posted
I am a 32 year old female. Most prominant of my symptoms started about 8 months ago directly after I had a hysterectomy, and have been progressing.
The last time that I knew I was biten by a tick was 20 years ago when I lived in California. I have also lived in Arizona and Montana.
First, I want to list the basic issues that I tend to overlook. They are just things I am use to. But, have gotten worse.
Symptoms of depression, severe fatigue, headache, word finding issues, brain fog, and short term memory issues have been chronic and I have dealt with for many years.
After surgery I had double vision. Since then I have transient unilateral blurry vision that lasts for 5-30 seconds at a time. My left eye is worse. This occurs multiple times a day. And floaters have increased in the last 4 months.
I was diagnosed with papilledema. (Optic disc's are larger than normal)
Psuedo-tumor cerebri has been ruled out by neurologist and opthalmologist and neuro-opthalmologist.
About 8 weeks ago I had pain with eye movement in my left eye. But with no vision loss.
About 6 weeks ago starting with my left side I experienced muscle weakness. Felt like my leg was going to go out underneath me.
Also had muslce stiffness and tingling. My hands will go numb. My muscles burn. Shoulders and neck are stiff.
The weakness (muscle fatigue) is now prominant in both sides of the body, legs and arms and hands.
Climbing stairs has become difficult. Normal life tasks are extremly difficult to complete.
Fine hand grasping, like writing or coloring with my daughter cause pain after a small amount of time.
Tests done and normal:
Brain MRI w, w/o contrast Cervical MRI w, w/o contrast (mild bulged c3 c4 c5 c6) Lumbar Puncture ESR (performed at start 8 mo ago, high normal) EMG/NCV The blood test for Myasthenia Gravis PTH Cortisol levels CK TSH ANA RPR
Abnormal results
Vitamin A (low) Iron (anemic) B-12 deficient Bone density test (osteo-penia) blood calcium level was low... then 3wks later it was normal
Screening for Lyme was POSITIVE! (Borrelia burgdorferi antibody EIA Screening)
BUT.... I was told that because not enough of the confirmation BLOT tests were not positive that I did not have Lyme.
The western blot was reactive for 41 KD (IGG) BAND AND 23 KD (IGM) BAND
Testing was done at a small town laboratory.
Also, I am on multi-vitamins twice daily, in addition to vitamin A supplement and calcium and vitamin D, and b-12 orally and shots as supplements.
I really have not experienced joint pain though. With the exception of one time... When I was placed on a course of steriods.
Ideas? Does this sound like Lyme to you?
I am soo tired of everything coming back normal and the doctors just looking at me like I am making things up!
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
If you had a positive Elisa test it's likely that you have Lyme. Can you get a western blot done through Igenix? You probably need to see an LLMD (lyme literate doctor). They can diagnose you properly. Look in seeking doctor.
I wish you all the best.
Posts: 2232 | From USA | Registered: Aug 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I would pursue IgeneX testing as it does seem like Lyme. There are 5 in my family with Lyme disease and we all are different with symptoms. Lyme symptoms are so crazy! Can your family doctor help you some more and then get yourself to a good Lyme doctor? You may have to travel out of state.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Thanks for your responses. I was grateful to receive information on LLMD's in my state earlier this evening. I will be doing a bit of research on them and giving a few or at least one a call tomorrow.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Laura
I'm sorry but, it sounds to me like you have lyme, and maybe some co-infections.
I would start with - go to - seeking a doctor on this site.
Keep reseaching, and keep posting here!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
It does sound like lyme. I can vouch for symptoms getting far worse after a surgery--that's what led me to a diagnosis.
Good luck and I hope you can get to an LLMD soon.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
I have the names of Doctors from this site.
But, I do wonder.... would a normal LLMD or a LL Neuro-opthmalogist be better? I will be checking if any of them take my insurance... but if by chance I get lucky and i have the choice...
What type would you see?
I already see a neuro-opthamologist because of my eye issues (but not one on the list).
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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onbam
Unregistered
posted
A positive ELISA is like the Lyme equivalent of winning the lottery...without a doubt, you have the infection.
posted
I went to a neuro-opthalmologist for my Lyme eye symptoms - I passed all the tests even though he had to anesthetize my eyes for me to be able to look at light. I don't think the tests can test for a bacterial infection like Lyme.
I have been able to stop all Lyme eye symptoms by drinking mangosteen juice, an anti-inflamatory antioxidant juice. There are lots of brands in healthfood stores and online. I drink the Ultra and mango-xan ones. If you try it, go slowly and drink a lot of water.
We are all different in our responses to treatment. This anti-inflam treatment works for me.
It does sound like Lyme, so the key will be to find treatments that are going to alleviate your symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Laura:
You may want to watch some of the video's below on the misdiagnosis and controversy in diagnosing and treating lyme as well as co infections.
I'm not a MD but you seem to have many symptoms which match up. Also note the tests give false negatives.
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