posted
In June, I had a large red bite on my temple. Didn't look like a bullseye...Went to ER because I had bad headache and neck pain. I was told it was Shingles.... Since then, I've had very weird things happening....Weak arms, legs, pins and needles, muscle twitching, hands shaking, numbing in face..body movements...swollen lymph node above collar bone. Have been to 2 nuero's, had EMG which showed PARASPINAL DENERVATION, that scared me.Finally the neuro sent for bloodwork, Lyme showed up with a false/positive result, 0.15....High WBC 15.1...high absolute neutrophils, and lympocytes. Was put on Doxy 100 mg once a day for 3 weeks, had Western blot on Friday.....PLEASE SOMEONE HELP ME I'M SO SCARED.....I ALSO REMOVED A TICK FROM MY LEG 2 YEARS AGO....NO BULLSEYE AFTER...NO FEVER....NO SYMPTOMS....COULD THIS BE LYMES DISEASE....
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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posted
Why are they calling the Lyme test a false positive? A positive is a positive!!!
100mg of doxy per day is WAY TOO LOW to do much of anything for Lyme. Most drs prescribe 200mg and that is way too low in my non-medical opinion.
I've been on this board for 7 yrs and I know what happens to patients when the dosage is too low. The disease remains!
Yes, your tick bite from 2 yrs ago could be a big factor in your recent illness.
Keep reading and begin your search for an LLMD. Go to Seeking a Doctor and ask for help finding one. Your regular drs know nothing about this disease.
You also need to be checked for coinfections like bartonella and babesia.
The best lab to use for Lyme testing is Igenex Lab in CA. www.igenex.com
===================== 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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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map1131
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Member # 2022
posted
Erin, a false positive is what we like to call just alittle bit positive and pregnant. I'm sorry to say you should find a LLMD, a lyme literate doctor to help you with treatment.
Your symptoms and story reads like thousands I've seen on this site since '02. But a good doctor will also rule out of possibilities.
Take a deep breath and relax. You are going to be okay and understand everything happening to you with a good doctor and some more reading and research on your part.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
You are definitely at a cross road right now. One that mainfests great fear. Rightfully so. Just know you have come to the right place and there are others too, for support through the next few weeks.
You ordered your Western Blot. That is a great first step. I hope your test is going through Igenex?!?! If not, you may consider a 2nd one asap to go through there.
In the mean time, insist that your Doxy level be increased. (In my opinion only! I am not a dr, so please do not take this as medical advise, only that I would do this if I were in your shoes!) you should have results in the next few weeks.
Take a few deep breaths, enjoy the sunrises and sunsets, do what you feel up to doing and give yourself a break!!!! Know you are not and will not be alone the next few weeks and come on here, post in General Support section if you need to vent or get out emotions. If you have medical questions, come here in Medical and post. You are heard!!! You are not alone!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Elizabeth,
It could be lyme disease -- please be sure to see a lyme literate doctor soon.
I know, it is scary, but please realize that tick borne diseases are highly treatable; but it is important that you see the right doctor. Most doctors are not knowledgable about tick borne diseases like lyme, and that is why you need to get the name of a lyme literate doctor.
Best wishes and please keep us posted!
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
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Member # 7136
posted
SOunds like Lyme to me- WELCOME*)!*)! !*)!*)!*)!*)!*)!*)!*)!*!)*!)*!)!*!!!
Go see a real LLMD and get some help!!! best wishes, Sarah O.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
p.s. it could also be something else or another TBD that oyu got in that bite 2 years ago- besides Lyme tehre is Babesiosis and Ehrlichiosis aka Anaplasmosis and more than one kind of each- ask your doctor to test you for-
babesiosis HGE Ehrlichiosis HME Ehrlichiosis
Demand it!!! And if he doesn't know what they are he has just proved he knows notihgn re Lyme eitehr!!! But also get to see a real Lyme doc!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Does Lymes get worse with the wheather?? I feel so ill today. No pain, just very weak.
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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posted
My anxiety level is going through the roof...the depression alone is scary...
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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posted
Yes my symptoms would exacerbate in bad weather, rainy gloomy days too. And anxiety, depression, yes, yes, yes!!!!
It took me a long time to deal with the anxiey issues. I actually went through a program for it. Once I did some exercises and realized what I was also doing to myself in the course of the attacks, I learned how to keep them at bay.
Notice I said at bay and NOT gone!!! HMMMMMMMMMMMMM.....
The first thing I did:
as soon as one was coming on, I got pen and paper. I wrote down EVERY crazy thought that was gonig through my mind at the time it was gonig through it. It wasnt easy but I did it.
sometimes I would go back to it and couldnt even read what I wrote, but I did it anyway. i kept doing this everytime.
After I would get to the other side of the attacks, I went back to them, when I felt more stable, more sane
and I learned what it was in the midst of these attacks what was taking me to the next level...my thoughts.
So I learned MYSELF in them, if you will. How I was responding to them.
I would take my lists each time and go back trhough them and ask myself is this TRUE or FALSE. There was NO GRAY AREA allowed in them - either true or false, period.
After about 2 months, i noticed I was kinda reprogramming myself. And these thoughts would pop up and my internal responder that I was "training" would kick in a bit - NO NO NO Thats false!!!! And then I could start talking myself down a bit.
"I am going to die!!!" OH!!! NO THAT FALSE! BEEN HERE ENOUGH TIMES NOW I KNOW I AM NOT GOING TO DIE! NOW BREATHE!!! And i would take a few deep breaths with my eyes closed....
Sometimes I would tell myself to get up and walk. Even if I just walked in circles and I would repeat a mantra in my mind while breathing. It has to be something that you believe in, you can easily find your own....
All I can say is about 4 months into this my panic attacks virtually stopped peaking out at 9-10's and would only get up to about 3-4's. From there I kept implementing the process and now only get them once in a blue moon because I know what to do the MOMENT they start kicking in.
All I can say is it works!!!!!
Try it! You'll like it!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, these symptoms that you mention are classic lyme disease.
Hang in there, you will get better with proper treatment! I hope you can see a doctor soon. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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I don't know if you have Lyme but it should definitely be considered.
The one problem I noticed here is that if you were tested right after you were bitten, then the ELISA and Western Blot will probably show a negative because you would have been tested too soon.
It takes the body a few weeks to produce antibodies and that's why they recommend testing at 3-4 weeks after being bit by a tick.
The red bite or rash would be enough to diagnose Lyme, if it is indeed an erythema migrans (EM). The CDC does not recommend Lyme testing if you have an EM. It's actually a better indication of Lyme than even a positive Lyme test.
Your symptoms are included among the list of symptoms for Lyme. It could also be something else, but Lyme shouldn't be thrown to the wayside just because your tests indicate a false positive or a straight up negative. How does one come away with false positive anyway? Is this when the ELISA is positive and the WB is negative?
Lyme should be diagnosed by looking at the whole clinical picture. Lab tests should NEVER be used as the sole basis to rule in or out Lyme. This should be common knowledge for physicians, but unfortunately it's not. The CDC would tell you the same thing...that Lyme is a clinical diagnosis and should not be based solely on a lab test.
If the doctors can't find anything else wrong, then you may have to convince them to take a look at Lyme again because it is a CLINICAL diagnosis.
If it's Lyme you may very well be in the chronic stage, which is exponentially much more difficult to treat, but you may not be. So the sooner you can get treated, the better the prognosis. Again, this is IF you have Lyme.
Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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I think I was bit in June, I was tested 3 weeks ago. The level of antibodies were 0.15 the range is 0.90-so the Dr. said it was borderline. My WBC were very high and other levels as well. Do people get better with Chronic Lymes?? I hate this, I just want to feel better. My hands are not working...my tongue feels funny....I'm calling a Dr. tomorrow that was recomended by someone on this site. He treated my friend for Meningitis, saved her life...What else could this be? It all went downhill after I had that big red bite on my temple....
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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What are the symptoms?? The things that bothers me the most is that my hands feel funny...they feel so weird
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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Oh ok, I thought maybe you were tested right away. Keep in mind, though, that Lyme testing isn't very good. That's why Lyme disease is made or should be made based on your symptoms and physical findings. Lab tests just help support a diagnosis, but should not be the end all for diagnosis.
The other important thing is where you've been geographically. I see that you're from NY and NY is highly endemic for Lyme. It's one of the 10 reference states for Lyme disease. What I mean by that is that there are 10 states that make up about 89-90% of the Lyme cases in the US and NY is one of those 10 states.
Your symptoms also mimic multiple sclerosis. But I have to tell you that there are doctors that believe a large majority of MS patients may actually have Lyme disease...or that MS may actually be Lyme disease. Lyme has many of the same clinical findings as MS...lesions on the brain & spinal cord, oligoclonal bands, protein in the CSF etc and that's what makes it difficult to differentiate between the two, if there's even 2 separate diseases here.
I think the most important piece of info you provided was the large red bite on your temple. That taken with the symptoms you're having and if you were in NY at the time this bite was produced, should lead the doctors in the direction of at least looking at Lyme disease.
How did the doctors come up with shingles? Did the bite look like a bunch of blisters? Mayoclinic.com says that the red rash from shingles comes AFTER the pain. Either way your symptoms could be caused by Lyme. Considering where you live, the doctors should automatically consider Lyme.
I also want to point out that the rash or EM for Lyme is not always going to look like a bullseye rash. If you search online for pictures of erythema migrans, you'll see many differnt views.
I think there are many good doctors out there, but not many who are familiar with the complexities of Lyme disease. Is the doctor you're going to call an LLMD?
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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tailz
Unregistered
posted
quote:Erin, a false positive is what we like to call just alittle bit positive and pregnant.
She's right! How could they call your Lyme a false positive?
I'd google microwave sickness, too, though. I think they work hand in hand.
And very few of us just have Lyme. It took me treatment for babs and a whole year to turn positive for that one, and I'm still negative for bart, but I am sure I'm housing that bug, too.
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posted
The Dr. was referred by a member from this site.
I had NO pain with the shingles, the rash came out on a Monday...on Saturday I had a bad headache and neck pain. It looked like a Mosquito bite (BIG ONE).
The Dr. I'm going to call has Lymes himself.
I had a brain MRI in August, came back normal.
The two neros I went to see basically told me that I suffer from Anxiety, and this is what it's from....
I know my body..and something is not right!!!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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quote:I know my body..and something is not right!!!
Same words I used for 8 1/2 years before I was diagnosed!!!!
Dont doubt yourself and dont stop til you figure it out!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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My rash was not a cluster of blisters, It was one large red lump....on my temple. It didn't itch....
The first dr. in the ER (in Jersey) said it was a spider bite or something....2nd Dr. in Staten Island said Shingles...that puzzled me though...I know you have severe pain with shingles...I had none. After I left the ER I still had the pain in neck...the next day I swore I had meningitis because of the pain in my neck. The funny thing is, I had to tell the Neuro to test me for Lymes. It wasn't even a thought in his head. Some Dr. make me really mad!!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
One large red lump can be caused by a kind of tick- a soft tick- here it is on the top of a page for ticks of California- and it shows one of the characteristic welts that can be at bite site-Look at this page!!!
LOOK at the bite picture and imagine it without the scab??? Could it be??? The welt can be larger than in pic-
This tick carries a spirochete-like organism which has yet to be identified but is associated with bovine abortions and sickness- (can you say newly emergent pathogen?)
Some RF ticks can also cause welt like marks like this- RF stands for Relapsing Fever borrelia, cousins of Lyme-
best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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EM's can look like spider bites too. It's not always a clear cut bullseye unfortunately. I wish it were and I wish it showed up 100% of the time because then we wouldn't have so many people running around w/all of these misdiagnoses.
As for feeling worse on Doxy, chances are you could be experiencing a herxheimer reaction, which is very common during Lyme treatment. It could also be an allergic reaction. So, if what you're experiencing becomes too severe or you're unsure, then definitely contact your doctor.
New Jersey is also a reference state for Lyme disease. I can't believe in 2007 that any doctor in NJ wouldn't consider testing for Lyme with your kind of presentation! And what irks me even more is when these doctors can't find anything clear cut, they want throw anti-depressants at you guys! I don't know if it's ignorance or laziness or both! I mean since when does anxiety cause swollen lymph nodes w/elevated WBC's?
When we lived in NJ back in 1993, my mother was tested for Lyme when she showed up at the hospital with tightness & tingling behind her neck along with being unable to walk, but because it came back negative, they just ruled out Lyme - just like that! She ended up being diagnosed with MS and for 13 years she thought she had MS. She found out in 2006 that she has Lyme disease! I don't want to scare you because my mother is much more devastated than most Lyme patients, but she's now bed bound with a trache in so my dad can suction her lungs. Her diaphragm muscle is pretty weak.
You're definitely going to have to be your own advocate. I really hope this doctor that you were referred to can get you some clear answers.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Erin...You've gotten some really good advice! Don't forget...it's LYME, not lymes.
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by Elizabeth Erin: I will not stop!!!
I will get the answer I need. I'm 32 years old, I shouldn't feel like I'm 92.
That's how I felt when I started treatment!
I notice though, since being on the Doxy...I do feel worse.
I'm on a quest to get better....
Elizabeth, that can be a really good sign actually, that you feel worse on doxy! As Soleilpie mentioned, killing off the bacteria creates a 'herx' reaction. So feeling worse can be a sign that the treatment is working as it should.
It always helped me to take doxy with food, much easier on the stomach.
Hope you see a good lyme literate doctor soon! Feel better and keep us posted.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I can still walk No memory loss My gait is off
I can still grab things and hold them
Just a stiff tight neck-can move it-cracks alot
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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AliG
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Member # 9734
posted
I'm not far from Jackson. Get tested for Babesiosis IGG/IGM. I had it along with Lyme & it can mess up your WB testing. My next door neighbor had it as well, so it's definitely a cause for concern here.
Babesia takes down the immune system and the Lyme tests are based on your antibodies.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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map1131
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posted
Erin, I know all about the hand thing you mentioned. I remember 7 1/2 yrs ago sitting in front of my doctor telling him that something was attacking my hands. I could feel every bone, joint and even my fingernails were painful.
Of course there was a list of many other weird things going on in my body. I knew that something very very bad had attacked my body.
Yes, no 32 yr old should live life feeling like they are 82, and you won't have to. It can and will get better.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Elizabeth- the NEGATIVE western blot does not mean much. You have to get a blot from Igenex labs only. You also need the Igenex results interpreted by a lyme doctor only because it's about what bands you react to and not necessarily the lab's report of negative or positive. A lyme doctor will know how to properly interpret your Igenex western blot or you can read other postings about this on here.
If your western blot was not done by Igenex or a lab specializing in lyme, it doesn't mean you don't have lyme. You likely do since you got a positive before and your symptoms fit like a glove. I had a blot by the mayo clinic come back negative but the Igenex blot showed a lot of bands specific to lyme.
Please heed the advice of all here and get a western blot from Igenex labs and make an appointment with a lyme doc right away.
You will have answers, lyme is treatable, and you WILL get better.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by AliG: I'm not far from Jackson. Get tested for Babesiosis IGG/IGM. I had it along with Lyme & it can mess up your WB testing. My next door neighbor had it as well, so it's definitely a cause for concern here.
Babesia takes down the immune system and the Lyme tests are based on your antibodies.
BREATHE ERIN!!!!!
Get to a LLMD. Post for one in "Seeking a Doctor". Get tested for co-infections.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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What bands showed up on the Western Blot? If you don't already have it, ask your doctor for a copy of it.
Labs in general follow the CDC guidelines when determining if a Lyme WB is + or -. The CDC guidelines are: For antibody IgG: they want 5 out of 10 bands For antibody IgM: they want 2 out of 3 bands
IGenex will test for more bands than the CDC does and they will list your results using their own guidelines AND the CDC guidelines.
The important thing to keep in mind is that just because your lab came back negative doesn't mean that it's negative. LLMDs are more concerned with what bands actually showed up, not the number of bands that showed up. That's the main flaw in the CDC guidelines. A couple of the bands are specific only to Borrelia burgdorferi or Lyme disease, whereas, some bands are not highly specific. The CDC does not take into account which bands are specific or not. It only cares about how many bands show up. I hope I'm not confusing you.
The other important thing to keep in mind is that Lyme testing isn't very accurate. The spirochetes or bacteria aren't always free flowing in the blood but in other tissues like the heart muscle, the synovial fluid of the knee, in the brain etc. If that's the case, the lab test may not detect any.
I also want to point out that a positive Lyme test doesn't always mean a positive either. That's the unfortunate thing about Lyme testing. The tests are not very good. Testing done through IGeneX is probably the most accurate, but it's not foolproof.
As mentioned before, lab results should not be the sole basis for making a diagnosis for or against Lyme. It should not be the end all for that decision. The main decision needs to be made by looking at the entire picture. That's where many physicians go wrong. Many of the people on this board had a negative Lyme test.
An LLMD will not make his/her judgment solely based on a lab test.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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I was told by my GP there is nothing more he can do for me...I have to go and pick up my results....
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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It's unfortunate that your GP is letting the lab test make the decision for him. But it's probably for the best. I only say that because he's obviously not very familiar with Lyme disease and you would be better off with someone more experienced. And I don't want to imply that you do have Lyme disease, but based on the info you've given us here, it warrants a serious consideration. A lab test isn't enough. When it comes to Lyme it's the worst way to make a determination one way or the other.
If everything medically has been looked into and nothing concrete has been determined and you believe that Lyme may be what's ailing you, then it can't hurt you to contact an LLMD. If you do have Lyme, then seeing an LLMD is your best shot at getting better. Were you able to contact the LLMD that you were referred to?
Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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I'm so upset right now. As soon as I get the results, I will post them so you guys can help me read them. My WBC level went down to 11.5..still a little high. He also said that the swollen node above my collar bone should go away with the DOXY....uh...hello....it's still there as big as 3 weeks ago....He admitted that he isn't very familar with Lyme....Christina, I will not stop till I get answers.
I will not let them brush me under the carpet like I'm an anxious mess...not happening!!
HE chalks the lil' elevated WBC to a cold-oops no cold here....
I asked to have the results faxed to me, and his asst said no-you have to pick them up...whatever!!
I have lots of the symptoms...
It's so funny that this all happened after my "shingles"....what a joke..
He said I have FIBRO??? Yeah ok!!
I will keep you all posted.
I'm glad to have found this site!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema.
BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Hang in there. Post them when you get them in hand. How long on Doxy now? After 3 weeks you can stop for 10-14 days and have a WB through Igenex. See what that says. in the mean time
get an appt lined up with a LLMD just in case. That will give you the time to be ready with your results too.
Have you ruled any other possibilities with your GP? Sorry i didnt get through everything you have posted so if a repeat, dont worry, skip on by, just checking!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Can anyone that can read these bands accept a scan from my personal email....from work...
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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I've been reading your story the last couple days.
Are you taking anything for the anxiety. That was one of my terrible symptoms. Everything else was MUCH worse due to the anxiety.
My anxiety (and a horrific panic attack) was due to Lyme back in July & early August.
I did start taking Zoloft but continued to agressively pursue a diagnosis of Lyme ('negative IGeneX but 18+, 31/41 IND, 66++). First doc said "he can't do anything more for me". Well I insisted and the other doc at the clinic took on my case.
They just want to send us on our merry (ill) way!
Don't ignore the anxiety - it can really wreak havoc on you. Nothing wrong with "treating" it while you get to the underlying problem.
Definitely post your WB positive/IND bands on the forum - lot of great people here to give you advice.
Keep taking Doxy!! Insist on more from your GP while you find a LLMD to take on your case.
I know you said your hands bothered you. I've had a numb feeling on the top of my hands that just drives me crazy. I'm not truly numb, it just feels that way? Like taught/tight skin from a sunburn? I also have a numb scalp most of the time. Lots of other stuff...
Freaky!! So many different, odd symptoms we all have, yet we all share something in common.
It's awful to feel sick, panicky and depressed. Take it one day at a time - you'll get through it. At least that's my strategy lately.
~megan Posts: 257 | From Connecticut | Registered: Oct 2007
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I'm not taking anything-besides Xanax 0.25 mg to calm me down. I've taken Lexapro, but had horrible side affects. I have a script for Zoloft but I'm afraid....
CAN SOMEONE PLEASE TELL ME IF PARASPINAL DENERVATION HAPPENS WITH LYME???? THAT IS BOTHERING ME THE MOST!!!!!
I need to treat this and fight it!! My hands just feel like they're not working correctly.
They shake like crazy first thing in the morning...
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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I'm not sure about paraspinal denervation (new term for me). I do know that many people are told that have all sorts of conditions and sometimes Lyme is the real cause.
My experience with Lyme has been mostly neurological. I get quite a bit of "vibrations" which feels like shaking under the skin. Mostly forearms, legs, and down my spine.
Sometimes I really am shaking although it's subtle even though it feels like a lot. Mostly in the morning.
Other times it's just the sensation of shaking, meaning my nerves are feeling something that isn't happening.
I had a panic attack one night where I actually had limb flinching all night.
Morning can be the worst for Lyme stuff because overnight your body is fighting the Lyme and bacteria is being killed off releasing neurotoxins in your blood. Result is sometimes physical reactions.
My point is Lyme loves the central nervous systmes and can wreak havoc on your nerves in all different ways.
We all experience things differently.
All of my things can be called "neuritis" I believe, which is inflamation of the nerves.
You need to pick up your Western Blot and take a look at what Bands were positive or IND (+-). Don't ignore the equivocal bands, they're important, too.
If you do an IGeneX test you'll want to get off Doxy for 2 weeks, then get tested. Costs around $450 but it's well worth it if it tells you what you need to know about Lyme exposure.
My doctor told me to take a hike, too. The other doctor at the clinic, however, was much more interested in my case and is now treating me. He's seen more Lyme.
Find another doctor! There are some nice ones out there. Don't be discouraged by one non-Lyme literate doc.
Let us know how you're doing today.
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Read the newbie links theres tons of info you will need to know also you have a really big chance of having coinfections along with lyme from tick bites.
Find LLMD and sart treatment soon the sooner the better.
Lyme can and dose effect everyone with some differences some have a hard time getting rid of it and others treated appropreatly 6weeks worth abx at least get rid of it soon it alos mimics thousands of diseases because it attacks nerves causes inflamation and attacks organs cartilage tendons,mylene, etc it infects the whole body and it reproduces totally different than other bacteria it can Lforms, bleb, cyst up,coccoid forms,it takes on our immune system directly and indirectly,it can where our protiens to hide, it can enter our immune cells,it can do just about anything it likes it doesent require oxygen,it dosent require iron, its a ver stealthy predator better than a normal parasite,or bacteria. But It CAN BE DEFEATED. So get after it and dont forget coinfections. Good Luck
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I need a LLMD that is located in New Jersey or Staten Island, NY....I feel like time is running out before I have a breakdown!!!!!!!!!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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posted
Denervation - yep, have that in my right leg - peroneal nerve/muscle area. TERRIBLE PAIN!!!!
Post request in Seeking Doctor if you havent received PM replies on this one.
Dont think Quest is a great lab for this!!! It is worth the extra out of pocket to be SURE or as most sure as you can be with the testing available.
I posted antoher topic on the C6 LPT (?) testing, but no takers or responders - dont know the validity on it at all. If anyone does, please add under that post.....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Have a appointment with a highly reco dr. from Jackson, NJ.......Dec 11th and one on SI on 11/28..I will go to both if I have to!!!!!!!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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LYME DISEASE AB W/RFX 0.36---RANGE 0.90 LAST TEST THIS WAS 0.15
HIGHER???
58 KD (IGG) REACTIVE 23 KD (IGM) REACTIVE
What does this mean????
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Off the top of my head 23 is specific for Borrelia Bergdorferi (Lyme spirochete). I don't recall 58 off hand, I'm sure someone else will.
It means get yourself an LLMD post in "Seeking a Doctor".
So sorry. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
So... Those can be very significant since they are "Lyme-specific"...
Was this a test through Igenex??? If not, then you will likely have more bands show up on the Igenex test because they test for all possible bands.
================
Quest????
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Tutu- AB = Antibody
Please get checked for Babesiosis Antibody as well.
PM sent
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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