about the levaquin poisoning. I am in terrible pain, taking tons of magnesium, vitamin e, aspirin, doing gentle physical therapy etc.
If I didn't believe it was possible to get better I really don't know what I would do. The pain and physical infirmity is just the worst thing I have ever experienced. Sometimes I think I should just get into bed and not get out for a couple months and see if it's any better. Daily living is a struggle.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
PM sent for Lyme-literate doctor (LLMD) in FL.
Posts: 8981 | From Illinois | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Jordana. You should probably try to find something better than "tons" of aspirin for pain
Curcumin helps many and fish oil
Lymetoo knows a lot but i would say nsaids might be ok. Much better to find herbal or supps to control pain and inflam but there are times you need to make hard decisions
I had to take high dose ibuprofen for 30 yrs or i would not have been able to raise my family. Now i have very bad reflux that is hard to control and possibly an ulcer.
But i dont regret what i did. If i didnt work i wouldnt have been able to raise them or pay for llmd long term
Now studies are coming out that nsaids are not as bad as we thought they were
That happens with some who have psyc sx with lyme. Sometimes you have to take a psyc med you prefer not to take for awhile until things are under control
I do agree steroids, statins and the levaquin type drugs should only be taken in acute life threatening situations and then for as short a time as possible and with supp support: coq10, ala...there are more
Llmds have also told me topical steroids are ok for short term
Good luck. Im sure this is overwheming to take in. But you have found us for suoport. You need a good llmd
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Wierd i never knew how to put smilies in and that one appearred...not sure how
You need igenex testing too
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hi:
Thanks for the advice and response, I really appreciate your thoughts.
I took two courses of steroids when my disc herniated, but that was mostly to get it off the spinal cord.
Aspirin is called an NSAID but it's a little different. You could actually get just as much salicylic acid from a couple of glasses of orange juice as you can from two regular aspirin. I take it to lower inflammation but also because it lowers estrogen and protects against oxidative stress. It also protects against a condition called chondromyalcia, which is basically cartilage destruction. I'm trying to ration my opioid painkillers in the meantime
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm thinking levaquin too. Steroids make the symptoms worse.
I just saw a fantastic ophthalmologist and he said fluoroquinolones combined with the steroid shots ruin the eyes. We're now trying to figure out what to do about the damage.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Also, depending on the timing, the face swelling could be from sulfa.
I'd also switch to fragrance-free products. At least the laundry soap if you can.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be very careful with aspirin. I had a friend who nearly died from the stomach bleeding that even just one baby aspirin a day caused. And, it seems, that it's not all that uncommon for aspirin & other for other NSAIDS, too.
Because lyme can irritate the stomach lining, aspirin can be even more risky. Details:
Topic: will one baby aspirin a day make gastritis worse? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
One note on the testing. You said negative for IGG and two bands for IGM. The western blot searches for "bands", and is generally done with IGG and IGM. But there is also an ELISA test that is not band specific, and is sometimes called the screening test, as it is sometimes performed without the western blot, with the idea to follow up with western blot if the ELISA is positive.
Are you saying for western blot no bands on IGG and 2 bands on IGM? And then did you have the ELISA test? Did you get your lab results. Regular docs are notorious for not understanding and/or not giving the full details to the patients.
Posts: 1927 | From se usa | Registered: Mar 2010
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Sorry, I got it mixed up. The IGM, the top tier, was negative. The IGG, the second one, had two positive bands -- 41 and 66KD.
So there are some antibodies to some infection, not necessarily Lyme. I think. This is part of my conundrum; if it *isn't Lyme, then what the heck is it?
I had another sort of vague positive from the autoantibody test, which looks for autoimmune antibodies. I had a positive ANA, which meant there were autoantibodies to *something*, and an expanded test which found "anti-ssb." This was the only positive and I've read it can mean a "false positive".
What the Lyme test showed was that I had been exposed to some spirochete in the past. Reading further there are only two other common ones: syphilis, which I was tested for two years ago due to a bad romantic decision; and some kind of dental spirochete which I guess is possible.
Or...there is Lyme there and the test is wrong. This was not Igenix, it went to Quest Diagnostics.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
FYI: when breaking out in the rashes (facial or any other location) it's a good idea to take a picture or two. If u see a Lyme doc (or other specialist) u could show him/ her the pics especially if there's no existing rash at time of appointment.
Posts: 82 | From New York | Registered: Aug 2012
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in. But you have found us for suoport. You need a good llmd
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