posted
I've been suffering for 4 years with unexplained symptoms. Started a little while after I had a tick bite (I lived in MA... big lyme area), I had tingling and numbness in my arms and legs. Since then I've had fatigue, and periodically I generally feel really ill. I've also had serious anxiety and panic attacks which started about a year ago. I've been tested for everything, MRI's, CT scan, blood work, they tested for lyme and came back fine. No doctor has ever treated me for anything but the anxiety, they just seem content with doing tests and telling me they don't know and sending me home to suffer.
If you know of any doctor that will actually treat patients in the Dallas area, please let me know.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, you very well could have it. Please post in "seeking a doctor" and someone will send you a list of doctors near you. Most of us have to travel for treatment, but many doctors will allow some of our appts to be phone consults. I had to fly from Ohio to NY for treatment!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
that seems absurd that there might not be any doctors in my area to treat for lyme. Why is that?
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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posted
The last good one in Texas was run off by the medical board. The IDSA standard of care is 4 wks treatment. If a doctor treats longer than that, he can lose his license.
We have some very courageous doctors out there willing to treat us.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Joel,
I'm also from Mass. (Boston). It sounds like you have a serious case of Lyme disease.
I've been fighting it for three years now, somewhat better but still pretty sick!!! Keep in mind you'll find some people here that have been suffering for 20-30-40 years or more.
I have all the same symptoms as you listed, + many, many more. the worst one for me now is still the (tingling/numbness/cold feeling and eclectic shock feeling).
Do what (sixgoofykids) told you> Please post in "seeking a doctor" and someone will send you a list of doctors near you.
This is a great site you've found here. Keep posting and educate yourself as much as you can. When you think you know everything about lyme disease you'll find out very quickly you don't.
Feel free to private text me anytime.
Roy
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Joel,
Yes, it sounds like Lyme and maybe coinfections like Bartonella...and you remember a tick bite.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Yes, I certainly had a tick bite... it was on my right arm and I pulled it off one day while taking a shower. It was enlarged and probably was on me for at least a day.
What is Bartonella and is it also caused by a tick bite?
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
_________________
Babesiosis
As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It is absurd. Watch the trailer for this, it explains it some, but the whole movie explains it and the disease even better - www.underourskin.com
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Based on my reading, regardless of if I have Lyme or not, the fact that I WAS bitten by a tick and have these symptoms should warrant me getting treatment since it's been well documented that ticks carry some very nasty diseases. And given that I show no signes of other conditions (like MS) it's even more likely that I have a tick borne illness.
So why do doctors refuse to treat me anyways? This seems to absurd to me. I've literally paid THOUSANDS of dollars for tests, and never received any treatment... all the while I get worse.
And in order to get a doctor who will actually treat me I need to drive 8 hours to another state? I really don't get this at all...
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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posted
Oh I also forgot to include that my liver enzymes were abnormal. And I DO have heart palpitations as well, thought that was just due to anxiety but I'm wondering if it's caused by something else.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Most of us here have both of those...Liver enzymes adnormal and heart palpitations, encluding myself...
Very common with Lyme...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I'm going to see a neurologist tomorrow. Is there any way you think I can convince him to treat me for lyme disease?
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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posted
What about shingles? I had a case of the shingles last September, tested positive for it and had the rash and everything.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Yes...Herpes simplex or shingles rash can be caused by Lyme.
A reg. neurologist is not going to treat you long term for Lyme.
You need to see a LLMD
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Even if I tell him that I had these symptoms DIRECTLY after a tick bite? What else could have possibly caused these symptoms? I've literally been tested for everything, not only does a tick borne illness fit, it's the most logical.
This is making me so irate. I've literally LOST four years of my life to this, and I have received nothing but thousands of dollars in medical bills with no treatment to show in return from our wonderful healthcare system.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Joel, (Lymetoo) took the time to write this to you in an earlier note above:
The last good one in Texas was run off by the medical board. The IDSA standard of care is 4 wks treatment. If a doctor treats longer than that, he can lose his license.
That's on my own experience and also from reading other post from people with Lyme disease. I'm sure you can find a doctor to give you 3 weeks of antibiotics. Maybe you'll be the lucky one and it will help you!
Roy
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I'm not going to hold my breath on getting treatment. I am getting so fed up.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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onbam
Unregistered
posted
There's a government coverup.
undertheeightball.com underourskin.com lymecryme.com lyme-info.net and the links at the bottom of this post
Thus, despite the fact that a patient obviously has lyme doctors are afraid/too ignorant to treat. Truly sorry to be a bearer of bad news. I'll send you the info of docs in my region, though I'm sure there are many more in yours.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi Joel:
Welcome to the club. I'm also from Mass.
It sure sounds like it could be Lyme and co infections to me. I have / had many of the symptoms you describe. Lyme can have over 70 symptoms. Check out the link below. If you have more than 20 strongly suspect lyme.
I had no joint pain and mainly neuro / mental stuff going on. It took me 4 months to get a proper diagnosis after numerous doctors and tests, all of which were normal (except my brain spect.) I was told it was all stress and in my head. I had bad anxiety and went on prozac. FInally got diagnosed on 5/3/10 with a strong positive western blot from Igenex. Most other tests are bogus. I had previously tested negative on the standard test in March.
So...6 weeks later I'm still in treatment but much improved. Id say around 90% give or take. Night and day from where I was in March and April...that was a dark dark place I never want to visit ever again.
Good luck! Find an LLMD!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
I am just lucky I made it through my panic attack phase. I had so many problems that I could not leave the house, I became an agoraphobic. I had to retrain myself to leave the house and just deal with the pain and anxiety I felt 24-7. I lost nearly 40 pounds (I wasn't heavy to begin with) and my wife nearly left me. This was in addition to all the physical pain I was dealing with, not to mention the medical bills I had piling up from the 4 ER visits, the ambulence, the 3 neurologists, the 5 primary care doctors, the gastroenterologist, the hundreds of viles of samples of blood taken, the dozens of MRI's... and that's not nearly all of it.
I wonder if indeed I do have lyme, how much I would have saved if one doctor said "Oh, you had a tick bite? Here's some antibiotics". Instead I have 4 years of misery and tens of thousands of dollars in medical bills. This is criminal.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Yup...and your story is very similar to mine and others. I went to my primary, a GI doc (had gall bladder exam and upper endoscopy), an ENT (hearing tests, ear drum test, ABR, ECoG, ENG), Neurologist (Brain MRI, Spect, EEG), Craniofacial Dentists (TMJ splints...mucho $$$), chiropractors (2 of them), psychopharmacologists, and 2 shrinks.
I've spent Thousands upon thousands getting diagnosed and almost lost my job.
I'm fortunate in that I didn't accept the diagnosis and kept pushing for the root cause, finally finding my LLMD and fortuantely testing positive on IGENEX. And now I'm on my way to being "me" again!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It is criminal. I only wish there were an LLMD that was ONLY 8 hours away from me. I have to get on an airplane to see mine!! I was misdiagnosed for over 30 years. Yes, THIRTY!!!!
You simply have to get to an LLMD. Other doctors won't treat you. When you get better, then fight the system, but all the complaining in the world won't get doctors to treat you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Joel: My friend, you are not alone!
I only contracted it approximately 7 weeks ago. I know exactly when I got it. I suspect co-infections as well. I finally found a LLMD physicians assistant who will treat me. I know your panic, I feel your pain.
You aren't alone.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
Sorry, the confusion was probably started by me. I used to live in MA, where I first got the tick bite. That's where I was raised.
I moved to Texas a few years ago. I suspect I have lyme or some other tick borne illness for about 4 years now.
And yes, I am a fighter. Most people would consider me easy going, but those people do not know me well. My wife will tell you that when I get ticked off, watch out. If I do have lyme disease and I find out I went to a half dozen doctors who essentiall sat on their hands when they could have easily treated me (and that thousands have been treated the same way) I might start a political movement and won't stop until this issue is fully resolved. I feel that strongly about it.
Anyways, thanks everyone for the great insight. The encouragement has meant a lot, it really has.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I am sure you do have Lyme Disease...so put me on the list when you start your political movement!!!
I/we do understand your anger, we have all been at your start of mind your at right now.
Hang in there, and keep us up to date with your health...
Roy
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Well I have an appointment with a neuro today... I would cancel but I figure I'll see what he has to say. Who knows, maybe he will give me some antibiotics if I tell him about my tick bite?
I guess my next step is to see a LLMD (probably the guy closes who practices in Arlington)
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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posted
I went through the same anger and disbelief last year when I got sick.
I found the tick on me, and thought to myself, "I wonder if I will get Lyme disease from that."
I got flu symptoms 10 days after the bite. I never got a rash, so I mistakenly thought it couldn't be Lyme.
I had been told that you could get Lyme from a deer tick bite, so you should watch for a bullseye rash and flu symptoms, and if you got it, you would have to take antibiotics for 2 months to avoid later complications like arthritis.
They didn't tell me that many people never get a rash or even see the tick, that you need antibiotics for a lot more than 2 months to have any chance of getting rid of it (unless you start them within days of the tick bite), and it gave me arthritis-like symptoms from the beginning.
When the flu symptoms came back a few weeks after the first time (and I had other symptoms--joint/muscle pain, fatigue, and emotional upheaval--that I didn't realize were related at the time), I went to my doctor and said, "I got bit by a tick and I think I have Lyme disease."
She laughed, and said of course I didn't, and I probably had caught a cold virus (an identical one, twice, in the summer?) and should go home and take Advil and I would be fine.
I started reading a whole lot about it, and realized all the symptoms I had had that sounded exactly like Lyme.
That took me a while to figure out, though, because the usually authoritative sources of medical information were all wrong.
I went back to my doctor a couple more times and eventually persuaded her to give me some antibiotics, though too low a dose and not enough to last for the whole 4 months I had to wait for an LLMD appointment. She still didn't believe I really had Lyme.
When I finally got to the LLMD, now 6 months after I got sick, he said sure enough, I definitely had Lyme. (I knew that already, but it was great to get confirmation from somebody who actually knew something, and to get actual treatment.)
So now not only was it 6 months past getting sick before I got started with good treatment, and I have to drive 9 hrs. each way and pay out of pocket to find a doctor willing to treat me at all despite having insurance, but now I find out I had been misinformed about how easy it is to get rid of.
All that time, I was still thinking that a couple of months of antibiotics would fix it and I would be well again, and I certainly never imagined it would cost me so much money that I would have trouble paying my rent.
Now I've been on some kind of treatment or another for almost 11 months, and still sick.
Fortunately, I am seeing signs of progress in the last 3 months so I am doing the right thing and getting better, and I was saved years of the runaround that you and so many others have gone through.
But I still had a lot of anger, because why, when I knew exactly what was wrong, did it still take me 6 months to get help, for which my good insurance did not pay?
And it took me months to adjust to the idea that this is not a short-term illness, but one I might be battling for multiple years or even longer.
I guess I don't have to tell you what kind of doctors will not help you, since you've probably seen them all already.
Just know that your anger and outrage is normal, given the ludicrous nature of the politics surrounding this disease, and find yourself an LLMD as soon as you can.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
same here - took doctors 1.5 years to diagnose me. Saw Dr. after Dr., dentists, chiro., etc. We all have similar stories. Told I had CFS, Fibro, a mood disorder, TMJ, atypical migraines. A very healthy mother of 2 young children just all of a sudden can't get out of bed?? For no reason?? Swollen lymph nodes on the back of my neck, but no infection?? doctors just staring at me like we have no clue what to do with her. Believe me, we have all been there - it is unbelievable that Dr's don't believe us. Thousands of $$ later and here I am, terribly sick...and it's just beginning. I have thousands $$ more ahead of me just to get well now. all the doctors laughed when I asked them to run a lyme test and basically said "don't be silly." I am too sick to be angry right now, mainly just very depressed and angry with myself for not pushing harder for answers earlier. I am angry at myself for not getting abx right after my tick bites.
you need to push to be treated ASAP! Don't wait any longer. I travel to DC to be treated.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Well I went to see the neuro again today, he was very cordial and listened to my concern about lyme and agreed to do a lyme test (though I'm not sure it will tell us anything but I know it's a start). He gave me some pain medication in the meantime which is nice but not at all what I'm looking for. I'm tired of doctors pushing high priced drugs that do nothing, when the cure is right there... and far less expensive.
I think I will continue to look for LLMD's that are in my area. I also think I might have a shot at convincing my primary MD to treat me for lyme... he seems like a really reasonable person who is willing to actually treat his patients. I won't cross my fingers though.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
What labs tested you for LD and what were the results? Assume Western Blot tests? Any positive bands? Were you also tested for viruses ie EBV/CMV etc? I guess we are all waiting for a good XMRV test. Oh - were you tested the Labcorp CD57/Stricker panel? The blood you had pulled this week. Know what lab? If enough blood pulled they might be able to do an "add on" ie for the Stricker panel. Your doctor would have to order that.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
OH.. I was the one not paying attention then as regards MA!! sorry!
Ok... so ignore my post to you on the other thread about testing. I'm glad you're getting SOME kind of Lyme test. It will likely be from Quest or LabCorp.. gag..but what can ya do?
You may get lucky and have it come back positive.
Keep us posted on this!! When did the dr say he'd have the test results?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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