First, Hi! Second, sorry in advance for this being so long. I think I might have Lyme - not sure. It could be something else. I realize that some of these could be caused by both the untreated subclinical hypothyroid issues and others by the untreated adrenal fatigue issues (my current drs don't think either are bad enough to treat). But anyway...
My symptoms are as follows: Abdominal cramping, sometimes severe Acid reflux (GERD) Acne, especially around chest and jawline Cold hands and feet Constant sinus congestion Cystic breasts ovaries and cervix (PCOS) Elevated mercury Eyelid/muscle twitching Fluctuating between constipation/diarrhea Food intolerances (gluten, corn, dairy, sugar) Frequent urination Headaches (sinus, tension, migraine, icepick and combinations) Insomnia (trouble getting to sleep, wake up at obscene hours of the morning) Intolerance to heat and cold Long heavy painful menses Low body temp (usually run around 97.4 or lower) Mulitnodular goiter Night sweats Nutritional deficiencies (iron, b1, b5, b12 and folate, vit D) Pain in hands, especially when exposed to cold Pain in mid back on right side, not muscular Palpitations after eating Periods of severe fatigue Plantars fasciitis Puffy fingers "Seasonal" perimenopause-only hits in fall/winter, the rest of the year, its fine. Skin tags Snoring Stiff and "crunchy" neck Stomach cramps, sometimes severe Thin brittle nails with ridges Tinnitus Unintentional weight gain/loss, sometimes as much as 10lbs in a month, either way.
Mental symptoms: Anxiety Attention span? What attention... Oh look! A chicken! Brain fog Comprehension difficulties Cry at anything Depression Disorientation when driving Forgetfulness Irritability Long/short term memory loss OCD/Trichotillmania Zero libido
Not sure what else you need to know. So far, my docs have been doing a sort of hit-and-miss method of testing. The only antibodies I've been tested for have been thyroid (TPO and Tg) and both were in the negative range. To be honest, nothing really stands out on any of the standard blood testing I've had, other than the nutritional deficiencies, which are being taken care of.
Do you think its worth while finding an LLMD in my area and getting tested for Lyme? I ran lyme past my GP and she kind of blew me off because I don't have unexplained fevers or chronic joint pain. I've had more tick bites than I can count. None of the usual rash that I've noticed, although its taken the bites about 6 weeks to heal and they itch like crazy the entire time (this is from the 2 I had this past summer from deer ticks). I've had symptoms of "something" since my teens which was when I first started noticing things weren't right.
At this point, I think I'm either losing my mind or becoming a hypochondriac. Any points in the right direction would be greatly appreciated.
Thanks in advance! Posted by Raiden Kitsune (Member # 14125) on :
Well, I'm no expert, but you have a lot of classic signs of Lyme. A lot of people don't get the joint pains, so I'd definitely try another doctor if yours is saying you can't have Lyme because of that. You said you get a lot of tick bites; that's more than enough reason to suspect Lyme right there. Definitely get tested as soon as you can.
Posted by Vermont_Lymie (Member # 9780) on :
Yes, it is definitely worth your getting an appointment with an llmd and being evaluated for tick-borne diseases!
Many of the symptoms that you have and list here can be caused by lyme and other tick-borne diseases (in fact, they are classic!).
Unfortunately, most doctors are very ignorant about lyme -- and your GP's answers show that she is not knowledgeable about lyme disease. You do not need to present with chronic joint pain -- almost any subset of the symptoms you list can be caused by lyme!
Hope you will take the time to see an llmd as soon as possible, and my best wishes for your health.
Posted by CaliforniaLyme (Member # 7136) on :
WELCOME*)!*)!
If you don't have fevers then you may not have Ehrlichiosis or Bartonella (maybe*)! but there are plenty of people with Lyme who don't have that.
QUESTION: Do you think its worth while finding an LLMD in my area and getting tested for Lyme?
YES YES YES YES YES- and yes!! You could have LYme or another TBD, you could have something very different but a good Differential Diagnosis should catch it. Nice to meet you!!! Best wishes,
Sincerely, Sarah
Posted by Curiouser (Member # 14128) on :
Thank you all!
So I might not really be going crazy after all? Not sure that's a relief, but its a step in the right direction anyway.
My docs have pretty much taken one look at me and placed me in the 4F category (fatigued, fat, female, and 40) and haven't looked any further. I've even had one doc (an endo) who told me that I was just "getting older and these things happen". *growl* Nevermind that some of this stuff started in my teens. They just pat me on my little neurotic housewife head and send me home. Can you tell I'm just a teensy bit angry? I'm so tired of bad docs, incomplete testing, and half-azzed treatments, I'm halfway tempted to walk into the lobby of the local hospital and scream "Who do I have to *bleep* to get a diagnosis?". Only partially kidding.
Ok, now how exactly do I find a good LLMD? Do I post over on the "find a dr" board or is there a list somewhere? I'm in southeast PA, about an hour north of Philly (near Pottstown). Is there someone nearby, or do you think I'll have to travel out of state?
Thanks again! Posted by bettyg (Member # 6147) on :
welcome!
yes, COPY your entire post and your reply to SEEKING DR. AREA.
IN SUBJECT LINE, PUT LARGEST CITY NEAR YOU..NOT PHILLY..IN SUBJECT LINE AND PENN.!!
ok, show the largest 4-5 CLOSEST cities near you in the top of your post BEFORE pasting your story there ok!
philly doesn't have much! PENN. state has MANY!
i just sent you a private message with my newbie package of info galore! skim it.
look for the DETAILED SYMPTOMS list of lyme, bart, babs, erlichia, etc.
have you had a sleep study done for sleep apnea due to your snoring? you might be surprised as i was! glad you found us.
also, post shorter paragraphs for us neuro lymies; we can''t read or comprehend long, solid block text. 2nd reply was a bit longer for example! Posted by meg (Member # 22) on :
Yep, all of us here have been there, done that!
Just go to the Seeking a Dr section of this forum, tell us a few symptoms you've had, how long, etc. and someone will help you pretty quickly.
Posted by Curiouser (Member # 14128) on :
Betty, Sorry about that. I have a hard time reading long paragraphs too. Keep forgetting to use the enter key.
Thank you for the newbie package! It looks overwhelming. How do you eat an elephant? One bite at a time.
Nope, never had a sleep study done. Nobody's ever suggested it.
There's a sleep center near here. Hubby's supposed to get a study done. Wonder if they give multiple patient discounts?
Thank you again!
Posted by Curiouser (Member # 14128) on :
Meg, Thanks! Posted by TheCrimeOfLyme (Member # 4019) on :
Tick bites + symptoms usually equals lyme. Make sure you post in seeking a doctor. Depending on what side of PA you are on, we have some LLMDs scattered around.
You dont have to have chronic pain or whatever nonsense your doctor blabbered out, in order to have lyme. All you need it what you got:history of tick bite.
Posted by Curiouser (Member # 14128) on :
Already done. Meg sent me a list and I'll be calling tomorrow for an appt.
Btw, there's a reason I refer to the GP as Dr Doofette. I swear if she actually had to dx anything, her head would explode.
Hmmmmm... *enjoing the visual*
Posted by bettyg (Member # 6147) on :
curiouser, i LOVE your sense of humor; you're going to fit right in here!
if you get on here BEFORE 8 AM EASTERN TIME, email SHEILA; see the letterwriting campaign from phyllis mervine FOR DR. CHARLES JONES FINAL HEARING 12-18 in conn; our no. 1 kids llmd nationnnwide!! **************
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TheCrimeOfLyme: Tick bites + symptoms usually equals lyme.
And the fact that you are in PA!!!
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.
Posted by Curiouser (Member # 14128) on :
Betty, Sorry, couldn't get into the site this morning. Just managed to get in now. I'm assuming folks will be posting updates on the trial?
Lymetoo, Thanks for the welcome. You know, that list would probably be a lot scarier if I knew what half that stuff was.
I can feel another steep learning curve coming on. Hope it comes with a hand rail.
Btw, I have an appt with Dr S in PA on the 28th! They had a cancellation. Yay! I might finally get some answers now! Posted by meg (Member # 22) on :
That's wonderful that the Dr got you in so early! Posted by Curiouser (Member # 14128) on :
Meg, I'm thrilled! Shocked! All that stuff. Expected to have to wait until spring for an appt.
I'd be doing a happy dance if I knew I wouldn't have to go and take a nap afterwards.
Another shocker - I talked to hubby about the appt. He's always been rather disinterested in most of my health stuff. Not only did he think it was a good idea, but I think he wants to go with me! Wow!
I don't have any answers yet but still, I feel like a weight has been taken off me.
For the first time in a long time, I have hope.
Posted by disturbedme (Member # 12346) on :
Curiouser - Welcome! I, too, love your sense of humor. And I think just about ALL of us know how you feel with your frustration with doctors.
I had a doctor who thought my only problem was nutritional deficencies as well. I had a few deficencies, not a ton, but I swear *everyone* would have some nutritional deficiencies if they were tested. I believed him at first, but after the vitamins were STILL not helping, I went back to him and he continued to tell me he thinks they will help eventually. Augh. I ended up calling him Mr. Vitamin because he raved about vitamins. I can't complain about him too much though because he actually did agree to test me for Lyme and even by IgeneX, so that was amazing. But I still got myself a great LLMD in the end. They are the ones who only really understand us.
But, I'm glad you found us. Posted by Curiouser (Member # 14128) on :
disturbedme, Thank you for the welcome!
Sounds like you and I went to the same doc. "If you eat right and take your vitamins, all your health issues will go away". Ummm...yeah.
The problem is that I do eat right and take my vitamins. And feel like poop! (no that's not a craving) In fact, since doing a lot of these things, I feel worse!
I have to give the guy some credit tho. He was the first doc in a long chain to at least look a little deeper than the surface. Even if he didn't connect the dots, through him, I found out there were dots to be connected. Dunno if that makes any sense or not.
I feel like I've wasted the last 6 months. If the GP hadn't blown me off for the Lyme testing, its probably something I'd have pursued further at the time. Serves me right for listening to her.
I have such high hopes for the LLMD. I can't believe my appt's in a week!
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