posted
Good afternoon! I am new to the boards and very exhausted from trying to figure out my mystery illness. I have seen several docs and got every test you can think of. Its been told to me that I have an anxiety disorder but I cant accept that. After listing all of my symptoms, it was suggested I get checked out for Lyme Disease. I did the Lyme Disease symptom check list, and I checked 27 sypmtoms. I know you all are not doctors but I am at whitts end here. I know something is and has been wrong and noone can figure it out! I reside in TN and thought LD was a little far fetched,however, I am huge into hiking, camping, fishing. I guess anything is possible.
Posts: 171 | From the land of oz | Registered: Feb 2009
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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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thank you for responding. That checklist was slightly different than the one I was referring to. I checked off 22 symptoms off that one mentioned below. Ok, so I called my pcp and asked about the test. The nurse told me it was very rare but they would test me for it if I really wanted it. She said she doesnt know the name of it but its a blood test specific for Lyme disease. Does anyone know if this is accurate or had it done? Ah,after going through this for 8 months I have come to the conclusion that most doctors guess just like we do. I have felt like I just have been dealing with idiot after idiot.
Posts: 171 | From the land of oz | Registered: Feb 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Jaimie B,
you really need to see a Lyme Specialist aka Lyme Literate Medical Doctor.
Lyme disease, even according to the CDC, is a clinical diagnosis. That means that it is understood that testing for Lyme - ALL testing for Lyme - is so inaccurate as to be basically useless. A recent Johns Hopkins study discovered that up to 75% of DNA PROVEN Lyme cases were missed by testing.
Your PCP may be a very fine doctor for general things, but Lyme Disease and the common infections that can come along with it (also carried by the same ticks) are very complex and best handled by the specialists in the field.
Please go to the Seeking a Doctor forum and start a thread asking for doctors in your area (put your general area in the thread title):
Someone will be able to help you and send you a private message (PM) with some doctor's names close to your area.
If you have Lyme, and signs point to likely possible, then you need to get diagnosed and into treatment quickly. Lyme can creep up on you slowly/for years and then completely debilitate you in days.
By the way, Lyme is in all 50 states, and is NOT rare. That is another topic - what you need to focus on now is finding a Medical practitioner that is knowledgeable and willing to treat you properly.
You also need to be aware that Lyme is rarely JUST Lyme, it is very common that if you have one disease from a tick or other Lyme vector, you can have others, like Babesia,, Bartonella, etc.
It's a serious disease and the sooner you can get into treatment the better your outlook can be.
We are here to help support you and give you tools and resources to get through this.
posted
Thank you for your reply nenet. You have me in tears because I am just ready for this to be over! I can accept LD, I just want an answer!! I am willing to drive to alaska if that means getting an answer! Thank you once again Posts: 171 | From the land of oz | Registered: Feb 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
JaimieB,
I can relate to you, sweetie.
I'm going through the same kind of crap, as are/have most of us on here. I too have "anxiety/panic disorder," since everything they test for comes back normal, including the worthless Lyme tests they did.
My doctors have put me on Zoloft, Xanax, and Lexapro (not all at once), and I have had severe reactions to all of them.
I don't recall having a tick bite or bullseye rash, so of course I don;t have Lyme.
But in my younger days, I was a hiker, and I was always spending time in the woods or mountains, and we always had animals. So who knows.
I agree with the others, find a LLMD as soon as you can, so you can get to the bottom of your symptoms.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hello JaimieB,
I'm so sorry to hear what you're going through!!! But believe me, keep reading everything you find on this site and I promise you you're not along.
You will find the answer and it really sounds like you do have lyme, and maybe some Co-infections.
Like everyone said before my note you need to find a LLMD as soon as you can; that's your first priority.
Your going to love this place, everyone is very nice and very helpful.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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I too am so sorry you are going through this many of us have. I am glad you found this website. It has been a great benefit to me.
I strongly suggest to go to an LLMD. Don't waste your money on any lyme tests unless it's done by Igenex lab. Some doctors will write an order for it but not all.
Igenex is more sensitive and runs the bands needed. It has a lyme test more sensitive than others. But even with Igenex they can be false negative. It is your best bet as far as labs go.
Good luck and do lots of research.
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Jamie~ Also get tested for HHV-6, EBV, chlamydia pneumonia and enterovirus.
They all can give the same symptoms as lyme.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - (author details at link.)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
(Unfortunately, The new committee they have set up does not have experts and still is very much an IDSA puppet.)
===============
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Jamie, I suggest you get tested through a laboratory called Igenex in California. The website is igenex.com
Go there, call and order a test kit and have it mailed to your house. The test itself is about 200 dollars but should help give you a much higher probability of getting an accurate result. The tests for Lyme Disease are not often enough by themselves to make a diagnosis, as a consequence of different strains of the bacteria that cause Lyme-like illness. Lyme Disease itself is defined as being caused by borrelia burgdorferi, but there are other types of borrelia bacteria that produce nearly identical symptoms or patterns, thus the difficulty with testing. There aren't tests available yet for all these "new" strains of bacteria. A physician who specializes in Lyme can often identify the infection by your history, as well as circumstantial evidence that you may have in your blood work, or other testing.
At any rate, Igenex is a good shot. It's not too expensive and will help give you confidence to procede forward. Test number 188 and 189 are the tests you want. They'll send you a form that you fill out and you give them whatever method of payment. Credit card is easiest usually. If you have Medicare, that covers the test.
Once you have the paperwork and kit, ask your primary physician if they'll draw blood for you using the test kit that you get, and then you'll send it out that day via Fedex (I'm pretty sure it's pre-paid unless you live outside the U.S.)
Igenex will send your results to your PCP within 3-4 weeks maxium.
Your PCP will need to approve the testing by filling out some information on the form that Igenex sends you before you send the kit to Igenex. You'll also need the code for Lyme Disease which is 088.81 -- the paperwork may ask for that code, and your doctor can fill it in.
That should do. You can also e-mail me for a list of doctors who will help you and provide you with a proper evaluation to investigate whether Lyme Disease or any co-infections are afflicting you (When Lyme Disease is present, there is often the possibility the tick or vector that bit you may have also passed on another type of infectious pathogen, so it's not as simple as just Lyme, it can be multiple infections sometimes. Ticks can pass on other infections "without" necessarily giving you Lyme, and some of those too are very similar to Lyme Disease in the symptoms they present)
posted
Thank you all for all of your advice and support. I appreciate all the links. It seems to me that LD is so hush hush. Hmmmmmm.....
I did get an appointment in Thursday to get the blood work done. I am thinking it may be a waste of time but hec, I might as well.
I am in search of a LLMD but my fear is spending all that money out of pocket for them to tell me that I am totally fine. That seems to be the same thing for the last 8 months so I am a little doctor shy.
Let me ask you all this......did symptoms come and go. One day you would feel great and the other day you felt lousy? I always have a constant headache but some days I have a few symptoms and the next day I will have a combo of a few more. My heart paps is what really scared me but the docs did an us and assured me my heart was ok.
I did have mri scans (3 to be exact). They did show lesions on the white brain matter but after they ruled out ms, they said it was prob related to migraines. Which I have constant headaches but nothing I conside a "migraine."
Thank you all once again for helping through this "mystery illness" thats causing me to go crazy!!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Your case is awfully suspicious of Lyme Disease based on your reports.
Watch these, it should help explain things further.
Hello and thank you for your reply. When I said that it was with my pcp. I asked what test and the nurse said she didnt know it was for Lyme though. I do believe they use quest atleast thats where they have sent all my other labs.
I have since that last post called and made an appointment with the LLMD near by. Its on Thursday the 26th at 1 p.m. After reading and getting advice from all of you, that the pcp is just a waste of time and money. The lady at the LLMD's office said that he may not even do the right test.
So, I really dont want to wait that long,however, I have gone this long whats another 2 weeks?!?!
Posts: 171 | From the land of oz | Registered: Feb 2009
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I am having such mixed thoughts about all this. I am posting my thoughts because I am sure some of you if not all had mixed emotions as well.
We have one side where I am having all these unexplainable symptoms and lyme or something similar makes sense.
Then I have days today where I feel really good aside from my headache. I then try to justify my sypmtoms. Chest pain, numbness in left arms,legs, heart paps, dizziness= aniexty
blurry vision=not wearing glasses enough
chronic fatigue= single mother of two on the go all the time
constant headaches=smoking and not drinking enough water
ringing in ears and stiff neck= hell if I know
scattered lesions on white brain matter=from migraines (even though I dont consider my constant headaches as migraines.)
The shaking of hands and legs=again hell if I know
The other symptoms just come and go on different days such as hard to swallow and sore throat.
I know all symptoms effect people in different ways. One side of me thinks I just am so desperate to find an answer that i may be making myself believe that things are worse than they are.
The other side of me says there is something wrong and not wait around until I am on my death bed to seek help.
I did cancel my app with pcp and made one with llmd. However, I did some researching and found another doc who has done alot of research on lyme. She is a ID doc. I talked to her office and they assured me she knew what to look for and run allthe proper tests. My insurance covers it so I am thinking about seeing her first if she will even take me.
I am sorry for rambling everyone. Wednesday night was breakdown night for me. I just cried the whole way home. Thank you all for all the support so far Posts: 171 | From the land of oz | Registered: Feb 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Who is the doctor Jamie. And as far as your symptoms and story go, you sound like a classic case of Lyme Disease to me. Even your "doubts" and justifications are the same story nearly every other patient here has written before diagnosis.
P.M. the doctors name,
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
There's something of a coverup in the mainstream medical community regarding Lyme, and, as a result, virtually all Lyme patients are told initially it's all in their heads. The reality, though, is that Lyme is a clinical diagnosis, and if you have the symptoms, at least a trial run of treatment is warranted.
You should check out these links for info: lymecryme.com lyme-info.net underourskin.com ilads.org
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Yup, thats exactly what I am beginning to think. My neruo wouldnt even give me a referal to get me seen by the doc because she said I didnt have it. I finally got one from my pcp. He was probably just happy to get me out of his hair.
They tried treating one symptom at a time but while they were doing that more were popping up. My pcp told me he was stumped and really didnt have anything else he could do. BLAH!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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posted
Jaimie, Your story sounds a lot like mine. My symptoms (mostly like yours) would come and go. And what I mean is, for a couple of days I would have 'flu like symptoms' where I just felt awful. Then the flu like symptoms would go away and I would feel better BUT I still had no energy to do things beyond normal work and house chores. I thought it was mono and the only reason I got Igenex tested was to RULE OUT lyme. I even said to the woman drawing my blood, 'I don't think I have lyme, I am just doing this to rule it out.' Ha-ha. So as you can tell I was in some big denial. But I think it is normal. People around me were telling me to get checked for Lyme and I would tell them that I didn't have it b/c I never got a bulls eye rash. But here I am Once I started antibiotic treatment my heart palps went away. I agree, that is scary.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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Thank you for sharing that! I am very scared but I have been praying and praying just for an answer. Now, that I am pretty sure I have one, I can atleast attempt to fix it. Not knowing is what is really scary!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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posted
Jaime, I hate to hear that you are going through such a tough time. I just wanted to lend you some support seeing as you are a fellow Tennessean. Yes, there is lyme in these here mountains...
You are on the right track and this is a great site to gather information. Best of luck to you.
Posts: 90 | From Knoxville, TN | Registered: Jun 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
JaimieB, I know what you mean about doubting you have Lyme.
I too have days where things seem fine, and you start thinking it's all in your head or maybe some weird virus that will run its course,
and then wham! you're knocked on your kiester again a day or two later.
I've been like that for the past 8 months too.
I'm counting down the days till I see an LLMD, and I swear if he tells me it's not Lyme after all, I'm just going to jump off the nearest cliff and be done with it.
I agree with you, it's the not knowing what's wrong that is the killer. If I knew what I have, I could at least deal with it and start taking steps to fix the problem.
If I don't know what's wrong, or if I'm being told nothing is wrong, then I'm just sitting here twiddling my thiumbs.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Thank you for your response. Yes, this is a fabulous site! I think I would be at the edge of a cliff if it wasnt for this site on some days.
It just annoys me when I hear, "there aint no lyme here in TN." I am asking them if they have noticed all the ticks we have??? I admit I never gave much thought to Lyme.
I always thought it was something that the adults told me as a kid. Sorta like the dont swim after you eat thing. I have pulled lots of ticks off me but I never thought about lyme or any other infection.
Thank you for the support!!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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I vowed to chain myself up to an exam table if the doc I seen yesterday was to say there was nothing wrong with me. Thank God for him, he didnt say that nor did he tell me to see a shrink. Another point for him...go doc!!
When do you see a LLMD???
Posts: 171 | From the land of oz | Registered: Feb 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Jamie.
Your story could be mine.
I had strange illnesses for years.
Finally, following Katrina and the loss of my house,
I took a nose dive.
Joint pain, short term memory loss, word finding issues, anxiety and panic, etc.
I started the rounds of doctors.
Saw an internist. Saw a pulmonologist. Saw a Cardiologist.
Nothing. Just a repeating diagnosis of "post traumatic Stress disorder".
What these docs didn't understand even when I explained
Was that I was anxious due to being so ill and having so many issues,
And not that I was anxious and making myself ill.
Finally googled my symptoms (at wits end).
Two things came up....Lyme and Lupus.
Well I knew it wasn't Lupus as I had a full ANA panel that was negative.
(I should add that I thought I had a brain tumor).
So I thought I'll just get tested for Lyme.
Not one of those idiot docs would test me.
Said we didn't have Lyme in Louisiana.
Okay.
Called my vet. Asked him about Lyme.
He said he saw it in dogs here....and rec'd a local walk in clinic.
I went and got tested (Quest Western Blot).
Thank God I had a Lyme specific band show up.
Local doc diagnosed me.
Found this site and Lymetoo referred me to my LLMD (Thanks Lymetoo).
He concurred with the Lyme diagnosis and added in bartonella and babesia.
I remember when the local doctor's office called me and said
"You will never believe this, but you have Lyme disease".
I cried in relief. I kept saying "Thank you" to the nurse calling.
Hang in there. See the LLMD.
Keep us posted.
Remember, Lyme is a clinical diagnosis and blood work isn't that reliable.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I am from NC and recently found out that I have Lyme and Ehrlichia. There is also a Southern Lyme thing that I just found out about called STARI.
Southern Tick Associate Rash Illness, I think. Anyways, your symptoms are very similar to mine.
Please just see the LLMD, my symptoms have gone undiagnosed for 20 years. I am now on disability.
Do not waste time, you are not crazy, it is not all in your head, you probably do have Lyme. And catching it so early is WONDERFUL!! Get rid of it!!
Regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
whatever you do,,,make sure your going to see a real deal LLMD,,,not a wannabe,,or heaven forbid MOST ID docs,,,
IF your in western TN(You live in a LONG state)your probably closer to drive to a LLMD west of you,,,IF your eastern Tenn. your probably closer to east coast LLMD's
I can think of only a couple different ones "I" would want to see,,,one on each end of your areas.
Dont be AFRAID to travel to get to the RIGHT "LLMD" either!! The MORE patients they have seen the better they MAY be able to help!!
You have gotten GOOD advice here so far,reread it and believe in it!!!from--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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For sure don't hestitate to travel. I am going 17 hours to a LLMD. I have wasted so much time and money on other doctors, and I am tired of hearing it is all in my head.
I will gladly drive. My apt. is in March.
Thanks, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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