posted
I am currently still trying to see what is wrong with me. I am 29 years old and have been suffering from certain symptoms since about 7/8 years old.
I grew up in East Texas and ticks were a pretty common thing. I know I was bitten more than a few times in my childhood. I don't ever recall a bullseye rash, but tbh that doesn't mean I didn't have one.
As a child I began to have joint pain in my knees and headaches. They tested me for JRA, but that came up with nothing. They blamed my headaches on stress. I just don't see the kind of pain I was in as something to brush off. It was so bad I had to pull myself up off the floor or bending cause my knees hurt so bad.
At 19, I got my first case of trigger finger then joined in my hips, shoulders and ankles. The pain and tightness in my joints come in waves and I rarely have any time where something isn't hurting. I get headaches all the time and now my heart rate is beginning to jump above 100 - 130 at rest.
I am beginning to become so stressed out that I had to be put on medication. I am not this person.
I was tested for RA and other types of arthritis and everything came back fine. I am at a loss. I am too young to be having unexplained joint and tendon pain at random. I wake up and it always something. My lower back is beginning to bother me constantly and tingle. I suffered from snapping hip unexplainedly for almost a year.
I am starting to wonder if I have lyme and have been blessed to have mild symptoms for over 20 years now. Has anyone else suffered from mostly joint/tendon symptoms or does this not sound like lyme at all?!
I don't seem to suffer from constant fatigue or anything that would cause me to not be able to work or take care of my family, but it definitely isn't normal and I am desperately trying to find what is wrong with me.
Been to so many Dr's and they aren't finding anything, but they never mentioned Lyme as a thought.
(breaking up the post for easier reading for many here)
posted
Not to mention I had chronic UTI's as a child and still have burning almost daily. Doesn't matter how much water I drink. I have been tested for UTI as an adult in the past, but bacteria don't show up , but he symptoms remain. Can this be a sign also? I get aching pains in my legs and arms when laying down at times. Guess I would describe it as a throbbing sensation and dull ache.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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I was bitten hundreds of times in the area of Brenham, TX as a child.
Fast forward many years and I was diagnosed and treated for Lyme and babesia beginning in 2000. I'm better now, but I have acquired Fibromyalgia, Interstitial Cystitis and Mast Cell Activation Syndrome along the way.
So .. get treatment now before it gets any worse. Finding help in Texas is NOT easy. I didn't get any help until I moved to Missouri and landed almost by accident in the office of an LLMD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lyment ishandraa
Oh my gosh, you are too young to have to deal with these health problems. You NEED answers. You NEED to get healthy.
UTI's, knee, back, shoulder, legs, arm, hip and tendon pain can be clinically related to Tick Borne Infections.
You should be evaluated by a LLMD. I would hate to see you stay stuck in the main-stream medical maze that you have described. It took me 3 years and 19 doctors before I got a diagnosis and this is the norm, not the exemption for most Lyme patients. Just horrible the sufferring and the lack of treatment for this debilitating disease.
So glad you found us. YOU deserve a happy and healthy life. You must become your own health care advocate. Start researching everything you can about TBI's. Lyment has a 'search' function that is loaded with such very valuable information that you will find nowhere else ! Lymenet saved my life and many, many, many, many others.
We will help you find a Lyme Literate Medical Doctor in your area. Let's us know when you decide. We are open 24 hours a day, we never close.
Posts: 3217 | From Florida | Registered: Nov 2016
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posted
Welcome - at least you made it here - we will help orient you -
Responding to what you wrote:
1) we don't have to have a bull's eye rash to have Lyme.
2) joint pain as a child is a strong indicator of Lyme disease - it was called juvenile rheumatoid arthritis when this first showed up.
3) testing usually comes back negative with us. They're not testing for bacteria, which Lyme disease is - it's a spirochetal bacteria.
4) headaches are common.
5) spreading symptoms - typical of Lyme disease spreading
6) true - we are not our sick person - that was/is a takeover of our body - but we are more than the illness. Remember that as you work towards healing - you are right about that!
If the medication helps you cope, that's ok. But what you will need is treatment for the illness.
7) re tingling - it's a nerve symptom, whether directly in the nerves, via soft tissue, or via bone subluxation, or all.
8) we're all different in how we present. You apparently do not present with fatigue. That actually is a plus in your case, as it allows you some level of functioning!
9) doctors don't get educated about Lyme disease. We need to see an LLMD - Lyme-literate medical doctor. You can post in Seeking a Doctor and people can give you referrals. You might have to travel out of TX.
I suggest you start to educate yourself about Lyme. We have a sticky at the top of Medical Questions, "Important information about Lyme and Co-infections." Scroll through it to learn.
We also have a Search function at the top of the page where you can type in any word or phrase and archived threads will come up that you can read through. Just know we're all different in what we've got and what we respond to.
Many of us are doing better after some treatment. It is possible to feel better!
Posts: 13171 | From San Francisco | Registered: May 2006
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Also, you might benefit from Teasel root extract. It pulls Lyme out of hiding (it like to hide in the joints, among other places).
I’ve read that if you improve or develop a herx on Teasel that you do in fact have Lyme. Just make sure it’s a quality, well reviewed, brand of Teasel.
Good luck!
Posts: 23 | From Massachusetts | Registered: Jun 2018
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posted
Re joints, I am getting good relief with taking turmeric capsules - takes down pain in joints and muscles. I get it in bulk at the health food store, dip empty 00-size capsules and take one in the am and This is a very cheap treatment!
Posts: 13171 | From San Francisco | Registered: May 2006
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Also, you might benefit from Teasel root extract. It pulls Lyme out of hiding (it like to hide in the joints, among other places).
I’ve read that if you improve or develop a herx on Teasel that you do in fact have Lyme. Just make sure it’s a quality, well reviewed, brand of Teasel.
Good luck!
I really enjoyed that article. Some of it does sound like stuff I have been going through. Thank you!
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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posted
Thank you to everyone that has responded. I found a Lyme Dr here in Houston, which I close enough to where I live. I am hoping to get some answers. I have seen so many other specialists and I am running out of options. Hope to finally get some answers, one way or the other.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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posted
Just got my blood results back and was diagnosed with Lupus. While that explains some things, I'm still skeptical. Lyme test was negative, but considering it's been 20 years I expected that to be the case. I go in Friday to run more tests.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What test says this is lupus? If ANA, or other antibody tests, be aware that those are often abnormal for those with lyme.
Is that doctor a real LLMD? Are they ILADS educated / minded?
This matters. A lot. If you had an ELISA test, that is usually worthless when negative. A "Western Blot" is better but most labs don't do that one correctly and assess all the bands.
Was your test from Igenix? They are one of the best but out of the mainstream so "regular" doctors dismiss.
Where there any positive bands on either IgG or IgM?
If you got a paper copy for your own file, just look at that. I have a suspicion about the test and the doctor. A LLMD would never have just dismissed lyme based on a test. And, even if they thought it was not lyme, they would have considered
other tick-borne infections & other chronic stealth infections such as mycoplasma.
Whatever you do, do NOT take steroids if the lupus doctor prescribes those. Not until you get a proper assessment for all the variables of chronic infections.
Steroids (by various names) are often suggested for what are called "autoimmune" diseases such as lupus is categorized. "Biologics" can be just as harmful for someone who might have any kind of infection.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
And why BIOLOGICS that also dampen immune function can also be just as damaging if infections are not being properly identified & thorough addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say "I go in Friday to run more tests." (end quote)
Friday is the WORST day to get labs drawn. The worst. Lyme labs should always be earlier in week. And if the doctor is ordering lab work done on a Friday for a lyme test, most likely that doctor is NOT a real LLMD.
Even other labs, well, some labs just let the blood samples wait until Monday before they work on them. Be sure where this sample goes and if they work on weekends. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
SEE the WESTERN BLOT EXPLANATION links here regarding lyme.
Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
They said I have Lupus because I tested positive for Hexagonal Phospholipid Neutralization and Platelet Neutralization.
My Red blood cells, hemoglobin and hemocrit (spelling) are low. The tests on Friday are for my iron, not Lyme related. They want to check on my anemia.
My A/G Ratio and Alkaline Phosphastes something or other are also out of whack.
ANA tested negative. I’m not completely convinced Lupus is what I have. They want me to go see another Rheumatologist.
EDIT::: Now they want me to see a Neurologist instead.
I feel blah about it. Almost emotionless about the whole thing.
posted
Also I had the Lyme AB/Western blot reflex test done through LabCorp and it came back negative, but no pre-test antibiotics or supplements were taken to possibly drive out anything to make the test more effective.
I haven’t met with a Lyme Dr as of yet. Really hoping Lupus isn’t my life. Idk why but it terrifies me more than Lyme.
I am currently going to my PCP, however, she is really great and says she will do whatever to make sure I get the right diagnosis.
It's not that she has completely dismissed Lyme, esp if I talk to her about my doubts. She does tend to really listen to me. She doesn't specialize in Lyme, so I know there isn't much she can do personally other than make sure we look at every variable.
Mild SLE Lupus does seem to fit most my symptoms, but doesn't explain others. Those however could be side effects of medications I am taking.
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