I am new here and am trying to figure out if I do indeed have Lyme. I have been tested with the Western Blot many times with negative results however symptoms after a surgery have worsened and I am suspicious of Lyme. I have never had a rash or have any evidence of a tick bite but I do live in CT and spend a lot of time in the woods. Here is a long list of my symptoms and they have progressively gotten worse: Dizziness Weakness (legs, arms, and hands) Difficulty writing, dropping things Blurry vision Shakiness Severe brain fog Vibration in head/feeling of pressure Headache Exhaustion but unable to sleep well/insomnia Tightness in throat and neck muscles Nausea Loss of appetite Extreme weight loss (was 115-120 am now 104) Hearing has changed, sounds like a tunnel Seeing spots/lines Sensitivity to light, noise, smell (metallic) Off balance Oral thrush Heaviness in head and body Heart racing although low blood pressure Burning under skin sensations (face, chest, arms) Unable to concentrate Ringing in ears Hot flashes Numbness and tingling in face, arms, and legs Dry cough (months) Cold all of the time (months) Chills (months) Heart palpitations (months) Low grade fevers (months) Shortness of breath (months) Feeling of being unwell, not wanting to do anything but lay down (months)
I know that these symptoms can definitely mean Lyme but I can't find a doc that will help me.
Pelase help, I am 32 years old and a mother of an 11 year old son. I have had to take short term disability from work because I am so sick.
Thank you, Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
posted
Please arrange to see a LLMD. Lyme is a clinical diagnosis first and foremost. Have you seen any doctors that would at least prescribe some abx to see if you react to it? Negative serological tests dont indicate you dont have lyme.
The fact that your symptoms worsened after surgery may be an indication that your immune system is low and you're fighting something, whether it be lyme, or another virus.
Please see a LLMD so you can get a proper office diagnosis and more accurate serological testing for lyme, coninfections and other possible virus, etc.
Posts: 514 | From . | Registered: Apr 2008
| IP: Logged |
Thank you for your response. I am having a hard time finding a LLMD in my area. I live near Hartford CT. I am so scared and worried about what this could be.
Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
posted
Jenny, I was sick for about 1 1/2 years prior to dx. For the final 4 months, I was basically bedridden. At that time my son was 8, so you know how sick I had to be in order to be unable to meet a personal responsibility like that....
While trying to dx the illness, I had full ID, MS, Lupus, cancer, RA, & many, many other investigations, including TWO spinal taps, multicple CTscans, buckets of blood work, nerve tests, etc. etc. etc. Including of course many, many tests for LD. EVERYTHING was negative.
My LLMD was my 'last stop'. Because everything else had been so thoroughly investigated & ruled out, he felt there was a strong possibility that LD or related were to blame. He gave me a prescription for doxy. Imagine me rising from the dead in about two weeks, after about 4 mos in bed. An absolute miracle.
I was very, very quickly about 50% better. None of my WBs has ever been 'CDC' positive, although as I've gotten better, more and more +, ++, and +++ bands have shown up. My doc felt comfortable making a clinical dx for me based on differential dx plus my incredible response to abx. I'm now about 80 - 90% in most things. I cannot tell you how sick I was.
Get your symptom and test history together & get to an LLMD. Hopefully you will be one of those, like me, who will respond to abx.
The biggest thing is to learn not to 'require' absolute proof via tests for yourself. That became easier for me because of how sick I got, yet how many 'nothing wrong' test results I had. It was impossible for everything to be 'fine' but for me to be bedridden. Eventually, therefore, I realized there had to be something wrong or missing in the dx technology. I've been able to get to and stay at that understanding mentally also because I experienced the miracle cure for abx. If I can shortcut that realization process for you in any way, I'd be so happy.
Best to you, Jenny, get right on it, sadly this can get even worse -
onthemend
P.S. I'd never taken any regular drugs/medication before in my life, it's not something I like or agree with, but it saved my life
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
posted
Thank you everyone so much. I just contacted the person that 22dreams gave me the info on and am awaiting a reply. I cannot understand how all of my bloodwork could come back negative and I could still be positive. How does that happen? Also the treatments are scary as I have a hard time even taking a tylenol without getting symptoms from it. I can't even imagine what antibiotics would do to me. I hope that there is help for me and I hope that I could get better. It seems to me that my neuro symptoms indicate that I have been sick for a while...is there hope?
Thank you so much everyone, Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
posted
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.
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: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
Dr. Bransfield's Reason's for Seronegativity ( the reasons why you can test negative and still have Lyme disease
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Jenny,
We know how frustrating it can be to have lyme. The tests are not always reliable and a good lyme doctor will diagnose you based on symptoms.
I never had a tick bite myself.
Here is a another link that describes why lyme tests can fail.
posted
Thank you everyone!! I have made an appt with a LLMD and he will see me Dec. 1st. I wish it was sooner as I feel that I am going downhill quickly.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
posted
If he recommends abx, Jenny, give it a try.
I don't know your whole history, but you may be at the point I was when I started treatment without a truly 'CDC' positive test - what do I have to lose? It just can't go on like this . . . particularly thinking about my young son made me willing to try.
And it turned out to be the answer.
Definitely I had ups and downs on the abx, but I really don't think there was even a second when it wasn't a clear positive trade-off for me (some tough herxes vs. actual brain infection and continued drastic downward slide across ALL measues of health!).
It sounds like you have gotten that sick, so hopefully you will know if abx treatment is having an effect - I had a quick, striking feeling of positive internal change (even though they weren't always immediately evidenced symptom-wise) that was so very different to the pre-treatment feeling I had of rapidly/drastically deteriorating overall health. I did have major backslides at six weeks and again about 4-5 months into treatment, and then more minor backslides every now and then since, but it can never compare to my pre-treatment horrible sickness.
I think you'll know.
Good Luck and I'm keeping my fingers crossed.
Dec 1, while not immediate, is not toooo long to wait. In the meantime, get your symptom history and test history/results together. It can really help an experienced doc paint a picture.
Best -
otm
And, p.s. I should have mentioned my original symptom list would match and even raise yours! You do sound like my case, that's why I posted here initially -
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
posted
Well the LLMD called today and said that he has a cancellation on Monday the 24th so I am THERE! I hope that he is a good doc. At least I will get the Ignex (spelling might be wrong) testing that I need from him and then I can go from there. He said that depending on my symptoms he is willing to treat before test results.
We shall see. Thank you everyone.
Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
I can't even imagine what antibiotics would do to me. ![[Frown]](frown.gif)
I hope that there is help for me and I hope that I could get better. It seems to me that my neuro symptoms indicate that I have been sick for a while...is there hope?![[Smile]](smile.gif)
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic