Hi, I have been reading this forum for a couple of weeks now and wanted to get everyones opinion. I will try to keep it short: I went through PT for shoulder pain this summer, had terrible neck/upper back pain that PT didn't help. Cervical MRI showed nothing, had myelogram which was perfect. My symtpoms: Neck pain, stabbing pain between shoulder blades, pressure in head, tingling/numbness in both hands, terrible pain in elbows and fingers, absolutely exhausted but having trouble sleeping, burning pain behind ear, doc currently treating me for shingles on my face, had a horrible spreading rash on my abdomen in september (but did not look like tick rash), sometimes have really weak legs, feel like I could pass out, off and on diziness, muscle twitching. This is just what I can think of. Had full bloodwork last week, including lyme titer which was negative. Sed rate was also negative. Now have an appointment with a neurologist and rheumatologist. I am growing so frustrated at feeling like this as I am a very active 32 year old. I would love to ask my doc to give antibiotics a try, but am afraid of the response I might get. Help! First, could this be lyme (In hindsight I have riden my horse in a field that was infested with ticks for the past two years, always found them on him, but not on me), and if so what steps should I be taking?
Posted by treepatrol (Member # 4117) on :
Dr B 2005 Posted by Troup Brazelton (Member # 6297) on :
Once you start down the neuro path, it will be harder to go the infectious disease route. Schedule a visit with an LLMD before you see a neuro. You would have to be extreamly lucky to have scheduled a visit with a neuro that knows anything about lyme.
Posted by ABar95 (Member # 8415) on :
I know, the neurosurgeon has me scheduled with the rheumatologist and my doc wants me to go to the neurologist. I really don't know what I should do. I am growing really frustrated over all of this. I am tempted to go to the rheumatologist first, but really not sure that will help either.
Posted by lymie tony z (Member # 5130) on :
If you want to go thru all the ducks most of us have been thru...just to rule out anything else...cuz your tests will probably come out normal and they won't know what's causeing your symptoms...then they'll tell you you're a nutbag and hypocondriac.......go for it.
If you want to fast track your recovery and ultimately save time money and possibly get better faster.....get your butt to a llmd...lyme literate medical doctor.....ASAP.........zman
Posted by ABar95 (Member # 8415) on :
That is exactly what I want to do, but am growing frustrated in finding one or getting someone to listen to me.
Posted by Bill ATL (Member # 7817) on :
ABar...
I recommend that if you have good insurance, and can afford it, go ahead to your scheduled appointments. Currently you are in the "Eliminating all possibilities" phase, as I was about a year ago.
Your post reminds me of my first post to this forum...and "Treepatrol" was one of the first to respond . I suggest you read the DR B docs that Tree attached above.
I almost cried (happiness) when I saw the Lyme symptoms listed in it, because I knew at that moment what I was dealing with. I had that answer I was searching for....DISPITE most of my regular Drs. telling me it wasn't Lyme or was stress, etc.
There was NO WAY that it could have been any other common diagnosis. The symptoms go acroos many different bodily systems. I thought I had MS/Lupus/encroaching blindness/vertigo/carple tunnel/etc...etc.
I even had a spinal tap done @ the neuro. Came up negative of course (even for Lyme at that point).
I was able to talk my way into some doxycycline antibiotics and improved remarkably.
You're in Tennesee...and your symptoms sound exactly like mine...wonder if it's the same strain...I didn't have a bullseye either, but a swollen rash around my elbow.
I go to an LLMD in Charlotte, if your on that side of TN, let me know if you want the info.
If your on the other side of TN, the LLMD "DR. C" is in MO.
Don't waste your $ for too long with regular docs. Call an LLMD asap...sometimes the wait can be a couple/few months to get to see them.
Bill
Posted by ABar95 (Member # 8415) on :
Thanks, I actually had read those documents allready, that is why I have been so frustrated. When I went through the symptoms I circled 32 of them! It is so frustrating, I want so bad to ask my doc if I can try some antibiotics. I am on the Charlotte side so maybe that doc there would be a possibility.
Also, do these docs accept insurance?
Posted by Lymetoo (Member # 743) on :
95% of rheumatologists will deny Lyme also. It's the testing that is flawed. You MUST have your Lyme testing thru a lab that deals with Lyme 100% of the time, not a lab that does EVERYTHING in the world.
If you want to go to these drs [ducks, as we call them! ] for peace of mind, then do it. Just keep in mind you are losing precious time. By the way, a spinal tap is NOT the way to test for Lyme. They are only 20% accurate in finding Lyme. Your neuro will vehemently deny that!
here is more info:
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia*
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Your history of riding a horse for two years and finding ticks on him speaks volumes! YOu could have been bitten and not have seen the tick. The rash could have been a Lyme rash. It does not have to be circular.
Check out Treepatrol's links on rashes. There are pictures there.
PS...Dr C in MO is awesome! Many from TN see him.
Posted by Bill ATL (Member # 7817) on :
I had about the same # of Burrescano symptoms...32 or 33.
The main reason I go to Dr. J in Charlotte is because he does accept my insurance. Very RARE thing for LLMDs. I'm going to email you the info. Sometimes they get to a point of not accepting any more patients...so be prepared for that...hopefully that won't be the case. He does have several very competent PA's/NPs. I actually go to one of those.
Bill
Posted by treepatrol (Member # 4117) on :
Post for a LLMD in the Doctor section here.
Posted by ABar95 (Member # 8415) on :
Thanks so much for all your help. I have actually posted in the find a doctor section too. I am shocked and truthfully a little relieved when I look at that list of symptoms. It makes a ton of sense to me, but finding someone to listen is another story all together!
Posted by ABar95 (Member # 8415) on :
So, about this rash I had back in September. It never really crossed my mind it could be lyme related. I saw the doctor for it and was put on a steroid cream for it, which dried it up. It started on my abdomen and quickly spread in splotchy areas around my back. It was raised and actually quite itchy. I actually now have scarring from where it was. Perhaps this was all related. About a week after the rash I ended up back in the doctors office with severe neck, upper back pain, headache and photophobia. He said I was having spasms and sent me home with muscle relaxers. To me I felt more sick then just muscle spasms. Felt flu like as I have so often seen described at this point. Ever since then I have been feeling crummy all the time. Although my shoulder and neck pain, numbness/tingling had started before all of the above.
Posted by Bill ATL (Member # 7817) on :
Almost every one of us has gone through the same thing you are right now. Frustration and disbelief at the current Medical Community's blatant disregard for people in our situation. Not just the inability to diagnose and treat, but the obvious avoidance of it. I'm not gonna get into it here, I'm sure you'll see...the more you become Lyme-aware...of the politics of it all.
The other difficult thing is that your system of trust in your "regular/primary" doctors will erode away in favor of trusting in yourself, your LLMD, and trusting the people on this forum.
This has been a true life-saver for me.
Bill
Posted by henson2 (Member # 463) on :
Dear ABar,
WELCOME.
I am sorry you are experiencing all this awful stuff.
I am not a Dr. But your symptoms sound highly suggestive of Lyme to me.
Please set up an app't with an LLMD ASAP.
The CDC itself asserts that Lyme is a *clinical* diagnosis. So your Lyme test coming back negative really means nothing. (Did they do an Elisa? A WB? Did they show you which, if any of the protein bands showed positive? You are allowed to ask for that). The Lyme titer in use currently tests ONLY for antibodies and not for the Lyme bacteria itself, and there are numerous reasons your body may not be producing antibodies.
Many specialists in other areas don't understand this, nor do they know that Lyme is a "clinical diagnosis." They will very likely believe AUTOMATICALLY that if your Lyme test was negative, you do not have it.
Then you will be taken down the road of possible MS, or Fibro, or other diagnoses. At the least, this could delay the proper treatment that you need -- and that is no small thing: the Lyme bacteria, if present, could burrow into your nervous system and brain. At the worst, the treatment for MS includes steroids, which are contraindicated for Lyme because steroids suppress the immune system, and if present, the Lyme bacteria will get a tighter hold in your system, causing more and more disabling symptoms and a longer and more difficult recovery later.
Lyme Disease is often misdiagnosed as MS (as well as Lupus and ALS, among others). Lyme is called "the great imitator" because it mimics so many other conditions.
Each specialist views a presenting set of symptoms through his or her lens of specialty and familiarity, and many, many rheumatologists and neurologists are not attuned to the realities and emerging research around Lyme or other Tick Borrne Diseases *at all*. In addition, they often work from out-dated information -- particularly the erroneous belief that the Western Blot blood test is a "gold standard" for Lyme, which it is not -- and this has done harm to many people, sometimes irreversibly.
If I sound alarmist, it's because so many individuals and families have been devastated by incorrect diagnoses and delayed treatment of Lyme and other tick borne infections.
You can use this site (See seeking a Dr.) or other avenues (area support groups, for example) to find an LLMD in your area.
Your symptoms sound highly suggestive of Lyme symptoms to me, so I urge you to get proper evaluation for the possibility that you may have been infected by a tick with Lyme, and possibly one of the possible co-infections that a tick bite can cause.
In the almost 6 years I shuttled among specialists, not one of the rheumies or neurologists I saw looked beyond the initial negative and equivocal Lyme tests I had. Nearly 6 years later, still very sick, I met by chance someone who urged me to pursue the possibility of Lyme Disease. I didn't even believe her at first! I was finally properly diagnosed, and have dramatically improved on treatment.
I now have my life back -- and hope for a future I thought had been taken from me.
I understand your frustration. I was younger than you, and also very active, with every hope of a bright future, when I was struck by debilitating symptoms.
Keep reading on this site and others: have you seen some of the Newbie Links posted by Treepatrol at the top of the Med. Questions? Educating yourself is one of your best avenues to getting better.
So, I would seek an app't w. an LLMD for an evaluation ASAP.
If you get resistance from any of your doctors, it's fair to tell them that the CDC regards Lyme as a clinical diagnosis and indeed ASSERTS that the CDC's own testing criteria (which labs use routinely) should be used for surveillance purposes only, and NOT diagnosis. Any doctor should respect a patient who wants to explore all avenues in the quest to be well. Your wish to pursue all possible avenues for proper diagnosis and treatment should be respected.
All good wishes to you! Posted by ABar95 (Member # 8415) on :
Alright, so I am now on the waiting list for a LLMD in NC, what to do in the meantime though. Do I still go to the neuro and rheumatologist appointments. I feel like cancelling everything and just waiting until I see this doc, and then again I wonder if I should follow up with them. Although, I am sure the neurologist will want to do all sorts of testing, including nerve conduction.
Posted by vachick (Member # 8353) on :
I am sure my answer will be unpopular but before I give it let me put my viewpoint into perspective.
I started having symptoms 15 years ago. It took 7 years and 10 doctors before I was diagnosed with Fibromyalgia. Within the past three years, I have had God-awful gastrointestinal and neurological issues that have sent me to the ER four times. I have been through four Gastroenterologists and three Neurologists and none of them have figured out the problem.
I am giving you this background so you know that I absolutely know what it feels like to go to Ducks and get no answers. I know what it feels like to think I am dying of some mysterious and rare disease.
HOWEVER, I think it is worthwhile to go see these doctors just in case there is something that they find. Lyme may be the cause of it and Lyme may not be the cause. But, if you don't go and it turns out there is something wrong, it will do more harm than good.
If they do find something, it is worth questioning the ROOT CAUSE of the problem. This is the important part that most doctors do not get. If the neuro finds nerve problems, you should bring up Lyme as a possibility (or at least think it in your mind).
You can bring the information/results from the rheumy and neuro to the LLMD...that will help him/her immensely. What kind of doc is your LLMD? Mine is an Internist and I am about to see another one who is a Rheumy. Maybe you can get "two in one"?
I know mine is not a popular opinion because we don't trust Ducks (myself included); however, I think it is worthwhile to go and get some testing done because whether the tests are positive or negative, that is information either way.
Please withhold the rotten tomatoes fellow Lymies... (cowering in the corner)
![[Smile]](smile.gif)
. I suggest you read the DR B docs that Tree attached above. ![[Wink]](wink.gif)
] for peace of mind, then do it. Just keep in mind you are losing precious time. By the way, a spinal tap is NOT the way to test for Lyme. They are only 20% accurate in finding Lyme. Your neuro will vehemently deny that!