posted
Is it possible to have lyme even if you don't have swelling of the joints, etc? I'm always really tired, off balance feeling, seemed like i always kinda had a lightheaded feeling but not sure, achy. Idk if it's related but my vision is really staticy. Also.. it's like my chest is constantly tight although this all "could" be anxiety, jaw, stomach problems and throat seems to hurt a lot. I used to think my hearing was off and for a while i felt like i was majorly in a dream and it was scary but i've tried to ignore it.
Besides that, I have not made an appt with a lyme doctor but am planning on doing the igenex lab. I am waiting to call back my doctor because apparently she didnt know if they could do it... I was wondering should i save money and do the western blots, or also do the co infections/pcr serum tests too? Co infections usually are present if lyme is too, right? Unsure if i should make an appt now or wait for igenex results.
Posts: 315 | From Allentown | Registered: May 2014
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posted
I never had swelling of the joints and I had a CDC positive Lyme test by IGeneX, so the answer to your first question is yes.
If your doctor will do the test, I'd have her do it while you wait for a Lyme appt. She *can* do the test. Any doctor can. It's just that she might not be willing. If she does the test, ask for a copy of the results. I had 8 positive bands and my primary care doctor told me it was negative.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
Babesia (a co-infection) causes a lot of the problems you described. I never tested positive for it, but my doc started me on protocol because I had so many symptoms and it helped.
Lyme can cause those symptoms too.
If you've been on any immunosuppressents, they can effect the antibodies test (including allergy and steroids for me).
If you've had Lyme a long time, your body can just give up making the antibodies and you need to do a "challenge" test (where you take doxycycline to even have the possibility of getting a positive test).
Test if you like or you can skip the testing and see an LLMD. They may even treat without the test because the Lyme testing is flawed (too many false negatives).
By the way, I've been infected with Lyme twice (had rashes both times). The first time I tested CDC positive and had mild symptoms.
The second time I had symptoms like yours and even worse. I tested in the ideal window (6-8 weeks after infection). I was CDC negative even though I obviously had Lyme/coinfections and 9 bands came up positive!
Testing and interpretation of tests really needs improvement.
posted
Make an LLMD appointment and then think about it if you need to. I'd say your regular docs are just going to give you the run around so it's best to see an LLMD. A lot of times LLMD's have long wait lists so you might as well check them out and make an appointment. By the time you do get your test back and then have a probably underwhelming follow up with your primary care doc you at least can feel better knowing that you do have some next steps set up as an option.
Posts: 154 | From Boston | Registered: May 2014
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posted
I never had swelling joints either but I tested through the roof on my labcorp western blot given to me by my primary care doctor. I had all of your symptoms except jaw problems. my life was seriously affected by them, though I continue to work and for the longest time I kept being told by Dr.'s that it "could all just be stress!"
Posts: 154 | From Boston | Registered: May 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I never had any swelling of any joints.
I suffered with undiagnosed lyme disease for at least 10 years. I went from doctor to doctor looking for a diagnosis of my illness. No doctor thought to test me for lyme for 10 LONG years! That is likely because the miseducated doctors want to see swollen joints before their brains think of lyme disease.
I have known many, many people with lyme disease over the 12 or so years I have been around this disease. Just a small number of folks get swollen joints.
Some get some joint pain from time to time. I once got a little pain in one joint of one finger. That was during lyme treatment--after having lyme for 12 years. It only lasted about 2 weeks.
My major symptom was extreme muscle weakness and extreme fatigue. Fatigue isn't even a good enough word to describe it! I couldn't stand for more than a minute, or hold a phone to my head for more than 30 seconds (I timed it), or hold my mouth open to have my teeth cleaned.
You see, what the medical profession says about lyme disease is nearly all wrong!!!!
Of course, if you get a very swollen knee for no reason, you should think lyme. But, doctors need to know that lyme can cause hundreds of horrible symptoms. Swollen joints are just one possible symptom.
Just like most doctors think you will have a bulls eye rash also. I never had one. Less than half have this symptom also.
Stop believing what you read and hear from non-lyme literate doctors.
To get your education on this disease, read the Burrascano LYme Treatment Guidelines found here:
Burrascano says that if you have had lyme at least a year, you definitely have coinfections also.
In Maryland, every lyme patient also has babesiosis and bartonella. I only know one person who is an exception to this rule.
These 3 are the most common and so are called "the big 3" by lyme doctors. Most lyme doctors automatically treat a patient for all 3. That's how common it is to have all 3.
I suggest you edit your location to add your state. People here are from all over. Few will know where Allentown is. It is often helpful to know the state a person is in. For example, if you are on the east coast, you almost always have all 3 diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"My major symptom was extreme muscle weakness and extreme fatigue. Fatigue isn't even a good enough word to describe it! I couldn't stand for more than a minute, or hold a phone to my head for more than 30 seconds (I timed it), or hold my mouth open to have my teeth cleaned."
TF - I have these same exact symptoms. It is by far the worst. Did yours go away or lessen eventually?
I'm needing some hope.
Posts: 2839 | From California | Registered: Jul 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Once I got good lyme treatment, from a doctor who followed the Burrascano protocol, I was symptom-free in 8 months and finished with treatment in 13 months.
Lousy lyme treatment helped me some, but eventually my disease began to progress. So, the doc is the key to getting rid of this horrendous illness. That is what I learned.
Get to a doc who follows Burrascano, meaning high-dose combinations of antibiotics (the combos Burrascano says to use, plus the dosages he says to use) plus treatment for every coinfection you have.
I had babesiosis and bartonella, but really did not exhibit any symptoms of either. Once I got rid of the lyme and started to treat babs, all hell broke loose. It was a real surprise.
The doc is the key to getting rid of this. I had these symptoms for at least 12 years by the time I got to my Burrascano type doctor. Still, I was cured in months.
But, lousy lyme treatment won't do it. I wasted 2 years taking lousy lyme treatment. Then, I studied the Burrascano Guidelines, went to hear Burrascano speak twice, and I saw that my lyme treatment was woefully inadequate.
Then, I called lyme support groups for a doc who did every single thing that Burrascano says to do. That is how I had success.
Then, I sent at least 5 of my friends to Burrascano type doctors and they also got rid of their diseases.
So, I have seen the Burrascano protocol work over and over again. That's why I believe in it.
It took the 1 continuous hour of weightlifting every other day for me to finally see my extreme muscle weakness begin to go away.
Can you imagine me trying to lift weights for one continuous hour? Still, that is what my doc said I had to do (that is what Burrascano says to do), so I persevered. At first I could only do a few lifts of an empty bar, a few crunches, etc. It was pitiful.
But, I kept at it until I was finally up to lifting weights for 30 minutes. Eventually, after a number of months, I was up to the full hour that is required.
This extreme muscle weakness is actually a neurological problem. It is not a muscle problem. So, the antibiotics are what kick it out. Then, the weightlifting boosts your immune system to help you clear the rest of what is left in the way of germs and also to keep you from relapsing.
The muscle weakness was the first symptom to come, so it was the last to go. But, it went. This was over 9 years ago now and none of this has ever returned. I praise God for this every single day of my life!
Posts: 9931 | From Maryland | Registered: Dec 2007
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